They also started sleeping through the night (10 hours) a couple weeks ago! Can I get an AMEN?!
We went to the pulmonologist (lung doctor) about 2 weeks ago and he had us turn their oxygen off while he did their exam. At the end of the exam the nurse hooked them up to the pulse ox and if their saturation was above 95 they could come off of oxygen during the day while they're awake. Aryanna's was above 95 and Anthony's was 94 - so close! So Anthony is still on oxygen at least until December 19th when we go back for his next appointment, but we did get to turn him down from 1/2 a liter to 1/4 of a liter. We also turned Aryanna down to 1/4 liter while she's sleeping and she gets to be oxygen free while she's awake! I have to take her to a sleep clinic on October 19th and she and I will stay the night there so they can monitor her breathing while she's asleep. If all goes well she will come off oxygen completely! If not, we'll leave her on oxygen while she's sleeping and she'll go back to the pulmonologist with Anthony in December and we'll re-evaluate then.
We had the AEA come out last week for another developmental check and they're doing great! For gross motor they're at 4 months, for fine motor they have skills between 2 and 4 months, cognitively they're close to 4 months, for language they're in the 4 - 6 months range and their social skills are at 3 months. So, developmentally they're between their adjusted age and their actual age which is right where they should be. They're both doing great at holding their heads up and they're so full of smiles these days! Love waking up to these smiles in the morning - makes my day! (We can't seem to catch Anthony on camera while he's smiling).
Anthony and Aryanna continue to grow like crazy! Anthony now weighs 12 lbs 15 oz and Aryanna weighs 10 lbs 6 oz! Anthony is on the weight growth chart for his actual age now and Aryanna is so close! While we're thrilled they're making such great progress, we are keeping an eye on their weight gain because their reflux has gotten a lot worse. Every day or two Aryanna throws up an entire feeding. Sometimes it comes through her nose and makes it hard to breathe (scary for her and us). And sometimes you can just tell she is in pain :( Anthony sometimes fights eating, arches his back, cries and does this awful cough/gag :( They've continued to gain over an ounce a day so it hasn't affected their weight yet, thankfully. Our pediatrician likes to stay away from anti-reflux meds if possible because they can have some nasty side affects, but it seems to be getting worse and they're eating less so I think we'll have to consider it. Please pray for them that they would continue to gain weight and that they wouldn't be in pain. Also please pray for patience for us as it's frustrating to see them in pain and it takes a long time to feed them when they don't want to eat.
I went back to work this Thursday and it's been hard not getting to see their sweet little faces all day long :( Thankfully I seem to have a great group of students this year and if there's any consolation, it's knowing they're in good hands with daddy. We're so blessed that Jose is able to stay home with them while their immune systems and lungs are so fragile.
Here are some (okay, a lot of) pictures from their 4 month photo shoot:
Aryanna's personalized flower clip from our friend, Shawn (Divine Creations by Shawn) |
Tutu and tube top also from our friend, Shawn! |
"What's up bro?" |
"Oh, you know, just waiting for mom and dad to get us out of this basket and feed us." (P.S. - Do you see the bellies on these kiddos?! Love it!) |
oh my gosh I love love love it!
ReplyDelete