Sunday, October 28, 2012

Restful Weekend

Saturday & Sunday seem to be Sunni's rest days--mainly because the docs are off and do not want to push her while they are gone.  So I do not have any new updates really.  Her jp drain (chest tube of sorts) is still draining quite a bit daily.

Today some dr thought it'd be a good idea to turn her repogle (one of the tubes in her throat that suck bile and other gunk out) off of the suction setting and on "gravity flow" ie. no suction.  Shawn and I knew this was not a good call because she still has so much gunk coming out everyday.  We were right.  She spit up throughout the whole day.  This spit up is not your average spit up.  For one it is green and slimy but it also has to be squished out between all the tubes in her throat.  It takes about 15 seconds and you can see her whole body shaking, she turns really red, and it looks like she can not breathe.  It looks agonizing for her.  It breaks my heart!! I hate it!  After going through this all day the night nurse convinced that same dr to turn the suction back on!  Hallelujah!

Tonight I had to tell Sunni bye for a few days because I am flying back home to see my boys.  I was crying and praying nothing happens while I am gone.  I'm going to miss my sweet angel!

I will close on a few pictures from this weekend!.......

Sunni & Her Daddy :)

Sunni & Mommy

3 Weeks Old Today---2 Hour Hold

First Headband Pic....She was not sure what to think.

Lookin' Around

She loves sleeping with her knees bent like this....

Her new "Bootsies" as her brother calls them :) 
She is so stinkin' cute

Side Note:  We did Facetime with Cooper & Ryder today.  We do it at the hospital with the boys so that they can see Sunni.  Ryder asked to see Sunni's "bootsies."  I thought that was the cutest thing EVER!  lol  And Cooper tried correcting him and told him they are called booties but Ryder was not listening to that!

Friday, October 26, 2012

Not Quite Ready.....

Sunni had a pretty good day Thursday (yesterday).  They turned her ventilator down to a setting that was like being on CPAP without actually being on it.  That was around 9 in the morning.  They did her blood gasses every 6 hours to make sure that she was handling it.  She did well with that all day into the next morning when we arrived.

Backtracking a little, one concerning thing that we learned was that she had a bloody substance being drained from her repogle (stomach drain) that she had not had before.  It was mores like old blood (brown instead of red).  They hoped that it was just the suction on the stomach irritating it.  They are not worried about it atm.

So today we come in to GREAT news!  Our favorite doctor even came by so she could tell us personally.  I was so happy when I updated my Facebook with the good news even though I thought maybe it was too soon to brag.  In case you missed that update the doc said she was still on the CPAP setting and was doing great on it, had good gasses, and her X-ray looked great (like the pleural effusion was almost gone).  The plan was to keep her on the CPAP setting through the weekend and extubated on Monday. AND the bloody stuff was clearing up.

Well.....we came back from lunch and she was getting an X-ray done.  The doc told us that while we were gone she started "breath stacking" which is basically inhaling several times and holding it each time without exhaling.  They had to turn the vent back on to it's old settings :/.  The XRay showed that the liquid was building back a bit again.  Not terribly....but a little. won't be Monday that she is extubated.  I am a little disappointed but glad we know she needs more time before actually pulling the tube.  The good news is that Sunni has been snoozing away almost all day and never got uncomfortable during all that jazz.

Keep praying for the pleural effusion to "fix" itself and GO AWAY!!

Wednesday, October 24, 2012

Found it!

We found the cause of the high blood pressure!

We came in Tuesday morning with the news that the liquid coming from Sunni's chest tube showed signs of infection.  They went ahead and cultured it and her blood and started antibiotics.  In the meantime they rolled her on her left side and her chest tube (that had not been draining much the past couple days) started filling up and up again. That gave her immediate relief! Her color started coming back and her blood pressure went down -slowly- but was going down nonetheless. Hallelujah!  So now they believed she did NOT actually have an infection.

Wednesday morning (today) they told us she still has fluid in her chest cavity called a pleural effusion.  The liquid if chyle. Now the doctor and surgeon made it sound like no big it might go away on its own.  BUT good ol trusty google told me other things. And I follow a blog where another CDH baby had this problem and it wasn't such an easy fix.  I read that hospital stays are longer and oxygen days are longer when chyle shows up.  The weird thing is---- they want to try and do a low flow on the vent tomorrow to transition to CPAP.  Weird! Of course, this all worries me.  But her blood pressure is currently 85/47---much better!  She has been pretty comfortable today.

