The results are in...

Gabe had 2 doctor appoitnments last week. Here's how they went:

Pulmonary: Gabe's sleep study showed that he has both central and obstructive apnea. The obstructive apnea has greatly improved, but is still there. It is very positive though that he is growing out of it. ENT may be consulted in the future to see if he needs to have any surgery to widen his airway by taking out retnoids/adnoids, or doing tongue thining, but for now, he just wants to watch it and let him continue to grow and get stronger. Gabe originally had 27 obstructive episodes per hour when his airway was swollen from his reflux. After extubation from heart surgery, he had 17 episodes per hour. The past study showed 8 obstructive episodes per hour which is consistent with moderate apnea. I'm so glad it keeps improving.

He also has central apnea. Central is when your brain forgets to tell your body to breathe. The Pulmonologist thinks that Gabe is doing this because he was so use to having low oxygen levels the 3 months he was in heart failure, he built up a pretty high tolerance for 85% oxygenation. Because he has this high tolerance, he pauses his breathing in his sleep till his oxygen levels get in the mid 90's and then takes a breath. This pausing is preventing him from staying in REM and "waking him up" every 2 minutes. We have to retrain Gabe's brain to know that 100% is normal oxygenation and he should breathe more and not settle for 96%. In order to do this, we are continuing on with the oxygen at night and going up from 0.12L to 0.25L of oxygen to ensure he is always 99 or 100%. Another sleep study will be repeated in July.

Opthalmology: Gabe has nastigmus (sp?). This is when your eyes kind of rattle back and forth. There are a bunch of different types. Gabe has the kind that is often associated with Down Syndrome and goes along with low tone. It's mild and there is nothing that they want to do about it. Gabe is also slightly far sighted, but most babies his age are. Everything looked good and they are going to do another checkup in 4 months.

Feeding can still be a little discouraging since Gabe likes to spit his food back at us, but we keep staying hopefull. I'm also trying to get Gabe into PT soon. All the appointments, plus therapy, plus working 32 hours a week keeps me busy busy!

so cute!

Thanks to our friend Maria (www.myspace.com/mwilliamsphotography) for taking Gabe's 6 month pictures!

mmm...cereal

Gabe's poor little cheeks are red and dry from his oxygen tape. I really hope we can get rid of it soon!

Feeding continues to be the biggest thing we are working on with Gabe. Gabe could always suck, but his reflux was so bad and the irritation was causing his airway to swell, that he required a Gtube with Nissen when he was 2 months old. After heart surgery, we started working on formula thru a nipple, but by that point, he had kinda forgotten how to do it. We were working on syringing small amounts of formula thru a nipple, but that was a challenge as well. Gabe has lost his sucking reflex when it comes to a bottle. This happens to babies around 5 months of age. Babies typically get nutrition from bottles, then rely on their learned behavior to suck on a bottle to get food. Because Gabe did not have this (and never really had a positive experience bottle or breast feeding), we decided to go right to cereal and sippy cup. Gabe currently takes about 1 Tbsp of rice cereal on average..sometimes more, sometimes less. We offer his cereal as his tube feed is running so he can associate feeling full with eating by mouth. The good news is, he moves his tongue well, his bite is strong and he really likes it which means he does not have an aversion. We are really working on him pulling his lips together when he takes the cereal off the spoon. He does spit alot of it back at us. The Occupational Therapist said it's not really tongue thrusting, just exploring more or less. He likes to play with it more than anything. We also don't think he realizes that having something in his mouth means getting full. It's hard not to lift up with the spoon once it's in his mouth or just shove the spoon in his mouth to get some in there...that would be doing the work for him which is a big no no and force feeding could lead to aversion down the road. The OT warned me that feeding is the most emotional thing he will have to accomplish, especially for mom's. It's part of that nurturing thing I guess. It is difficult. It requires lots of patience. It is also hard to leave him with others during feeding times b/c tube feeding can be intimidating and is a skill that has to be learned. I really do have a love/hate relationship with this Gtube. The goal is to get it out by Oct.1st...one year after his heart surgery. As patient has you have to be, how can feeding him not be fun when you get smiles like this?!

Happy 6 month Birthday Gabe!

You bring us so much joy. We love you.

~Mom and Dad

Golden Slumbers fill your eyes...

Gabe's sleep study was last night. He never desated below 92%, so they kept the oxygen off. He did have some noisy breathing and I think I heard a little pausing, but I feel like it was an accurate depiction of how he sleeps at home. He slept about 7 hours hooked up to all the equipment which was much better than last time. Mama on the other hand only got about 5 hours. We go to pulmonary clinic in 2 weeks. They held the CPAP mask up to him to see if it would fit while we were there and it looks like it would....we'll see what they say in 2 weeks about whether or not we'll need to use it.
I also started back to work on Monday. After being gone for 6 months I'm trying to learn and relearn some things, but I feel good about it overall and I managed to make it through the day only calling Grandma Marcia once to check on Gabe. I'll post pics later this week.

up-dog

New Year's was fun. We had some people over and Gabe managed to sleep thru the whole party all the way to 6:30am..yay! 2009 had some very rough moments and some very good moments...I am glad the year is over. I know 2010 will be great. Check out Gabe's tummy time. He's definitely coming along. I apologize for the blurry pictures, but it's hard to capture an action shot. Also, the tan tape on his cheeks is duoderm tape we put on his cheeks at night. We put his oxygen nasal cannula on top of the duoderm, and hypofix tape on top of the cannula to hold it in place. The duoderm helps protect his cheeks from getting too red.

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.