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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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)).
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.
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!
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!
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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)).
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.
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!
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!
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| Sunni & Her Fighter Onesie from the Williams :) |
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| Her pretty bow stuck in what is left of her hair with hair gel--from same awesome nurse! |
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| Our very first picture as a complete family! |
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| My Babies |
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| She actually enjoys tummy time. And she looks so cute and comfy doing it! |
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| This was BEFORE surgery on Friday 11/16. Her beautiful eyes we were so thankful to see once more |
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| Sunni's Turkey Bow--Made by same great, talented nurse, Michelle. |
Praying for you in Australia! God bless you all.
ReplyDeleteWhile reading this post I have cried and rejoiced! I cannot begin to imagine what you & Shawn are going through. I am praying that sweet Sunni gets some time soon to heal and rest. We love you, Sunni!
ReplyDeleteDear Lord, please hold this family tight and give them the strength they need to be there for Sunni. This is undoubtedly the hardest thing they have ever faced and they need your strength and guidance! Please also give all of her doctors and nurses your wisdom, sharp eyes, and healing hands!
Sending so many prayers and big hugs to you! What a week, and what a fighter you have on your hands. God is moving mountains for that little booger! Y'all are some tough cookies- praying constantly and praising God for Sunni!
ReplyDeleteShe is such a doll and such a strong little girl! Many prayers for continued improvement!
ReplyDeleteYou deserve a day at the spa after all that. So proud of Sunni--she has so much to fight for, and she is so blessed to be a part of your precious family. Many prayers for continued improvement of her lungs, brain, kidneys, and everything else!
ReplyDeletePraying for beauty Sunni and you all as a prayer warrior in Texas for Jude. His Texas team is also praying for you all.
ReplyDeleteI am also a mom of a special needs child. You are Sunni's advocate. Be her voice and do not be afraid. Patents know best. Blessings to you all.
Not sure whose blog I found you on, but I have been following Sunni's story for just a little bit now. My son was born in March of 07 with right-sided CDH. That seems to be about where the similarities end as he had an "easy" road of it compared to many. But at 5 1/2 my daily reminder of our journey is the bald spot on the back of his head from the bed sore that he got while in the NICU. Every day that reminder makes me thank God for His blessings on my son and our family. I pray that you have that opportunity with your sweet little Sunni, that God heals her and that He uses her and your family to bless others.
ReplyDeletedarcy