Wednesday, December 30, 2009

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.

Thursday, December 17, 2009

Wednesday, December 16, 2009

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.
















Sunday, December 13, 2009

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.




Wednesday, December 9, 2009

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.






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 ...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!



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 night...it 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 awhile...at 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 pushup...so, 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

Friday, October 30, 2009

Home sweet home

The past couple days have been exhausting. We're trying to get a routine in place to get Gabe on as normal a schedule as possible. I think he was in shock the first day home and didn't sleep much. He did take a long nap today. He just fell asleep as Justin was reading to him (I think Justin likes storytime more than Gabe). The problem is, he wakes up as soon as we place him in his crib. He wants us to hold him or at least be near him all the time or he throws a fit. I think he was spoiled a little bit in the hospital...how could he not be spoiled?...we are paying the price now. We are giving him feeds through his Gtube over an hour 6 times a day. That means overnight, we start the feed at 11pm, end at 12am, start at 2am, end at 3am, start at 6am, end at 7am. Waking up 5 times per night to operate this pump has been difficult. I'm going to try to cut out the 2am feed and add the volume to the other feeds and see how he tolerates it. We'll work on condensing the feeds to bolus over gravity in a couple weeks. We also have to change Gabe's dressing on his chest twice a day. He had a suture that became inflammed and scabbed. They removed the scab at the hospital so he wouldn't get a skin infection. We have to clean it with soap and water, put some wet gauze in the area along with ointment, and a dressing over that. He screams during the dressing changes. We offer him a pacifier when he feeds and dip the pacifier in formula to get him use the idea of sucking when getting full. We try syringing tiny amounts of formula into a nipple. The most he has ever taking with this is 7ml. He gags alot. With poor muscle tone and reflux, feeding from a bottle is difficult. Often times babies like Gabe go from tube feed to baby food or sippy cup. We'll be trying a little rice cereal in the coming weeks. We are also doing exercises to help strengthen neck muscles and reaching for objects. Talk about a full time job. The exhaustion is totally worth it....so happy to be home. I'm excited for Halloween tomorrow. Stay tuned for pictures.

Tuesday, October 27, 2009

Discharged!




57 days after being admitted, Gabe is discharged with the diagnosis: status post repaired AVSD, reflux resolved with Gtube feeds/nissen, subglottic stenosis, and sleep apnea. His heart is fixed and we just have tube feeds, oxygen at night and Prevacid, Lasix and Captopril. I couldn't be happier. I feel like Gabe was born today in a way. It's so nice to have him at home without having open heart surgery looming over us. I am so thankful. Thank you for everyone who sent cards, made us food, gave us gift cards, etc. We couldn't have made it through this without you. Thank you also for everyone who walked and/or donated to Team Cash's Buddy Walk earlier this month. Gabe's team raised over $11,000 and ranked third in donations for the Cincinnati Tristate area. And a huge thank you to Kelly and Ryan Shrout: Kelly organized the Buddy Walk and stayed with Gabe during her downtime as a nurse on his unit, and Ryan helped organize the Buddy Walk and donated some of his personal belongings to a raffle in Gabe's name. Gabe will definitely be at the Buddy Walk next year. Many have asked how we have gotten through this and the answer really is...because we had to...there was no other option.

Here are some things that made it easier:
1. Grandma's...they are wonderful and allowed Justin and I to have breaks from the hospital guilt free.
2. Coworkers...I work with great people and have a wonderful manager who allowed me to have an extended maternity leave to be with Gabe. Not all jobs would have been as understanding. They wear bracelets that say "Gabe" on them to show there support. They are all a great people.
3. Hollistic Health...they came by the room and gave us massages...enough said
4. Blogging....This blog has been therapeutic. I originally started it as a way to keep in touch with family and friends regarding Gabe's medical status so I wouldn't have to repeat the same story over and over. Turns out I've met a great network of other Down Syndrome mothers who have "been there, done that" and know exactly what it is like. It was so helpful looking at pictures of their children during their surgery and recovery and comparing it to the super cute pictures of their kids now.


