Big spider web

I'm scrolling the photos I have in my phone, trying to figure out which event happened in what month. Unfortunately I can't see that information unless I download these 500 pictures to the computer.

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:

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).

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

James loves the warm weather.

Birthday ride from great grandma K

Everyone's got a wild side

James' first trip to Goshen, IN

1

It's been one year since James came home.

No more oxygen machine
No more heart monitor

We still have lots of doctors appointments and medicine but compared to a year ago... what a change!

Warmer Weather

Although it has been really rainy the past few days, James was able to spend a few minutes outside!

Overdue

Aye, how this blog has been deserted. Well, we're back.

Let's see. We had a great Thanksgiving dinner with the family. Instead of cooking the traditional Thanksgiving feast I opted for some barbecue baby back ribs, baked potatoes and chocolate covered strawberries. Mother in law brought over some salad and green bean casserole (my favorite).
James was wearing a cute outfit from his great grandma. It says 'Mommy's Little Turkey' on the front. He was all excited for the celebration but then fell asleep right after lunch.

December

Ryan and I took James for his 6 months (post-hospital discharge) checkup at Easter Seal building in Peoria. We were scheduled to meet with 2 physical therapist to do an evaluation on James' skills development. Just when you have your kiddo on a schedule, bam, you have an early appointment and everything goes down the hill. James was quite sleepy that morning. He wasn't eating much of his breakfast at home, so we fed him while we were waiting for our appointment.

The session itself was... an interesting one. There were 2 PTs, they gave James 2 wooden cubes as big as his hands. He wasn't able to keep those cubes in his hands. They told us that James isn't quite there yet to be holding cubes. I wish they would give him smaller cubes so they could see what James can do. Anyways, so they did some stretching exercise with him, propped him up and laid him on his tummy. They questioned us if we had any PT working with James, which we answered with a 'no'. They looked a bit shocked to hear that from us. So I had to explained to them that we have an OT (occupational therapist) who visits every 3 months. The OT told us that James was doing good at the last evaluation and saw no need to ask for a PT visit. She gave us some ideas which exercises would be good for James to get him started on new skills. Based on these information I didn't ask for a PT to come over. I mean.. how much does that cost?

Anyways, I drifted. So, the PT thought it was ..hm.... unusual of us (or maybe .. dear Lord, these parents are hopeless) that we didn't ask for a PT. Long story short, they spent 10 minutes with James and decided that he's way behind. At this point I was in a defensive mode. I told them that I've done exercises with James everyday. I asked them if a kid that small really could do all these skills they mentioned (roll over, reaching everything, sitting up properly). The PT said that weight isn't the matter. A kid with the same adjusted age as James should do all these stuff. I asked if the fact that James spent 4 months in NICU and was on Oxygen machine until September (?) could be one of the reason of the delay. The PTs think that's really  not the case.
At the end of the session we saw a NICU doctor for follow up and made a schedule to have a PT to work with James one on one.

After what we thought was a brutal morning Ryan and I decided to go to Starbucks to cool down. Since we were already in Peoria I thought of calling NICU to see if Laura (James' former nurse) was at work, and she was.
We talked to Laura about our morning and she told us not to be discouraged. She mentioned that each child learns at different pace. Laura encouraged us to keep working with James. We may not see the result right away, but all the exercises sure will help James later. We definitely felt better after talking to Laura. We needed to hear something positive after James' physical evaluation.

Still in December...
We finally met Ben (James' PT) and he did a more thorough evaluation on James. Unlike the 10 minutes session we had a whole hour. I think Ben really got to know James. I had to tell Ben about the last experience (does this make me a bad person?) at Easter Seal. He mentioned that children who were born as early as James and spent months on oxygen tends to have a little more delay on their skills. Their muscles get a little weaker after being put on oxygen support for a while. Anyways, he gave us a list of exercise to get James ready to roll over and to get used to being on his tummy.
We feel much better now after hearing that while James has a delay in his skills (as expected) and with proper exercise James shouldn't have difficulties catching up.