All my prayer warriors can specifically pray for chyle to say goodbye soon and on its own!! Ty Ty!

For everyone asking for our mailing address it is....

3318 La Salle
Houston,  TX. 77027

She kind of likes having socks on her hands-they stay warmer!

Hi daddy!

Sleeping Beauty :)

Monday, October 22, 2012

High Blood Pressure

Well we had a great weekend with no real changes (Saturday & Sunday).  She got to rest and we got to talk to her with her eyes open and alert.

Today has been a complete different story.  Her blood pressure is so high it is double what it should be.  I will just tell you now I know zilch about blood pressure or what any of the numbers mean.  As I am writing this it is 122 over 87.  The nurse said that might be what a pregnant woman might run.  I am just going to take her word for it.  So all day they have tried to figure out what has set her off.

They did an echo on her heart which came back fine.  Her heart is functioning properly but does have  fluid around it which they called pericardial effusion.  That word just sounded scary so I googled it.  Eeeek!  Note to self-- Probably shouldn't google everything.  They said they were not worried about it because it was about the same amount that was in the last echo which was right after coming off ECMO and so they can not correlate that with the sudden high BP.

She had a "Renal Ultrasound" done to check out her kidney function.  We have never heard the official results from that but the nurse suspects they did not see anything alarming

So the verdict before the day doctors left was that maybe it is pain related.  They went up
3 times on the morphine and versed today so they can try to keep her totally pain-free so they can rule out pain as a cause for the high BP. So she has been really out of it today.  Her eyes were rarely open but when they were she was just staring into space on not really her.  It's so heartbreaking to see her like that.

Shawn and I left to go eat while they did shift change and when we came back shoe was doing even worse.  They had to go up AGAIN on meds and she was super pale and just lifeless.  They ordered a chest X-Ray which showed her vent tube was pushed too far down so they had to pull it out a bit.  While her tape was off we got to snap a picture of her beautiful face.

I cant wait til we can see those lips everyday...

Please pray specifically for the doctors to find the cause of her high blood pressure and for it to be an easy "fix.".   Thank you my friends!

Friday, October 19, 2012

Infection or Morphine Withdrawals

Last night they did some blood tests because she was hot and still acting agitated.  Her blood came back good and her cultures haven't grown anything yet but they decided to give antibiotics just in case.  Her numbers leveled back out today so they are really leaning towards her going through morphine withdrawals yesterday.  They think they may have weaned her faster than her body appreciated.  So today was a good rest day for Miss Sunni.  We didn't get to hold her but we didn't ask because we wanted to to keep resting.  She needs it.  So today we saw the back of her eyelids most of the day but we are glad she was more comfortable.

Sleeping Beauty Today :)

What did you put on my head Momma??

I am going to fly back home on the 29th to spend a few days with the boys.  I am so excited to see them!  Shawn will stay with Sunni so I know she will be in good hands.  :)

Thursday, October 18, 2012

Discouraging Day

First thing this morning they had to move Sunni's PICC line from her arm to her leg because it had moved again and was causing irritation.  I really hope this one lasts longer than a day.

They had to add the tube back to her mouth that sucks junk out of her belly.  They had taken it out when she was extubated day before yesterday bc it was not getting much out. came back.

She has had a lot of fluid on her lungs and a lot more drainage from her chest tube than normal.   That was all enough to concern me this morning and then the doc told us her white blood count was high this morning which might be the sign of infection but they didn't want to give antibiotics just yet.  The reason being that she needed all the good bacteria in her body and they didn't want to kill it if not necessary....that's how I understood it anyway.  She is actually back up on meds and the vent because of this set back.  She was super uncomfortable all day.

Her X-Ray did not get any worse and her vitals along with her gasses were good so they are watching her closely for more signs of infection.  Please pray this is not the case!  They said the white blood cell count could be due to stress/pain.  I am very worried.  Of course the worrier and pessimist comes out in me.

No clothes today.... But soon!.....

12 Days Old

Wednesday, October 17, 2012

11 Days Old--Rest

Sunni got to rest today!