Things I've learned:
1. Advocate for your child. Even if they do end up talking about you in psychosocial rounds b/c you are so upset about the wrong ET tube being placed in your child, you have the right to let your strong voice be heard and not back down.

2. Tell the doctors, RN's and therapists who are extra good with you and your baby that they do a great job. Nothing like positive reinforcement to lift someone's spirits.

3. Never complain about the cost of insurance...we'd be bankrupt without it.

4. You know your child best. Speak up when something isn't right.

5. Talk to other families. Realize that you do not have the sickest kid in the hospital. Remember how lucky you are to have a happy child who is getting healthier by the day.

6. The biggest and most important thing I've learned through all this is: DON'T EVER GIVE UP ON GABE!

When Justin was 19, he went to France with a class from St. Henry. While he was there, he bought 2 bottles of wine: 1 for when he got married and 1 for when he had his first child. The marriage wine has been gone for 2 years now. With me nursing in the beginning and then Gabe being sick, we never got around to drinking the baby wine. We are each having a glass right now and it is wonderful.

Homeword Bound

They reviewed Gabe's sleep study and he still has severe apnea. However, he was able to keep his oxygen saturations in good range with just 1/8L of oxygen. The best treatment for his airway obstruction is CPAP. Unfortunately, the mask is too big for him and covers his eyes. So, in the interim, he will be using oxygen and then switching to CPAP when it fits him better. The oxygen will treat the oxygen desats and keep him in the 90's, however, it will not treat the apneic events themselves. This disruption in sleep may lead to neurological delays and behavior issues over time. The good news is, we know he has it and pulmonary will follow him close and get him in a CPAP mask as soon as possible. Often times with Trisomy 21 babies, it goes untreated for a long time b/c you don't even know they have it. I guess Gabe is lucky in a way to have had monitors on him for the past 2 months to detect it this early. So, with that being said, there is no reason we need to stay at the hospital...that's right...we're going home today! There's still a ton of discharge stuff and home health stuff to set up, but I'm getting excited. I actually believe them this time...we're going home!

Monday, October 26, 2009

ZZZZZZZZZZZZZZZZZZZZZZZ

Gabe failed his sleep study again Saturday night. He was so fussy and couldn't get comfortable. He barely slept. They detected that he had 10-15 apnic episodes per hour. Even though this is improved from last month (before the GTube and heart surgery, he was having 27 apnic episodes per hour), it's still considered moderate to severe apnea. Cardiology spoke with Pulmonary today explaining how great clinically he was looking and that he's been off oxygen since Thursday night and doing well. Pulmonary said they were going to review his sleep study again slide by slide and see what trends are going on and if he got enough hours of sleep to make the study accurate. They're going to come back this afternoon or tomorrow morning to discuss if they need to repeat the study or if they have an intervention they recommend.

Friday, October 23, 2009

"Happy and sad and back again"






Gabe's scope today showed laryngomalacia to a mild to moderate degree. This means that a flap of tissue flops over the larynx obstructing the airway at times. Everything else looked healed and good. Most babies grow out of laryngomalacia by the age of 2. The next step is to do a sleep study tomorrow night to see how much the laryngomalacia is obstructing, causing apnea and is oxygen enough to treat it. ENT and Pulmonary seemed pretty pleased...they were expecting his airway to look a little worse. Gabe is still off oxygen. They did have to put it on for a couple hours last night, but he's been off all day. He's discovered his facial muscles and makes the funniest expressions...cracks us up! One second he's pouting and the next he's cracking up.

Thursday, October 22, 2009

The sun will come out tomorrow





Gabe is having an MLMB scope tomorrow to figure out what to do with his airway. He will have a sleep study this weekend probably. That will give use more info about how his apnea currently is since he's had the Gtube with Nissen and heart surgery since the previous study. Hopefully we'll be out of here sooner than later. His heart is doing great and he's been off oxygen for an hour and a half now and doing okay. If only we could get the apnea under control. Here are some cute pics from this evening. Gabe has been happy this afternoon.