Ryan has posted 2 short updates about James, but not enough detail. So here we go.
James has been doing wonderful, preemie style, of course. I mean, as much as I want to compare him to kids who were born on term it's just not the same. These past couple of months we've learned how James' health issues are just one big spider web.
I am not sure if I have mentioned in the previous blog entry about James having difficulty of keeping his food down. Well, it gets worse. He's been stucked with the same weight since February. He's getting taller, has learned new tricks, but no significant weight gain.
Let's break it down, shall we?
1. Hello food, why won't you stay down in James' tummy?
Laundry, upon laundry, upon laundry. I guarantee you every time we put him on a new outfit, he will "christen" it with spit up or barf. Our weapons of choice to clean up his mess are: whatever rug we can find, and this guy below. This stuff works wonder! Baby food? no problem, puke? gone.
Our pediatrician referred us to a GI doctor from OSF. We've been seing this dr for about 7 weeks now. He gave James a stronger medicine for the reflux, basically to protect the lining of the stomach. Since James' GERD (Gastroestrophageal Reflux Disease) is bad, the dr recommended to have an upper & lower GI check done. So we did. Check out this trooper after the procedure. The dr told us that everything looks ok, no lining has been damaged by the reflux, however, this has to change. It means, if James keeps throwing up his food, there's no way he'll get his nutrition to grow. As for now his diagnosis is Failure to thrive. I mean what kind of diagnosis is that? It sounds bad, doesn't it. It makes it sounds like we're not doing anything for this kid to grow. Anyways, I've somewhat come to term with that official diagnose. I usually tell people that James takes after me. Per my dear mother, I too didn't want to eat when I was little. The difference here is James would drink his milk, but spewing it all out right after. I, on the other hand was voluntarily fasting. Instead I would sing. Yes, I did. Mom said I would sing my heart out, day and night. It's a karma I tell ya.
Now, what happen next Gabby? Aside from GERD? Can't be that bad, eh?
Well... dear friends, here's what happen.
James aspirates.
2. Feeding therapist said..."How come I didn't see James while he was in NICU?"
Neither Ryan or I had the clue that seeing a feeding therapist when our kid spent some time in NICU is a must! So friends, if you happen to know somebody with preemie baby, please tell them to meet with a feeding therapist. Stat!
I am not saying that all babies born premature will have feeding problems. I know 2 families whose kids have no problem of eating while in NICU. It's a good awareness though.
In James' case, he doesn't have the best tongue muscle coordination. We knew that James doesn't take his milk as fast and as excited compare to a normal, hungry baby. We didn't know the magnitude of what this would cause us in the future.
I was being extremely defensive on the first day I met the feeding therapist. I was frustrated hearing of what she said about James' condition. I wasn't happy, and I did tell her that. I also told her that I'm willing to do whatever it takes to help James to increase his tongue muscle coordination.
So we tried new bottles, new size of nipples, adding some cereal into the milk to increase calories, etc. Every time we tried a new routine it was for 72 hours. Pretty sure I banged my head to the wall 3 times a day out of frustration. I think it was around this time that I constantly expressed my complains on Facebook. Sorry friends, there was too much pressure going on.
So.. not only James aspirates from the reflux, he also aspirates from drinking the milk. Now now, what's the deal James? In order to see the problem, we had an upper GI test done, followed by a swallow study a month later. The upper GI came back good, James upper GI system looks normal, yay! The result of swallow study however, didn't come back as good. The study confirmed that James indeed has been silently aspirating. They call it 'silent' because James didn't cough during the swallow study.
I'm talking as if all of you knew what happen during a swallow study, forgive me. My fingers types too fast.
James drinks a concoction of barium & milk. As he swallows the milk the doctor takes x-ray pictures to see where the barium goes. The feeding therapist sees if James sucks the bottle properly. There's a lot of switching of bottles, thickness of milk, and types of formula involved during the study. It's pretty chaotic. There you go, I hope that helps to picture the scene.
