My boys are 6 days old.
(And by the way, I started on Zoloft a few days ago. With everything that's going on, I decided not to risk PPD on top of it. My OB agreed, so we're trying to be proactive about this. I still cry an awful lot though.)
My Atticus has a cleft palate. Just his soft palate, but I'm incredibly ignorant about this and staying away from Dr. Google. We met with a specialist today, and the news was mainly good. But he also pointed out that my boy has "slightly" low ears and "slightly" wide-set eyes and a "somewhat" undersized lower jaw. So he'll probably need ear tubes (not uncommon with cleft palate children, apparently) and might have eye problems and will likely have feeding problems. My mother swears up and down, though, that Atticus has the same eyes and nose that I had. I think she's right--my early baby pictures seem to confirm this. So hopefully, it's just his palate and possibly his jaw.
They have special bottles and nipples for cleft palate babies, but even so, my Atticus struggles.
Then again, he is a tiny little guy, now 3 lb 7 oz. He required intubation at birth, didn't have a gag reflex, and couldn't swallow. He's since developed a gag reflex, but it's not as strong as they'd like. And he can swallow but can't actually nipple feed (can't suck, swallow, breathe at ALL), so all his feeds are OG. They're mainly comfort feeds right now, as he's on TPN. And he's under the lights and HATES them. It's so hard to see him upset. He likely has a very long stay ahead of him, even though he makes progress every day. (For example, today they turned his Vapotherm down to 3 L, and 21%!)
His little brother, my Damien, is struggling with feeds and has recently started vomiting. And yes, we're supplementing with formula--my milk only really came in yesterday and I only get enough for *one* baby per pumping session, and I have no intention of having either of my boys go hungry. Anyway, at his last feed, we decided to switch to a lactose-free formula and for me to cut out all dairy as he even gets fussy when fed straight breast milk. I was very, very allergic to milk as an infant and child, and feel bad that it didn't ever occur to me to mention this. Once Damien is eating, we can take him home. He got his IV out yesterday, can maintain his body temp, and isn't on oxygen (although he does de-sat a bit when he cries).
And I asked for and received permission to bring Damien back into the Level III room (where Atticus still is; Damien was only in that room for one day) to take some pictures of them together. It has made me sad to not have any, and soon we will.
6 comments:
It sounds like they are both doing very well, in spite of everything. It sucks that they have to be in separate rooms, since twins do better when they are together. Better than separate hospitals, though, I am so glad that didn't happen. *whew*
I'm glad you got some pictures with them together. :)
Keep your spirits up. They really are doing great, and every day is going to get better.
I think reuniting your boys is such a good idea. :-)
I am hoping with all my heart that they both continue to improve. I can only imagine how you must be feeling. Hang in there.
Thanks for the update. I'm glad the boys are doing better and progressing. Can't wait to see pictures.
How are you doing?
Marissa, your boys. Are fighters. And even when they are out of the nicu and turning into big kids right before your eyes, that fight will remain in them and make them a force to be reckoned with. I hope they continue to make big strides and applaud you for doing all you can for them. Its ok to cry.
All 3 of my children had milk allergies as babies. I had to cut out all dairy, which is hard. You have to read labels, because a lot of foods contain milk ingredients (including casein and whey). Be patient, because it can take up to a week to have your system totally clear of milk. Lactose free formula contains milk proteins, which is what triggers the allergy in milk allergic babies. The best choice is a soy formula or hypoallergenic formula like Nutramigen or Alimentum for milk allergic babies. I just wanted to share what I knew, because I had SO much frustration when my oldest was born (she's 11, and doctors were way more ignorant back then about the effects of a mother's diet and allergic reactions - my ped. repeatedly told me that nothing I ate made a difference in the milk. It wasn't until I did reasearch on the La Leche website that I figured it out. By then, she had constant, bloody diarrhea from the allergy.)
Cutting out milk was really worth it - it made a big difference. Also, by the time my babies were 8-9 months old, I was able to go back to consuming dairy.
Congratulations - your boys look beautiful, and I think it seems like you're focusing on the positive right now, which is good. I mean, you have 2 gorgeous boys.
Congratulations on the boys. I just nw am reading all about the birth and such. My older daughter had a cleft of the soft palate when she was born. It was a lot of work but once we finally got her on the pidgeon bottle instead of the mead-johnson bottles she did soooo much better. She was like a different baby. She had cleft repair and tubes at six months old to the day. That porbably seems like a very long time down the road for you. It does even for me. I have eight week old twin boys right now.
Both your boys are adorable. Hoping they both continue to improve and do well.
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