Holidays

Christmas was fun. It was nice seeing all the relatives and introducing him for the first time (it was the first time many have met him). I think he was a little shocked by it all. He's not use to so much stimulation. He had very fussy nights Christmas Eve and Christmas Day, but the routine is back in action now. Early last week, I took Gabe in to see the surgical Nurse Practitioner. I went to nursing school with her so it was nice catching up. His Gtube was looking alittle questionable and was sore. Turns out it had some yeast on it, so we've been using Nystatin powder and it looks much better now. Gabe has sounded a little congested lately. Not sick, just stuffy. Babies with Down Syndrome tend to have narrower nasal passages, so they may get clogged up a little more. We're using saline in his nose and a nasal aspirator I got at Babies R Us that works like a charm. His sats have been great, he just breathes a little heavy when he's clogged. Gabe has also been extra gassy for about a week now. He has these screaming fits 2-3 times a day where he just sounds like he's in so much pain. I know he's tolerating his feed b/c he's fine with it while he's sleeping, his belly is soft, and he's had plenty of dirty diapers...he's just gassy. Gas is difficult for Gabe b/c he had a Nissen procedure done with his Gtube surgery. This is when they wrap the stomach around the top of his esophagus to create a one way valve of food going in, but not coming back out. This has really helped his reflux. However, it also means that he can't vomit or burp. In order to relieve the gas, we attach a large blunt syringe to his gtube and let the gas bubble out. All you can really do is vent him, give him Mylecon or Tylenol and let him cry it out. I took him to the pediatrician yesterday for them to check him out just to make sure I'm not missing anything and they said he looked great. Other than having a gurgly sounding belly he was great, his lungs were clear, his belly was soft, and his exam was unremarkable. So, I started venting him multiple times a day (even when he's not fussing) and massaging his belly. Any other suggestions from the Gtube mammas out there on how to deal with gas? The big thing is now that we're introducing cereal (this is week 3), I don't want him to associate pain with eating. I really have a love/hate relationship with this gtube.
Here are some Christmas pics. Gabe was spoiled of course. He got some clothes, rattles, bath toys, push toys, books, a baby pool, and a gtube friendly bathing suit.
After being off for almost 6 months, I go back to work on Monday...I'm having mixed feelings about it.

Gtube and Pulse Ox friendly PJs...yay!

Thanks to the Dickens family at A Little Something Extra for Us for the pajamas!

Bless all the dear children in Thy tender care....

Gabe is getting a little stronger everyday. With that strength, he has really gotten good at pulling his oxygen off when he sleeps (he's on oxygen for his apnea). The pulse oximeter never alarms so that leaves me hopefull that his apnea has improved. Either way, we have to really tape the cannula to his cheeks so it will stay on. If he's tired enough he doesn't care. The next sleep study is scheduled for Jan.4.

Christmas pics

Gabe is doing well. I've noticed lots of improvement with lifting his head during tummy time. In general, he has been very happy. He sleeps really well at night. I'm trying to work on a nap schedule. All I want is for him to take a morning and afternoon nap. Even 3 one hour naps would work. He just wakes up after 15 minutes if I lay him down. I think he gets tired more frequently b/c he has to work hard with his low tone. This makes him take cat naps....at least that's my theory. Any recommendations on how to get a kid to nap longer than 20 minutes without you holding him? I'm trying to rock him, put him in his crib and leave the room. When he wakes up, he doesn't cry, he just plays and is wide awake and then he gets tired an hour later. I can't complain b/c he is sleeping 10 hours at night and usually doesn't really wake up. Napping would just be nice to give me a break to do chores, scrapbook, read, etc.

Aunt Andrea came over this week and took some pictures of Gabe for the Christmas card. He was so cranky. He was tired, then hot, then hungry and the smiles were few, but he was still cute. Here are some that are good, but were not chosen for the card.

What about Gabe?

It's been awhile since I posted. Gabe had his immuni-zations last Thursday and he was so fussy for 2 full days afterwards. It was a little discouraging b/c he didn't want to play much or reach for rattles or lay on his belly...just be held while mommy bounced him. He has been pretty happy and smiled alot the past 2 days which has made me feel much better. We have been doing core and shoulder strengthening exercises that the Occupation Therapist recommended. She told me today that he is very delayed with his motor skills...about a 1 month level. This was very hard to hear, but then I remind myself that he did have open heart surgery 2 months ago and he was in a hospital bed for 3 out of the first 4 months of his life. I should give the little guy a break. If I think about everything he's doing since he came home from the hospital, I feel more encouraged. He doesn't seem too far off socially or cognatively. He communicates well with his smiles and cooing and pouty face. His abs, shoulders, and pecs are just really weak. The good news is, the muscles in his mouth are getting stronger. We massage his gums and face and just today, we started tastes of rice cereal. Gabe loves it! We want to make these initial tastes as positive an experience as possible and not force anything to make Gabe unhappy with feeding. We just rest the spoon on his bottom lip and let him lick it in his mouth. You really have to fight the temptation to give him a whole spoonfull right in his mouth.....as Bob would say...we're baby stepping.