Gabriel is five months old! He’s been out of the NICU now for almost nine weeks. He’s about 11 lbs 7 oz and 21.25 inches long…still my tiny guy! When Gabe feels like it and is attentive, he takes down a little milk from the nipple of a bottle that is backed by a syringe filled with milk so that the amount he receives is controlled, maybe a third of an ounce every few days. We’re working on that part! For now though, he’s still on 100% tube feeds. He most likely won’t be able to start solid foods at six months old, he doesn’t quite have the coordination or desire enough for that yet, but that’s why he has the Mic-key button. He’ll have the Mic-key button for as long as he needs it…until he can take down adequate nutrition by mouth. He sees two therapists a total of four to six times a month to work on improving head control and oral feeds.
Gabe is still on a small amount of oxygen, but he doesn’t really struggle without it. One night I plugged him into his oxygen tank upstairs but somehow forgot to turn it on. 12 hours later I realized my mistake, but before I turned it back on I checked his oxygen saturation with his home-monitor. After 12 hours of no additional oxygen, he was satting 97-98%! 92-97% is an acceptable range and he was at the high end of that! Even though he would probably be fine without the oxygen, he’ll most likely stay on it through RSV/cold/flu season, just in case.
Gabriel is still on eight medications. If each time I give him medicine is counted as one med, then he gets a total of 15 throughout the day. Five of those are breathing treatments that he gets three times a day. He’s still on continuous feeds for 18 hours of the 24 hours with two three-hour breaks. His Mic-key button is cleaned during those breaks, as are the feeding bag and the tube that connects the bag to the button. As long as he’s not congested, I try to get him to take half an ounce of milk twice a day…. Gabriel’s care keeps us pretty occupied throughout the day. I’m not able to work, nor do I want to. I never understood why women would choose to stay at home with their children instead of having a career. I get it now! Oh man, I get it…and that’s exactly what I want.
We’re switching pediatricians…sore subject…because Gabriel is three lbs heavier than when he left the NICU and yet he’s on the exact same amount of milk with the same amount of calories and the same dosage of medication….hence why we’re seeing a new pedi.
ECI (early childhood intervention) came to evaluate Gabriel because he qualifies for two reasons: Down syndrome and preemie. Since he was born 10 weeks early, developmentally he should be at the stage of a three month old, not a five month old. His first two full months of life should have been spent growing inside of me, so those months are not considered when looking at his development. That being said, Gabriel was evaluated to see where he stood developmentally. The three areas that he’s behind in are head control, rolling over, and in oral feeds. The one area that he’s ahead of is social/emotional! I have an emotionally and socially strong baby, makes me very proud. Gabe smiles, talks quite a bit (and is adding “cooh”s), he’s ticklish, his neck muscles are getting stronger, he’s interested in looking at his toys, and he loves cuddling…and so does his momma!! He’s about to start batting at his toys and he’s almost ready to start giggling! If Gabriel’s smile already makes all the hardships and worries for a day completely disappear, then I can’t imagine what his laugh will bring ❤