Sunday, November 29, 2009

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.

Wednesday, November 25, 2009

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, 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!

Wednesday, November 18, 2009

Doctor Doctor Give Me The News

It's been busy busy. Yesterday, Gabe had a follow up appoingment with the Pulmonologist to discuss his sleep apnea. We will be repeating a sleep study in January and then go back to the Pulmonologist to review the results and see if there are any changes and see again if the oxygen at night is helping him. From there, we will see if a CPAP mask fits him yet. They may also do a sedated sleep study in the future to see at what point in the throat area he is obstructing. Once the obstructive part of the apnea is treated, they'll be able to make sure there is no central apnea. Central apnea would mean there was something physiologically off with his brain making him pause his breathing when sleeping. Really hoping no central apnea. For now, he thinks it's just the obstructive apnea and we'll find out more info in January. He was very happy with how good he looked. Yesterday evening we met the Occupation Therapist and Developmental Coordinator who will be working with Gabe. We set goals for the next 6 months. We would like Gabe to be able to sit and play on his own while reaching for things and putting them in his mouth. We would like him to continue to cue and communicate. We would also like him to be able to eat some by mouth. They thought these were all achievalbe. Today we went to surgery follow up for the Gtube. Gabe got a Gtube button. yay! This means no more tube hanging from his belly. The little button is easily hidden with clothes. He can bathe and swim in it and it's hard for him to play (tug) with. I also had the surgeon look at his heart surgery scar. We've been doing dressing changes on the area b/c of the inflamed sutures. Even though the picture makes it look red, it actually looks really good and is scabbing over and he said we could stop doing dressing changes on it and just use soap and water. Gabe has been very cute and smiley. I can tell when he looks at us talking to him he is focusing so hard and learning from us.

Monday, November 16, 2009

Wednesday, November 11, 2009

Doing well

Other than being a little gassy with feedings, Gabe is doing well. He has started waking up hungry more in the middle of the night, but I think it's b/c we're playing with the dose/rate/and concentration of his formula and it throws his schedule off. He still doesn't like to take solid naps, but he does go to bed pretty well around 8 or 8:30. He has been very cute lately and has given us lots of smiles today. We went to the Cardiologist today and they said his heart is doing so well we don't need to go back for 6 months. He will be coming off Lasix over the course of the next 2 weeks. They typically continue Captopril for alittle while after surgery to give his mitral valve some time to relax without pressure against it so it doesn't get leaky. After the Cardiology appointment in May, we will go back in October assuming all is well. At this 1 year visit, they will do another Echo and if things still look good, take him off the Captopril and just follow him yearly. They were so happy with his color and how easily he was breathing since the heart shunting blood to his lungs is now gone. He's such a chunk! You should see the fat roles. He's gained a half a pound in a week, so we are cutting down the fortified formula from 30 cal to 24 cal and eventually 20 cal (normal strength). Next week we go to Pulmonary clinic to discuss his apnea and Surgery clinic to discuss his Gtube and feeds and see if he'll qualify for a gtube button even though he's so gassy. I've gotten feeds down to 40 minutes through the pump. He just has weird fussy episodes about once a day when he's gassy. Hopefully fortifying the formula less will make him more comfortable so we can get the button. He's discovered his Gtube and I'm afraid with the one we have now with the longer tubing, he'll pull it out or hurt himself. First Steps will start coming routinely to offer Early Intervention next week and we have a feeding eval set up at the Thomas Center for Down Syndrome the day before Thanksgiving. Hopefully Gabe will get something in his mouth for turkey day...even if it is Alimentum. I finally got the Panasonic HD Writer for my video camera but I have yet to figure out how to post video. There are so many cute clips since Gabe has been born. It's hard to look back and see how sick he was. He was working so hard to breathe. Here is at least a picture from today and the weekend.

Thursday, November 5, 2009

Let the early intervention begin

It has been a busy week. Gabe is finally on a night schedule. We are fortifying his formula to 30cal which has allowed us to skip the overnight feed. Gabe slept 9 hours straight last was amazing. If he wasn't wearing his pulse oximeter overnight I probably would have been running in his room every hour to make sure he was breathing. We are working on naps during the day. Gabe was originally taking about four 30 minute naps a day. I have started rocking and holding him during his 10am and 2pm feeds. This usually puts him to sleep, so hopefully that will get him on a little bit of a nap schedule. First steps came to the house on Monday. Gabe will start with a Developmental Coordinator who will help with cognitive milestones and an Occupational Therapist who will help with facial muscles, feedings, and reaching for objects. We went to the Thomas Center for Down Syndrome on Tuesday and met with Dr.Summar. I like her alot. She answered all my questions and was familiar with his history. She told me that Gabe was the youngest baby she'd ever seen with obstructive sleep apnea and he supported her research hopes that all infants with Down Syndrome undergo a sleep study by 6 mo of age. She also commented that Gabe has a very high arch in his mouth and wants him to meet with a feeding team before putting anything of substance in his mouth to make sure he is safe. I agreed since he gags alot and I don't want any formula going in his lungs. Problem is, the earliest appt. with the feeding person in Dec.1st. They will be calling me if there are any cancellations to get in sooner. It sounds like feeding might be a slow process, so we'll probably have the Gtube for least as back up if he doesn't meet his caloric requirement with formula, rice cereal or baby food. We saw the Pediatrician today and she was thrilled with how Gabe looked. On the Down Syndrome growth chart, he is 50-60th% for height, 60th% for weight, and 50th% for head circumfrance. She hadn't seen him in awhile and was so happy that his breathing was less labored and he's no longer pale. We can't get immunizations till 8 weeks after heart surgery, but she assured me that we would catch him up eventually. All of the practitioners agreed that Gabe is cognitively doing well with tracking, responding to faces, colors, lights, etc. He has quite the personality and is starting to "fake" cry if he hears my voice and just wants to be held. The muscle tone in his legs is pretty good. He does have to work on his upper body strength. Open heart surgery and laying in a hospital bed for 2 months took a toll on his shoulder and neck muscles. He has a baby gym that he loves. Laying him on his back and expecting him to swat at objects is too much for him right now...kinda like expecting him to do a, we are proping him up on an angle so he just has to reach forward to touch the objects. We are also rolling up towel and laying him over it for tummy time. This roll allows him to have alittle more chest support. We are also holding him with his back against our chest facing outwards. This will allow him to find his head balance and he enjoys the stimulation. Gabe is really into faces right now so we are also making lots of expressions when we interact with him. These activities have been helpful and I'm already seeing improvements.

The following video is a promotional add for CCHMC. Gabe is briefly on the video at 48 second and 1:30. He's famous!

Sunday, November 1, 2009