Here I am again with a second NICU baby

[veitstoss]

I had my second son two days ago at 35 weeks and 5 days. As much as I wanted to avoid NICU time this time (my first son was born at 34 and 6 due to severe pre-e), my water decided to break spontaneously and five hours later, he was here with some respiratory issues. So we’re back in the NICU, and this time, it’s a little scarier due to the respiratory issues. In addition, his left ear didn’t form correctly and he may have a really scary sounding genetic disorder that may affect his hearing in both ears and his kidneys, which is even more concerning. It’s just been a lot of worry and emotions that I feel like I’m holding in for the most part because I’m not really ready to talk about his possible genetic condition with anyone besides my husband.

 

[samanthamathis]

@veitstoss I completely understand about not wanting to talk about possibly scary diagnoses. When my little one was in NICU the ophthalmologist that screens all the babies for ROP found white spots on his retinal. The most common causes of that would he congenital toxoplasmosis or CMV. He was also IUGR, increasing the chances it could be a TORCH infection. I didn't tell anyone about it until the TORCH panel came back negative and the repeat eye exam came back clear.

 

[veitstoss]

@samanthamathis I’m glad that everything ended up being ok for your little one. I know my little one will at least have ear issues, but it is the possibility of kidney issues that really scares me. It doesn’t help that this condition just seems really complicated because it’s rare and most of the info on the internet on it is medical journals and stuff that I don’t understand. Right now I’m just trying to focus on him getting better as far as the respiratory issues go, but it’s hard to have this looming over us right now

 

[samanthamathis]

@veitstoss It is so scary not knowing and worrying about worst case scenarios when your baby is in NICU. I hope you get good news and it is totally fine not to share anything with anyone until you are ready.

 

[chris47]

@veitstoss I don’t have any advice, but I just wanted to say I’ve been there and I’m sending you hugs! Our girl was born with a genetic condition. There was absolutely no indication anything was wrong during the entire pregnancy. When she was born and we realized something was wrong, it was scary even saying the words out loud. I was scared to tell our families or anyone. Looking back on it, I think it was because maybe telling them made it seem more real? I ended up telling my sisters when they came to visit me in the hospital. Although it was really hard and scary (and I cried a lot), it helped having their support and reassurance.

Not saying you should do that (and I 100% acknowledge that not everyone has family/friends who they can talk to) but just putting it out there as that really helped get out of my head. They were more objective and even helped me research and ask questions. It also helped them help me in terms of checking in on me and taking care of me postpartum. Not sure if that makes sense.

I’m so sorry you’re going through this and I’ll be thinking of you! Feel free to DM me if you ever want to chat.

 

[veitstoss]

@chris47 I have a good supportive family, but they can be kind of intense about stuff like this, especially my dad. He’ll just make me more anxious if I tell him before I can really answer any of the questions that he or my other family will have. Thank you for your support, it is really appreciated

 

[saviors4us]

@veitstoss Does your baby have microtia? I have it. I am the mother to a 28 weeker (now 2 and a half) who does not have it. I’m happy to talk to you about life with microtia. Most people with microtia do not have the related kidney defects.

 

[veitstoss]

@saviors4us They think he has something called branchio-oto-renal syndrome although his ear looks kind of similar to what came up when I googled microtia.