Apparently, "going private" means "quitting" around here.
I don't know how frequent I will continue to blog, so I'll just stay here.
Having Damien at home has been absolutely wonderful. Everything I ever hoped it would be. (Even though he has some bad nights, like last night, when I find myself saying, "Sweetheart, what on earth can I do to get you to quit crying?")
Atticus is still in the NICU. He has a microdeletion on one of his chromosomes which caused his cleft palate and small jaw, and that's really all I want to say about that, because he's perfect to us. He will be having surgery sometime this week, to get a g-tube and to fix the malrotation of his intestines. Hopefully he will come home soon after that. He has been checked out very thoroughly, and his heart, kidneys, eyes, ears, etc. are perfect. So our problem is feeding, and that he desats with some frequency due to obstructive apnea. (His tongue falls back into his throat--this should fix itself as his mouth/jaw grows, but for now he is back on oxygen and will probably come home with some, at least for sleeping.)
Balancing having one baby at home and one in the NICU has been very difficult. I can drive again now though, thank goodness.
Neither of my babies can effectively breastfeed, so I am pumping around the clock for them. Pumping sucks, but it's worth it to give my boys antibodies and nutrition. My supply is enough for them right now.
Atticus clocked in at 4 lbs 13.6 oz last night, which is awesome. Damien sees his pediatrician for a weightcheck on Tuesday. (He was 6 lb 14 oz at his last check, but I kind of cheated because I'd fed him only an hour before, so he was probably only 6 lb 12ish.) He has thrived at home, and I truly believe that, when we get Atticus home, he will thrive too.
9 comments:
Thanks for the update. That's great that you are providing all that wonderful breastmilk for your babies. I'm sure that helps so much! Hope Atticus gets to come home soon.
So glad to see you post! And I bet it is super hard to have one babe at home and one in the NICU. But sounds like you are handling it like one tough momma who loves her babies so much. I hope little Atticus's surgery goes perfectly next week!
Oh, I'm so glad to hear this update! I'm so pleased that Atticus has so many organ systems in good working order. I studied chromosomal rearrangements in grad school, and all I can say small copy number variations are actually a much bigger source of variation among "normal" people than has been previously appreciated, and I think you're very right to regard Atticus as perfect. I hope so much that his surgery goes smoothly and that it fixes his feeding issues so he can go home where he belongs.
I really really feel for you. I know how hard it is to worry about sleep related desats (because generally YOU want to be sleeping when the baby is sleeping, and it's hard to do that when you're terrified) and also how hard it is to worry about impending surgery. You're sounding like you're facing all of this admirably, but I know that it must at times be very scary, especially compounded by the hardness of a second baby at home.
Good work, you, for pumping enough to feed them both! Given that you had them a bit early and that you've been doing this with the pump alone, that's a tremendous feat! And way to go, Damien, with the weight gain. Frankly, I don't think RJ has ever been weighed more than an hour after feeding because much greater intervals just don't happen during the day, so I think you should just own that full weight, Damien. :)
PS - the crying spells late at night? Um. If you had the answer, you would be able to write a book that would enable you to retire effective immediately from the royalties. :)
Lovely to hear that Damien is home with you! I hope Atticus does well with his surgery and that he gets to join you all really soon.
It must be incredibly hard to have one at home and one in the NICU, both emotionally and practically, so hats off to you for managing to pump enough milk to feed them -that is a fantastic achievement. Maybe you will still be able to breastfeed them a bit later on and do away with the pump!
It is clearly doing them the world of good as they are getting their weight up beautifully - they will be chubby before you know it!
Lots of luck to you all!
Wonderful to hear from you and that you are having Damien home and thriving with Atticus hopefully coming home soon, too!
All the best to you - lots of strength, and lots of happy moments to you!
Glad to read your update. Post when and if you can. We understand.
I'm impressed you're blogging at all. Ive fallen off the planet since I had my twins 4 weeks ago and learning one has spina bifida and will need spinal sugery soon! I'm finally starting to cope better so will try to post soon. Best to you and your boys!
Great news sweetie! Been thinking of all of you a lot! Keep up the updates when you can!
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