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December 2011 Moms
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member
Coming out of lurking - intro (long)
-T-
member
I mostly lurk but would like to post more, since you ladies have been a wealth of knowledge. I was supposed to be a Jan 12 bumpie, but that changed super fast!
DS was born with a Diaphragmatic Hernia (hole in the diaphram where stomach, bowel, and intestine migrated upwards.) This caused his lungs to be very small and his heart was squished. We found out 1 1/2 weeks before I was induced. My care was transferred to a larger hospital with a NICU, about 1 1/2 hours away from where we live. I was induced, which went wonderfully, and I knew I wouldn't be able to hold him right away, which was devastating. I slowly came around to the fact we would be spending a lot of time in the NICU.
Little did I know that he had other plans. He was much worse than expected, did not have functioning heart and lungs. An hour after his birth we made the decision to transfer him to a NICU that did ECMO. This is basically a heart and lung bypass. It takes all his blood out of him, cycles it through 2 pumps - one acting as heart, one acting as lungs - and puts the blood back in. He was completely sedated so the catheters would not move since they were inserted closely to his heart. A baby is allowed to be on ECMO for 21 days and we were getting close, thinking we would have to have "the talk." They did the hernia repair on day 12, and he came off ECMO on day 17!
He had many complications while in the NICU, seizures, brain bleed, blood infection, narcotic dependency, overdose, and pneumonia. Problems he still has that may or may not go away, abnormal blood flow in the heart, chronic lung disease - is on oxygen, 1/16 liter(not a lot!) nasal cannulas, cyst on brain, failed hearing screenings, GERD - so he has a feeding tube (G-J tube, food goes past his stomach, into small intestine), and developmental delays.
We are so thankful we now have a happy and mostly healthy baby! We came home from the NICU exactly 4 weeks ago, 4 days before he turned 5 months. It is amazing to be home after living in different places for so long. It is a lot of work to go anywhere, even just room to room since we have 2 cords that are constantly attached to him. We make it work 
Sorry for the length, I knew it wouldn't be short so I've been waiting for a good nap!
This discussion has been closed.
Re: Coming out of lurking - intro (long)
wow, you have been through a lot! i'm sorry for all the challenges you guys faced but it sounds like things are on the up and up.
keep us posted on his development-- you sound like a great and caring mommy. he's lucky!
IVF #1: 4-11-11= Transferred 1 beautiful blastocyst I named "Nugget"
5 Snowbabies! Beta#1 4/21= BFP! 226; Beta#2 4/25= 944
DS born 12/14/11
Baby #2 FET Nov/Dec 2013
12/13 Beta#1=BFP 349; 12/16 Beta#2=1,089. First ultrasound 12/26. DS#2 born 8/8/14
~~PAIF/SAIF Always Welcome~~
And of course youre welcome to join us!!
Welcome! I have a tubie also! My son has a gtube and we've also had many ups and downs with his health and development. I would be more than happy to help answer any questions you might have!
Have you wandered over to the special needs board yet? There are a lot of great mamas over there too with a wealth of knowledge :-)
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sibling love