tag:blogger.com,1999:blog-36888575264469888372024-03-05T23:28:01.832-08:00Sunni's StoryAt 21 weeks gestation, our baby girl Sunni was diagnosed with a Congenital Diaphragmatic Hernia. This is her story documented with all the ups and downs that she and her family will face together.wreeveshttp://www.blogger.com/profile/02694676660122028787noreply@blogger.comBlogger51125tag:blogger.com,1999:blog-3688857526446988837.post-19951885230223562842014-04-07T17:23:00.000-07:002014-04-07T17:23:34.736-07:00Its been almost a YEAR! WOW!Sooo......<br />
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I think I have been putting this off for long enough. My last post was nearly a year ago. My, my, my; how things have changed--for the better HALLELUJAH! I skimmed over the last blog just so I would know where I left off and it nearly made me have a heart attack. Last year (especially April, May, June, and July) was the worst time of my life. I literally thought I would die.<br />
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Last blog was about stents being placed. Thank God I have forgotten some details. What I do remember literally makes me sick at my stomach, my heart race, and tears flow. I was alone most of the time. In the PICU you can not eat, drink, or shower. I could shower every once in a while if I signed up for a room in the RMD (at 1pm daily) but I barely had enough energy to make it to the other end of the hall. I ate once a day and/or if my sweet cousin Kim brought me something. (If it werent for her I do not know what I would have done). I cried or slept most of the time. Sunni was not well enough to hold or play with. She slept most of the time too. I could go on and on but really this is about Sunni.<br />
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Shortly after the stents were placed they knew they had to remove them. One had slipped down into her heart and the other into her kidneys. This meant she had to have open heart surgery. The doctors were not optimistic. The heart surgeon had confidence the whole time.......but the team didnt. They told us she was already weak and that she had already lost a lot of blood and was sure to lose a lot more with the surgery.<br />
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They let us bring the boys back the night before to have "dinner" with Sunni. I felt like they were asking us to have "the last supper." The next morning before she went back I truly felt like we were saying goodbye. I prayed harder than I ever had. I was really mad at God at this time but I knew He was listening. I told Him that if Sunni was going to die within the next year or keep suffering like she had to PLEASE TAKE HER IN THIS SURGERY. Take her while she is out. And do it peacefully. I was going to be so mad at Him if he did not listen to me. I was pretty convinced this was it. It hurt.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgCA6p6FHkFzL7zEGrjKuXR_xmgoZSF8Q2eft3yTfzUaGRBXVBqS6TYCP5CZUtoo4whN7JWUVdQZiHQtooOx0TtmjTOCIeHAXNvNMdbWpdpw18YqGYUyCrXLRKmu0oFKoTXatVoTbBFnio/s1600/heart1.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgCA6p6FHkFzL7zEGrjKuXR_xmgoZSF8Q2eft3yTfzUaGRBXVBqS6TYCP5CZUtoo4whN7JWUVdQZiHQtooOx0TtmjTOCIeHAXNvNMdbWpdpw18YqGYUyCrXLRKmu0oFKoTXatVoTbBFnio/s1600/heart1.jpg" height="320" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Right Before Surgery</td></tr>
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What seemed like the longest surgery she had been through we got news that her surgery went good. All stents were removed successfully and they did not have to do as many things as they originally thought. I could not believe it. I was happy and mad at the same time. When I first saw her it was so hard. She looked terrible. Her surgery was a success in their eyes but I was looking at my baby with lines coming out of every appendage. A chest wired and sewed up. Scars everywhere. It hurts to even think about now.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjAWQpW36mAcQu9jSFkL8HeFgG3TTgctkN8fdZGTe8Zz9wDFwIgktJhXAqvy1ST2dmUwf0ebwN_mjOfzzLDtGv_5fXXyaNke4TXYAzl1RtdM2veIhu5ziHhcFxLuZclgFnm9cy8l-fGMGc/s1600/heart2.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjAWQpW36mAcQu9jSFkL8HeFgG3TTgctkN8fdZGTe8Zz9wDFwIgktJhXAqvy1ST2dmUwf0ebwN_mjOfzzLDtGv_5fXXyaNke4TXYAzl1RtdM2veIhu5ziHhcFxLuZclgFnm9cy8l-fGMGc/s1600/heart2.jpg" height="320" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Shortly After</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Drips Galore</td></tr>
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What made me the most mad about it was she would never had to go through it if those stents werent placed. They never had every teams "ok" or agreement to place them in the first place. It was so maddening. She recovered fairly quickly from this surgery and was moved back to the general floor were we spent the rest of May, June, and July. It was a battle of trying to get her on the right amount of milk and off of oxygen. She had another surgery in June to do a fundo and a few other things.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhz68utCfABVOmkgqsy2y6NViJp86J9sYVE565gZqawH4sSPCZMHboWd2mkGxxgw53LJUlpgI6WMYbqAbFiZPiuLHGnEf6Srg3qLjrpT4RDweLN6ZICavQTRj9h4EsxKO_Gu9hcitwSS3c/s1600/heart4.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhz68utCfABVOmkgqsy2y6NViJp86J9sYVE565gZqawH4sSPCZMHboWd2mkGxxgw53LJUlpgI6WMYbqAbFiZPiuLHGnEf6Srg3qLjrpT4RDweLN6ZICavQTRj9h4EsxKO_Gu9hcitwSS3c/s1600/heart4.jpg" height="320" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Looking MUCH better!</td></tr>
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Next blog will be about how she is now......This one has exhausted me. Sorry.<br />
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PS..Dear Raelyn, thank you for all your sweet comments. I saw them all. And I was very selfish not to write anything back. I have been trying to heal since I got back in July. I hope you forgive me :)<br />
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<br />wreeveshttp://www.blogger.com/profile/02694676660122028787noreply@blogger.com4tag:blogger.com,1999:blog-3688857526446988837.post-24719243476218523072013-05-18T14:39:00.003-07:002013-05-18T14:39:38.632-07:00Not prepared....Yesterday (May 17) Sunni had 3 stents placed in her SVC; a vessel going into the heart. During the procedure she had to get a blood transfusion due to blood loss which is not that uncommon. They thought they had gotten them successfully placed as seen by ultrasound of some kind. After the procedure they were not able to get Sunni off the ventilator.<br />
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Supposedly they did not anticipate her having to go back to the PICU afterwards but I believe they had to have known. They told us before they took her that the procedure was going to take about 4 hours and it did. They said with her being intubated and sedated that long they did not feel comfortable taking her off. And then they decided that they were going to have to keep her sedated because they did not want her moving her leg.<br />
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The size of the incision on her left leg (that is where they gained access) was too big and if she bent it and moved it around it could cause more bleeding. <br />
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Also the night before the procedure her picc line stopped drawing back blood. Several days before that we noticed that her picc line leg was swollen and turned red when she was upset and the other leg stayed normal. It also was also hard to get blood at times and not others. They did an ultrasound to check for clots at that time and were unable to find one. Right before they took her back for the procedure the picc line had totally come out and was leaking everywhere. During the procedure yesterday they found a clot in the vessel but were able to place the line back in. It however can not draw back blood. Before she ever went I asked probably 6 people to PLEASE not bring her back without a line that draws back. Go figure! <br />
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So the answer to that dilemma was to put an art line in her wrist. Sunni does not had a good history with art lines....they do not last but a few days. So when that stops pulling back I am not sure what they are going to do. For the clot at the picc line site they are putting her on a constant heparin drip hoping to get rid of it little by little.<br />
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Currently she has a ton of drips going. I will post a picture to show you. She is getting SOME formula, TPN, lipids, sedatives, and a paralysis drug to keep her still. Since she is on a paralytic she has a foley catheter as well. And that is not even including the 15 other meds she is on.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEig8oC5imo2H8o8aCkq-8ShPsNds4sxAm8a_gjfCpjjTn6QhU3T0qtNdjJOBdq8LXTpcjbiHkT0NMPduKLcaugoNfC4dGs8MNqZ2jLUuB9iqry-Zg83O26SY15SS6Sosi2GQSmSIT2GnXk/s1600/stents2.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEig8oC5imo2H8o8aCkq-8ShPsNds4sxAm8a_gjfCpjjTn6QhU3T0qtNdjJOBdq8LXTpcjbiHkT0NMPduKLcaugoNfC4dGs8MNqZ2jLUuB9iqry-Zg83O26SY15SS6Sosi2GQSmSIT2GnXk/s320/stents2.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">The only time she was on this many drips was on her first week of life.</td></tr>
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She is very, very swollen. The picture does no justice to actually seeing her. She is probably at her biggest right now. She is connected to more tubes and wires than I have ever seen her on. We were told she would be extubated today but her xray did not look good and neither are her numbers or gasses.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh7CXZ4DvoV4uKL27HARRpZcabSKqvq8MIof5i7RgaR1AEmn_FNkV7T2UOOfBwDwbFRUNf3Xzg4zEqDHFtvD3mTFv1r53sOW2r38eEgj3BWaKNU1N9t6F-Hsdur0vkN49OybMFFGF8Fgos/s1600/stents1.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh7CXZ4DvoV4uKL27HARRpZcabSKqvq8MIof5i7RgaR1AEmn_FNkV7T2UOOfBwDwbFRUNf3Xzg4zEqDHFtvD3mTFv1r53sOW2r38eEgj3BWaKNU1N9t6F-Hsdur0vkN49OybMFFGF8Fgos/s320/stents1.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">So swollen. Poor Angel</td></tr>
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They made it sound like this procedure was going to be a piece of cake for her. Supposedly they did not even intend on her having to go into the PICU. We are upset because it seems like she is at her worst and we were definitely not prepared for this. They are allowing our boys back but only 2 people can be at the bedside at a time. So we are still not able to be all together. If we spend time with the boys then Sunni is alone. <br />
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I would not be surprised if she is not table to have her surgery next Thursday. That means even longer in the hospital. I just thank God that Shawn is here and I am not having to do this alone. Thank you for your continued prayers....we need them now more than ever.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjO-SFa4-IgAVdbzghkIx7nyccwdaK7HBApMuG4sjl6spEKxXC7l1mXlVO3Y7FgmPQ4iHL4jRFOK0nb4OPACWdbskX7STPKtmxg5x6aUK10QTHBnukKTkyr0eufc71ZYz_MldcE-Zwpqlk/s1600/stents3.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjO-SFa4-IgAVdbzghkIx7nyccwdaK7HBApMuG4sjl6spEKxXC7l1mXlVO3Y7FgmPQ4iHL4jRFOK0nb4OPACWdbskX7STPKtmxg5x6aUK10QTHBnukKTkyr0eufc71ZYz_MldcE-Zwpqlk/s320/stents3.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">3rd time in the PICU since April 8</td></tr>
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<br />wreeveshttp://www.blogger.com/profile/02694676660122028787noreply@blogger.com20tag:blogger.com,1999:blog-3688857526446988837.post-61711192344039153812013-05-15T11:28:00.000-07:002013-05-15T11:28:01.071-07:00Stents & Surgery....&FAMILYSo in the last blog I was not very detailed because SO much has happened in the last month and a half. I did mention that her head swelled up and she was moved back to the PICU. Her heart rate was elevated and it effected her breathing rate too. Long story short she has a clot in her superior vena cava (SVC)--which is the main vessel that takes blood from the head into the right atrium of the heart. Sounds serious right?<div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjV6k9MMKuIZn_6TPrtwSic4GmHD0-1avv7mTjo0LYLyDXasfgNGzLiPsiV2ZVIpk0I7GRvSY_d-Y-XDY157JkBsOot76bgo6iWMWWWUi_8zRL5wR_RCC310vdC18S5xSmyrrZsZOtVzUo/s1600/heart.png" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjV6k9MMKuIZn_6TPrtwSic4GmHD0-1avv7mTjo0LYLyDXasfgNGzLiPsiV2ZVIpk0I7GRvSY_d-Y-XDY157JkBsOot76bgo6iWMWWWUi_8zRL5wR_RCC310vdC18S5xSmyrrZsZOtVzUo/s1600/heart.png" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">See the large blue vessel at top left?--That is the SVC</td></tr>
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They took her to interventional radiology. They shot a dye into her to get a picture of the anatomy of her veins to see exactly what was going on. Come to find out she has many clots in her chest and her whole left side was totally occluded. When that happens your body makes collateral veins to compensate the blood flow. They tried breaking up some of the clots but were not able to because they were all old clots and had already attached themselves to the walls of the vessels. When that happens there is nothing they can do.</div>
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They also attempted to break up some of the clot in the SVC but once again were not able to. They talked about putting a stent in to help that flow but decided against it. Since she is a baby and will be growing she will have to have several stents placed as she grows. Also stents can still clot and even break inside. Instead they decided that the blood thinner she was starting would keep what flow she did have from getting any worse.</div>
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The reason I recapped the whole scenario is because it is happening again. Her head is swelling and the superior vena cava is having very little to no flow. I am awaiting cardiology to show up and explain why now they want to do a stent. I am guessing it is because it has become more of an emergent situation but I just want to hear why they have changed their mind. A different cardiologist is on service so maybe it is just a difference of opinion. I will update Sunni's fb page if we decide to go ahead with the stents and then later blog about it after it is done.</div>
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On May 23rd, if Sunni is stable, she will be having a pretty major surgery. Anytime her abdomen is opened it is risky due to all her previous surgeries. She will have a nissen fundoplication where the top part of the stomach is wrapped and sewn tightly around the esophagus. This will help tremendously with her throwing up. It usually makes it impossible to throw up. The reason she has not had this sooner is because her stomach has never emptied. She has a stomach emptying test 2 weeks ago and the contrast went through for the first time at a pretty normal rate. HALLELUJAH! This is BIG news for Sunni. PTL!</div>
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She will also be having something done to her pylorus. They will not know until they get in there what to do but they want it to be wider so that food could easier pass through. She does not have pyloric stenosis but the surgeon just wants to give her the best chance possible to be able to eat through the stomach instead of the jejunum someday. Some of you may have read that she was fed (pedialyte) to her stomach for the very first time a few days ago. That was very short lived as she started vomiting large volumes. That was the very first time her stomach had any type of food in it.</div>
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She will also be getting another button/tube put in her abdomen. They want her to have separate G & J tubes. So instead of having one button/tube she will have two. I am not really fond of that idea AT ALL but I really trust this surgeon and GI doctor so I will go with it if they think that is what she needs.</div>
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So that is what is going on in the roller coaster we call life. The only GREAT news I have is that my husband and boys will be on their way to Houston TOMORROW! Shawn is taking a leave of absence from work. It will not be easy financially but it is what our family needs right now. As strong as I may be I just can not do this alone anymore. I need my boys (all 3 of them) and they need me. I have such a peaceful feeling right now even through all the drama here at the hospital knowing we will be a family for 30 days. My heart is happy right now.</div>
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I can never say thank you enough to the people that have supported us since day one, who have prayed for Sunni, and kept up with us. It means the world to my husband and I. <table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
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<tr><td class="tr-caption" style="text-align: center;">I do not like this pic--but this is what she looks like when her head swells which is worse on the right side of her face than anything.</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">I love her Sunny disposition!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgDYrJl0GdM9fwSXO89XqebketusSUZZO5dzwYApJalw3gjZwnaGto1P_8FSSWfSmwC_tFrrw3l-tcMZ7yQ98pivzSYEjhyphenhyphenxX_oiQnuFeiNgqGSNqNSSAE8Ohwf25GF7UyzNA4Ws3m0MXg/s1600/sunnibun3.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgDYrJl0GdM9fwSXO89XqebketusSUZZO5dzwYApJalw3gjZwnaGto1P_8FSSWfSmwC_tFrrw3l-tcMZ7yQ98pivzSYEjhyphenhyphenxX_oiQnuFeiNgqGSNqNSSAE8Ohwf25GF7UyzNA4Ws3m0MXg/s320/sunnibun3.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">This is my favorite picture of her to date. Yellow is her color.</td></tr>
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wreeveshttp://www.blogger.com/profile/02694676660122028787noreply@blogger.com1tag:blogger.com,1999:blog-3688857526446988837.post-71028073249469350522013-05-12T20:30:00.001-07:002013-05-12T20:30:26.606-07:00It's been a While....It seems like I am always apologizing for the lack of updates....but this time I feel like I have a good excuse. Since coming home from the hospital (and going straight back) life could be described in one word; hectic. I will just start from the beginning and give you a brief(ish) Cliff Notes version of our lives since the last post.<div>
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We brought our little bundle of Sunni home on March 7, a day after she turned 5 months old! I knew home life would not be easy but I had no idea it would be that hard either. When we first arrived home my youngest son had strep throat so we had to keep Sunni upstairs with her older brother and daddy and I took care of him. Shawn happened to be on his 7 off (PTL) so we took turns <strike>sleeping</strike> watching Sunni sleep. Shawn bought a cot and we "sleep" right beside her in her room. </div>
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She was on 6-8 meds at a time which are given around the clock. She is also on continuous feeds so you have to keep that milk bag filled up every 4 hours. So as you can imagine it was not conducive for sleep. We were on the nicu's med schedule when we first came home which was a nightmare because none of the meds were given together which kept us up a lot at night. We finally had a home health company come and help us 5 days a week for 8 hours a day. They helped up group her meds to where we only had to get up at 10, 2, and 6 for meds. And we TRIED to get the milk on that schedule too but it did not always play out that way. I think Shawn and & I were both missing the nicu very badly. I never thought we would!</div>
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Once we got home Sunni started throwing up more and more and more to where it was about 30 times a day and it was burning her cheeks and her mouth would bleed. That precious girl would still smile between the throwing up. We spent 2-3 days a week at the doctors offices, hospital, and specialists the month we were home. We also made a trip to Houston around Easter to try and figure out the throwing up.<br />
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It was a very hard month at home but at the same time it was good. I got to enjoy all three of my kiddos and watch them interact. I got to say hi to my husband outside of the hospital setting. We were all under the same roof. </div>
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On April 6 my super wonderful friends threw Sunni & I the best baby shower EVER. She made a haul with tons of cute clothes, diapers, toys, and accessories. A lot of preparation went into the shower and a lot of love. It meant the WORLD to me. </div>