So far James has had 2 swallow studies. The results from both study shows that James still aspirates. The thing is, kids are more resilient towards the whole deal with aspiration. Us adults will try to cough up whatever it is that tickles our airway. Kids like James who don't cough when aspirating will have fluid built up in their lungs. Once they get sick, they get sick real bad and real fast (esp. in the winter). So if I am being very anal about people having to wash their hands before touching James and or not to visit when they don't feel well is because of this reason right here. Honestly, it won't concern me if someone thinks I'm uptight or a little over the top about the issue. The reality is yes I'm uptight about the situation. There I admit it :) Parents, you gotta do what you gotta do to keep your kids healthy.
Thankfully, James hasn't gotten the flu, or fever, or pneumonia since we brought him home from NICU. Isn't that amazing? We are sooo blessed! The feeding therapist was shocked when we told her about this. She was pretty sure that James would often be sick due to the aspiration. Not yet m'lady, not yet.
Picture time:
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| James went to visit Laura, RN at OSF in |
3. Well, James aspirates, but why? In order to know why, we had to see an ENT.
Hello scope, where are you going? Down my throat? I'm going to cry, right now, and puke all over myself. - James
Going to see an ENT specialized in feeding disorder isn't only because of the whole James aspirates. We also notice that JAmes' voice hasn't really getting louder. We were told his raspy voice will come back, but since it's been over than a year it's a good idea to have it checked.
The doctor talks to us about what he saw:
Apparently JAmes left vocal cord isn't moving. Some possibilities: long-term intubation (and multiple reintubation - James pulled it out a couple of times), and the PDA ligation (remember James had to have his heart fixed?). Now I can understand about the long-term intubation can cause vocal paralysis, but why in the world would the heart surgery affect the vocal cord? Apparently, one of the risk of getting a PDA ligation done is a vocal paralysis.
Here is the explanation : The nerve that controls the left vocal cord (the recurrent laryngeal nerve) runs very close to the PDA. The surgeon is operating in a tiny area when a baby weighs less than 1,000 g, so injury is often not preventable. This is a recognized complication of the surgery and doesn’t mean than anything went wrong.
Mind BLOWN.
**Take notes dear friends, as I will be quizzing you over this later. (kidding).
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| James also got to see Emma, RN - what a great day :) |
Still with me? Let's do a anatomy review. With a working pair of vocal cord, we really don't need to worry about aspirating. As we swallow our food these vocal cords closes to prevent food/ fluid to enter the airway. Since James' 1 side of vocal cord isn't moving, there's nothing that will stop food/ fluid to enter the airway -> lungs. This... takes us to problem number 4.
4. Next stop, the lungs.
As I have mentioned above regarding James having silent aspirates, you know it's going to be about his lungs.
James has been on breathing treatment (Budesonide) for over a year. During our 12 months check up I asked the pediatrician if we can stop the treatment. I figure hey flu season is almost over, why not end this treatment? Did you know what his respond is: "Has he seen a pulmonologist?" My go-to answer was "oh come ooooooon." At that time James is already seeing 6 different specialist. I think my response is well justified.
We went to see a pulmonologist for the first time on Monday. We got some new nebulizer, new solution, a rescue med, medicated cream to treat eczema...... and my jaw dropped when I saw the cost of all the meds. It's a good thing that James is cute, you know? When I see him I feel blessed, challenged, loved, humbled, sometimes frustrated, concerned.... but that's for another post :D
Anyways, the new dosage of breathing treatment is to get James' lungs as strong as they can get. Being a preemie, he really didn't have enough time to grow, to be fully mature... so now we're playing catch up.
We can only handle what's on our plate, and so far they plate is full. It is full with joy, blessings, struggles, disappointments (hey we're human, no judging), tears, love, laughter, and most of all, we have Christ in our life.
We have been so blessed with great family and friends. Without your supports we wouldn't last this long. So thank you, from the bottom of our hearts. We hope one day we can repay all of your kindness.
Our journey isn't finished. We will keep you all updated soon :)
Blessings,
R & G
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| James loves the warm weather. |
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| Birthday ride from great grandma K |
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| Everyone's got a wild side |
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| James' first trip to Goshen, IN |
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