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Braden's NICU stay - the back story

Posted Sep 11 2009 4:59pm

For those who have not had the opportunity to understand why we are where we are, I will try to fill you in on the foggy details as best I can remember. Braden spent the first few days in the Special Care Nursery, as he needed extra oxygen when his respiratory dropped low coming off the C-Section drugs. He was very jittery too and having real problems trying to take his bottle, and after 3 days in Special Care they moved him to the NICU, after a swallow study determined he was aspirating while trying to eat.

The NICU was a very busy and noisy nursery, it sounded like a video arcade in there, and Braden was very jumpy reacting to all the commotion in here. Here they treated him with UV lights for jaundice, and they started doing additional testing on him. The jittery behavior they suspected was seizure activity, so they did an EEG to study his brain activity - it came back with some "noise" or abnormalities in the background... so they wanted to do an MRI, as they suspect some brain atrophy (oxygen loss & damage) to the brain. This was late on a Friday, and the test could not be completed until the following Monday. Later the same day they did and EKG to see if the jittery behavior was related to a heart matter - it came back normal. The next day they decided to perform a spinal tap on him, to see if he was fighting off any major infections - this came back within normal range a few days later. They also took some blood for more panels, and informed us we would be meeting with a genetics counselor when the results came back from the Mayo Clinic, to see if Braden may have had any disorder or disease, as they suspected he may have some sort of metabolic disorder that was causing him to have weak muscle tone. We also had several X-rays within our first few days in NICU to study his swallowing reflex and digestional tract.

After 3 days in NICU, our nurse Kim asked to get Braden moved to the ICC (Infant Critical Care) nursery that had fewer beds and less commotion, as after 3 days Braden was becoming very irritable with not much rest in the NICU. Once here, we were told that he had acid reflux disease, and they would do yet more tests and X-rays to see if this was the cause of aspiration, or if it was happening on the way down. They told us they may have to do a surgery to create an extra "sphincter" at the top of the stomach to help prevent the reflux. This was also the first time they mentioned a potential feeding tube, until he could learn to take food by mouth - as aspirations in the lungs can lead to pnuemonia. The results of the MRI came back as NORMAL, meaning some things could have fixed themselves, but he still was suspected of suffering some kind of brain damage in the last month of pregnancy, and they wanted to do a follow-up EEG to look at it again. Waiting for these results was absolute torture... being told that your child has suffered brain damage, but they don't know yet to what extent was devastating. We still won't know until he develops more along the way, but now we are in a more comfortable place about it, knowing that it probably won't be too severe since the MRI shows normal. We will continue to see a nuerologist through outpatient visits, as it is still the 'final frontier', the brain, and there are no definites here.

The second EEG showed signs of improvement over the last, so we have some hope that Braden may develop just fine, he could just be getting a slow start. A few days later we got the results back from the Mayo Clinic, that Brad & I's combination of DNA in Braden showed no signs of disorder or disease, so we should not have those kinds of issues to deal with if we have future children, but there still is always that small percentage of chance with any pregnancy that you will fit that small category. They say he could still potentially develop some kind of metabolic disorder, I guess not as critical or fatal as what they did the testing for.

So we waited for about a week once all the tests were confirmed, and the doctor team decided they would perform a bronchial scope on Braden to check out his respiratory function, they would do the nissan fundiplication of the stomach, and insert the feeding button. On the day of, they also decided to do the circumcision, since he would be on meds.

I think this should catch everyone up at least to Brad's postings. For now, we are in the "wait and see" mode with his nuerological development, the swallow reflex, and what the paralyzed vocal cord could mean temporary or permanent... and how long we will have to feed him via tube. Thanks to everyone who has sent well wishes and prayers our way... as we embark on this difficult journey as a family, we truly appreciate and are blessed by all your support.

LOVE - Kodi & Braden
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