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Sunni was throwing up all day every day at this point. She was very miserable and not really herself. She was not happy like she had been and I noticed that her head was getting bigger and bigger. It donned on me after the shower that Sunni<strike> probably</strike> had hydrocephalus. We decided that the next day we were going to have to do something. Shawn was going to drive Sunni all the way to Houston by himself. Thankfully one of my friends asked if we had heard of Care Flite, which is kind of like ambulance air. We called them and they came to pick Shawn & Sunni up and flew them to Houston. Thank goodness for that! That would have been a really miserable car ride.<div class="separator" style="clear: both; text-align: center;">
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So Sunni was admitted to the hospital (same one she left the month before) on April 7. They immediately found the hydrocephalus in a CT scan and then she had a fast MRI to confirm. We had hoped that that was why she was throwing up so much because that is one symptom. </div>
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On April 9 she had brain surgery. They did a "Third Ventriculostomy." <a href="http://neurosurgery.ucla.edu/body.cfm?id=428">http://neurosurgery.ucla.edu/body.cfm?id=428</a> Read that if you want to know more about it. It is an alternative to having a shunt placed. They decided a shunt would not be ideal for Sunni since they typically drain to the chest area or abdomen and those are both trouble spots for her.</div>
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After surgery she came back NOT herself at ALL. She was screaming frantically and scared. She did not want to be touched or even talked to. She was having a hard time breathing and started getting fevers. Shawn & I tried really hard to comfort her but she was not having it and was in a lot of pain. We were very worried. When she was not throwing a fit (which she has never done to this extent at ALL) we would try to get her to smile and she would not even grin. We kept telling the doctors this is not how she is and is not the same baby we sent in to that OR. </div>
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If you have been following me on fb you know that we have been having a LOT of problems with this hospital and after done here we will never return. NEVER. Just so you know the NICU here is fabulous and the picu has MUCH to be desired. </div>
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This month has been by far the WORST of the last 7. It has been far harder than her ecmo days.</div>
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The neuro surgeons would not acknowledge our concerns and said everything was normal. She started getting the fevers so her general team wanted to do a spinal tap and put in a picc line at the same time. The neuro surgeons said not to do the spinal tap because the findings would look funny since she just had surgery on her brain (everyone's does afterwards). They did it anyway. So yes, they thought for 3 days she had meningitis and it turned out negative. During the wait it was like a battle between the team and the surgeons and whoever won would get to celebrate. Then her head started swelling due to a clot in the vessel that takes blood from the head to the right atrium of the heart. This was caused by her being more susceptible to clotting and because if the picc line they put in her arm the day before. The maddening part about that was that I did all I could short of begging to not get the picc line in her arm AND I told them she had clotting trouble in the past and the doctors would not listen to me. Argued even.</div>
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She was moved back to the PICU after her head started swelling. At this time they did not realize the clot was due to the picc line in the arm. When the finally figured it out the doctor told us they needed to move the picc line from the arm to the groin. Since she was going to have to be intubated and sedated for that they were going to coordinate it with an mri. By coordinate we "thought" they meant as in coordinate with time so that she would be intubated for the littlest time possible. Instead she was intubated at 9 in the morning, the picc line was done right then and she was not taken back for mri until 10 o clock that night! I was FURIOUS!!</div>
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When she finally got back from MRI they could not get her off the ventilator because her gasses were bad. She was not extubated til the next morning. I made sure they knew <strike>my frustrations</strike> how angry I was. I am actually still fuming about this (3 weeks later) and they have not heard the last of it. She still has not been able to get off oxygen. Their excuse was that emergencies came up. There is more to the story but it is not important. That night I told them I wanted to talk to the highest up person they had at the hospital. They told me someone was coming but they never showed up. I tried calling a patient advocate but they had incorrect information written on their bulletin board. So the next morning I was sure to be up and ready at 8 am. </div>
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We ended up having a meeting with the nurse manager, a case worker, patient relations and a few others. We had been very unhappy with the whole hospital stay and we just layed it all out on the table with the major complaint being what happened the day before. We were assured we would see change and then the doctors came in. One was the attending that Shawn yelled at about an hour prior. I thought they were there to address the issues we had been having with them instead we were hit with devastating news. Sunni had another stroke and it had done some more damage to the brain. There was also some bleeding in the brain. I was upset and mad. I will never know if all of this could have prevented but I decided not to live wondering so I am just moving on.</div>
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After all of this they wanted to start blood thinners to try and help the clot. That came with the risk of possibly making the brain bleed worse but they believed that the blood could be residual from her surgery. They started heparin and kept an eye on it through ultrasound. After a few days they decided it was not helping enough so they wanted to send her to interventional radiology to get the anatomy of all her veins and to possibly remove the clot. When they got in they found that the main veins in her left side were totally occluded and had already made collateral veins. There was nothing they could do about the many clots because they were old (formed over a long period of time) and were now a part of her veins. </div>
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That news was pretty hard to take as I was by myself and not really sure what it all meant. They stopped heparin and started Lovenox which is a daily injection of blood thinner that she will be on long term. They started lasix, a diuretic, 3 times a day and that took the swelling right off. In fact she was very dehydrated. She had lost 3 pounds! They did not even weigh her until I asked. She looked terrible. She was able to get off oxygen for a few days at this time due to being so dry. We were told on a Thursday we were getting out of the picu. In case you are wondering why is sucks so bad in there it is because the nurses are not friendly or helpful, the doctors do not listen to parents AT ALL, you can not eat or drink, you can not shower, it is loud, and just a high stress environment. There is no sleep in the picu. This was very hard on me. Definitely the worst time of my life.</div>
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So Thursday came and went....then Friday, Saturday, and Sunday, and Monday. Monday night I had had it. I decided to find out why Sunni was still in the picu. She was not on oxygen and did not require "intensive care." Also--Sunni's GI issues were ready to be tackled now that everything else had kind of went away. GI had not came to see her in 5 days. I was really upset. It seemed to me like we were shoved to the side. I asked to talk to the charge nurse and a doctor....I was not my sweet self, that is for sure. An hour later we had a room; and an hour after that GI came by. Squeaky wheel gets the grease, I guess. And then the next morning Sunni's pediatrician accused me of having hospital psychosis and told me he was going to send someone in to see me. (No one ever showed up).</div>
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So since all that drama GI has exhausted every possible medicine trying to figure out something to help her throwing up. Nothing has worked. So next week we are looking at surgery. I think we will get more of a solid plan tomorrow so as soon as I do I will post again. (Maybe, lol). I talked Shawn into letting me bring the laptop because I was informed people needed a blog update. Sorry Yall! If you do not follow Sunni's Story on fb please do. It is a lot quicker to update on. When I start writing things with my iphone it is really hard to read.....I am sure you are all nodding your heads in agreement.</div>
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I got to go home last week and spend the week with my boys while my husband stayed with Sunni. It was MUCH MUCH needed one my end and theirs. I feel a lot better now. Hopefully this surgery will get us home.....soon!</div>
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Sorry for the lack of update and for not giving up on us. We appreciate your support, as always.</div>
wreeveshttp://www.blogger.com/profile/02694676660122028787noreply@blogger.com3tag:blogger.com,1999:blog-3688857526446988837.post-40793317739818295802013-02-28T15:38:00.002-08:002013-02-28T16:48:20.131-08:00The "H" WordHey strangers! I feel like it has been forever since I have updated. Sometimes updating this blog feels like a chore. I have been keeping everyone somewhat updated on Sunni's Facebook page so hopefully you all aren't too upset with me :)<br />
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Sunni is doing really good! Since the last blog she has been making all progress. She got to full feeds and got to be taken off of TPN and lipids. *Hooray!!* She is still having a lot of output from her g-tube but is throwing up less.<br />
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She had her surgery this past Monday, February 25th. She went from a G-tube to a GJ-tube. I have explained this before but it is basically a tube that goes through her stomach and bypasses it to deliver food (formula) straight to the small intestine. Hopefully one day her stomach will decide to start working and she will be able to at least get food into her stomach but only time will tell. Sometimes when kids get bigger and more active motility increases and that is possible but Sunni has a pretty extreme case. The surgery took 2.5 hours when typically it only takes 15 minutes for a person/baby with a normal anatomy. So if/when the tube gets pulled out by accident or something happens to it we are going to be in BIG trouble! I have already been having nightmares over this, literally.<br />
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So before surgery we knew that going home is going to be coming up pretty quickly. They had told us that after surgery she needs to get back on full feeds and needs to come down to 1 liter of oxygen before she can go home. She was on 2 liters at the time and we were not real sure how easy it would be to get her to 1. So the day after surgery they took her down to 1 and she rocked it! The next day they went down to .5 and again, she did well! So TODAY they decided to see if she needed her cannulas at all so they turned it off. So far she has been doing great! I have very mixed emotions about this. I am SO happy and thankful that she is breathing room air BUT I do not like the thought of going home without oxygen at least for emergencies. Sunni is unpredictable. You just never know. Going home is scary anyway but going home without all the gadgets and monitors that she has had since day 1 is terrifying. <br />
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Since she has met her goals the plan is to go home next week if everything continues to move in the right direction. We do not have a day yet. Shawn and I are so ready--and the boys too! I have said it a million times; even though we are ready and excited we are also scared and concerned. Sunni will not be a normal baby. We are going to have to be very cautious with her. She will be very susceptible to sickness. She will always have respiratory issues. The everyday cold will hospitalize her. The thought scares me to death! With that being said we are going to have set rules for our home to protect Sunni especially during cold and flu season. I know my friends and family will understand because they do not want us to be put right back in the hospital after this 5 month stay. I have really dreaded typing this since day 1 but it must be done.<br />
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*All visitors must have a flu shot and have had a dtap within 10 years. Absolutely NO sniffles even if you think it is allergies. No kids under 14 until after flu season. After flu season any kids that come over have to be current on their immunizations. Smokers have to wear a gown. Everyone must wash their hands and arms 100 times then sanitize. Okay, maybe only 2ce.*<br />
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I am not wanting to offend anyone but just protect my little girl that we have fought for. I wish things did not have to be this way. I did not know how fortunate I was having two healthy boys. Our lives have been changed forever. BUT she is worth it.<br />
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Sunni is a fighter. Her fight will never be over unfortunately. But we are ready to move on to the next chapter. I want to thank each and every one of you who have been on this roller coaster with us since day 1. We would never have made it this far without your love and support. So many of you have prayed for Sunni and my family and we could never thank you enough. You diligently kept up with our story; cried with us, prayed with us, smiled with us, and rejoiced with us. Thank you from the bottom of my heart for that. You are the reason I was able to stay "strong" through this. We love you and Sunni loves you.<br />
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By the way---For some of you that have no idea what the H word is--its home :) lol, kidding. They say not to let the baby know the plan or else they might act up so that plan gets ruined. I am not that superstitious but I am not taking the chance either!<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhNNTEbvoxmF9HABaYTDJsJRKFe9K3_tjISXVrVHeAujYz9sBV0vqeUgzrfE-tunMzhQw6d6aPbzHv_Q-KnqKXuyYNvQSvemWcPkxjSLrSwxocmBDzrqXaOoh7E3jVKEzTtccQM6AE3Yvk/s1600/sunni11.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhNNTEbvoxmF9HABaYTDJsJRKFe9K3_tjISXVrVHeAujYz9sBV0vqeUgzrfE-tunMzhQw6d6aPbzHv_Q-KnqKXuyYNvQSvemWcPkxjSLrSwxocmBDzrqXaOoh7E3jVKEzTtccQM6AE3Yvk/s400/sunni11.jpg" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Happy Valentines Day 2013</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiwIwftHnTRr2IWgvLw75Jgwgk7IllZPDTI0pbbQQPO4cx39cCZPxaFhzE5sDVcOtl0RXwM0NzGAQJvrTaK18qi5VbkR9IwQ2Ju6nAzvTuiTCCP3seSvewzag-qE751HsIASlAvbpSIeOU/s1600/sunni10.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiwIwftHnTRr2IWgvLw75Jgwgk7IllZPDTI0pbbQQPO4cx39cCZPxaFhzE5sDVcOtl0RXwM0NzGAQJvrTaK18qi5VbkR9IwQ2Ju6nAzvTuiTCCP3seSvewzag-qE751HsIASlAvbpSIeOU/s400/sunni10.jpg" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Loving on her Monkey</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjDqJMiHdTTsfeOZNGOjBrin5f7ab2Ur78rY5NpLLm98MmswyAzLM866yCRj0Ljd_A0xJ8tX4z0yUqNmovvzNJDEq53xejTLy0SZ0uTvcbCCCXNW6dIk_2qIeicYtYQu5yzMNJH3VFw9QY/s1600/sunni4.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjDqJMiHdTTsfeOZNGOjBrin5f7ab2Ur78rY5NpLLm98MmswyAzLM866yCRj0Ljd_A0xJ8tX4z0yUqNmovvzNJDEq53xejTLy0SZ0uTvcbCCCXNW6dIk_2qIeicYtYQu5yzMNJH3VFw9QY/s400/sunni4.jpg" width="225" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">No Cannula! And BOTH shoes on! :) </td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiSRcah09B2DHPJtC1BO1D_Ii5vT5Mu84UcaIp5Y4mGw8iFThiE8aJfw2gzqFOQydffzX2qZA-4Nh7qqnKp867hOmCMX76btBvx76NMvuAm-0Dbrc1q8MFLo8ht5v-1xlPXBbrmfEk4tJs/s1600/sunni5.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiSRcah09B2DHPJtC1BO1D_Ii5vT5Mu84UcaIp5Y4mGw8iFThiE8aJfw2gzqFOQydffzX2qZA-4Nh7qqnKp867hOmCMX76btBvx76NMvuAm-0Dbrc1q8MFLo8ht5v-1xlPXBbrmfEk4tJs/s400/sunni5.jpg" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">GJ tube</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEik42lSZ4mBNRnbdBcnvmX4nOO8FpKilnb8GCySm-6x-vm1oX3tlMfH_o21pHsLJt4reMW2kWci1TgqPDtxXpi1rvdBXxYNeBigUwX0WiILzEF4j86lR9qR9n73SY6jkvrgXNIxMNhd16w/s1600/sunni8.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEik42lSZ4mBNRnbdBcnvmX4nOO8FpKilnb8GCySm-6x-vm1oX3tlMfH_o21pHsLJt4reMW2kWci1TgqPDtxXpi1rvdBXxYNeBigUwX0WiILzEF4j86lR9qR9n73SY6jkvrgXNIxMNhd16w/s400/sunni8.jpg" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">So cute--Getting an EEG</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh8DBuiGEbFKo_FV2vgnzPWGSxgMy6ULd2MKgFwcC6IHExRYQ2sitcd6i9Ze_7JX3kHKPXNB6Nbo7d3pGom5xVFyzlFFj7uC0rNgh4s0mWTrrpwjgaCXd_pm0J1PsknA2JPW7Y-pcn2lIk/s1600/sunni7.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh8DBuiGEbFKo_FV2vgnzPWGSxgMy6ULd2MKgFwcC6IHExRYQ2sitcd6i9Ze_7JX3kHKPXNB6Nbo7d3pGom5xVFyzlFFj7uC0rNgh4s0mWTrrpwjgaCXd_pm0J1PsknA2JPW7Y-pcn2lIk/s400/sunni7.jpg" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Momma's Girl</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjh-v5gYR0Ift-FO4j988XR28GHxbMWRmNJy3JNSoeHHBxxUdiTABrmno9EpgtUFTrINcqsrM67LRGbeQgn1Lih8-k6K08wTJt-7d6cW1ZFxr358TIoairj7hZJDjOKqQ0IRiy-aD-HxnE/s1600/sunni6.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjh-v5gYR0Ift-FO4j988XR28GHxbMWRmNJy3JNSoeHHBxxUdiTABrmno9EpgtUFTrINcqsrM67LRGbeQgn1Lih8-k6K08wTJt-7d6cW1ZFxr358TIoairj7hZJDjOKqQ0IRiy-aD-HxnE/s400/sunni6.jpg" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Headed down to surgery in her Wagon</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhKQXYC_VYeMUWVyjYrBbOImPAlXVRPMqaiHh6cdP7RKSF-aXqxC901m8uUkweUIpDPqY-s1XJlYpCJ6tAetCNULBwCFNVLKQvhkloU_BWS_tntk32uoVWWNMomS-Weo3oMmfXByyogMWI/s1600/sunni9.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhKQXYC_VYeMUWVyjYrBbOImPAlXVRPMqaiHh6cdP7RKSF-aXqxC901m8uUkweUIpDPqY-s1XJlYpCJ6tAetCNULBwCFNVLKQvhkloU_BWS_tntk32uoVWWNMomS-Weo3oMmfXByyogMWI/s400/sunni9.jpg" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Sweet, Sweet Sunni <3</td></tr>
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<br />wreeveshttp://www.blogger.com/profile/02694676660122028787noreply@blogger.com8tag:blogger.com,1999:blog-3688857526446988837.post-3871024587965038212013-02-06T07:11:00.004-08:002013-02-06T07:11:56.877-08:00Praise Report-4 Months!Yes! A praise report! I have been waiting a LONG time to be able to write a true praise report. Sunni has had a good WEEK! Not just day---but week! It is the first time in her life that she has had a good week. <br />
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She is still throwing up several times a day but that beats the 10+ that she was before! She seems to be a lot happier and is throwing smiles out like crazy! Hallelujah!<br />
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My parents came to Houston to visit Friday (Feb 1). It was a great time for them to come because she was in a great mood, smiley, and having some of the best days of her life. They enjoyed seeing her and I certainly enjoyed them. I actually came home with them and now Shawn is on his way to Houston so he can visit with Sunni and I can have boy time.<br />
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SO--As I wrote in the last blog we are just waiting on GJ tube surgery which could be in the time frame of February 11-March 17. The reason a date it not set yet is because they are waiting on her Gtube to heal. I will update as soon as I hear when the surgery might be. I am SO ready for her to come home but so very scared and do not want to rush things.<br />
