Growing so fast!

May 2012

Jul 28, 2012 -So here we are months since our last blog posting. Boy, how things have and are quickly changing! Our last visit with the surgeon and pulmonologist was near the end of June. At that time, we got the "all good" sign and we don't need another appointment until his first birthday! Really?! We don't have to come back for 4 months?! That news made me a little teary, just the thought of how far we have come. Things have gotten very comfortable and normal for the most part. In fact, I missed one of Jacob's appointments. I have never done that, ever! I don't know how it happened except to say things are going so smoothly that it just slipped my mind. Must be that I'm not so worried 24/7 and daily life just took over! Slowly we are reclaiming our house, and it is no longer being overrun by medical equipment. In June, we sent back all of Jacob's "stuff". We had about five large oxygen tanks (for emergency back up), eight small tanks for traveling, the concentrator, an oximeter, and his two feeding pumps. I wish I had taken a picture of the load waiting by the door for pickup! I was surprised myself at just how much stuff we had tucked under the beds and closets and such!

Jacob also had his third swallow study (at 7 months old). The bad news is he is still allowing deep penetrations of milk into his airway. We didn't see any micro-aspirations, so that is an improvement. We still need to use thickener in his formula. The good news is he did okay when we tried solids and the doctors gave the go ahead to start adding solids to Jacob's diet.  Jacob had a very rocky start with any type of baby food. He puts things of all shapes, sizes, and textures in his mouth, but the minute any type of food (even rice cereal made with formula) touched his tongue, he would gag and throw up. Aaaaah! Not the throwing up again, we just got over that! With lots of attempts, Jacob finally got over that but he always gets really raspy sounding like he isn't completely swallowing. He coughs and during his swallow study showed that he protects his airway (even during throwing up which they caught with fluoroscopy). No one can really understand or explain the raspy part away. We know from him being scoped and the swallow studies that he swallows well so it just doesn't make a lot of sense. The theory is he just produces a lot of saliva secretions and can't keep up with them. Hmmm......Well, he is getting better over time but has yet to even eat one whole jar of baby food. For now he still is taking seven 4 oz bottles a day fortified to 30 calories/oz. Another strange thing, you would think that if he had trouble with choking on baby food that he would have trouble with larger, more solid types of food. It's just the opposite. He does really well with small bits of soft food and Mum-Mum crackers. He has the chewing/mashing thing down pat! He just started eating broken up Cheerios. Every once in a while a piece will get into his gag spot, and he will throw up. When he does throw up it usually is his entire stomach contents. So that makes us apprehensive to feed him often. We don't want him to continually be losing nutrition by throwing up everything. We attempt feeding solids about once, maybe twice, a day.

Look at me sitting so big!

Jacob started physical therapy at Good Samaritan Children's Therapy Unit at the beginning of June (at 7 months old.) At that time, he wasn't yet rolling over or sitting up. He was just beginning to roll from side to side while lying on his back. He wasn't even holding his feet yet, and he HATES tummy time. He does not have very much neck strength even though he holds his head great when he is upright. After being evaluated, Jacob is considered to be developmentally delayed. He is not only delayed physically, but also in the area of communication. His therapists expect him to quickly get up to speed and on target. Jacob does a lot of strengthening exercises through playing with toys and twisting and turning with his therapist, Sarah. He loves her! He also tells us when he starts getting tired or things are very challenging. In fact, he vocalizes loud enough for everyone to hear! Jacob has made amazing progress in the last six weeks. He is not only rolling over and sitting up now, but he is actually pulling himself up on on the coffee table to a kneel (almost a stand) and grabbing stuff off! He is starting to rock forward from a sitting position to almost a crawling position, although if he gets to a crawl position he starts to scream. He is also sitting and using he feet to turn in a circle and sometimes scoot on his bum to go places. He has been so immobile that it is quite startling to sit him down, turn around, and see him sitting somewhere new when I look back! Yet he can't crawl, and he is so silent about it.

He worked really hard to pick that flower!

 It has been easy to get lost in the time of how long we have been home versus how old Jacob is since he is so delayed. Since Jacob is about two months behind in development and that is about how long it was before we got to bring him home, it is easy to think of him as being much younger than he truly is.When he was six months old, it only seemed like he was 4 months old. Now that he is nine months old, he seems like he is only six to seven months old. It seems like his "age" started when we brought our baby home. His time in the hospital was like an out of time and space experience and it's like his life really started when we all came home.

Jacob also started seeing a feeding therapist every two weeks.  (We have only had one visit.) That therapist said as we see Jacob improve in his gross motor skills and strength, we can expect his eating skills to improve as well. Well, she was quite right! We have gone from a smear of a taste on a spoon to sometimes half a jar of baby food. He is now opening his mouth for the spoon and not gagging (and throwing up) with each flavor. He is also having less raspy sounds in his throat and is coughing less and less. It used to be every feeding ended in a clothing change and lots of laundry. In fact, we didn't even bother with bibs because they were never enough to protect his clothes from the inevitable!

Lots of baths!

Jacob is an expert splasher!

 I'm still unsure of how to balance his feedings though. So all you moms of CDHers with feeding advice, let me have it. We are still fortifying his formula which means he doesn't take in a large amount of liquid. In fact, he is close to the limit of dehydration by about one bottle. So my problem is if we start feeding more solids than he won't be hungry for his bottles as much but he needs the fluid. So do I stop fortifying thus making larger volume bottles (more liquid)? Will his body tell him to take in more formula to make up for it not being fortified making him take in larger volumes? We want to make sure he is getting the right calorie intake along with fluid intake. There have been so many different methods used by CDH kids. Many parents are surprised that we are still using such a high calorie fortification. Lots to discuss with our pediatrician at Jacob's next appointment and with the dietitian at Seattle Children's, but I'm interested in what other CDH kids have done as well.

You can catch a glimpse of the bottom teeth!

 Jacob has really developed a little personality. He is curious, yet cautious. He has a very strong will and knows what he wants. He is quite a bit anxious and absolutely HATES to be alone, even if it is only an arms reach away from one of his family members. He is very friendly and loves people. His smile can light up the room. It seems like he makes a special connection with each person he meets. He has a special relationship with each sibling. Jacob and Landon have always been buddies. Hazel often drives him a little batty, but they have really begun to communicate in their own special way and play together too. Lately, he's been acting a little lonely when his siblings, especially Hazel, aren't around to interact with. That warms my heart! Jacob is babbling a ton. He says "nuh, nuh" when he wants to eat and has even signed a couple of times for milk.  He has yet to really say dada or mama. He has quite a mouthful of teeth now. He has two on bottom, and at the end of June (8 months) he got FOUR teeth within just one week on the top! You can imagine he was one unhappy little boy! I don't have a good pic of those teeth yet.

Our future consists of therapies, feeding progress, and one more visit with the cardiologist for another echocardiogram in August. Then we are just taking it day by day until Jacob's next visit at Seattle Children's around his birthday at the end of October. It boggles our minds that we are just three months away from the one year anniversary of this mighty journey! Time sure flies when you don't have a moment to watch it!

Our precious kids

The Rondeau Family on the 4th of July