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.

Gobble Gobble

Had a nice weekend. I did lots of shopping. We didn't take Gabe to Thanksgiving. He will just be getting his first round of immunizations this week (you have to wait 8 weeks after heart surgery). We didn't want to risk it with all the stuff going around. Justin and I traded off so we each got to eat some food and see our families for alittle while. Gabe's oxygen monitor was reading lower oxygen sats again on Thursday. It just didn't make sense. It was 94% and then when he woke up it was 92%. Other than a little stuffy nose, he looked great. So I turned off the machine, changes the probe site, disconnected then reconnected the probe to the machine, turned it back on and held it tight against his foot. It then read 100%. That's right...we have a box of crappy probes. I should have done all this earlier in the week when he was reading low, but with him having a little cold, I wasn't sure and obsessed over the numbers. So turns out he's just fine and we probably didn't even need to go to the pulmonary doctor earlier this week. Live and learn. First Steps therapy starts this week. I'm excited. I really want to start working towards Gabe eating thru his mouth.

Turkey Turkey Turkey

This week has been busy. Gabe started breathing a little fast on Sunday. I didn't think too much of it, just watched him close. Overnight from Sunday to Monday, his oxygen saturations were in the low 90's on 1/9 L of O2. Normally he's 98-100%, so I thought this was odd. I called the Pulmonologist Monday and they said to come in to clinic. His chest Xray looked clear, but it did look a little hyperventilated. This could mean a number of things. 1. Gabe has Asthma. They gave him Zopenex and that helped with his work of breathing, but he never had any wheezing, so it's not enough to quantify a diagnosis. 2. His reflux is working it's way past the nissen and irritating his throat area. They went up on his Prevacid dose to help with this. He was due for a dose adjustment since he's gained a good amount of weight. 3. The pressures in his heart are off and his Captopril dose would need an adjustment. We got an ECHO and his heart looks great so this is not the case. 4. He's getting a cold. I kept him on the pulse oximeter for 24 hours straight and he never dropped below 97%. He did sound a little stopped up in his nose today, so maybe he did have alittle bug. I'm not sure, but he's looking good now. Gabe also had a feeding evaluation today. We met with the Speech Pathologist at the Thomas Center. Gabe does really well with rooting, moving his head towards the pacifier, facial expressions and cooing. He loves dip tastes. They were abe to syringe formula over the pacifier and he took it well. They then tried a bottle and he really just did a lot of non nutritive sucking. This means he sucks at the bottle for comfort, not to really get formula. Whenever she squeezed formula thru the nipple into his mouth, he kinda paused for a second as if to say, "what the heck is in my mouth?". He eventually gagged a little. So, the good news is he's got a strong suck and he seems to like it. The bad news is, it's going to be a little bit of a slow process. He hasn't had anything of substance in his mouth since Sept.10, so he has to re-learn how to feed and get use to swallowing liquid again. So, we will be syringing small amounts of formula over a pacifier to get him use to this sensation.

I found out I was pregnant with Gabe last year on the Saturday after Thanksgiving. Alot has changed over the past year...I've changed too. I'm so thankful for Gabe. He makes us smile everyday. He is a huge responsibility and alot of work...more work than a "regular" child, but I think I'm thankful for that too. Back in April I never thought I'd say this, but in a way, I'm thankful for Down Syndrome. I'm thankful for having a baby with special needs because everything becomes about an achievement and what my child can do. Gabe is cooing to Justin right now and I can hear his excitement in the other room. Earlier today, he held his head up so good while sitting on my lap. Would I notice these things and cheer him on and feel a great sense of pride with every single skill and milestone if he didn't have Down Syndrome?...perhaps not. For noticing these small milestones, I am very thankful. Part of me is even thankful for heart surgery...hear me out on this one. Without heart surgery, Gabe would never have been hooked up to monitors. Without monitors, Gabe's apnea would have never been diagnosed. Undiagnosed apnea can lead to cognitive and behavioral issues ...so, in a way, I'm thankful he was on monitors for 2 months and this was detected so early.

It's bedtime for Gabe. Have a great Thanksgiving everyone!