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The only real significant thing that is happening right now is feeds. The doc wants to get her off TPN and lipids ASAP. TPN has given Sunni the nutrition that she needs and has not been able to get with formula/breastmilk since she was born. TPN also has negative effects on the body. It can cause liver damage and other things that I started reading about and stopped because I did not want to freak myself out. So right now she is on 14 ml's/hr and she needs to be on 24/hr before they can turn off the TPN. They have been going up by one in the morning and another one at night (so 2 a day). If all goes well and she is still tolerating going up she should be able to get to 24 by Monday. I am so excited about this! I can not wait to get rid of that yellow bag!<br />
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Today she is 4 months old! Wow! Where has the time gone?<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgabL7p8xHPvceh51WwxBXwgUf6H8eJkcI3czkq2aX5Bq3tb20jiQ7nTMZlToklqzNzzndms9XCKW0XOLc4oHZ5xsVp7s9-mzsQZRokYH2qs3mchnv8sQ9egeoxI2wAQ2docae-2nXf1l0/s1600/sun12.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgabL7p8xHPvceh51WwxBXwgUf6H8eJkcI3czkq2aX5Bq3tb20jiQ7nTMZlToklqzNzzndms9XCKW0XOLc4oHZ5xsVp7s9-mzsQZRokYH2qs3mchnv8sQ9egeoxI2wAQ2docae-2nXf1l0/s400/sun12.jpg" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">She discovered her tongue!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi4Vc_zJSavRx6KkK2PCu6DkNn6gD0a4tQtcK2ba80DuGYQZb23ZEn-jKplQd4pj2uVWT4p88qyJFSmYMz5ZbC1YiBVi1He1SBuNNrZGNxkEKsOAzxmYkr87rfRThEQWVd8R3qOIYRR914/s1600/sun11.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi4Vc_zJSavRx6KkK2PCu6DkNn6gD0a4tQtcK2ba80DuGYQZb23ZEn-jKplQd4pj2uVWT4p88qyJFSmYMz5ZbC1YiBVi1He1SBuNNrZGNxkEKsOAzxmYkr87rfRThEQWVd8R3qOIYRR914/s400/sun11.jpg" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Big smile!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj2dvlC4TBxPAIAcl7BLuXbkBtte2t9TNG900izD6TyKjieoMJJpQQ_70Kx0xx7755hRaqZDWpxvrx63yfenpmz7YIiDtTV5WbhYyBD438M7Jko2-oHuHCO6ZZawQ0hY97ix-S8qFZa-Rk/s1600/sun10.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj2dvlC4TBxPAIAcl7BLuXbkBtte2t9TNG900izD6TyKjieoMJJpQQ_70Kx0xx7755hRaqZDWpxvrx63yfenpmz7YIiDtTV5WbhYyBD438M7Jko2-oHuHCO6ZZawQ0hY97ix-S8qFZa-Rk/s400/sun10.jpg" width="225" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Smilin' for her Nurses.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhZLybqs7HLiqe9An3UjCIwZNEe72a6yb6evzgkMPcQryWCqYP3JqVxvjWWDNQOH6fih0WSczl29sRtJ-90P0ziO6Bx1JioSeNp-iFfQsTIcmmceKoCadiIBzFk-0srX8Zwl5Ulg1dgP6A/s1600/sun13.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhZLybqs7HLiqe9An3UjCIwZNEe72a6yb6evzgkMPcQryWCqYP3JqVxvjWWDNQOH6fih0WSczl29sRtJ-90P0ziO6Bx1JioSeNp-iFfQsTIcmmceKoCadiIBzFk-0srX8Zwl5Ulg1dgP6A/s400/sun13.jpg" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Chillin' in her Boppy</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhGaZF7JJplB8NFHV6mtbYzxb53DaAbzKo0WqE977tGj33gb_Rut-3llZ9ftxXg6R_Xe9iRAGKJg3X949TMF_dPuHxxpAyW4_FkF4Nanpo_rG4jbJwKBXZORupIjFPQi030HMTtduTdua0/s1600/sun14.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhGaZF7JJplB8NFHV6mtbYzxb53DaAbzKo0WqE977tGj33gb_Rut-3llZ9ftxXg6R_Xe9iRAGKJg3X949TMF_dPuHxxpAyW4_FkF4Nanpo_rG4jbJwKBXZORupIjFPQi030HMTtduTdua0/s400/sun14.jpg" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Attempting to make Handprints...</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj_zalQJSiKoo5ozwgjXLZbsKyQ6CpaQJV4AwioOH_Z3m6f1E7MGXs6BDuDBuM7TzcGIhoe2k87IhPNKcCIYiqGPZcKGUnW_nPdn51sN5z3uYA1m5kCrL6gnfkNL1-lGt_1SM3gTIUVrIo/s1600/sun16.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj_zalQJSiKoo5ozwgjXLZbsKyQ6CpaQJV4AwioOH_Z3m6f1E7MGXs6BDuDBuM7TzcGIhoe2k87IhPNKcCIYiqGPZcKGUnW_nPdn51sN5z3uYA1m5kCrL6gnfkNL1-lGt_1SM3gTIUVrIo/s400/sun16.jpg" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Hand Print or T-Rex? LOL</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgG77xk71yblxA7ipybV_LYDBS9WxaK6kcwF5Z6ImSOHB3VBErP_JC4C-Uc3DZ16wml2u3rKbKkNjIQE5o1pXSwMw0boxDVIpt4sDg2Rfmh0HCf3Cju1KSjxpFvvxJbvDTOdHl3apkmMJo/s1600/sun15.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgG77xk71yblxA7ipybV_LYDBS9WxaK6kcwF5Z6ImSOHB3VBErP_JC4C-Uc3DZ16wml2u3rKbKkNjIQE5o1pXSwMw0boxDVIpt4sDg2Rfmh0HCf3Cju1KSjxpFvvxJbvDTOdHl3apkmMJo/s400/sun15.jpg" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">We decided to go with feet instead. Our awesome nurse Michelle made her this shirt--ruffles and all. Michelle rocks!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg3CQ7iQOxKAhBq-8ws4ABJrrp5Ll2xWp1eDqoc_uz_Dnu5vrOWMeJSScf4nkPoITwg87gU5VbKvFq9HNNHAbUaEFLDZByUBVLpVcYXFDbS30kOiloOKRhhs9rLgpJSDJb3I-BjPXQc3jY/s1600/sun17.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg3CQ7iQOxKAhBq-8ws4ABJrrp5Ll2xWp1eDqoc_uz_Dnu5vrOWMeJSScf4nkPoITwg87gU5VbKvFq9HNNHAbUaEFLDZByUBVLpVcYXFDbS30kOiloOKRhhs9rLgpJSDJb3I-BjPXQc3jY/s400/sun17.jpg" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Momma's Girl</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj3n7JWRjewggz6cGTuy0q8zwmgi1JBBkBjQqBCZuS3kGDAi8btliTE9sBwiYqGU16GV0W52qfHsoqTQRVqRDTC5rNjBS0sTmuFfBAFRAS8nOYhmIrhzQqiLZh_NTNkniWU04q7yYLIQQg/s1600/sun9.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj3n7JWRjewggz6cGTuy0q8zwmgi1JBBkBjQqBCZuS3kGDAi8btliTE9sBwiYqGU16GV0W52qfHsoqTQRVqRDTC5rNjBS0sTmuFfBAFRAS8nOYhmIrhzQqiLZh_NTNkniWU04q7yYLIQQg/s400/sun9.jpg" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">They can NOT wait for their Sister to come home! :)</td></tr>
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<br />wreeveshttp://www.blogger.com/profile/02694676660122028787noreply@blogger.com5tag:blogger.com,1999:blog-3688857526446988837.post-13835563219978865942013-01-29T21:30:00.005-08:002013-01-29T21:30:58.947-08:00The PlanWe finally have a -plan-. I kind of feel like we have has a planless plan for a while now. I know that does not make sense but you get the point, right?<br />
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Sunni has been doing pretty good for the most part. She has been throwing up a LOT though. Saturday was a record high of 10-12 times just on the day shift. It was miserable for her and heartbreaking to watch for me. I hate it! The amount of times she throws up all depends on if her g-tube is draining properly which is does some days and does not other days. I keep Shawn updated and it was/is aggravating for both of us to feel like there is something they can do about it to make it start working again so that she will not throw up as much. You can plainly see that is hurts her. It is bile. We all know how bad bile burns. It even burns her skin where it gets on her cheeks.<br />
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Well---they say there is nothing they can do to fix the gtube since it has not been long enough since it was placed. They did do another GI test on Friday to see if they could see what the problem was or if there was one at all but it showed it to be fine. They put in 60cc's of contrast through the gtube and into her stomach and were able to pull 40cc's back out. The rest *supposedly* went through. If you have follwed Sunni's Story closely you know that nothing has gone through and past her stomach before. I was shocked to hear this. The contrast was in her intestines the next morning seen by xray. I dont know think all 20cc's went through because she did throw up that afternoon. This finding excited me! I have hope that she will not *always* have to be fed into her intestines.<br />
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One of our night nurses somehow got the gtube bag to start working Sunday night so her throwing up has lessened HALLELUJAH! Today she only threw up like 3 times. She had a really good day--it made me happy. When Sunni is happy, mommy can be happy.<br />
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Monday we got one of our favorite dr's back on service. He will be on for two weeks so I think it will be a good two weeks. He is really agressive and proactive. I really trust him. He is very straight forward and I like that. He is not the kind to just set back and ride things out--he likes to see change. So today he met with surgery and GI and they devised a plan. Finally.<br />
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Getting a GJ tube is the next step. She can not get a GJ tube until 8 weeks after her last at the very earliest and her Gtube spot has to be totally healed. It has to be a hole that is part of the body. They will start looking and checking on this in 2 weeks (which will be the 8 weeks after last surgery). The surgeon would actually prefer it to be 3 months (yes, MONTHS) after her last surgery which was December 17th. So I am just going to assume that she will not be getting a GJ tube until around March 17. I do not want to set myself up for disappointment.<br />
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So assuming March 17th is the surgery date and assuming it will take a few weeks to heal and make sure that she is doing ok (eating, gaining weight, pooping etc)....I am just going to guesstimate we will be here til April. I know this is what needs to be done but it is really heartbreaking to think about being away from home that much longer.<br />
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I can not believe Sunni will be 6 months (or more) when she finally gets to come home. I remember reading a CDH blog about a little boy named Jude when I was pregnant and I was so sad for he and his family for being 6.5 months before getting to go home. I guess I never considered that Sunni's Story might be written that way as well. I still talk to Jude's mom from time to time on fb. These CDH mom's are so strong. As I read their blogs and hear how strong they sound I wonder if they are secretly feeling as defeated as I do some days. No one understands until they have been there and done it. No one understands what these babies endure and will endure for the rest of their lives. Even when we get home life will never be the same. I tried not to turn this blog into a pity party but just pray for me. I am really struggling with this. I just really miss my boys, husband, and family. <br />
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And to leave you on a sweet note..........<br />
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiVjJT1PIbUeLlFfiW9XDfRJ42qLHO4GuYoKs0Pu2tDP1GgtjYXKfUs_ago3j0Iscfl9blnO6Zn7O6TrJA4UFTrEqkjvyQpgtEZaYBloRvj3biJLALmz7CpQn6zxOwubYIxX5IwwCAslJ0/s1600/1.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiVjJT1PIbUeLlFfiW9XDfRJ42qLHO4GuYoKs0Pu2tDP1GgtjYXKfUs_ago3j0Iscfl9blnO6Zn7O6TrJA4UFTrEqkjvyQpgtEZaYBloRvj3biJLALmz7CpQn6zxOwubYIxX5IwwCAslJ0/s400/1.jpg" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Peek-A-Boo Momma!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgprVU3yUbNm6qXtDwMMCH-WXfIzTiojLewu0BVU4Vx0jHh99dVvU9KUrveGI6EFBG-ucnDoEziEx-00ITVKXgBkmrm5WVr1ngAOG7phXvDePHAufrmtSGp_UKMcg8faei8k5yLj1hUqm0/s1600/3.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgprVU3yUbNm6qXtDwMMCH-WXfIzTiojLewu0BVU4Vx0jHh99dVvU9KUrveGI6EFBG-ucnDoEziEx-00ITVKXgBkmrm5WVr1ngAOG7phXvDePHAufrmtSGp_UKMcg8faei8k5yLj1hUqm0/s400/3.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">She has the CUTEST yawn. It is a sweet sound.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiAOBbydLy_hw0Hy9dM7HU0fWUkqQHFflichmtZENIvc5jNE_Vcn-xArcc-uq1S5eYpYbbX3j2LWZfsCEZGm7HwJZq8d2zVZX4eLzp59fo3SN2QnN5tF97_qzmnQBGYCQYLDvD3ANifPoA/s1600/2.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiAOBbydLy_hw0Hy9dM7HU0fWUkqQHFflichmtZENIvc5jNE_Vcn-xArcc-uq1S5eYpYbbX3j2LWZfsCEZGm7HwJZq8d2zVZX4eLzp59fo3SN2QnN5tF97_qzmnQBGYCQYLDvD3ANifPoA/s400/2.jpg" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Her legs are getting really bruised from her daily shot of Lovenox. Poor baby.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjidIj8F784OrBGSuzQTzVJCtJCuWtdW-j_WFUkFeSwJFlZ8_mnpu_jYt-gmT_xENtpZB33UKOnrwpBcQWzD11PvR71PnecnX55yCSMHJMXJZm0s7MJvJ1ALdY-cEbZAxyhXaTc9MHUOvY/s1600/5.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjidIj8F784OrBGSuzQTzVJCtJCuWtdW-j_WFUkFeSwJFlZ8_mnpu_jYt-gmT_xENtpZB33UKOnrwpBcQWzD11PvR71PnecnX55yCSMHJMXJZm0s7MJvJ1ALdY-cEbZAxyhXaTc9MHUOvY/s400/5.jpg" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Really, Mom? Hehehe</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgkTFTF6tOLZPtac2HCx7NAmoAKb4eu5XOTO5uTi96VsRRaw4I_JaO580JsHdneyVPF_W8CFe_2hUr45Ld1Aiu2VM4CgP29O4V_O3bLKR1lV04RRBOclTUhheFf0Fw8XSqzxDIlAnBYsmE/s1600/6.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgkTFTF6tOLZPtac2HCx7NAmoAKb4eu5XOTO5uTi96VsRRaw4I_JaO580JsHdneyVPF_W8CFe_2hUr45Ld1Aiu2VM4CgP29O4V_O3bLKR1lV04RRBOclTUhheFf0Fw8XSqzxDIlAnBYsmE/s400/6.jpg" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Daddy asked if I was happy---So Mommy sent this pic and asked him what he thought.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjx_dBfLAjjLWgKAknmj15v31lGBIilL7kQso1jX5_LRZ26PpuFxDiksQzCV9wuIKTLL0OHUWy2jw7iSB7XNShhcHSkM4uSppUYZojiZEm3imyboM40BYwVAMFvdDdsEQvTZT-uaMCFbJc/s1600/4.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjx_dBfLAjjLWgKAknmj15v31lGBIilL7kQso1jX5_LRZ26PpuFxDiksQzCV9wuIKTLL0OHUWy2jw7iSB7XNShhcHSkM4uSppUYZojiZEm3imyboM40BYwVAMFvdDdsEQvTZT-uaMCFbJc/s400/4.jpg" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Best lil Sister</td></tr>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgmz2-Ff-xSfWVzE8zn3V0OfITzSC13BALqAWTHQajaHM8Kco9E0AqBoqF_t4BirRRjqGXi2I_F0LuG0beHYb31NCXEZpDLuMjTLohz4w_eE681zs4U41ul_Iy1cqy7f0r3qzOYh5BYGCo/s1600/7.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgmz2-Ff-xSfWVzE8zn3V0OfITzSC13BALqAWTHQajaHM8Kco9E0AqBoqF_t4BirRRjqGXi2I_F0LuG0beHYb31NCXEZpDLuMjTLohz4w_eE681zs4U41ul_Iy1cqy7f0r3qzOYh5BYGCo/s400/7.jpg" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">A Gift from God</td></tr>
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<br />wreeveshttp://www.blogger.com/profile/02694676660122028787noreply@blogger.com3tag:blogger.com,1999:blog-3688857526446988837.post-76541717087088097832013-01-17T22:27:00.003-08:002013-01-17T22:27:47.029-08:00Smiley FaceHello all! I just wanted to write a short blog to share my excitement for the day. My little girl is starting to smile! She has gave very few smiles here and there for about 3 weeks. She does not hand them out often though. She really likes smiling at some of her favorite nurses and she is really stingy with them with me. BUT not *as* stingy today. And yes, the smiles are finger induced, but I don't care! I will take it! You will have to read the blog before you get to see the pics! :)<br />
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If you are being directed here from Sunni's new facebook page some of this update will be old news. For those that do not know I created Sunni a separate fb from my own so that I could better manage my friends and family and keep everybody updated on Sunni that actually wants to hear. I never imagined that so many people would "like it." I saw a lot of nurses on there--which is a little intimidating--but I welcome them either way! <a href="https://www.facebook.com/SunnisStory">https://www.facebook.com/SunnisStory</a></div>
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So yesterday Sunni just was not acting like herself and I could tell that she did not feel very good. She did not want me to hold her which sucked for me but I understood. She was desatting as low as 62 for no apparent reason. Usually when she desats it is because she is choking, coughing, gagging, or throwing up. None of those were happening. It just seemed like she was breathing harder and was very uncomfortable. Her sats are usually in the 90's.</div>
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I told the nurse that it just was not like her to just desat without an obvious reason. This nurse was one that we have had before but not regularly. So she called the dr. (I so want to add "and the dr said" right here-haha--Pre-K teacher at heart). The doc upped her oxygen, stopped feeds, and ordered an xray and cbc. Sunni immediately felt better with the added oxygen support. The xray was unchanged from the last so everything looked ok in that area and the cbc was fine. So either the feeds (5cc/hr) were doing it (somehow) or she just needed some breathing support. Either way she got some relief and had a MUCH better day today!</div>
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This morning they started the feeds back up to 2cc/hr and left the oxygen up. No other changes. I mentioned in the last blog that her blood pressure has always been high so they ordered an ultrasound on her kidneys and a urine test. The urine was fine. One kidney is bigger than the other but looked fine so they are not going to put her on medication for high bp (right now).</div>
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So for those of you that did not skip straight to the pictures without reading---here you are! I am going to attempt to post a video too. Hopefully it works :)</div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjQkkrvL3HpNe_HtGdLhJnVWUsJ2WCy3YL6ZrQ95l3td6LhPnOYqoMyfxAxvioKxVSTe3WG5nJeKmrMrj-UPqNQoVjlzkLkZmuVwQ_PKhjGkMEO3nEzSD1ak__vOCuSal7wu5u55dMJrew/s1600/smile2.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjQkkrvL3HpNe_HtGdLhJnVWUsJ2WCy3YL6ZrQ95l3td6LhPnOYqoMyfxAxvioKxVSTe3WG5nJeKmrMrj-UPqNQoVjlzkLkZmuVwQ_PKhjGkMEO3nEzSD1ak__vOCuSal7wu5u55dMJrew/s400/smile2.jpg" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Bad quality because I could not let her know I was taking pictures. haha</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhdSP7jLUvs82Carda6VkuwL4i4fUswrD3Y3QFAIkPWw41KalyeMGagwdJwOMK7ptId6WwqhsjxGwUBbUzwFr-4vD8GcOqf69k6HC7Dirl5dZ-1edM4iZ4fQopav1buICY53WdxJyZ4BVo/s1600/smile1.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhdSP7jLUvs82Carda6VkuwL4i4fUswrD3Y3QFAIkPWw41KalyeMGagwdJwOMK7ptId6WwqhsjxGwUBbUzwFr-4vD8GcOqf69k6HC7Dirl5dZ-1edM4iZ4fQopav1buICY53WdxJyZ4BVo/s400/smile1.jpg" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">This melts my heart. I love her so much!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg8wFz7IudEoZT13TTBpnpufkT6i8_8sBZMjMi9aFIS3QXsph-O1yFbroSHybZcGYc7-7cWVgM-TGVOzVmS5imxRhyhl8e4uhHuDBjC3TKQwIc9FBNtgiWn7Hi1qgmA1k5uRAxGXTnEULU/s1600/smile4.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg8wFz7IudEoZT13TTBpnpufkT6i8_8sBZMjMi9aFIS3QXsph-O1yFbroSHybZcGYc7-7cWVgM-TGVOzVmS5imxRhyhl8e4uhHuDBjC3TKQwIc9FBNtgiWn7Hi1qgmA1k5uRAxGXTnEULU/s400/smile4.jpg" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">You are my sunshine...</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhmZF9H_M-Mupzwva1iOWApBWyRPtKqanrijnBuk0E_Zfgtu9aHcgvAsfrOTTQq7Oh7zZNfzdDHvJhfupYiMCDF43KPFhlK7IBhAvQDz86IeD35wmrQ0dwq3lURQSyhGrb-RB8lVVI4VWg/s1600/smile3.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhmZF9H_M-Mupzwva1iOWApBWyRPtKqanrijnBuk0E_Zfgtu9aHcgvAsfrOTTQq7Oh7zZNfzdDHvJhfupYiMCDF43KPFhlK7IBhAvQDz86IeD35wmrQ0dwq3lURQSyhGrb-RB8lVVI4VWg/s400/smile3.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Little smile without touching her chin! :)</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhkWpiitjgK3A00noEGWulLvbAjJYWOAQv1cthyphenhyphena-kAAIuzNSf4z4nuZ7jJLUD0LTWO8LZWB5XNpfq7U1w7tapUky2tTFkp2fd4Uo9RA1yAmCJoIlDsHZQIplYdylerK683JVTT4aVOlGQ/s1600/smile5.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhkWpiitjgK3A00noEGWulLvbAjJYWOAQv1cthyphenhyphena-kAAIuzNSf4z4nuZ7jJLUD0LTWO8LZWB5XNpfq7U1w7tapUky2tTFkp2fd4Uo9RA1yAmCJoIlDsHZQIplYdylerK683JVTT4aVOlGQ/s400/smile5.jpg" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Smiling is Exhausting :)</td></tr>
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wreeveshttp://www.blogger.com/profile/02694676660122028787noreply@blogger.com3tag:blogger.com,1999:blog-3688857526446988837.post-18211908598467022402013-01-15T17:22:00.002-08:002013-01-15T17:25:39.790-08:00Busy Day Do not fall out of your chair! Yes, I am blogging two days in a row. I had the time so I figured--what the heck?<br />
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Today Sunni has a very busy day! First I got to change like 3 dirty diapers! Every time I changed her it was not just wet but dirty! Yay for #2! <br />
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Second we got LOTS of snuggle time in. We got to give kisses and hugs (already converting her to Momma's girl). She practiced tummy time and some different swaying movements. I tried really hard at getting a smile but failed. Since she got the NJ tube she really doesn't want anything to do with her mouth and movements make her gag-ugh!<br />
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Then she had musical therapy and physical therapy at the same time. That really helped her with the PT since she was more focused on the music and interaction than she was the movements and exercise. She does not really love to be bent and twisted all over so you can imagine what a help it is to have a distraction. <br />
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And last but certainly not least she got to leave her room today and it did not involve a trip to the OR! Yay! It took a lot of work but thanks to her very awesome and adventurous nurse she went on her first wagon ride!! She did not seem to mind it one way or the other but it was nice to get her out of the room. Mommy might have had more fun than Sunni but that is ok! She just looked around most of the time. Sometimes she got a look of worry but for the most part she did really good.<br />