X-Rays showed that she has quite a bit of fluid on her lungs so they gave her some Lasix to try and flush some of it out.  They have been sucking yuck out of her lungs all day.  They think this might have been the reason she was not able to transition to CPAP yesterday.  They decided to mostly let her rest today but they did go down on the narcotics a little bit.  They played with the vent settings a bit to make her more comfortable and to let her lungs expand a little bit. She had a really good day comfort wise and nothing major I would call it a good day!

When we first got there she was wide eyed, awake, and super alert.  Shawn got to hold her for 2 hours!!  She LOVED it (and so did he).  Her eyes are SO big and beautiful.  She had them as wide as they would go.  I've never seen anything more precious in my life.  And I got the pics to prove it..........

Big beautiful eyes.  So alert!

Looking at Daddy
The nurses told us that she could wear clothes if we wanted to bring be looking for that in the next couple days.   We actually got to go buy some today!  Yay!  I love pink.

Please keep praying for my Sunni girl.  Look how far they have got her!  Please pray for her lungs to clear up and be strong.  Also pray to keep infection away.  I know that is usually a really big deal for these babies in the hospital.  Thank you! :)

Tuesday, October 16, 2012

1 Step Forward, 2 Steps Back

Sunni's nurses and the doc set two goals for her today:

1.  Come down on the Versed (for anxiety) and Morphine (for pain).
2.  Come down off the Vent and get on CPAP.

When we got to the hospital today they had already lowered both of those medications and she was wide eyed, awake, and doing really well.  So well that she seemed like a normal baby that lays there comfortably, alert, and reaching around.  I was SO happy.  It felt like such a relief to see her like that.  They said that if her gasses they took at 2 looked good they were going to switch over from the vent to cpap.  And they were.  The numbers were "beautiful."

The doc said that her numbers were so good she wanted to try her out on the nasal cannula and skip right over CPAP.  So we got our cameras out and were ready to see Miss Sunni's face/mouth for the first time.  We were SOO excited!  They extubated her (pulled the "straw" out of her throat) and put in the nose cannula.  Within less than a minute we knew that was not going to work.  She started having trouble breathing and looked really uncomfortable and just not herself.  She was very panicky.

They decided to go ahead and try the CPAP but she didn't improve and her heart rate was going down so they had to immediately intubate her again.  I was so scared because she looked so distressed.  They gave her some more Versed to calm her down and that worked pretty well but she was still not showing good vitals.  I got to hold her again to see if that would work.  45 more minutes of happiness!  It worked a little but she got restless again so they upped her Morphine.  Then she was able to rest.

That all really wore her out and she had to go back up on the vent and back up on the meds for the rest of the day (and was still up at 10 when we left).  I really despise this roller coaster that we are on.  It seems like  if you have a really good day that will only lead to something bad happening.  Ugh!  So frustrating.

When they took an X-Ray tonight to make sure the tube got put back in the right spot they found out the PICC line had shifted and was now in the wrong spot so it had to be readjusted.  Poor baby!  I wish daddy and I could take some of her pain.

 So that was today in the life of Sunni.  Started out a great day and ended up a step backwards.  Praying for a better day tomorrow!  Even though the extubating experience was terrifying for me---I loved seeing her face with no tape and no tubes.  She is just beautiful......

No Tape!  No Tubes!  Beautiful!

Sunni Nicole :)

Monday, October 15, 2012

Holding Sunni :)

I got to hold my baby girl today!!  It was awesome.  She slept the entire time but I loved every minute of it.  45 minutes of pure happiness.  Waiting 9 days to hold your baby seemed a lot longer than it sounds.

Shawn and I were a little later than normal getting to the hospital because we actually slept REALLY good for the first time in a while.  They said that her co2 levels were getting better and better.  BUT the belly button lines where they gave nutrients, meds, and drew blood from could no longer be used so they had to take them out.  These only last about 10 days so it was not a surprise.  Now they have to prick her poor little heel for blood (was every 6 hours at first but got turned into every 8 since her gasses were improving).  And then the part I didn't like AT ALL was they had to put in a PICC line through her arm (where we normally get blood drawn from) that runs all the way to right above her heart.  They said that was going to be for nutrients and meds and that it was better on the risks of infection.  So she had that "procedure" done this evening.  They gave her pain meds though and she was pretty much knocked out the entire time.  It still made  mommy nervous and sad that she already had to go through more pain.