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My mother told me that the 10 minute session was a wake-up call for us. She said that it might be necessary for us to hear that things may not go as well as we wanted. Since the 2 appointments we've been working even harder with James. The kid is being consistent as always (translation = he cries throughout the exercise). He made wonderful progress since then. He grabs everything (hair, coat rack, face, eyelids (ha!), clothes, etc.). He also finally rolled to his back! That was a glorious day and for another post.

I will post some pictures from 2012 later.

Thank you for all the prayers and support for our little guy. He is our little sunshine :)

November

It's November. How can it be? A week from today we'll be celebrating Thanksgiving. It will be the first Thanksgiving we celebrate with James. We won't be fixing turkey this year, but the green bean casserole is a must.

James turned 9 months old on the 9th. It seems so weird to hear that he is 9 months old. Since he spent the first 4 months of life in the NICU we really think that he's only 5 months old - from the day we brought him home. Things have slowed down quite a bit, which is a relief. James' medication regime isn't as crazy compare to 5 months ago. He only takes zantac for his reflux, a breathing treatment (which probably lasts until the end of flu season), and a multivitamin. That's it!
I personally not a fan of giving him the breathing treatment. The task is usually done by my mother in law or Ryan. Mwahahahahha. Usually after a day of feeding him, playing with him, doing range of motion exercises, bath time, and snack time with him the last thing I want to do is the breathing treatment.
Before I had James I didn't think I'd last being home all day long with a newborn. However, I think I have started to enjoy it. At least for now, while he needs me the most.

Anyways, we took James to an eye doctor last week. Preemie kiddos sometimes have issues with their eye muscles. They are prone to have lazy eyes, crossed eyes, etc. While I was concern about how the appointment would go, knowing that he survived from the NICU - a little eye problem seems to be very minor. The result of the first eye appointment is good, phew! We have a follow up appointment in February. Between now and then we will keep monitoring his eyes development at home.

I took James to his 9 months check-up, and for a flu shot yesterday. James is now weight 10 lbs, 9.6 oz (ay, he is skinny), he grew 3 inches from his 6 months appointment (yay). He was showing off the entire time of the appointment. Dr. Beaty was saying how strong James' muscle tone is. I guess we're doing a good job at the ROM exercises at home.

I've posted couple pictures on FB. If you're not friends with me I don't think you can see them. I will post some later today. James is up from his nap and is sucking his fingers. I guess it's time to feed him.

Ryan did some windows update on my laptop and stored all my pictures somewhere else. I only have one picture saved in this laptop for now. I will post that one picture from Halloween night :)

Till later,
Gabby.

Been Gone Too Long...

Aye,

Has it been that long since we updated the blog?
Well... I was on a cleaning streak for 4 days. Grandma Sutter and I did a curtain shopping to brighten up the front room. Boy it looks so nice now :) Since that day I went ahead and cleaned (I mean, really cleaned) the rest of the house. Ok, so about 75% of the house. Also.. recently I've started baking cupcakes while being a stay-home mom. I'm taking a couple semester off from nursing school to care for James, so... baking cupcakes so far works great :D

Anyways,

James has been doing good. He still spits and pukes a couple times. Working with a puker is not so fun sometime. The dr. wanted us to feed James a specific amount of milk every 3 hour. James did so well for 3 weeks and then boom, he threw up twice everyday for a week. Now we're splitting 1 feeding into 2 feedings. On top of that we're starting to feed James some baby food. It's quite busy in the Kirk's household. It makes the time goes by really quick though.

Last week there were 3 ladies from Peoria came to check on James' developmental progress. So far James is doing as good as a 4,5 months old baby. That's exactly where James should be, because he was born 4 months early. We are quite ecstatic to hear the result of the evaluation.

Well, I leave you with 2 pictures of James tonight.

Trying out a new bumbo chair. 

A lady made a 'cocoon' for James. It's quite cute :D

Night, night. I hope you enjoy the Fall weather :)

Another good weekend

This past week James has done really well with his oxygen. Most days and nights he hasn't needed it. Sure his alarm goes off here and there, but he always brings his saturation levels back pretty quick. 

 

We took James to Mass for the first time this Saturday. He slept through almost all of the service and his monitor only went off after mass when we were putting him back in his carrier. 

nom nom nom

On our way to church