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GOOD NEWS for the day is they went up to 4cc/hr on her feeds. (She is currently getting breast milk that I pumped back in October). And the BAD NEWS is that she has had high blood pressure basically since the day she was born so they did a urinalysis and a kidney ultrasound today. More than likely she will be put on a med for high blood pressure. Bummer! More meds.<br />
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I started the day by taking Shawn to the airport--so he is gone for 3 weeks. Is it possible to miss him already? He spoils me so much that I really do not know what to do on my own. I have the best husband there is! <br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjE1tPzqtj_FCNmIJIMFkFFm9t2EgeUmmqNyWPVIexWDb3E6ag3ndevUM1rXfpnjfdvREd2_6XpdKw_bINpu9UvoR7L49MXc1KDxTLiRzMofeBBd0bEYxBTfXM-aY4rH1x8dPpYiuRjT7Q/s1600/suns.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjE1tPzqtj_FCNmIJIMFkFFm9t2EgeUmmqNyWPVIexWDb3E6ag3ndevUM1rXfpnjfdvREd2_6XpdKw_bINpu9UvoR7L49MXc1KDxTLiRzMofeBBd0bEYxBTfXM-aY4rH1x8dPpYiuRjT7Q/s400/suns.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Tummy Time--Snugglin with Momma</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjCB71stD_f3h0G2aUhE8rEayhKfbCDAsde5FScrh8pNU7MmaSNwEr8rzZjBTPKLl524jpxNdLlDTQkAGbkbd85Lx5cbltGSPDQISyVMDcrs13LFQO8gSbdFM3JH8IJaWcdUow3UyoNITs/s1600/suns2.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjCB71stD_f3h0G2aUhE8rEayhKfbCDAsde5FScrh8pNU7MmaSNwEr8rzZjBTPKLl524jpxNdLlDTQkAGbkbd85Lx5cbltGSPDQISyVMDcrs13LFQO8gSbdFM3JH8IJaWcdUow3UyoNITs/s400/suns2.jpg" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">The RT said she looked "Pudgy." She took offense to that. lol</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEghGZMYNmrwSU95B4ny9R8X1VxEsZyjIP8j6Gb0qxkMEJBpPLCvAw2sFoOZZpgMseJzoNp4RPhWM3w55FVEDu2oXU_ZWvTujopiFJAARGSERo0jeXJamGkCDZ9D0XQZZOOOIyprVXAJH64/s1600/suns3.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEghGZMYNmrwSU95B4ny9R8X1VxEsZyjIP8j6Gb0qxkMEJBpPLCvAw2sFoOZZpgMseJzoNp4RPhWM3w55FVEDu2oXU_ZWvTujopiFJAARGSERo0jeXJamGkCDZ9D0XQZZOOOIyprVXAJH64/s400/suns3.jpg" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Musical & Physical Therapy Today</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiKG8wXXIu_ALoIDLexiECnvxluVLNFreu6v5XO4N3L7XxGmzoWpFrpQtwubExgTACI7tx0TnanS1pLVTVA1qQRzyYElpVlaXemxDhL7b0ZvrO7lJY2-dbMRDX1Effjktuz-awSihnfE2E/s1600/suns4.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiKG8wXXIu_ALoIDLexiECnvxluVLNFreu6v5XO4N3L7XxGmzoWpFrpQtwubExgTACI7tx0TnanS1pLVTVA1qQRzyYElpVlaXemxDhL7b0ZvrO7lJY2-dbMRDX1Effjktuz-awSihnfE2E/s400/suns4.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Wagon Ride! 1st time leaving my pod (other than OR time).</td></tr>
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<br />wreeveshttp://www.blogger.com/profile/02694676660122028787noreply@blogger.com2tag:blogger.com,1999:blog-3688857526446988837.post-5394514733426504472013-01-14T22:08:00.002-08:002013-01-14T22:08:35.858-08:00100 Days Old!I got back to Houston on Wednesday night. Sunni has really grown a bunch. Her 3 month clothes do not fit anymore! Me and Mimi got to go shopping while I was in Amarillo and bought her a whole bunch of 6 month clothes. I thought they were going to be huge on her but they fit pretty good. Amazing.<br />
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Not a whole lot has changed since the last blog. I know you probably feel like I say that a lot but it is true. And it is really frustrating on this end. I knew this was going to be a long stay but I just imagined, hoped, and prayed that we would fit into that average 2-3 month hospital stay. Unfortunately that is just not going to happen for us. There is not a projected end date in site. It is all unknown and that sucks. I however do not want her home until I feel completely sure it is safe. Today is 100 days of life!</div>
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3 days ago (on Friday, January 11th) Sunni went to the OR to get an NJ tube placed. That is a tube that goes from the nose to the small bowel, the jejunum (NJ=Nasojejunal). She has had an NJ before from the last surgery but it came out probably by the squeezing of muscles. So on Friday she had to be sedated and intubated for the procedure They tried to do it while she was awake on two occasions but she did not cooperate (who could blame her?) and because her anatomy is so different from you and me. </div>
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Friday night they started her off on 1 cc/hour. Just so you know cc's and ml's are the same and that is barely any. Each day so far they have gone up 1 cc so today she has been on 3/hr. So far she has done good on that and no milk has backed up into her stomach. Hopefully that means that everything is going the way it should and she starts pooping regularly. She has pooped some but nothing substantial. If the NJ stays in place we will be in good shape! Miss Sunni likes to pull at it though! Eeek! </div>
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So we originally thought the next step would be to get a GJ tube in a few weeks. GJ stands for gastrostomy jejunostomy. Basically it goes through the stomach and into the small intestine. Then she will not need the NJ through her nose. The GJ is more permanent. Well---that is going to be a while. She is not big enough to get a GJ tube just yet AND they want to give her some time to heal since her last surgery was not that long ago. So we wait.</div>
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The goal is to keep increasing feeds and pray that she tolerates it and starts getting nutrition from milk and not TPN. She will start growing (she does everyday) and eventually she will be big enough for the GJ tube and we can bring her home! All of that sounds lovely but it will take an unknown amount of time and that is if everything goes according to plan. And we all know how "plans" work.</div>
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In other non-feeding news she is doing pretty well. She is so alert. She always has been. She is behind in a lot of developmental aspects but we work with her and so does OT and PT. She also gets musical therapy which she really likes. She is still throwing up several times a day. They have to clamp her G tube off to giver her meds and she barely makes it an hour before she is ready to throw it all up. Now that she has a NJ tube that runs down the back of her throat it moves when she moves and it REALLY makes her gaggy.</div>
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She has really became a daddy's girl in the last 2 weeks that he got to spend with her. I told her that we were going to have to change that after tomorrow when he leaves. She is supposed to be a momma's girl, darnit!</div>
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Thank you for keeping Sunni in your prayers. We really appreciate it. Sunni is like a celebrity back home. I love that people keep up with her and pray for her daily. My support system is what keeps me going! Thanks again! :)<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhz-WGwO5TJTtYOHOKkXRM2hjK-F_KQhfHs5rOdXKT-eYR8HuFJvjH13m_2s4X_LSB8232XTIkwI7H83uknPkSrD-FKgq08jKeGtDryYI9PQKVHzjs2bJHpzUIA4xCoiCaz-C7RBNUZG88/s1600/babe4.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhz-WGwO5TJTtYOHOKkXRM2hjK-F_KQhfHs5rOdXKT-eYR8HuFJvjH13m_2s4X_LSB8232XTIkwI7H83uknPkSrD-FKgq08jKeGtDryYI9PQKVHzjs2bJHpzUIA4xCoiCaz-C7RBNUZG88/s400/babe4.jpg" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">3 Months-Jan 6th! Daddy was in charge of these pics since Mommy was at home.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgfJ8EieSZaBrNCxG7wOR-SCgwZ5QndbpMajMfQ-lhhOJ55G-MKQhZ33q47V7Qa2xg0jOGQkEuoLPPu9gYIojiQ9hqEr_1keS5sC5Oa0UQo29tTdhTFe2F0YO5mct6xzH-eZD-ph9bsZLY/s1600/babe5.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="297" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgfJ8EieSZaBrNCxG7wOR-SCgwZ5QndbpMajMfQ-lhhOJ55G-MKQhZ33q47V7Qa2xg0jOGQkEuoLPPu9gYIojiQ9hqEr_1keS5sC5Oa0UQo29tTdhTFe2F0YO5mct6xzH-eZD-ph9bsZLY/s400/babe5.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Her room is (yep) PINK! Her Mimi and I got a lot of work done on it.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEipra3lrDIww6PIO2EcShigexlZLEdzW6bU6n43rzgn8gHi0XW25YMCqy4hYHl5rG463R-wa_TWU0_Db7LYLZcNls328Ym-1WZp9J2M4ux3ITcFhyAUNqc1GNjGuG59Vk7_p4z34_5Nprk/s1600/babe6.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEipra3lrDIww6PIO2EcShigexlZLEdzW6bU6n43rzgn8gHi0XW25YMCqy4hYHl5rG463R-wa_TWU0_Db7LYLZcNls328Ym-1WZp9J2M4ux3ITcFhyAUNqc1GNjGuG59Vk7_p4z34_5Nprk/s400/babe6.jpg" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Daddy did a lot of shopping while Mommy was gone. This is 1 of the many outfits her got. She is modeling it well.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhO1PmEQOQDliHs9JihFHFX-whU_mzeZkjw_x642-iv03UVg0IScXpHYwYHqTGwSQDQ4jXRbAGNmU-cv6LhA_KsTg2Y1QL7wDVzFkJPzcDNP648RHTQ87PikHBb-eSzeNP-rmceOCBwayA/s1600/babe7.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhO1PmEQOQDliHs9JihFHFX-whU_mzeZkjw_x642-iv03UVg0IScXpHYwYHqTGwSQDQ4jXRbAGNmU-cv6LhA_KsTg2Y1QL7wDVzFkJPzcDNP648RHTQ87PikHBb-eSzeNP-rmceOCBwayA/s400/babe7.jpg" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">She hated her swing at first! Now she can tolerate about 15 minutes.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhgpgM5qycMMpquSHSARN14DBWkOSPqxFOKkk7p6KfNokNp1VQlV8LDIvYIzX1yTXeJBABAED8jMzFjCopvswdzldzMWMwp2lnVg2jrjtIoNQk-Y321VVzDKHnZbCRe_o6Dh-2dj283SXA/s1600/babe8.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhgpgM5qycMMpquSHSARN14DBWkOSPqxFOKkk7p6KfNokNp1VQlV8LDIvYIzX1yTXeJBABAED8jMzFjCopvswdzldzMWMwp2lnVg2jrjtIoNQk-Y321VVzDKHnZbCRe_o6Dh-2dj283SXA/s400/babe8.jpg" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">This is the face when you blow strawberries at her. I think she gets scared....? haha</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjyfVgetKb_tVbWnOXcpbXCG47CTt7iQKk2LV0yjbDh74EMRURbE0hvSu_0KFUTHm1C3xo5MYZqf0kJm5pK9USxRHbEqb-uxIHHBPh3vFTFHLnrWkn1u_bKP1V_ZWXUvzNRT1qdXytse10/s1600/babe9.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjyfVgetKb_tVbWnOXcpbXCG47CTt7iQKk2LV0yjbDh74EMRURbE0hvSu_0KFUTHm1C3xo5MYZqf0kJm5pK9USxRHbEqb-uxIHHBPh3vFTFHLnrWkn1u_bKP1V_ZWXUvzNRT1qdXytse10/s400/babe9.jpg" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">I bet you can guess who got her this get up. At least it is pink!</td></tr>
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wreeveshttp://www.blogger.com/profile/02694676660122028787noreply@blogger.com1tag:blogger.com,1999:blog-3688857526446988837.post-22204642527212669472013-01-05T22:13:00.003-08:002013-01-05T22:18:37.848-08:00Gastroparesis<span class="Apple-style-span" style="-webkit-composition-fill-color: rgba(175, 192, 227, 0.230469); -webkit-composition-frame-color: rgba(77, 128, 180, 0.230469); -webkit-tap-highlight-color: rgba(26, 26, 26, 0.296875); -webkit-text-size-adjust: auto; color: #54585a; font-family: Georgia, 'Times New Roman', serif; font-size: 13px; line-height: 19px;">Gastroparesis is a condition in which the muscles in your stomach don't function normally. There is no cure.</span><br />
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<span class="Apple-style-span" style="-webkit-composition-fill-color: rgba(175, 192, 227, 0.230469); -webkit-composition-frame-color: rgba(77, 128, 180, 0.230469); -webkit-tap-highlight-color: rgba(26, 26, 26, 0.296875); -webkit-text-size-adjust: auto; color: #54585a; font-family: Georgia, 'Times New Roman', serif; font-size: 13px; line-height: 19px;"><br /></span></div>
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<span class="Apple-style-span" style="-webkit-composition-fill-color: rgba(175, 192, 227, 0.230469); -webkit-composition-frame-color: rgba(77, 128, 180, 0.230469); -webkit-tap-highlight-color: rgba(26, 26, 26, 0.296875); -webkit-text-size-adjust: auto; color: #54585a; font-family: Georgia, 'Times New Roman', serif; font-size: 13px; line-height: 19px;">First of all I will say that Sunni has not been diagnosed with this (yet). I do feel that it's only a matter of time before we find out that this is the case. Do I know what this means for Sunni long term? No. </span></div>
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<span class="Apple-style-span" style="-webkit-composition-fill-color: rgba(175, 192, 227, 0.230469); -webkit-composition-frame-color: rgba(77, 128, 180, 0.230469); -webkit-tap-highlight-color: rgba(26, 26, 26, 0.296875); -webkit-text-size-adjust: auto; color: #54585a; font-family: Georgia, 'Times New Roman', serif; font-size: 13px; line-height: 19px;"><br /></span></div>
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<span class="Apple-style-span" style="-webkit-composition-fill-color: rgba(175, 192, 227, 0.230469); -webkit-composition-frame-color: rgba(77, 128, 180, 0.230469); -webkit-tap-highlight-color: rgba(26, 26, 26, 0.296875); -webkit-text-size-adjust: auto; color: #54585a; font-family: Georgia, 'Times New Roman', serif; font-size: 13px; line-height: 19px;">They have tried feeds over and over but it always results in one thing. Throw up. </span></div>
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<span class="Apple-style-span" style="-webkit-composition-fill-color: rgba(175, 192, 227, 0.230469); -webkit-composition-frame-color: rgba(77, 128, 180, 0.230469); -webkit-tap-highlight-color: rgba(26, 26, 26, 0.296875); -webkit-text-size-adjust: auto; color: #54585a; font-family: Georgia, 'Times New Roman', serif; font-size: 13px; line-height: 19px;"><br /></span></div>
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<span class="Apple-style-span" style="-webkit-composition-fill-color: rgba(175, 192, 227, 0.230469); -webkit-composition-frame-color: rgba(77, 128, 180, 0.230469); -webkit-tap-highlight-color: rgba(26, 26, 26, 0.296875); -webkit-text-size-adjust: auto; color: #54585a; font-family: Georgia, 'Times New Roman', serif; font-size: 13px; line-height: 19px;">On Dec 31st the started giving her Reglan and Erythromycin in hopes of helping gastric emptying. Then they started clamping her gtube off and on. Throw up. On the 3rd they started breastmilk for the first time. 1 cc per hour. If you do not know what a cc is it is barely any! She threw up again.</span></div>
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<span class="Apple-style-span" style="-webkit-composition-fill-color: rgba(175, 192, 227, 0.230469); -webkit-composition-frame-color: rgba(77, 128, 180, 0.230469); -webkit-tap-highlight-color: rgba(26, 26, 26, 0.296875); -webkit-text-size-adjust: auto; color: #54585a; font-family: Georgia, 'Times New Roman', serif; font-size: 13px; line-height: 19px;"><br /></span></div>
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<span class="Apple-style-span" style="-webkit-composition-fill-color: rgba(175, 192, 227, 0.230469); -webkit-composition-frame-color: rgba(77, 128, 180, 0.230469); -webkit-tap-highlight-color: rgba(26, 26, 26, 0.296875); -webkit-text-size-adjust: auto; color: #54585a; font-family: Georgia, 'Times New Roman', serif; font-size: 13px; line-height: 19px;">On the 4th she had a stomach emptying test. Annnnnd same result as always. Nothing happened. Except throw up.</span></div>
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<span class="Apple-style-span" style="-webkit-composition-fill-color: rgba(175, 192, 227, 0.230469); -webkit-composition-frame-color: rgba(77, 128, 180, 0.230469); -webkit-tap-highlight-color: rgba(26, 26, 26, 0.296875); -webkit-text-size-adjust: auto; color: #54585a; font-family: Georgia, 'Times New Roman', serif; font-size: 13px; line-height: 19px;"><br /></span></div>
<div>
<span class="Apple-style-span" style="-webkit-composition-fill-color: rgba(175, 192, 227, 0.230469); -webkit-composition-frame-color: rgba(77, 128, 180, 0.230469); -webkit-tap-highlight-color: rgba(26, 26, 26, 0.296875); -webkit-text-size-adjust: auto; color: #54585a; font-family: Georgia, 'Times New Roman', serif; font-size: 13px; line-height: 19px;">So today she has been on a half cc per hour and has done pretty good. Maybe the meds are working?</span></div>
<div>
<span class="Apple-style-span" style="-webkit-composition-fill-color: rgba(175, 192, 227, 0.230469); -webkit-composition-frame-color: rgba(77, 128, 180, 0.230469); -webkit-tap-highlight-color: rgba(26, 26, 26, 0.296875); -webkit-text-size-adjust: auto; color: #54585a; font-family: Georgia, 'Times New Roman', serif; font-size: 13px; line-height: 19px;"><br /></span></div>
<div>
<span class="Apple-style-span" style="color: #54585a; font-size: x-small;"><span class="Apple-style-span" style="-webkit-composition-fill-color: rgba(175, 192, 227, 0.230469); -webkit-composition-frame-color: rgba(77, 128, 180, 0.230469); -webkit-tap-highlight-color: rgba(26, 26, 26, 0.292969); -webkit-text-size-adjust: auto; font-family: Georgia, 'Times New Roman', serif; line-height: 19px;">The purpose of this blog is to unite Sunni's awesome prayer warriors once again. She has overcome many obstacles but this one is the one keeping her in the hospital. Eating and pooping are pretty important bodily functions. I have faith that God will get her over this road bump as He has all the others. Pray that Sunni's stomach starts emptying and the natural digestive process starts happening for our precious girl!</span></span></div>
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<span class="Apple-style-span" style="color: #54585a; font-size: x-small;"><span class="Apple-style-span" style="-webkit-composition-fill-color: rgba(175, 192, 227, 0.230469); -webkit-composition-frame-color: rgba(77, 128, 180, 0.230469); -webkit-tap-highlight-color: rgba(26, 26, 26, 0.292969); -webkit-text-size-adjust: auto; font-family: Georgia, 'Times New Roman', serif; line-height: 19px;"><br /></span></span></div>
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<span class="Apple-style-span" style="color: #54585a; font-size: x-small;"><span class="Apple-style-span" style="-webkit-composition-fill-color: rgba(175, 192, 227, 0.230469); -webkit-composition-frame-color: rgba(77, 128, 180, 0.230469); -webkit-tap-highlight-color: rgba(26, 26, 26, 0.292969); -webkit-text-size-adjust: auto; font-family: Georgia, 'Times New Roman', serif; line-height: 19px;">I am going back to Houston next week. I am really missing her! Shawn has been taking good care of her along with our awesome nurses. As much as I love all the people we have met in Houston I am so ready to have my family back together where we belong in Fritch, TX! Tomorrow she will be 3 months old! 92 days!</span></span></div>
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<span class="Apple-style-span" style="color: #54585a; font-size: x-small;"><span class="Apple-style-span" style="-webkit-composition-fill-color: rgba(175, 192, 227, 0.230469); -webkit-composition-frame-color: rgba(77, 128, 180, 0.230469); -webkit-tap-highlight-color: rgba(26, 26, 26, 0.292969); -webkit-text-size-adjust: auto; font-family: Georgia, 'Times New Roman', serif; line-height: 19px;"><br /></span></span></div>
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<span class="Apple-style-span" style="color: #54585a; font-size: x-small;"><span class="Apple-style-span" style="-webkit-composition-fill-color: rgba(175, 192, 227, 0.230469); -webkit-composition-frame-color: rgba(77, 128, 180, 0.230469); -webkit-tap-highlight-color: rgba(26, 26, 26, 0.292969); -webkit-text-size-adjust: auto; font-family: Georgia, 'Times New Roman', serif; line-height: 19px;">OH, and guess what!!? She has a PINK room to come home to and her bed is on its way! </span></span></div>
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<span class="Apple-style-span" style="color: #54585a; font-size: x-small;"><span class="Apple-style-span" style="-webkit-composition-fill-color: rgba(175, 192, 227, 0.230469); -webkit-composition-frame-color: rgba(77, 128, 180, 0.230469); -webkit-tap-highlight-color: rgba(26, 26, 26, 0.292969); -webkit-text-size-adjust: auto; font-family: Georgia, 'Times New Roman', serif; line-height: 19px;"><br /></span></span></div>
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<span class="Apple-style-span" style="color: #54585a; font-size: x-small;"><span class="Apple-style-span" style="-webkit-composition-fill-color: rgba(175, 192, 227, 0.230469); -webkit-composition-frame-color: rgba(77, 128, 180, 0.230469); -webkit-tap-highlight-color: rgba(26, 26, 26, 0.292969); -webkit-text-size-adjust: auto; font-family: Georgia, 'Times New Roman', serif; line-height: 19px;"><br /></span></span></div>
