Prayers please!! Updated again!

mrshudson618

My cousin had her baby this morning at home with a midwife. Baby girl was not breathing. MW immediately called 911 and began CPR. Baby and Dad were taken by ambulance to the nearest NICU, while MW stayed with my cousin. At that hospital they discovered that it was a serious issue and transferred her to the local children's hospital. 

There they discovered that baby's diaphragm has a hole or hernia, and her organs were pushed up into her chest. This did not allow her lungs to develop properly. She will need surgery, but they will not be able to do that for 2-3 days, until baby is more stable, and they know more. 

At this point, everyone is really scared because there is so much that isn't known yet. We don't know HOW underdeveloped the lungs are, and what kind of lasting effects there will be, and whether she just need some more time to develop, or lots of medical intervention. There was some concern also about how long baby was without oxygen, and possible brain damage from that. (I am personally thinking that is a slight risk as the MW and paramedics we doing continuous CPR until they got to the hospital. There is also a lot of phone-tree info spreading going on, so I am afraid there is speculation going on with this part)

My cousin's mom is now with her at home, getting ready to take her to the children's hospital, (the poor thing hasn't really gotten to even see her daughter yet) while my aunt is  taking care of their other child, who just turned one last month. So also please pray that she is able to nurse her daughter, or pump to get her supply going. She had MAJOR supply issues with her son and ended up having to switch to formula very early, and she was already worried and stressed about that for this baby before any of this happened. 

Thanks.  

UPDATE-

baby was taken into surgery to be placed onto ECMO machine. Any further surgery to repair the diaphram will wait at least 1-2 weeks. ((I thought this was a good sign, if it can wait, but my mom who told me said it sounded like the wait was to see if the ECMO 'did any good' first (again, speculations on both sides)) 

update#2

after unsuccessfully trying a couple times to wean her off the ECMO, they have decided to do surgery while still on the ECMO. Surgery is scheduled for 2pm tomorrow(friday). Keep her and her doctors in your prayers!

Surgery update: everything went as expected. A large part of her intestines remain outside her body, and gravity will slowly move them back inside as her abdomen grows room for them. The situation with her breathing and the ECMO will remain a waiting game for a while as they see how her lungs do with the proper space.

TJ1979

I'm so sorry, that is so scary. T&P to them.

freezorburn

T&Ps that the little girl gets the best care possible and that the entire family gets the support they need.

welly01

Oh my goodness. Sending thoughts and prayers for your family!

candlequeen

This makes me so sad I'm praying!

unaveragejane

Oh my goodness, how scary! Definitely sending up thoughts and prayers. I wasn't sure what ECMO stands for, so I looked it up. Oh dear! But I did find this piece of hope on the about.com explanation, "Because ECMO can only be used for up to a few weeks, it is only used for patients who are expected to recover after treatment or surgery." To me that sounds like they're going to let the ECMO do the work of oxygenating the blood for baby while her diaphram has time to heal. Hold on to the hope!!!

JEPES1348

Thinking of your cousin and her family! Many children do very well on ECMO, but it's always scary on such a little one. Sending positive thoughts.

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km_md

I'm so sorry to hear this. T&Ps for your family.

bumpuser9353653

So scary. Thoughts and prayers for strength through this difficult time!

KTdidit

Oh I'm so sorry. T&P to your family.

zaraceligon

Positive vibe on the wait.

gallifreygirl

I'm so sorry your family is having to go through this right now. Sending thoughts & prayers.

mrshudson618

Not really an update, but I just talked to my aunt. She said that she still is not considered stable, her BP and fluid numbers are not right.

JEPES1348

What an incredibly tough start in life. How unfair.

@mrshudson618 was little baby full term?

joyfultrex

prayers to your family... hoping for the best.

mrshudson618

@JEPES1348‌ yes, full term.

kmc84

I can't even imagine! Tons of T&Ps!!!

blessed2585

I am so sorry to hear this! I will keep them in my prayers!

BoyOhBoys

Praying health and wholeness for precious baby.

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mrshudson618

Not much. They had to take her back into surgery to reposition the ECMO tubes yesterday, and they did a brain scan this morning that looked normal, so thats a good sign. She still isn't classified as stable yet though.

candlequeen

praying for this sweet little baby

babywisher

Thoughts and prayers for that baby girl and her family. I am so sorry to hear about such a difficult situation.

amtay825

Jumping in from other boards, but my son was diagnosed with CDH at our 16 week ultrasound. Obviously, we've had plenty of time to do lots of research on this. There is such a broad spectrum of the severity of these cases; and every case is different. I'm curious to know if your cousin had an ultrasound at 20 weeks for the anatomy scan, I'm surprised it wasn't caught then?

The outcome of CDH is largely dependent on what abdominal organs moved up into the chest cavity. I've read, and spoken to many doctors who've all agreed that if the liver has moved up its more serious; whereas if just the intestines and stomach move up not so much. The issue is the lungs; how much room they have to grow and develop as they would normally. They can push the intestines as they grow, since they are soft. But the liver is not, and the lungs are not hard enough to push it down. It also depends on what side the hernia is on. The left side is more common, and have better outcomes. The right side for some reason is more severe and the outcomes aren't as good. With the organs moved up, they will also push the heart to the side; which can sometimes affect its function. Lots of times one side (whichever side the abdominal organs are) is smaller than the other. I'm sure the doctors already have; but make sure they've done an echocardiogram to check the function of the heart as well since it too can be affected. ECMO is to give the baby's lungs rest, and more time to heal and develop. This treatment does the job of oxygenating the baby's blood. Its a horrible thing to see, but it is helpful for sure. Once the baby is stable they can repair the hernia by going in and gently moving the abdominal organs back to where they are supposed to be, then repair the hole in the diaphragm with either a piece of special plastic, or part of the diaphragm depending on how big it is. Once that's done, they'll have to make sure the digestive system is working properly and of course monitor the baby's breathing and heart. Its a very long, stressful road. We will be delivering at a specialty hospital and the team will be in place and ready to intervene immediately. I'm praying for your cousin, your family, and for that sweet baby. I'm so sorry you all have to go through this, I can't imagine not knowing until birth and being slammed with it like that. Its all so overwhelming for me now, knowing what's coming.

mmm50

Thoughts and prayers to your cousin and her baby!  Sending healing and strength for both of them and the whole family.  

mrshudson618

I thought when I updated yesterday this would get bumped, but I guess not so here is the update again:

update#2

after unsuccessfully trying a couple times to wean her off the ECMO, they have decided to do surgery while still on the ECMO. Surgery is scheduled for 2pm today(friday). Keep her and her doctors in your prayers!

candlequeen

Still praying!

abby8279

I am thinking and praying for that tiny sweet baby.  Also thinking good thoughts for mom- hoping she can stay calm for baby and get that colostrum/milk flowing by pump.  And lastly hoping that dad can stay strong for mom.  Please keep updating us.

kmc84

T&PS!

mrshudson618

Surgery update: everything went as expected. A large part of her intestines remain outside her body, and gravity will slowly move them back inside as her abdomen grows room for them. The situation with her breathing and the ECMO will remain a waiting game for a while as they see how her lungs do with the proper space.

mrshudson618

Surgery update: everything went as expected. A large part of her intestines remain outside her body, and gravity will slowly move them back inside as her abdomen grows room for them. The situation with her breathing and the ECMO will remain a waiting game for a while as they see how her lungs do with the proper space.