Backtracking a little--She was SUPER feisty this morning so they had to swaddle her tightly with blankets so she didn't try yanking things out of her body.  She was still restless so they decided to let me hold her.  I was on cloud 9 of course but it helped her too.  She fell asleep and was calm for the rest of the day.

When we went back up there after shift change daddy got to hold Miss Sunni too!  She is probably going to be a daddy's girl---or daddy thinks so anyway.

We had a great day and feel a little more like mommy and daddy today!  We sure love that little girl.  Thank you for the continued prayers, love, and support.

We love showing her off..........
God is Good!

Right where she should be....

Daddy's Girl

Sunday, October 14, 2012

Sunni Nicole

This past week has been a whirlwind!  If you are a Facebook friend some of this will be old news but I am going to try to be a little more detailed although I cant remember 90% of whats happened.  Crazy, I know.

First of all---SHE'S HERE!!!  Sunni Nicole was born on October 6th at 12:25am.  She was 6 lbs. 9 oz. and 19.5 inches long.  She came out crying.  They swept here away to a little room connected to mine and immediately intubated her.  Daddy got to watch while I was still trying to figure out what was going on.  Miss Sunni was supposed to wait til Monday to come when I was supposed to be induced but she had other plans. I went from an 8 to a 10 in minutes so there was no time for an epidural.  OUCH!  That's all I have to say about that.

We waited til about 3:30 am to see her.  There were nurses, drs, and medical teams all over her.  It was very scary.  I was halfway delirious so honestly I do not remember much other than she was one of the 3 most beautiful things I have ever seen.  They said she was doing pretty good considering.  We saw her again around 7 that morning and they had put her on an oscillator which was supposed to be more gentle but it was loud and kind of scary (it went really fast--Shawn says 100 pumps per minute but I cant verify).  They said her heart was having some issues and they weren't getting it to squeeze hard enough and the echo looked like her aorta was narrow and one of the valves was not functioning properly.  She was on Nitric Oxide and many, many, many drugs.  That first day they basically played with her numbers using drugs and different setting on vents and said they were going to try to keep from going on ECMO but her body was not oxygenating the bottom portion of her body and she was working really hard to keep up with everything so it was still a big possibility.

Day 2--Sunday, October 7th.  ECMO Day.  I was still in the hospital just waking up when the phone rang.  The nurse told me that Sunni had to be put on ECMO because she was working herself too hard and her heart and lungs needed a rest.  We needed to get up there right away to see her before they started.  We walked in to once again a whole medical team, a HUGE machine, and my baby girl.  I am glad Shawn was there to hear anything they had to say because I couldn't stop bawling.  I did not want this to happen because while ECMO saves lives it is also very risky.  ECMO is a heart/lung bypass machine that takes blood out of the body, takes carbon dioxide out of the blood, puts oxygen into the blood, and circulates it back into your body.  They have to cut into the carotid artery in your neck and stick tubes all the way down to your heart.  This scared me to death!  Thankfully the surgery to cannulate went well and she was stable for the rest of the day.  Her numbers improved immediately and she was able to rest.

Day 3--Monday, October 8th.  Sunni was very stable today.  She rested most of the day.  I was discharged and we left the hospital for the first time.  I hated leaving without my baby.  That was really hard.  We did get to spend time with our boys though.  The were in town all week with my mom and I was glad to get to see them.  Sunni had an "uneventful" day which was really nice.

Day 4--Tuesday, October 9th.  Today was more of the same "uneventfulness" that we are growing to love.  She was having some blood pressure issues but they were able to control it with medication.  We found out that she would be having surgery early in the morning the next day so that gave us something to worry about. We also met a lady named Julie that had a 4 week old daughter in the same room with us that also had CDH and a similar story to ours.  It was really nice and comforting to talk to her the night before surgery and she helped calm a lot of our fears.  Her baby is doing really well.