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<span class="Apple-style-span" style="color: #54585a; font-size: x-small;"><span class="Apple-style-span" style="-webkit-composition-fill-color: rgba(175, 192, 227, 0.230469); -webkit-composition-frame-color: rgba(77, 128, 180, 0.230469); -webkit-tap-highlight-color: rgba(26, 26, 26, 0.292969); -webkit-text-size-adjust: auto; font-family: Georgia, 'Times New Roman', serif; line-height: 19px;"><br /></span></span></div>
<span class="Apple-style-span" style="color: #54585a; font-size: x-small;"><span class="Apple-style-span" style="-webkit-composition-fill-color: rgba(175, 192, 227, 0.230469); -webkit-composition-frame-color: rgba(77, 128, 180, 0.230469); -webkit-tap-highlight-color: rgba(26, 26, 26, 0.292969); -webkit-text-size-adjust: auto; font-family: Georgia, 'Times New Roman', serif; line-height: 19px;"><br /></span></span>
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<span class="Apple-style-span" style="color: #54585a; font-size: x-small;"><span class="Apple-style-span" style="-webkit-composition-fill-color: rgba(175, 192, 227, 0.230469); -webkit-composition-frame-color: rgba(77, 128, 180, 0.230469); -webkit-tap-highlight-color: rgba(26, 26, 26, 0.292969); -webkit-text-size-adjust: auto; font-family: Georgia, 'Times New Roman', serif; line-height: 19px;"><br /></span></span></div>
<span class="Apple-style-span" style="color: #54585a; font-family: helvetica, arial, sans-serif; font-size: x-small;"><span class="Apple-style-span" style="-webkit-composition-fill-color: rgba(175, 192, 227, 0.230469); -webkit-composition-frame-color: rgba(77, 128, 180, 0.230469); -webkit-tap-highlight-color: rgba(26, 26, 26, 0.292969); -webkit-text-size-adjust: auto; line-height: 19px;"><br /></span></span>wreeveshttp://www.blogger.com/profile/02694676660122028787noreply@blogger.com1tag:blogger.com,1999:blog-3688857526446988837.post-16835304283827064112012-12-30T15:20:00.002-08:002012-12-30T15:20:30.852-08:00Quick UpdateSorry for the delay in updates. I am home now. Shawn and I switched places so I could have a little break and spend some time with the boys while they are out of school. I am without a computer and am not fond of typing on my ipad. I asked Shawn to blog in my place but he says he cant.<br />
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So since the last blog not too much as happened; we are at another stand still. Shortly after I blogged last they had to stop feeds because the food was all backing up and going out the g-tube. The tube came out of her intestine and into the stomach. The stomach does not know how to digest yet so the food was not going the right direction. In other words she started throwing up.<br />
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They have tried a few things but to make a really long story short they are waiting two weeks and putting in a GJ tube. It will go through the stomach and into the small intestine. To read more about it go here. <a href="http://www.cincinnatichildrens.org/health/g/gastro-jejuno-tube/">http://www.cincinnatichildrens.org/health/g/gastro-jejuno-tube/</a>. We have to wait 2 weeks so the g tube has time to heal from the last surgery.<br />
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She is doing really well though. Shawn has been working with her on physical therapy and getting a lot of snuggle time in. I have just been attempting to get some order to my house and playing with the boys. I planned on painting her room and getting it ready but I may leave that to Shawn.<br />
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If anything big happens between now and the time that I get back I will update. If not I will probably not be updating til I get back to Houston. <br />
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi-XDLBXmBbSJk2wqiLhEkc5r1aOVbfpN-Yqu97wrss6qBEPz8qqcv7jSPBNeM5jD40baxbesJu-DFIrhIsbLGSvhfGD9WpQXwBnpGaItEYa_qSpCxpDRQ3-owNkqgoyQEHJbhKFhl1LlM/s1600/sun.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi-XDLBXmBbSJk2wqiLhEkc5r1aOVbfpN-Yqu97wrss6qBEPz8qqcv7jSPBNeM5jD40baxbesJu-DFIrhIsbLGSvhfGD9WpQXwBnpGaItEYa_qSpCxpDRQ3-owNkqgoyQEHJbhKFhl1LlM/s400/sun.jpg" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">In the outfit that Mimi got me for Christmas!</td></tr>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi5tCq6j7O6ZT9T2lx3P2LlxUqqOIMQTAA0H3YbA8xc0DF-c0-_Eu281bVPIFmp0JF2XA9qf9nvqDuGzykoxGYHv-5qd4tzbbjUkMImYMgHgC0UPW2RHN_4jFPd7mwHRw2634hS1dKyBx0/s1600/sun1.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi5tCq6j7O6ZT9T2lx3P2LlxUqqOIMQTAA0H3YbA8xc0DF-c0-_Eu281bVPIFmp0JF2XA9qf9nvqDuGzykoxGYHv-5qd4tzbbjUkMImYMgHgC0UPW2RHN_4jFPd7mwHRw2634hS1dKyBx0/s400/sun1.jpg" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">AWESOME blankets that my nurse Michelle made me :)</td></tr>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgwmLC9EzmfnYE1KZz908NH0xeJ2ODy4nd9vqYINVne9M3drTyrLk1uVejlfEHOW4bD7hJkTNV8XRywjhvnYjHqIazBnMKod56sWHtgYDix7TmDXymp-2q7HB-dxPF5eBzUQTYLtxzin6E/s1600/sun2.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgwmLC9EzmfnYE1KZz908NH0xeJ2ODy4nd9vqYINVne9M3drTyrLk1uVejlfEHOW4bD7hJkTNV8XRywjhvnYjHqIazBnMKod56sWHtgYDix7TmDXymp-2q7HB-dxPF5eBzUQTYLtxzin6E/s400/sun2.jpg" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Add caption</td></tr>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiPgunjcE7bD_bmbRK_i3A18yHgCkgEe6Gxt0JfiHtOGgUPhuh7q-qw_jM3rGxHkG0U4TNKmhOLimDuGE-LSW5TParpylpFUNsj2oZIRwxiR45SW3K8ZsSQ3jAfP9BNio4JBtp3IIcLw_Y/s1600/sun3.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiPgunjcE7bD_bmbRK_i3A18yHgCkgEe6Gxt0JfiHtOGgUPhuh7q-qw_jM3rGxHkG0U4TNKmhOLimDuGE-LSW5TParpylpFUNsj2oZIRwxiR45SW3K8ZsSQ3jAfP9BNio4JBtp3IIcLw_Y/s400/sun3.jpg" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Sleeping Beauty</td></tr>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEitZ4u-gXdqHogWvrE9R9AYPhef_GMsUFyb3FohjX_Gh3EIpQ2z-c3LnJBkiRQhAuXlvsXZj47cXUarKyrjSHpL2JPpEZD3jEzEWMTcT-Am_AISg41woYhzQBcQtZq3B2-1IX7RRU6OmVU/s1600/sun4.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEitZ4u-gXdqHogWvrE9R9AYPhef_GMsUFyb3FohjX_Gh3EIpQ2z-c3LnJBkiRQhAuXlvsXZj47cXUarKyrjSHpL2JPpEZD3jEzEWMTcT-Am_AISg41woYhzQBcQtZq3B2-1IX7RRU6OmVU/s400/sun4.jpg" width="297" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Beautiful Quilt from my Pre-K kids. I LOOOVE it!</td></tr>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjZNhFhNrHoRNweoTJ1kfIizjm4FOnCtM_PDYjM44rT41aaEr9durwEErtX1LIdbUSt13-DRzt32t8SpgOGWtr-90FakSTXJDXSBALqIBA43X-MPZrkG9XvA68S9SZXUYyk3xH8npqGJjM/s1600/sun5.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="297" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjZNhFhNrHoRNweoTJ1kfIizjm4FOnCtM_PDYjM44rT41aaEr9durwEErtX1LIdbUSt13-DRzt32t8SpgOGWtr-90FakSTXJDXSBALqIBA43X-MPZrkG9XvA68S9SZXUYyk3xH8npqGJjM/s400/sun5.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Some of the wallhangings I bought for Sunni's room</td></tr>
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wreeveshttp://www.blogger.com/profile/02694676660122028787noreply@blogger.com1tag:blogger.com,1999:blog-3688857526446988837.post-52346336264880065592012-12-21T23:28:00.002-08:002012-12-21T23:28:06.255-08:00Eating & PoopingSunni is looking and feeling a lot better today. Hallelujah! <br />
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She got her first food on Wednesday, December 19, at 74 days old! Wow! Hard to believe anyone can go that long without food. She is not eating with her mouth, of course, and it is not even going into her stomach (but it is a start!). She is getting 8.4cc's continuously every hour. It is not breast milk though, for now. It is a lower calorie formula. It is pumped through the yellow tube you see in her picture (below) and bypasses her stomach straight to her intestines. <br />
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She pooped today! A real-ish poop! Sorry if thats TMI for you but for me it is EXCITING!! Shawn even got a picture of it sent to him today. lol If we can just get on a regular BM schedule that would be awesome. That means her body is starting to wake up and work and accept food. Eventually she will not need that yellow tube and we will be able to feed her stomach. When that happens we will be feeding her through her g-tube. That tube was surgically placed in her abdomen that will feed her stomach directly. I now I have mentioned this several times before but I will say it again....it will be a long road before she takes anything by mouth. She has a terrible oral aversion because she associates anything being put in her mouth as a negative thing. Her own fingers gag her. It is heartbreaking. If you want to know more about g-tubes this is a good site-- <a href="http://kidshealth.org/parent/system/surgery/g_tube.html">http://kidshealth.org/parent/system/surgery/g_tube.html</a><br />
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Currently Sunni is just recovering from surgery, working on her breathing, eating, and pooping. That is sounding more and more like a real baby. Now if we could start removing some of those lines & tubes going in her. She will be 11 weeks old tomorrow :)<br />
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I took the boys & Shawn to the airport yesterday to send them home. I was sad that I had to spend doomsday and then Christmas alone. Well, when I woke up still alive today (haha) I had something telling me that I needed to figure out a way to make it home for Christmas. I am very, VERY torn on this decision. Sunni is doing good and has great nurses to take care of her. She is really young and will not remember this time. But my boys are old enough to remember and I sort of feel like I need to be there on Christmas for them (and me too). So I am trying to figure everything out. Prayers for clarity on this difficult choice I have to make would be appreciated. I wish I could be two places at once, dangit.<br />
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Oh, and the bills are finally showing their ugly, expensive, outrageous, INSANE faces. I saw that her repair surgery alone was $24,000. I wish I were a surgeon. Ok, not really. But that is barely under what I make for an entire year! LOL <br />
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiYOC6kDFNOz4rWPHEzV5WKyRl7oPkrf2fHogy2nPkHSMms3_ts9PA53Cs8RDq_X3sJ1ZDT5GTGPRmb77wxOFwLF9-1kGLEO1PlTVfQlz6IdFg-kRlmORZsca-Fhcxi6twVuhVxLhJn8gA/s1600/babe.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiYOC6kDFNOz4rWPHEzV5WKyRl7oPkrf2fHogy2nPkHSMms3_ts9PA53Cs8RDq_X3sJ1ZDT5GTGPRmb77wxOFwLF9-1kGLEO1PlTVfQlz6IdFg-kRlmORZsca-Fhcxi6twVuhVxLhJn8gA/s400/babe.jpg" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Her First Feed</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjX5T-HdN2rD3hVR-S1uYNZaSOUYv-Gp9PKfymWPAtmqUt8MjZ5n1LaRxwzjTqWY84rfqBA5X1xFZZ6q1xKdct_lF6inoaIt8H8rk4R4Y8GMkBd0f2mDCiBrpb-LSertLKc0O1wfZpu2zE/s1600/babe1.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjX5T-HdN2rD3hVR-S1uYNZaSOUYv-Gp9PKfymWPAtmqUt8MjZ5n1LaRxwzjTqWY84rfqBA5X1xFZZ6q1xKdct_lF6inoaIt8H8rk4R4Y8GMkBd0f2mDCiBrpb-LSertLKc0O1wfZpu2zE/s400/babe1.jpg" width="297" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Adorable!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg8C3SHZsXpMLaed62dhzCMvRBoWlNs5G9PVjRtJDkBPH1GJPQcx5yFWZ3DJi1AVnUxJqVcSFS8Vh71idfXeWbqMDQlk7AliSCBf_JRU5TbW91TPdiJb3N5EL8qVfmuQGwwGR_x4fL7do8/s1600/babe2.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg8C3SHZsXpMLaed62dhzCMvRBoWlNs5G9PVjRtJDkBPH1GJPQcx5yFWZ3DJi1AVnUxJqVcSFS8Vh71idfXeWbqMDQlk7AliSCBf_JRU5TbW91TPdiJb3N5EL8qVfmuQGwwGR_x4fL7do8/s400/babe2.jpg" width="297" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Merry Christmas! </td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEipeOirIqobxHChepjZUVeF5VJ16_TzrfjZ1Xb24W-eSZzArENY-J1WSY67qoEnZdkMXJP16jqZCLrFmNCCWSH6cmVVgvS7naNJAu843VGaoygXnuUaXwlKKINamzEmC3AYk9NqVMv-pNA/s1600/babe3.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEipeOirIqobxHChepjZUVeF5VJ16_TzrfjZ1Xb24W-eSZzArENY-J1WSY67qoEnZdkMXJP16jqZCLrFmNCCWSH6cmVVgvS7naNJAu843VGaoygXnuUaXwlKKINamzEmC3AYk9NqVMv-pNA/s400/babe3.jpg" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Perry, at it again! He made mustaches for her, her mobile, and ALL her animals. :)</td></tr>
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<br />wreeveshttp://www.blogger.com/profile/02694676660122028787noreply@blogger.com2tag:blogger.com,1999:blog-3688857526446988837.post-81511695727300705432012-12-19T22:02:00.002-08:002012-12-19T22:02:23.585-08:00Tummy SurgeryMonday, December 17th, Sunni finally had surgery to fix her digesting//gastro issues. Like I have said before they were planning to do a scope first to find the problem and the ideal scenario would have been to find the issue and be able to fix it without having to make an incision. As with every other issue so far in Sunni's short life that sounded good in theory but did not happen.<div>
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We were told that she would go back to surgery at 10 but they could not find this thing they call a blood band. It just has stickers on it with numbers (I guess specific to her?--not sure) so they had to do MORE blood work and make her a new band before she could go to surgery. This mommy was NOT happy. When my baby girl has to be poked for someone elses screw up I tend to get a little upset.</div>
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She ended up going back at 11 and the procedure started at 11:28. After sedated the ENT was able to look at her vocal cords and found that she has good airways BUT she has a paralyzed vocal cord. There is a chance that it could resolve the issue on its own but there is also a chance that it might not. If it does not-when she gets older she can have another procedure done that will help it. On a side note--the ENT just happened to be from Borger (15 miles from where I live); we only found out because he had to call us and noticed the 806 area code. AND the nurse told me that he read my blog (*embarrassing*). How he found it, I do not know. Haha.</div>
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After the ENT was done they started the scope part of the procedure. They ran the camera down and found out that she does not have pyloric stenosis. I believe at that point they decided to run a tube down her nose, bypass the stomach, and feed it into the intestines. I can not promise you the rest of this is FACT because we have yet to talk to surgery to verify and our new neonatologist can not answer any of these questions, but I will do my best from what we *thought* we understood when the surgeon briefed us right after surgery. Evidently placing that tube did not go as planned because at 1:00 they decided they would have to make an incision. I do not think that tube was going in like it was supposed to so they new there was some sort of obstruction that they would have to open her up to find/fix.</div>
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From what we understood, and this might be all wrong, Sunni's liver was towards the top of her abdomen when she was born and when she had her repair surgery. As time went on it shifted down along with everything else shifting as well. The falciform ligament is a ligament that attaches the liver to the diaphragm. Somehow the ligament put a kink in her intestines and nothing was able to pass through. I am not sure how they corrected this but they did and then got the tube to pass into the intestine, like planned.</div>
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The also inserted a g-tube through the outside of her belly into her stomach. This will allow Sunni to be fed the nutrition she needs directly to her stomach. She is going to have a big oral aversion which I have talked about in a few blogs. She does not like anything in her mouth whatsoever---not even her own fingers. She barely touches her own tongue and starts gagging. Going into this I was very against getting one of these tubes but it means that we will get to go home sooner and work on oral feedings at home. Feeding is going to be one of Sunni's biggest obstacles that will probably affect her from now on.</div>
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So you are probably wondering why she needed the tube down her nose and the one in her stomach. They are using the one down her nose to start off with. It feeds the intestines and the hope is to "wake them up" and get them to working. So poop is what we need! She needs to start having bm's. When that starts happening we will be able to try the stomach tube. When that starts working will will be able to pull the nose tube out and just use the g-tube. As far as bottle feeding goes it is probably not going to happen soon but we can always pray and hope for another miracle. We will be able to work on that at home.</div>
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And the H word. Home. We are very afraid to ask that question but I have a personal goal of being home early next year---like before the first of February. This all depends on Sunni and her progress with feeds and assuming that her breathing improves and stays that way. So join me in prayer to get my little family back together (in the Texas Panhandle) by January 31, 2013! Pray for poop and progress with feeding.</div>
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After surgery Monday she looked and did ok. She was just really out of it from the sedation, which is totally normal. The first time I saw her I was sick. The boys were done setting still and being quite at the hospital so I had to take them back to the RMH. Shawn sent me a picture of her when she came back to her room. I was just so emotional and sick over it. I was kind of blindsided by the g-tube. Shawn signed consent for the surgery and I was not there when they went over details. I was not expecting the tube. I knew she would be intubated but I guess I did not really think about it. All the tubes back in her when she had worked so hard getting them out one by one just gave me a defeated feeling and it felt like we were back to day 1. I felt so bad for her. When I finally got to see her in person that night I cried a little but not too much. I just cant believe how tough she is. I wish she did not know what pain was.</div>
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Tuesday she started swelling up, especially in the face, and was really pale. The swelling gave me terrible flashbacks of the last time when she got really, really, sick and started having seizures and the stroke. Tuesday was pretty hard. The dr was against giving her lasix to help her pee some of that swelling off for some reason. She was extubated Tuesday night. She did not do as well as we had anticipated. She had to have nose cannulas set at a higher oxygen rate than ever before. She was desatting often. We thought she might have to be reintubated. I had to leave just so I wouldnt have a heart attack. She ended up being ok and Wednesday morning someone finally talked the dr into giving lasix (hallelujah!). That helped the swelling a lot! She is still swollen and not looking quite like herself but she has improved a lot today. She isnt going to let surgery get her down for too long. Such a fighter! </div>
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My boys have been here since Friday and they have to go back home tomorrow. I am very sad about that. I will be alone for Christmas but I am just going to be thankful that I have Sunni to share it with and that we have been blessed. She is our Christmas miracle. Thank you God, we owe it to you!</div>
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PS--If I find some of this surgery info is inaccurate whenever the surgeons decide to come around when I am around I will update. :) And as always, forgive my grammar, run-ons, misspellings, etc. </div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgd3-Awl3Nk3M0aET6zdZkWQynK-4vbedYz_T9S3jf_BIzM0H2Y-kQUBWbtDHTVyZCjkKlDC1ePkP5c4XNKozrijOu2TaFnJAmXwqnKBSCi2uBPgGsZ464WGx885JFEbHLlwlSVbAVqq7Y/s1600/baby10.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgd3-Awl3Nk3M0aET6zdZkWQynK-4vbedYz_T9S3jf_BIzM0H2Y-kQUBWbtDHTVyZCjkKlDC1ePkP5c4XNKozrijOu2TaFnJAmXwqnKBSCi2uBPgGsZ464WGx885JFEbHLlwlSVbAVqq7Y/s400/baby10.jpg" width="297" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Sunni in her awesome onsie from Mrs. Lidia</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjaaZ-6i5EOp5icg3d5Lf8tyuMIQc4aNclKc-k4WxILwmQen3jI4-H_DNLDud-jqvoKPYn64i8AsQbZKwY1du_e9Vg1X1xBh0f6F8H6JHUj1IcyAqFH2iBONFgNp7SwqeHX6cawwOB-zzs/s1600/baby11.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjaaZ-6i5EOp5icg3d5Lf8tyuMIQc4aNclKc-k4WxILwmQen3jI4-H_DNLDud-jqvoKPYn64i8AsQbZKwY1du_e9Vg1X1xBh0f6F8H6JHUj1IcyAqFH2iBONFgNp7SwqeHX6cawwOB-zzs/s400/baby11.jpg" width="297" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">On her way to the OR</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiYmzm_oE_jVDO_mHt3AZuH5PUMmqp2v_3LVKKJavL_A_1cSoI-txQp9GY5yq16FtYVEygENmHXhVejlOfW5zPZ_tah_6rnPOBYMeQEZYnMQw86OkJbHudwiMnGoqNDY4foVNne4JG52Pw/s1600/baby12.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiYmzm_oE_jVDO_mHt3AZuH5PUMmqp2v_3LVKKJavL_A_1cSoI-txQp9GY5yq16FtYVEygENmHXhVejlOfW5zPZ_tah_6rnPOBYMeQEZYnMQw86OkJbHudwiMnGoqNDY4foVNne4JG52Pw/s400/baby12.jpg" width="297" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Cooper drew this while Sunni was in surgery. So sweet. "God Help Sunni."</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh8ixAeJ8guTD5V1IsSCw70zRMFw6HgpauUZTR56tMT_9Fa0iBt3a3XVeHaI5igAf09vrcdpcBXQnEzhVVuhaA-n6I_9j9XQaIgGM5ECVj4UT1chT59I50khqpwkeHOMF4zw1M1ZO_1ZVA/s1600/baby13.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh8ixAeJ8guTD5V1IsSCw70zRMFw6HgpauUZTR56tMT_9Fa0iBt3a3XVeHaI5igAf09vrcdpcBXQnEzhVVuhaA-n6I_9j9XQaIgGM5ECVj4UT1chT59I50khqpwkeHOMF4zw1M1ZO_1ZVA/s400/baby13.jpg" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Right out of surgery 12-17-12</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh76xFuDtcp_G-4unhC6SbTVKRgzowTfuHR6K_M_ylay2ImBk0MIV5XLPNXn2CNpoXibGhcKzfqLP1sbbq9J3Nmm_v5vlEr1f4DCiQJcE4lBdLc3eoTZWLHGCVtD6GuXFzsqys2kjQ9o7M/s1600/baby7.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh76xFuDtcp_G-4unhC6SbTVKRgzowTfuHR6K_M_ylay2ImBk0MIV5XLPNXn2CNpoXibGhcKzfqLP1sbbq9J3Nmm_v5vlEr1f4DCiQJcE4lBdLc3eoTZWLHGCVtD6GuXFzsqys2kjQ9o7M/s400/baby7.jpg" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Swollen but still adorable :)</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgkl-hFpa2IbqF_2RZUptwGzjMtb2-SWtc3QM0rSkkxxF2BiLzdyn4PyzAYU-RLMZp-PSLfjXJxZqm4lDQRalghg5KaEuzKGKZVf20CnmK3nVHZtCxkhEzOb5xAvB7Sr4Yv1_l65LWPh9k/s1600/baby8.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgkl-hFpa2IbqF_2RZUptwGzjMtb2-SWtc3QM0rSkkxxF2BiLzdyn4PyzAYU-RLMZp-PSLfjXJxZqm4lDQRalghg5KaEuzKGKZVf20CnmK3nVHZtCxkhEzOb5xAvB7Sr4Yv1_l65LWPh9k/s400/baby8.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Sweet Sunni</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEihwPE0qFMzb76bv60sW2aEDPRXVVp9g9ulJ_-tFY9dlTnBs81UqNufqC4r9mhrDKSPMNefkVWaIs4n1_h_NDIuHMb6ssGTYhfBrIrgIoSISf5yZSzIYLOOEz0eTI_PhGuWVMBn_uXraLw/s1600/baby9.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEihwPE0qFMzb76bv60sW2aEDPRXVVp9g9ulJ_-tFY9dlTnBs81UqNufqC4r9mhrDKSPMNefkVWaIs4n1_h_NDIuHMb6ssGTYhfBrIrgIoSISf5yZSzIYLOOEz0eTI_PhGuWVMBn_uXraLw/s400/baby9.jpg" width="297" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">He adores his Sister <3</td></tr>
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wreeveshttp://www.blogger.com/profile/02694676660122028787noreply@blogger.com1tag:blogger.com,1999:blog-3688857526446988837.post-5618884094515660422012-12-12T16:51:00.000-08:002012-12-12T16:51:01.732-08:00Gagging & SuchSunni is still on room air! There are times I definitely spazz out and wish she still had some oxygen to help her out--like when she is gagging.<br />
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She has major oral aversion. I do not see her eating by mouth ANYTIME soon. She will not suck on a pacifier---she cant even touch it to her tongue without having reflux then gagging which sometimes results in throw up. She does this thing where she gags because her secretions are so thick, her whole face turns red, eyes roll in the back of her head and she tries really hard to hack it up but it gets stuck--and of course she desats. It freaks me out every time.<br />
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An ENT came and looked at her vocal cords yesterday because she still is not making any sounds when she cries. From what he could see her vocal cords did not look damaged to him but she was so swollen and inflamed from her acid and reflux that he could not get a really good look. So during surgery Monday they are going to see if they can team up and get a better look after she is sedated.<br />
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So here is a more detailed version of what is going to happen in surgery on Monday. The first thing they are going to do is run a camera/scope down her mouth to her belly and see what they see down there. They are going to all use their heads and see if there is a way to resolve the problem without making any incisions. That of course would be the optimal scenario. They may even decide to bypass the tummy and put in a feeding tube that would directly feed her intestines (from what I understand). In other words they are going to try everything they can to avoid having to cut her open and compromising her abdomen again. Of course either way she will have to be intubated which totally stinks. Hopefully she gets to come off the vent again shortly after but you never know!<br />
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She has has a few sessions of physical therapy. Some things she does well and others...not so much. That is to be expected when a baby has been in one spot for 2 months with very little movement. The PT is really nice and showed me some things I can do with her. It is kind of like play time---more fun for me than her. lol<br />
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So to sum it up we have been playing, gagging, cuddling, gagging, waiting for daddy to get here (FRIDAY) and gagging and throwing up some more. <br />
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<tr><td class="tr-caption" style="text-align: center;">Merry Christmas Sunni! From one of her fav nurses, Rhiannon :)</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">I had to throw this in there because I got to see the Weenie Wagon for the first time IN PERSON! haha</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi6g25Y2Xaw0jXY6M9TSMdEmACn2Gc9Xn2rX6fHnAIBWPp_jtzVZbmCxfqz8XuDF467pkjidpYv-jfg0jivsjqLVh_18yWaijJ1bk_Ags7J834Kk1-MBXJYLhQnnCzwMCMzs40A8PxOwg4/s1600/baby2.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi6g25Y2Xaw0jXY6M9TSMdEmACn2Gc9Xn2rX6fHnAIBWPp_jtzVZbmCxfqz8XuDF467pkjidpYv-jfg0jivsjqLVh_18yWaijJ1bk_Ags7J834Kk1-MBXJYLhQnnCzwMCMzs40A8PxOwg4/s400/baby2.jpg" width="297" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Sleeping Beauty with her fav hat from Katy Cox :)</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Physical Therapist (Shelly) singing Jingle Bells</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">BIG eyes! I see you!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj_kc9hHIWXlO3miXZiQpaPk0xQp4as7Qf5LJcUulEc_N2lDk-ie0WlCnE-2XwxfdWTjHhiSId9bNCu3-TJ5MfbJeTEN-oDyDTGhqIcUGxv-3Xw2xnZmVSqmwK-KNjK9pD9b3kqgz-VGZQ/s1600/baby5.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="297" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj_kc9hHIWXlO3miXZiQpaPk0xQp4as7Qf5LJcUulEc_N2lDk-ie0WlCnE-2XwxfdWTjHhiSId9bNCu3-TJ5MfbJeTEN-oDyDTGhqIcUGxv-3Xw2xnZmVSqmwK-KNjK9pD9b3kqgz-VGZQ/s400/baby5.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">All ready for Christmas with her bow from another one of her fav nurses, Michelle</td></tr>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhJboRx5QZcR2Kj3v9Chc9eJAQRjxhy1qH8DXUHumhCgZFisPZQkGK5PpVJzDa1A-Ga5tylafaAYB4y1tgfDn3vhRJkfX20_YsnoPc9ycNafIxM1_eGEZCz6JKZ3M6tKYI61bKdX3DRepU/s1600/baby6.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="297" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhJboRx5QZcR2Kj3v9Chc9eJAQRjxhy1qH8DXUHumhCgZFisPZQkGK5PpVJzDa1A-Ga5tylafaAYB4y1tgfDn3vhRJkfX20_YsnoPc9ycNafIxM1_eGEZCz6JKZ3M6tKYI61bKdX3DRepU/s400/baby6.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Sweet, Sweet Sunni</td></tr>
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<br />wreeveshttp://www.blogger.com/profile/02694676660122028787noreply@blogger.com4tag:blogger.com,1999:blog-3688857526446988837.post-4666733480094683692012-12-09T22:11:00.002-08:002012-12-09T22:11:31.485-08:00No News is Good News :)I just realized that I have not updated in a week. I am so sorry--especially if you do not follow me on facebook where I have made a few little updates here and there.<br />
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Sunni is still doing very well. The same day that I wrote the last blog she came off the high flow nose cannulas to ROOM AIR! Nothing! It was amazing. I am so proud of her. I am so amazed by her strength and determination and how far she has come.<br />
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She worked herself really hard breathing on her own for 3 days and then she started desatting randomly as low as the 70s. They want her to be above 90 so she had to go back on oxygen. She just got the little nose cannulas and that helped her get the rest she needed.<br />
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Since then they have weaned her down on the amount of oxygen she gets from the cannulas and I am guessing they will try her off again soon. I really do not see the harm in letting her hang out on them for a while....but I guess that is why I am a teacher and not a doctor. Haha.<br />
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All other issues are the same. She still does not eat. We are still waiting on the 17th for surgery. <br />
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I am REALLY looking forward to the 14th when Shawn and my boys will be here. I miss them SO bad. <br />
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgxSnH71aBHoSgYRRNCASprn08nhFfHULCgBNu5ZeuZ5kMK8pEc89K0zx5F1g5uHwy7mb8d2byg5qBV-bfdokAnXmimVdCvXt87zplfpvTVNv9ZTXIDAo5xr9FlNGCs1j2_t_OQoPa3y6Y/s1600/sunni20.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgxSnH71aBHoSgYRRNCASprn08nhFfHULCgBNu5ZeuZ5kMK8pEc89K0zx5F1g5uHwy7mb8d2byg5qBV-bfdokAnXmimVdCvXt87zplfpvTVNv9ZTXIDAo5xr9FlNGCs1j2_t_OQoPa3y6Y/s400/sunni20.jpg" width="297" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">2 Months Old (Already?)</td></tr>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjOoq4b0c31hekjCZEvoaSLoZo85n6Z8o2E1NCcNgGYBEGBl_c1HvJRHCxvXL3TrN2bi15HOg6jHGmocKXS_wK7JFEGsLuxDecIagTT6C-Z2WQ8mYo96XqHoYb4bPvv1kTZeIAzpn-7BiU/s1600/sunni21.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjOoq4b0c31hekjCZEvoaSLoZo85n6Z8o2E1NCcNgGYBEGBl_c1HvJRHCxvXL3TrN2bi15HOg6jHGmocKXS_wK7JFEGsLuxDecIagTT6C-Z2WQ8mYo96XqHoYb4bPvv1kTZeIAzpn-7BiU/s400/sunni21.jpg" width="297" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Perry sure is creative!</td></tr>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjD5pJ0VpiMwKxF0YJOEq8QmOr0s4Aix1LSGB5Rgx4xSGMMgUB3Ol-PRPcKnO0Sl4f2vDRYmnq9shobjdKA1vQ3aE-jttN_WPR0wr7wPGcUKoQnQ5IcQPehFEwl3nBnD59mJuNfl56znYg/s1600/sunni22.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjD5pJ0VpiMwKxF0YJOEq8QmOr0s4Aix1LSGB5Rgx4xSGMMgUB3Ol-PRPcKnO0Sl4f2vDRYmnq9shobjdKA1vQ3aE-jttN_WPR0wr7wPGcUKoQnQ5IcQPehFEwl3nBnD59mJuNfl56znYg/s400/sunni22.jpg" width="297" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">First day in a bouncy seat. So stinkin adorable!</td></tr>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj3mOm_fAVplCDDuOxrnTxBVEBwlWZKcAfeX-rS_OKal2cQoaGnAuAcZXkhfyJptWS7QyUYcgMYkhslz1UmSgMZIEnMRnkdrFb-BAsEkyyTOC8ob9pF2G7r6trVtPIKJA8Xy92s3-9BLsk/s1600/sunni23.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj3mOm_fAVplCDDuOxrnTxBVEBwlWZKcAfeX-rS_OKal2cQoaGnAuAcZXkhfyJptWS7QyUYcgMYkhslz1UmSgMZIEnMRnkdrFb-BAsEkyyTOC8ob9pF2G7r6trVtPIKJA8Xy92s3-9BLsk/s400/sunni23.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Pretty in Red</td></tr>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiAbJlUDg-ljYlujjZpyR1Q4iqvuCEoKCVn32hO7_mKdN_Nxh8zw_bg7VxMELOfCT9v-PpJWvBuXAyG4agYdkZ6w5bqUr2NdtG79V9JvoiiPgAyExM1CL7MlBCxZdSO_hoExyQtLadgTV0/s1600/sunni24.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiAbJlUDg-ljYlujjZpyR1Q4iqvuCEoKCVn32hO7_mKdN_Nxh8zw_bg7VxMELOfCT9v-PpJWvBuXAyG4agYdkZ6w5bqUr2NdtG79V9JvoiiPgAyExM1CL7MlBCxZdSO_hoExyQtLadgTV0/s400/sunni24.jpg" width="297" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Perry made a really neat heart mobile!</td></tr>
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<br />wreeveshttp://www.blogger.com/profile/02694676660122028787noreply@blogger.com0tag:blogger.com,1999:blog-3688857526446988837.post-7342086221370436752012-12-03T16:57:00.005-08:002012-12-03T16:59:43.149-08:00Off CPAP!Sunni is now off the vent, off cpap, and on high flow nose cannulas! How exciting is that!!!?<br />
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Yesterday they put her on the high flow cannulas and she has done great! Yesterday it was on 2 liters and today they weaned it down to 1.5 liters. The stronger her lungs get the closer we get to having.....nothing! Room air! She is really doing a great job. She has been happier for much longer periods of time and is off all pain medication.<br />
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For the first time today I feel like we really bonded......like you do with a normal baby. It was awesome. I just love her sooo stinkin much!<br />
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There really is not a whole lot to report. She still is not feeding, of course, so we are just hanging out til surgery on the 17th. Not a lot will be happening til then (knock on wood). We will just be weaning on the oxygen and getting lots of play time in. Sunni and I are ready for the 14th so we can play with daddy and brothers, too!<br />
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<tr><td style="text-align: center;">Perry, our elf on the shelf has been checking in on Sunni too(with the help of her nurses--they rock)! She has not been naughty though---he must just be just checkin' in to see if she is doing ok :)<br />
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:)<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiH21LmkYaj_S_gprQohFWKEgbd4-FxeKEEddmUdE8NChjqfguetveQ3BhQGiHEfdoDFWmUd_6t7hi-hhyerTBuVTSKH7XR4RQSTZ55il0vsaPtmxv_yXzsKwN0uM5zT2JdtrQQkDSCV7E/s1600/sunni16.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="297" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiH21LmkYaj_S_gprQohFWKEgbd4-FxeKEEddmUdE8NChjqfguetveQ3BhQGiHEfdoDFWmUd_6t7hi-hhyerTBuVTSKH7XR4RQSTZ55il0vsaPtmxv_yXzsKwN0uM5zT2JdtrQQkDSCV7E/s400/sunni16.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Sweet Angel</td></tr>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgoYZnf0qKkRDmCnhf6tkXiDNpRCo8KAArgQh-5nyZux768rcG4CZff74H5_dF0CcHmFmvhJUIGqcjeZUbiUFfy4U5yNty0FNTwtPeAP7QmwQYhb813Bc59Qvkbko7jEC2PEtE2Eo8zFjI/s1600/sunni17.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgoYZnf0qKkRDmCnhf6tkXiDNpRCo8KAArgQh-5nyZux768rcG4CZff74H5_dF0CcHmFmvhJUIGqcjeZUbiUFfy4U5yNty0FNTwtPeAP7QmwQYhb813Bc59Qvkbko7jEC2PEtE2Eo8zFjI/s400/sunni17.jpg" width="297" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Band-Aid Mess 12/3 </td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjY0LVxLMvc_1RRPY7OFG67fh5R4yY7rmyNkj51LHN_TAX6fDpgWLnPfGnn3b8f3Wh806r5dqxwZavNSTbWohzVAtAn2mGHmP4viVXuv_AGjzKutref1QSy2FcwQm85-te_pnPaOJJrdcA/s1600/sunni18.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjY0LVxLMvc_1RRPY7OFG67fh5R4yY7rmyNkj51LHN_TAX6fDpgWLnPfGnn3b8f3Wh806r5dqxwZavNSTbWohzVAtAn2mGHmP4viVXuv_AGjzKutref1QSy2FcwQm85-te_pnPaOJJrdcA/s400/sunni18.jpg" width="297" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Snowflakes 12/2</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiXGa_Rg6w1esSHikQKLUhcU-9eHkkEnUYnGOG0O0QUoZPTcH332gAoQBd5-a7ea4IPO2CFUkTv8v0NMFYUTBd4yIlx1ZUQz7cxc8iaXmBzMpaN6C9jy0N-37Y0scPjjE-XxOeSqTV4ZL0/s1600/sunni19.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiXGa_Rg6w1esSHikQKLUhcU-9eHkkEnUYnGOG0O0QUoZPTcH332gAoQBd5-a7ea4IPO2CFUkTv8v0NMFYUTBd4yIlx1ZUQz7cxc8iaXmBzMpaN6C9jy0N-37Y0scPjjE-XxOeSqTV4ZL0/s400/sunni19.jpg" width="297" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Flying in via Hot Air Balloon! 12/1</td></tr>
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<br />wreeveshttp://www.blogger.com/profile/02694676660122028787noreply@blogger.com2tag:blogger.com,1999:blog-3688857526446988837.post-87934233107094919582012-12-01T16:12:00.000-08:002012-12-01T16:19:46.504-08:008 Weeks OldSunni is 8 weeks old today! Wow! I think I say that every time but time flies even when you aren't having fun.<br />
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Miss Sunni has been on CPAP for 3 days now and might be OFF CPAP tomorrow. Today she is on the lowest setting and has been doing great. Tomorrow they are going to try nose cannulas. That is just the normal nosed prongs you are used to seeing on patients that need more oxygen support. I am excited about this! 2 weeks ago I would not have thought this to be possible. God has performed a miracle through Sunni! We will get to see her little face better and hopefully she will not be as ticked about it as she is with cpap. She really isn't enjoying her mask much and I can not say that I blame her!<br />
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So surgery is set for the 17th. They know she has some sort of obstruction around the pylorus area. They will have a better idea once they get in there. Not having a definite answer or plan is worrisome to me but I have a lot of faith in these surgeons and doctors. And I know God has His hand on Sunni and she will get through this. Shawn and the boys are flying down here on the 14th so they will be here for her surgery! Thank goodness!<br />
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I think through all the complications that Sunni has had in this process I sometimes forget to praise God and be thankful for the other things that have "gone right." So today instead of praying for specific things I would just like to praise Him for the miracle he has given me, for Sunni's lungs to have made a complete turn around, and for her to have a normal functioning heart. Thank you God for Sunni. She completes our family and we love her to the moon and back!<br />
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If you have not already signed this....please do! It only takes 2 minutes! CDH research!<br />
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<a href="http://www.change.org/petitions/in-support-of-congressional-bill-s-3396-for-congenital-diaphragmatic-hernia-research?utm_campaign=share_button_mobile&utm_medium=facebook&utm_source=share_petition&utm_term=15937783">http://www.change.org/petitions/in-support-of-congressional-bill-s-3396-for-congenital-diaphragmatic-hernia-research?utm_campaign=share_button_mobile&utm_medium=facebook&utm_source=share_petition&utm_term=15937783</a>wreeveshttp://www.blogger.com/profile/02694676660122028787noreply@blogger.com1tag:blogger.com,1999:blog-3688857526446988837.post-23720216819947905022012-11-30T09:44:00.005-08:002012-11-30T09:44:51.128-08:00The Roller Coaster Continues..Just when you think you can breathe (no pun intended) in NICU something else happens. <br />
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Sunni is doing excellent in most areas; most recently BREATHING! As of yesterday she is on cpap! This is a huge deal! HUGE! One doc suggested that some day she may have to be trached----Sunni proved them wrong. She is doing so good on cpap that she will probably be on a nose cannula or maybe even nothing by the end of next week! :)) Praise God!<br />
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So my last blog left off on Monday with the plan on being extubated the following day. So I went in Tuesday morning with that HIGH hope. I was so excited! I had planned on videoing it and taking lost of pictures. Well... she had just got back from having the upper GI test. She has had this once before and it ended in the same result. None of the barium passes through and she ends of gagging and barfing it up ALL day long. It is horrible to watch. HORRIBLE!<br />
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During rounds they explained that none of the barium passed through her bowel and that she was going to have to have surgery. They believe that she has pyloric stenosis. Food from your stomach passes through your pylorus into your small intestine. In pyloric stenosis the muscle is thickened and will not let that food pass. Sunni has all those symptoms but they did an ultrasound and the muscle does not look as thick as it typically does with other cases. At that point they decided surgery was needed to correct this and told me it would be Thursday or Friday. AND since she was going to have surgery they were not going to extubate her since she would have to be put right back on the vent for surgery. I was very upset. <br />
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I called Shawn and let him know and he immediately made plans to drive down Wednesday so that he could be here for surgery. They originally told me the surgery by Sunni's standards would be a piece of cake. So Wedneday Shawn drove down and Sunni had a terrible day. She is now off on both drips so she is awake and alert and she was very aware of that vent tube. She gagged and spit of all day Tuesday and Wednesday. Other than that not much happened. We waited around for surgery to set a time for surgery and never heard a thing.<br />