Day 5--Wednesday, October 10th.  REPAIR SURGERY We woke up early to see Miss Sunni before her surgery started.  I was mostly nervous about bleeding since she was on so much blood thinners (the ECMO machine gets clots which can be very very bad).  The surgery had to be done bedside because moving the ECMO machine would be too risky.  Soo.....after surgery we found out that her hernia was pretty large (on the left side) and abnormally shaped.  They had to put a big patch in and had to get real creative on stitching it in.  They could not fit all the contents that were in her chest into her abdomen so they had to put them in a cone like thing called a silo and that was on the outside of her body.  The plan was to let her body do its thing (fluid levels even out and swelling to go down) and in a few days see if the intestines would fit in the abdomen to where they could close her up.  The dr said she will most likely have really bad acid reflux because her diaphragm was gone around the part that keeps acid from going  up.  They were not able to put everything back in the right spots (like a normal bodies anatomy) because her liver had shifted and took over.  She did pretty well for the rest of this day.  She was very sedated and seemed to be resting comfortably.

Day 6--Thursday, October 11.  SURGERY #3 That morning we walked in and the surgeon had just made her rounds.  She was checking out the incision and silo and "irritated" it (squeezed it).  They could not get it to stop bleeding (blood thinners) so they ended up having to do an emergency type surgery.  Her spleen had been damaged and that was what was causing the bleeding.  They called on the team to decide whether they should remove it or repair it.  I was scared to death.  I know you can live without your spleen but generally people get sick a lot easier without it because it produced anti-bodies.  I know she is already going to be more susceptible to getting sick because she will have lung issues.  I was praying for a repair.  Praise God---our prayers were answered.  They ended up repairing her spleen and got all her intestines back in and she was sewn all up.  That poor baby is going to be SOO tough!  She had been through so much in 6 days.  She did get to rest that day and all was more peaceful after that.  I was relieved to have her insides back on the inside.  I believe that happened for a reason.....not sure why, but I do.

Day 7--Friday, October 12.  They trialed Sunni off ECMO today.  They were impressed by the numbers they got and were thinking they may take her off but the head surgeon made the final call to let the poor baby rest since she has had 2 big days right in a row.  I agreed 100% with that choice.  She got to rest on this day!

Day 8--Saturday, October 13.  She was trialed off ECMO twice this day and had alright numbers but not good enough to come off for good.  She had a good day but I could tell she was starting to feel pain.  She screams but no sound comes out because the tubes down her mouth are between her vocal cords.  It is the most heartbreaking thing for me.  I cant hold her or comfort her.  All I can do is watch.  We really can not even touch her much because it makes her blood pressure go crazy.  They gave morphine to her every 2 hours or as needed if she went longer.  She was very alert today and we got a lot of good pictures of her pretty eyes.  I am in love!

Day 9--Sunday, October 14.  OFF ECMO  She trialed off ecmo and her numbers were good except her co2 levels.  They had an echo on her heart done at the same time as the trial off to see how it was working.  It looked great.  The head surgeon said if co2 was all they were concerned about that it was time to take her off ECMO.  She was successfully decanulated by 12:45.  We had to leave for that of course.  When we came back in that HUGE machine was gone, the tubes out of her neck were gone, and I could see my baby much better.  She has had a pretty good day today after getting off ecmo other than the co2 but they are working on that and the numbers are getting much better. YAY!  Her dr said we might get to hold her in a couple of days.

I hope most of that made sense.  I know the grammar and wording could use some help but I am SO tired and exhausted but I knew I better update and get this written or me myself would forget.  I am definitely leaving out the details.  This has been the craziest roller coaster of my life.  Just when you think you can breathe something happens.  Shawn and I are doing ok.  We are finally staying in the big Ronald McDonald House here in Houston and it is really nice.  The one in the hospital is not all that bad but you have to check in and check out everyday and not really know if you will have a room for sure that night.  But here at the big one we can stay 45 consecutive days and we have out own space (that locks!).  You can not drink in your room--which totally stinks---thats my gripe.  Shawn's gripe is that we have chores! lol  We have to sweep the dining room floor, which is huge, and wipe all the tables.  But all in all I like it here so far.  In the very distant future I would like to become involved somehow with the one in Amarillo.  You never think about places like this until you need it!  Its a great place!

A few hours old

First pic after going on ECMO (swollen)

My Pretty Princess with a Mohawk

Already got daddy wrapped around her fingers

Coop, Daddy, & Sunni

So alert!  My fav pic to date!


After ECMO
Anyway---now that I have Internet access and a laptop I will be able to update more often.  Hopefully after 3 surgeries Sunni will decide to take it a little more easy and we will be on the road to recovery!