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Thursday morning Shawn made it up there and she was extubated! They didnt even call and tell us. And they had already made rounds and did NOT want to do surgery. They wanted to try a medication first that would supposedly relax the muscle and let food pass. I think it was called atrophy. I could be wrong though. At that point I felt like throwing a fit that would top any fit my 3 year old has ever thrown. Shawn just drove 600 miles for you to decide medication was an option? Are you serious? Why hasnt this been tried before? She hasn't eaten in 53 days. And this is just now brought to the table? I was still made about not getting to be there for the extubation as well. GRRR<br />
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So they explained to us how risky this surgery would be. She has already been through so much they needed to give her time to rest and heal. If they do the surgery she will more than likely lose her spleen the surgeon said. All the scar tissue would be a risk. And the main issue being that if it is truly pyloric stenosis and since her muscle is not thick like they typically see they could damage it all together. I did not ask exactly what that meant but I have a pretty good idea. The surgeon was very clear the surgery is not wanted, a last resort, very risky and dangerous.<br />
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WELL GUESS WHAT!! Today they say they HAVE to do surgery because that medicine they wanted to try is in a shortage across the US. Our luck. That is all I have for now. Shawn and I have a very difficult decision to make. As far as the docs are concerned this is our only option. I feel like there has to be a way of knowing that she does or does not have pyloric stenosis without cutting her open first. <br />
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The longer she is on TPN the more likely her liver will be damaged. Please pray for our decision making along with the doctors. Pray that if anything can be done other than surgery that it comes to light. Pray that if she does have to have this surgery that it is much more successful and easier than they are predicting.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhK9fqD7qe3c0IF93jH0mXs9n6FNEu93kz74ZIsStS_J9gMzc_dXd6BTMb3IfWn7KiYOO7uCNyhl1p7e8FLzcTBb5P_q6mT8x-Ps_hWBH4YxUekJ_mZ1yM_3jXNLr0yQnYKX2mCrPSsGFA/s1600/Sunni15.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="297" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhK9fqD7qe3c0IF93jH0mXs9n6FNEu93kz74ZIsStS_J9gMzc_dXd6BTMb3IfWn7KiYOO7uCNyhl1p7e8FLzcTBb5P_q6mT8x-Ps_hWBH4YxUekJ_mZ1yM_3jXNLr0yQnYKX2mCrPSsGFA/s400/Sunni15.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">CPAP! Yay! aka Elephant Mask</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjd_L56I8oL46weikKEh3iOKCESDt7vXIVw-30DiXk1ehurg-iru3CAxtLSqtSeDyZV50M7zZ2epsxu6Rmq2SNcND1A-Yid4f18avUp-VWypFtXFnP3Y_Fn_ClUYhRlTFn835TAq_VLr-8/s1600/sunni13.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="298" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjd_L56I8oL46weikKEh3iOKCESDt7vXIVw-30DiXk1ehurg-iru3CAxtLSqtSeDyZV50M7zZ2epsxu6Rmq2SNcND1A-Yid4f18avUp-VWypFtXFnP3Y_Fn_ClUYhRlTFn835TAq_VLr-8/s400/sunni13.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Sooo Beautiful! </td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgq9IJRi_UuXa5CPHVDEnW6mDPda2GItt4ssy-dRL69S510rEx_qmxiUi-fr5uWniEMJK8DX05aGCruTXx-CTrSFeN6rhrMC9Ba_E8IOcRYaQuEbd82QCcxbWDcaFvtsxA8Jd9t7zQgD7E/s1600/sunni14.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgq9IJRi_UuXa5CPHVDEnW6mDPda2GItt4ssy-dRL69S510rEx_qmxiUi-fr5uWniEMJK8DX05aGCruTXx-CTrSFeN6rhrMC9Ba_E8IOcRYaQuEbd82QCcxbWDcaFvtsxA8Jd9t7zQgD7E/s320/sunni14.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">I love these bracelets!</td></tr>
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<br />wreeveshttp://www.blogger.com/profile/02694676660122028787noreply@blogger.com4tag:blogger.com,1999:blog-3688857526446988837.post-67050278171405145102012-11-26T20:46:00.003-08:002012-11-26T20:52:44.778-08:00Very Special OutfitI have already wrote a blog today to update you but this deserves it's very own post because today Sunni got to wear a very special outfit.<br />
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When I first found out that Sunni had CDH I was 21 weeks pregnant. I started researching everything I could about CDH online. Some things were scary, some sad, and some very encouraging. Along the way I found that personal blogs from other CDH families were the best thing to read because they really told it "how it is."<br />
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In that search I found Baby Bee, aka Bonnie. She was born 4 days prior to me finding out about Sunni's condition. I ready every single blog that her sweet mommy posted and kept up with her every single day. I cried and smiled many, many times. I prayed for Bonnie like she was my own. I was rooting for her every step of the way. She too was on ECMO and had many trying times. Most importantly, Bonnie is a CDH survivor and she gave me hope! (You can find her blog listed on the right side of my page if you want to meet her).<br />
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So when my journey started after Sunni was born, Bonnie's mom, Leslie was there for advice and encouragement. One day I got a very special package in the mail from baby Bonnie. I immediately recognized it. It was an outfit that Bonnie wore in NICU and I had remembered seeing her pictured in it. How awesome! I was so excited! Then I read the card enclosed and found out that the outfit had belonged to another CDH survivor before Bonnie named Lilly. So Sunni is the 3rd CDH baby to wear this outfit and I think it it the coolest thing ever! It brings tears to my eyes, actually.<br />
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So here it is. Sunni in the very special outfit. Thank you Lilly and Bonnie! Sunni will too pass this outfit on when the time comes. It is SUCH an honor to wear this. :)<br />
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<br />wreeveshttp://www.blogger.com/profile/02694676660122028787noreply@blogger.com1tag:blogger.com,1999:blog-3688857526446988837.post-9695171182749406822012-11-26T20:29:00.001-08:002012-11-26T20:29:46.216-08:00Tomorrow is a BIG day!Sunni is still being a little rock star. She looks AWESOME! Today they went down more on the morphine. So she is at 5 on morphine and 10 on versed. We are slowly getting there! Hopefully getting off the meds her bowels will wake up. <br />
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Tomorrow is a BIG day for Sunni. They are going to take her off the vent and put her on cpap! That means she will not have a big tube in her throat anymore! We will be able to HEAR her for the first time! I know it will be very hoarse at first and for a while--but I am SO ready to hear her cries and see those lips! They think she will transition over really easy so I am hoping they are right--but there is always that chance she will not tolerate it. I have a feeling she will do just fine :)<br />
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The doctor said that they will try giving her a tiny bit of breast milk 24 hours after she is extubated. I am not sure that still stands though because they tried changing her repogle to gravity instead of suction today and she starting spitting up. Spitting up is also a sign of withdrawal though. Also they are ordering another upper GI test. So I will not hold my breath on the feeding thing.<br />
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She is having an MRI/MRA/MRV right now as I type. Hopefully it will be unchanged from the last one with the hematoma possibly going away. The radiologist is reaaaallllyyy slow at reading MRI's so we may or may not get those results tomorrow. I do not hold my breath for results anymore.<br />
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The doctor let me know that even though she looks amazing and has made a huge improvement to not think the battle is over. He said that was a big hurdle but the major bump in the road will be feeding. He said that most parents see what looks like a healthy baby and are ready to go home but feeding is frustrating and a long process. In other words, we will not be home anytime soon. I already knew that, thank goodness, from reading other CDH blogs. Otherwise I would be one of those parents that he was talking about.<br />
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Today my super awesome cousin picked me up and treated me to a pedicure and massage. It was awesome! So shout out to Kim for being the best and getting me out of the hospital for a few hours and making my toes all pretty. <3<br />
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I can not wait to report back tomorrow and let you all know how it goes! Pray, pray, pray!<br />
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<br />wreeveshttp://www.blogger.com/profile/02694676660122028787noreply@blogger.com2tag:blogger.com,1999:blog-3688857526446988837.post-84244506762565633792012-11-24T20:26:00.004-08:002012-11-24T20:26:56.037-08:00Milestone Day--7 Weeks!Today Sunni is 7 weeks old! It is hard to believe we have been in NICU for 49 days. <br />
4 BIG things happened today:<br />
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1. <b> She is now free of all chest tubes!!</b> Hip, Hip, Hooray! (Please fluid, STAY AWAY!)<br />
2. <b> She got to wear clothes for the first time today!</b> We barely got the outfit on her because it was newborn size and it was way too small. I did not think she would be 7 weeks old before she got to wear clothes. Oh well, that gives mommy something to go shop for :)<br />
3. <b>She got a BIG girl bed!</b> In NICU you have to "earn" these beds. That is what our nurse Michelle and I were talking about. It is just a blue railed bed but I remember telling Shawn that first week that I couldn't wait for Sunni to have a blue bed--(means they are doing better). She can regulate her own temperature and is working on getting some of those tubes removed so she got one!<br />
4. <b>Shawn and the boys went home today.</b> Shawn has to go back to work tomorrow night. We are really fortunate that he was able to stay this long. I got this! :-)<br />
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Sunni is still doing well. She has made LEAPS and BOUNDS of progress in the last 8 days. Since the minute after surgery last Friday (the 16th) she has steadily gotten better. Even though there have been a few rough spots with the few docs we didnt care for---this hospital is exceptional. I love ALL the nurses and the surgeons are excellent. We have had THE BEST fellow doc there is. And 3 of the 4 neonatologists we have had are wonderful. I am very happy we chose to come to Houston.<br />
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We have at least 6 primary nurses that take care of Sunni and we love each of them. They really love Sunni and take great care of her. We know we can rest easy at night and leave during the day if needed and she will be in great hands.<br />
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Sunni is still where she was on drips on my previous blog. She was getting a little agitated and showing some signs of withdrawal so they have let her "catch up" the last couple of days. I bet they will start going down again on Monday. She weighs 8lbs 4oz. So she has lost about a lb of fluid, which is awesome. <br />
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They are trialing her on to the cpap setting twice a day this weekend with a goal to extubate sometime this next week if possible. This is my ultimate goal. I have never heard her cry. Since she has been on the vent for 7 weeks she will probably not have much of a voice--but I cant wait to hear even the hoarse cry. I also want to see those precious lips. And most of all I want her to get off that vent and be able to do some breathing on her own.<br />
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She is still having bile and she is spitting up too, most likely due to the lowered drips and withdrawal. She is still not feeding but I think it will be soon! I am fixing to go on a crazy pumpfest to try and get my milk back---wish me luck!<br />
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That is really all. Not a whole lot of changes since the last blog. She is looking better and better everyday. Shawn got to hold her yesterday and I held her twice today! God is good!<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjYvfz5SnoKvp0mJlI6ptsHt22RR36popWG1yON3unoFwdGttRpV2W5lst_56px6vxWwHAShbqdajMi5aV9M_ezs2hMLz8_7Q88WhKJQKzQGsNe-JnK5NWt0Ri2OUOj46J-ZWJO02T9ACc/s1600/sunni1.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjYvfz5SnoKvp0mJlI6ptsHt22RR36popWG1yON3unoFwdGttRpV2W5lst_56px6vxWwHAShbqdajMi5aV9M_ezs2hMLz8_7Q88WhKJQKzQGsNe-JnK5NWt0Ri2OUOj46J-ZWJO02T9ACc/s320/sunni1.jpg" width="238" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Goodbye OLD bed!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgPNF9TykllHGhKqmqI6Ekd6IoXaf4hkBTvRHqj9vftWo74H5H31U8LY6-1uQKIn7IRf08LAQSuBz0YAFial-6R6Oj-OqxIFrMQ3h_HX8PrA5bpwXXRRuRtXgY6-c_aUhIr-k5IO5wL0HQ/s1600/sunni2.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgPNF9TykllHGhKqmqI6Ekd6IoXaf4hkBTvRHqj9vftWo74H5H31U8LY6-1uQKIn7IRf08LAQSuBz0YAFial-6R6Oj-OqxIFrMQ3h_HX8PrA5bpwXXRRuRtXgY6-c_aUhIr-k5IO5wL0HQ/s320/sunni2.jpg" width="238" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Looks like the monkey is praying--but her nurse put him there for something for her to look at during her tummy time.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg3QGFLx5w71hPVCXNUw63KNX0WNlkj4HVtBXvqwKm1ZLOXNp4pnSJZoGX0syV0-jNL1BCt4qtObBtn3r7NvYKw-AfyHgfj5jlan9lukq6SeXp8m_VPSnwQ5xmjSORhAH3L_gPt-bahTa8/s1600/sunni3.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg3QGFLx5w71hPVCXNUw63KNX0WNlkj4HVtBXvqwKm1ZLOXNp4pnSJZoGX0syV0-jNL1BCt4qtObBtn3r7NvYKw-AfyHgfj5jlan9lukq6SeXp8m_VPSnwQ5xmjSORhAH3L_gPt-bahTa8/s320/sunni3.jpg" width="238" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">In Mommy's Arms :)</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgv7Q3W8YebbwUSGmbGtehz359T4BCpNsWjzMlwYaEKgU2j6BMWNRHe8wi_bb8xpxaxCnX45f_21GYGYKvxFAgEIxkEZs7kOdXvPcpnsYZ8oLNUc1u2X75R_iXNgckkDVK1qcbCmEZ-DDg/s1600/sunni4.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="238" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgv7Q3W8YebbwUSGmbGtehz359T4BCpNsWjzMlwYaEKgU2j6BMWNRHe8wi_bb8xpxaxCnX45f_21GYGYKvxFAgEIxkEZs7kOdXvPcpnsYZ8oLNUc1u2X75R_iXNgckkDVK1qcbCmEZ-DDg/s320/sunni4.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Some of Sunni's Fans</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi6ziyI43U1rUxKJMUYjZ7gw1GCQohSVMjF_tCT9hjRngNdA_3G76MCFFShRpVxprbJRM6gYpt3NyB_hOHkjS2rRDZdWxygRONjJrqT6JusbvSZoP8cUgK3I5am1TIyhDjawOIYqYndfLQ/s1600/sunni5.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi6ziyI43U1rUxKJMUYjZ7gw1GCQohSVMjF_tCT9hjRngNdA_3G76MCFFShRpVxprbJRM6gYpt3NyB_hOHkjS2rRDZdWxygRONjJrqT6JusbvSZoP8cUgK3I5am1TIyhDjawOIYqYndfLQ/s320/sunni5.jpg" width="238" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Big Girl Bed & Mobile! Yay</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEissh_NPyt5fVYtwDgzcXv9v3QbmSw00EdwpkRjOq3crNojLpuB9wYoR7e5dnkAZ8yDSg7Km2Z5kZ8Qy4MQauMB7o3GiQkjmymtdKZuahebOrJY-zh28LXS51J-Hq7htpOBvNX4iwS8rCk/s1600/sunni6.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="239" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEissh_NPyt5fVYtwDgzcXv9v3QbmSw00EdwpkRjOq3crNojLpuB9wYoR7e5dnkAZ8yDSg7Km2Z5kZ8Qy4MQauMB7o3GiQkjmymtdKZuahebOrJY-zh28LXS51J-Hq7htpOBvNX4iwS8rCk/s320/sunni6.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">First Time in Clothes!!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg_rVqSfUXkBJ0xMeuYPYA9sntJaWkZtbqcZSmcJtH5goaJQw1EgNcHgfdMc0GMvy6fSyNyliDLrWPtGzW1ZuX6q23J5H5rszh3l-RvxskV_qWt_T3PwUMgitAHo5oy24aZTsC07CDEHOI/s1600/sunni7.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="239" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg_rVqSfUXkBJ0xMeuYPYA9sntJaWkZtbqcZSmcJtH5goaJQw1EgNcHgfdMc0GMvy6fSyNyliDLrWPtGzW1ZuX6q23J5H5rszh3l-RvxskV_qWt_T3PwUMgitAHo5oy24aZTsC07CDEHOI/s320/sunni7.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Napping with Monkey on Thanksgiving</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjJucClIRkFOQHNjFm-V5xAbJWnVRV4Md5Qd2sXas8gMp27zstMpGWuCrygZfKCuyUPXQaSZVhPP_LyavopuC0CmwvaxowdWOv-Dd-s3c2oe5chDNKi6NHtOeZEp39WVs42vIFMsMhKaAo/s1600/sunni8.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjJucClIRkFOQHNjFm-V5xAbJWnVRV4Md5Qd2sXas8gMp27zstMpGWuCrygZfKCuyUPXQaSZVhPP_LyavopuC0CmwvaxowdWOv-Dd-s3c2oe5chDNKi6NHtOeZEp39WVs42vIFMsMhKaAo/s320/sunni8.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Aunt M'Liss loves me :)</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhhqPW15uK-sSl2xxdz_rpFhcltwUDSbZA16tZYo3v4DkA3P1sZqV16RuqbccdWrSYkmcgOmT46RGbJNkouKBOIXBtmg4P7FaQZezW3vUA72QrqjS_Wy0-KtWClrvKCKZEY-o4Unvc8Hdo/s1600/sunni9.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhhqPW15uK-sSl2xxdz_rpFhcltwUDSbZA16tZYo3v4DkA3P1sZqV16RuqbccdWrSYkmcgOmT46RGbJNkouKBOIXBtmg4P7FaQZezW3vUA72QrqjS_Wy0-KtWClrvKCKZEY-o4Unvc8Hdo/s320/sunni9.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Happy Thanksgiving :-)</td></tr>
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<br />wreeveshttp://www.blogger.com/profile/02694676660122028787noreply@blogger.com4tag:blogger.com,1999:blog-3688857526446988837.post-24760960775425168612012-11-20T10:20:00.000-08:002012-11-20T10:36:15.334-08:00Still Looking Up...As the title of the blog says.....things are still looking up. Sunni is still making progress. The dr actually said she was doing awesome this morning. I do not think we have heard that before. God has answered our prayers! <br />
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I prayed last week for a sign, for a miracle, to keep my Sunni here. I have to admit though, I lost some hope. I thought we would have to say goodbye when I was not ready. I did not want her to be in pain any longer. But selfishly, I wanted to keep her too. I wrote to you in the last blog about the chaplain at the hospital that came and prayed for Sunni. Her name is Glenda. She talked to Sunni and I swear that was the turning point for Sunni. Call it what you will--but God was there. Sunni opened her eyes to tell us not to be afraid; "I am still here and still fighting--for you and for me." She assured us this before and after surgery, too. I am so proud of her. Sunni has a purpose here on earth. She has already taught me so many things. Never give up, don't sweat the small things, and how important family is are just a few things. </div>
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So here is a quick update on my precious sunshine.....</div>
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They went down on her drips yesterday and today. She is on Morphine for pain and Versed for anxiety. Please pray she does not go through withdrawals like she has in the past and that she stays comfortable. I am trusting that the doctors know what they are doing and not weaning too fast. She is also on phenobarbital for seizures. They have to adjust the levels of this according to how much she needs so they take her blood to test the levels ever so often. She is also on blood thinners which she will more than likely have to take from now on because she clots so easily. </div>
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They also have to take blood to test her blood gasses to make sure she is within a certain area. The better the gas the more she gets to go down on the ventilator. The hope is that she might get to be extubated one day (the sooner the better). This is one of my biggest worries because she only has about 25% of her left lung. One of my favorite doctors shared her suspicion with us that Sunni may have to be trached one day due to not being able to come off the vent. This lady is really smart. Please help me pray that this is not the case. Pray that Sunni is able to breathe on her own one day (sooner than later) and will be able to transition to cpap and ultimately to a nose cannula one day.</div>
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She is also on lasix which is a diuretic that helps her pee. This has been working fabulously. She has lost a LOT of fluid and is shrinking back down to her normal size *slowly*. I am not sure of her exact weight at the moment but I will ask after they weigh her tonight. This tells me that her kidneys are still working.</div>
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Sunni has never had milk--breast milk nor formula of any kind. She has a continuous drip of TPN (Total Parenteral Nutrition). That of course is not like eating. I am so ready to start feeding her! She is 45 days old today and has never eaten (or wore clothes or cried). In order to eat the stomach bile has to slow down and become less. Tomorrow they are going to see if they can change her repogle to gravity and see how she does. That means the tube going down to her belly is on suction and tomorrow they will turn the suction off. If she handles that we will try feeding. They will stick another tube down her nose and feed her a very small amount of breast milk. If/when this happens the hope is that she will tolerate it, keep it down, and her bowels will "wake up." Last week I was very depressed and sad so I stopped pumping. I really regret that now with the talk of possibly feeding soon. Hopefully I can get my milk supply back. (Any tips would be appreciated).</div>
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As far as her brain and development---it is still the same atm. She will have a repeat MRI at some point--probably when she gets a little bit better and gets some tubes taken out here and there. Hopefully she will stop having seizures when the hematoma absorbs back into the body like they think is will eventually. If not, she will be on medication for them from now on. We are ready to take on whatever the future holds for our precious daughter. I know she will not be a typical child in any area and that is ok.</div>
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So that is the highlights for now. I hope that this is a better explanation of what is going on with her. I know that last blog was crazy. lol I went back and read it and couldn't even understand what I wrote at times. I am still blaming my pregnancy for my loss of memory and difficulty communicating :)</div>
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I want to thank you all for the prayers. I know I say it every time but I love you all and appreciate them from the bottom of my heart. For specific prayers you can pray for her lungs to continue to improve and be able to go lower and lower on the vent, for her pain to stay under control with the lowering of her drips, and her bile to lessen so that she may get fed soon. These are my top 3 prayers right now so please join me.</div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgbw3evr6KIFyWS4QVul7nwlGTgWOrY5fe5bQWuAx76YKFkBoI9E7D0yoKCWMa4995URku0G5S0Ym5W23J8mchQxFv0pSvQBNK0voRo-NonsauyI595hJhosZc0Wle9dFjJ44NfQivqxoU/s1600/coopsun.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgbw3evr6KIFyWS4QVul7nwlGTgWOrY5fe5bQWuAx76YKFkBoI9E7D0yoKCWMa4995URku0G5S0Ym5W23J8mchQxFv0pSvQBNK0voRo-NonsauyI595hJhosZc0Wle9dFjJ44NfQivqxoU/s320/coopsun.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Sunni & Cooper, her biggest big brother :-)</td></tr>
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wreeveshttp://www.blogger.com/profile/02694676660122028787noreply@blogger.com4tag:blogger.com,1999:blog-3688857526446988837.post-14814225921039418182012-11-18T21:53:00.001-08:002012-11-19T21:04:39.526-08:00Rainbow after the Storm?You all have been so patient with me for an update. This has been the hardest week of our life, no doubt. I have never felt agony, stress, and heartbreak like we have this week. My last post ended with her having seizures and a possible surgery. That was last Sunday.<br />
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Monday the doctors rotated and we got a new doctor and she is very proactive. She had Sunni when she was born and was ready to do something about what was going on. Sunni looked awful She was so swollen she was unrecognizable. The core of her body was red and inflamed, hard as a rock, and really swollen. She had not been awake or moving period since her seizures started on Saturday. <br />
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She started the morning with an MRI and EEG. At this point the neonatologist thought the repair patch was infected and that she would possibly have to have surgery to replace it and the cleaning of the chest at the same time. That all changed the next morning when we got the devastating MRI results.<br />
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Sunni had had a stroke. Oxygen had not gotten to her brain and some of her brain tissue had been damaged. She had clotting in her Venus System (which takes blood back to the rest of your body from the brain). She also had a hematoma (a pool of blood) on her right frontal lobe that has and is causing the seizures. They also found a cyst in the back of her brain. At the time we did not know what all that meant exactly. We were so lost. She was not moving her body either so we were unsure if she was paralyzed. She was not responding to pain either. Along with the way she looked and this new news we felt like it might be the end. They planned surgery for the next morning and planned a meeting for us to "discuss Sunni's future and the future of our family." The surgery was set for 7:30 and the meeting for 3:30.<br />
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Shawn and I were at the hospital by 6:30am on Wednesday prepared to tell Sunni goodbye and send her into surgery. We went and saw her. I had the worst feeling in my stomach. Then surgery came in. His exact words do not come to mind but something like, "We have postponed surgery until after your meeting with neurology so you will have the knowledge to make a better decision." I immediately broke down. I knew what they meant by that. Evidently the surgeon felt sorry for me and went and got the doctor to help me understand that this did not mean we couldn't go through with the surgery. They just wanted us to wait so we would understand what Sunni's life might be like. Well, that sure did not help me. The nurse put the screens up so Shawn and I could have some private time. I cant describe that feeling. We were mad, sad, upset, heartbroken...etc etc.<br />
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A chaplain came in and talked to us. She prayed for Sunni. Then she started talking to Sunni. You could immediately see Sunni moving more than she had moved since Saturday (and this was Wednesday). Then all of a sudden she opened 1 eye!! She was SO swollen that this was no small feat. We gained a little bit of hope in a split second. She was looking around but we could not tell if she was really "there" or not. Either way, we were more hopeful. We tried keeping her awake but she just was not able for long. Our awesome nurse let us hold her. We had not held her since she got the chest tube over a week ago. She is attached to so many lines and tubes it is really difficult to get it all together carefully. And she does not do well with movement. Between holding her and seeing an eye open we felt a tad better.<br />
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3:30 came. We went into yet another conference room. I really hate these rooms. A table where everyone sets around a box of Kleenex. The dr's filed in, some of our nurses, and other members of her team along with the Neurologist. All of the stuff about her brain I mentioned before was gone over again. We found out that she was actually born without her left jugular. Remember her being on ECMO? The right jugular was cut and seared off after ECMO. So--this is very rare. Her right one no longer works due to ECMO (which saved her life initially) and then she was not born with the other. This had never happened in their hospital before. Her body had to reroute new ways for blood to get back to the rest of the body from the brain. They went over every area with us. I do not want to go into all the details but they made it very clear that Sunni will never be normal and still may not make it even at that. She will always be behind in areas like moving, talking, learning and may even never be able to do those things. And that is only due to the brain injury. Then we have the respiratory issues. The seizures (meds from now on). Blood clotting (blood thinners from here on out). Her kidneys are not currently working well. And the list goes on. They were not sugar coating it but not telling us to give up either. This is just the short version of this meeting. I think it lasted like 2 hours. The decision to proceed with the surgery was up to us.<br />
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I do not think anyone should have to make a decision like this one. We cant even decide where to eat most of the time. We did not want to give up hope on her. We decided to have them come off the sedation a little so we could see if our baby was still there. We were going to proceed at any sign. (Still keeping in mind the eye that was open earlier that morning). Thursday we saw a tad bit of movement and she was responding more to pain---so that was a good sign. <br />
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We left the hospital around 6 and did not even make it to eat before we got a call from our dr saying the surgeons would HAVE to operate the next morning. They had done a chest ultrasound and found that she had an infected abscess around her left lung that needed to be removed stat. They would go ahead and clean out the scar tissue and fluid then too. <br />
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So Friday morning Shawn got up early to go see her before surgery and Ryder and I stayed home. As soon as he walked in the room--guess what!? She opened both eyes! He was going to run back and get me but I told him no. He needed to stay with her the whole time she had her eyes open and talk to her. I didnt want to chance her going back to sleep before we could get back. We did facetime and we got to see both eyes open--looking around--pretty alert. We were ecstatic!! This was the sign we had been waiting for. When she went in for surgery at 10:00 we had felt 100% more hopeful this time. <br />
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She was in there from 10-1:00. The actual surgery was only about an hour. The surgeon came to the waiting area and told us that it went way better than expected. Her lung had grown and looked better than they thought. They were happy with the surgery and her lung. They tried to find the leak source of the chylothorax. They could not. It could mean that it has already resolved itself but might not have and only time will tell. They could not tell if the patch was infected or not. Since she was infected they could not have done that procedure anyway. It did not appear to be infected so for now they are going to assume that it is not, but again, only time will tell.<br />
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We went straight up to see her after the news. We waited just a few minutes for transport to bring her back to her room. She finally came back so we could see her. She did not look bad at all for just having surgery. We expected her to actually be worse but she was not. We did not see her incision because it is bandaged up. Now she has two chest tubes :( Ouch! Guess what happened about 10 minutes after she came back. She opened BOTH eyes AGAIN! She was telling us that her battle is not over yet. She was telling her prayer warriors that God is listening and not to give up on here. She is letting us all know she is fighting and not giving up. She is my hero. It is funny how someone so small can teach you such a big lesson.<br />
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Shawn had to leave Friday afternoon to go celebrate Cooper's birthday with him on Saturday and to pick him up and bring him back with him. ((A big THANK YOU to each and every one of you that came to help make his birthday special. He had a great time!--He deserved it)).<br />
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Saturday I was by myself. (I got a taste of how it will feel being all alone next week). Fortunately I got to the hospital to hear great news. First of all she looked way better than she had, her swelling actually went down a bit (not typical for being after a surgery), her chest X-Ray looked AMAZING, good blood gasses, down on vent, and awake! They started her back on blood thinners and phenobarbital for her seizures. She has had 2 EEG's and they still show seizure activity. They had said that her tummy gunk had slowed down so they may try feeding soon--but later she threw up and it aspirated bile into her lungs. That was the only bad happening of the day. They started lasix to get her peeing better and to lose some of the swelling.<br />
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Today she looked SO good. Her swelling was definitely improving; but she still does not look like herself. She is down on her drips and she is tolerating it. She is moving a tad more (not a lot) and definitely responding to pain. They are still watching her lungs where she aspirated the bile the day before. The other not so good thing at the moment is that she has a TERRIBLE bed sore on the back of her head. Its about nickel size so far where she will never have hair again. They had to shave the back of her head today to keep it clean and dressed. Ugh!<br />
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Sunni is by no means in the clear but she is showing signs of improvement which is very promising. It has restored our hope and faith. The out pour of love from our friends and family has helped us to keep on going this week. We have had hundreds of people praying with us and for us. It has been amazing. And as my fb friends know---even people in Singapore!! WOW!<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgvxEHHy8Sb34U7jD4pUtjBcY7iqvMi0e5xQAlawr8jD7tDbkGK0btgH9qq9uv0HP6hDajrajLTktLur2e68YNSnBYe3IrtQWDHVGCudw0hgni9hB8qTo6L64zMNclo4wII5NIyOVD6nU0/s1600/sunn9.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgvxEHHy8Sb34U7jD4pUtjBcY7iqvMi0e5xQAlawr8jD7tDbkGK0btgH9qq9uv0HP6hDajrajLTktLur2e68YNSnBYe3IrtQWDHVGCudw0hgni9hB8qTo6L64zMNclo4wII5NIyOVD6nU0/s320/sunn9.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Sunni & Her Fighter Onesie from the Williams :)</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhGsKfKhuVMM0p_olK4aUG-C3Cedmue64zgmOpMctoxP8hOkS_-nxuzVIldg2POuRF5iIbCxh6wmrOeDZJoqz1nr8eZNh1mbeRohBIY3cVJiI0a4sodj8CGwtf_WMg7XH5ZgkRvNJfexkQ/s1600/sunn10.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhGsKfKhuVMM0p_olK4aUG-C3Cedmue64zgmOpMctoxP8hOkS_-nxuzVIldg2POuRF5iIbCxh6wmrOeDZJoqz1nr8eZNh1mbeRohBIY3cVJiI0a4sodj8CGwtf_WMg7XH5ZgkRvNJfexkQ/s320/sunn10.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Her pretty bow stuck in what is left of her hair with hair gel--from same awesome nurse! </td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiNAnuYfAs1EuJ56dabyLq8NPGdQg2vCLVgF7aG_4nPuXmiXFX544dkY_qbNqF-UPlceI7pKvD8ITWgVYFAz2Yu18fSZJ90jiR9jzgnr6qFghc87fQLyV_ZSr8xi2rgnJE5ePHzz0xWkaQ/s1600/sunn11.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiNAnuYfAs1EuJ56dabyLq8NPGdQg2vCLVgF7aG_4nPuXmiXFX544dkY_qbNqF-UPlceI7pKvD8ITWgVYFAz2Yu18fSZJ90jiR9jzgnr6qFghc87fQLyV_ZSr8xi2rgnJE5ePHzz0xWkaQ/s320/sunn11.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Our very first picture as a complete family!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgpk_CrNdrE6ER2LejtDjpJsMa5AMOVuHR_koKfRGf6m8ZpGhZYoCnx6teFDT-D1OfNI9KF_gwjVKme8mzdWyTBJD1K1KvdK2nx5QM2_qSJg5GvABE-6_cRN3bBOrFVE1aHjed8fE_Vhb8/s1600/sunn12.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgpk_CrNdrE6ER2LejtDjpJsMa5AMOVuHR_koKfRGf6m8ZpGhZYoCnx6teFDT-D1OfNI9KF_gwjVKme8mzdWyTBJD1K1KvdK2nx5QM2_qSJg5GvABE-6_cRN3bBOrFVE1aHjed8fE_Vhb8/s320/sunn12.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">My Babies</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi3LF5QoBPwG7LgJ0y30gKhvVWLYoFEE4Af6dd9z8bODJxDEcxw3IF83YnD-AEyz44mMvf-0albLSh0PCKug9VXWH6ATd4Wc6FkVY1oJnHfXVYmS_OHKTDJBPxBYdYKNNwJFL7AbJkOvtc/s1600/sunn13.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi3LF5QoBPwG7LgJ0y30gKhvVWLYoFEE4Af6dd9z8bODJxDEcxw3IF83YnD-AEyz44mMvf-0albLSh0PCKug9VXWH6ATd4Wc6FkVY1oJnHfXVYmS_OHKTDJBPxBYdYKNNwJFL7AbJkOvtc/s320/sunn13.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">She actually enjoys tummy time. And she looks so cute and comfy doing it!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhMxuDjAt4wgQ1F1NSkbXUmhGCafSGjsII_rL-8QzPgtyxkPh49DXthJ0stMM6LmAPOI-ttfMeX0opdxg0799sOVD2_hX0fvQ7-262WKr7w-PIL2W9we2sOty-yvrsMaHIwh7VjIjWdWvs/s1600/sunn14.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhMxuDjAt4wgQ1F1NSkbXUmhGCafSGjsII_rL-8QzPgtyxkPh49DXthJ0stMM6LmAPOI-ttfMeX0opdxg0799sOVD2_hX0fvQ7-262WKr7w-PIL2W9we2sOty-yvrsMaHIwh7VjIjWdWvs/s320/sunn14.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">This was BEFORE surgery on Friday 11/16. Her beautiful eyes we were so thankful to see once more</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjXOWEUNm3dt6V1JYoK6_gEKxPZnMJdIMEk0-kuKBATGxkFsMJW8VT8BfEW6OmeWki75fm0cIgzDTbZB0AIAKAmH4ByVkQuj4tVav-PgPsXQ-4H7tALfdjSPXAJlOgm1jq0NnzYQqSi9zM/s1600/sunn15.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjXOWEUNm3dt6V1JYoK6_gEKxPZnMJdIMEk0-kuKBATGxkFsMJW8VT8BfEW6OmeWki75fm0cIgzDTbZB0AIAKAmH4ByVkQuj4tVav-PgPsXQ-4H7tALfdjSPXAJlOgm1jq0NnzYQqSi9zM/s320/sunn15.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Sunni's Turkey Bow--Made by same great, talented nurse, Michelle.</td></tr>
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Please excuse the grammar, mispellings, and run-ons. I am so tired! I think I fell asleep few times while typing. I will most definitely update more often. This was rough.<br />
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wreeveshttp://www.blogger.com/profile/02694676660122028787noreply@blogger.com7tag:blogger.com,1999:blog-3688857526446988837.post-5860779865335597632012-11-11T11:59:00.003-08:002012-11-11T11:59:42.407-08:00Seizure & More SurgeryMost of you have probably been keeping up via Facebook. For those of you that do not have fb here is the latest....<br />
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Shawn and I were watching Sunni yesterday and thinking that she looked better and that the swelling might be going down a tad, tad bit. Then she started having what appeared to be a seizure. Her eyebrows started going up and down. Then her eyes started twitching along with her fingers, nose, and lips. She was blowing huge bubbles and drooling everywhere. Her heart rate was all over the place. The nurse called the dr to let her know...after waiting an hour for her to even show up and these episodes happening pretty often, the dr said she didn't think it was seizures but pain. <br />
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Shawn and I disagreed with that assumption. We knew this was not Sunni's way of showing pain. Besides that she has had a blank look on her face. She does not look at our faces anymore or follow our voice with her eyes. It is like Sunni is not "there" anymore. She does not clench our fingers with her hands. It is heartbreaking. We did not feel like we were getting any answers and that they weren't concerned enough by all this.<br />
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During night rounds Shawn kind of lost his cool. And finally they listened. He kept them there long enough that they got to witness these seizures and they finally agreed they did appear to be just that. She got a small dose of Ativan and that helped for about an hour and the spasms slowly came back so they decided to start Phenobarbital which is used to control seizures. She is still blowing bubbles and drooling but the spasms have gone away.<br />
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They have ordered an EEG for sometime today which measures and records electrical activity in the brain. She will have an MRI tomorrow.<br />
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If all that was not enough, surgery came by as well and told us that the pleural effusion is loculated which means there are pockets of that fluid all in her chest that can not escape. The two chest tubes that she has can only empty those two pockets. And that basically she has developed scar tissue and all of that along with the fluid is compromising her left lung (what little lung she does have---we were told 25%). SO the big plan is to have a major invasive surgery sometime this week. They want to cut her open and "clean" out her chest. They told us this is kind of a last resort but that they feel that this is the only option and what it has come down to. <br />
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BUT she can not have that surgery until the seizures are ruled out because the anesthesia she would have to have can not be done with brain issues going on. <br />
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The seizures could be caused by 3 things..<br />
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1. Infection---which they have tested for and ruled out<br />
2. Clotting of a vessel to the brain<br />
3. Swelling of the brain<br />
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This is a lot to take in. Shawn and I are just hanging in there. We love this little girl and are definitely not ready to give up. Please keep fighting baby girl!!wreeveshttp://www.blogger.com/profile/02694676660122028787noreply@blogger.com7