Recovery

Someone at church today told me to update the blog. Nudge to Lynne Barker, ehem.

I hope everyone had a nice holiday, and for those who were affected by tornado I hope you are receiving plenty of help to rebuild/ find new homes. My prayers with all of you.

The last time I wrote the blog is about James' nissen procedure as well as gastrostomy tube placement.

4 days after surgery

We took James home from the hospital on Saturday. A nurse came that day to check if we got everything we needed. There was a confusion regarding the dosage of a medication because the medical student said one thing and the surgeon said another.
The next week we met with several home health nurses to see any progress/ update with James' intake/ output, pain level, G-tube site, weight gain, etc. We also met with a lady from Coram specialty infusion to get the feeding pump, milk supply, feeding bags, tubes, syringes, tapes, etc.
In case you want to see pictures, here are the medical items we have in our home.

1. Joey feeding pump. Easy to use even a caveman can do it.


2. Feeding bag. Only good for 24 hours due to sanitary issue, after that, toss to the trash. I know, I feel so wasteful every time I toss it out.


3. Right angle feeding catheter. The purple tip connects with the adapter from feeding tube. The other end is what fits in the g-tube.

4. Straight angle (bolus) catheter. We will use this to feed James when we're out and about without the feeding pump. We connect it to a syringe filled with 1 - 2 oz of milk at a time (that's James' limit). It runs by gravity, so if he pushes it out then... it'll take him longer to finish the milk.


Now, every night James gets a continuous feeding while he sleeps. He can't take a lot during the day, which  nobody seems to know why. Every time I increase the milk intake James decides to puke it all out. We've done 2 GI studies and both came back normal. We've given James different types of medication to control the gagging and vomiting but they're hit and miss. The last med we got before our trip to Indonesia worked WONDERFULLY. James took more food and had less problems with vomiting and gagging. Now that he's immune to the medication we have to stop the med and try a new one. So far the new one is ok. It's not super awesome or anything but it helps a bit. Sigh....

I think I'm a bit side-tracked here. I was going to talk about recovery but ... I don't think I remember much of it. There was a lot of appointments at pediatric surgery office and the GI office. It seemed like every week we made a trip of two down to OSF. There were many episodes of puking/ vomiting, frustration and the feel of exhaustion. For a while we gave James a regular type of Pediasure, but the amount of milk he had to take was too much for his stomach to handle. Now we're giving James Pediasure 1.5. Its got more calories in 8 oz of milk compare to the regular pediasure. When we started him on 1.5 he puked a lot more. Things didn't look right, so we consulted his GI doctor about it. He suggested to add a couple oz of water. After a month we lower the amount of water added in the milk. Instead of adding equal amount of water to the milk, we're down to adding 3 oz of water for every 8 oz of milk. His GI doctor didn't like that you know, and argued with me even though I said it's impossible. So, I proved it to him. I gave James pediasure 1.5 without adding water and guess what, puke puke puke puke and we did a load of laundry each day. So.. ta da doctor.

James' doctor is a good doctor, don't get me wrong. He just has a special way to communicate. Sometimes a bit challenging since he doesn't smile a whole lot and quite reserved. However, I see that as a challenge. I managed to get him to laugh once and it felt good. The walls came tumbling down. I'm sure we're on the ''special'' list of patient, hahahahhahahaha. Seriously, I'm not so bad, I think. I've gotten more relaxed compare to the year before.

I shall end the entry, because.. well... I'm  quite tired. James woke up every 2 hours last night and cried his eyes out. Nightmares must be. It's been like this for at least 1 month. Ryan and I play 'tag you're it' during the night, taking turns to calm James down.

Here are some pictures of James from last year before our trip to Indonesia. These pictures I got from FB, sorry, my laptop isn't linked to all of our pictures. I have to ask Ryan about it.

I will be writing about our trip in our next entry. It's going to be exciting, possibly something like a box office number. HA!

Getting stuck inside a toy basket. I was on the phone with a GI nurse. I heard him crying and found him like this. I burst into laughter when I saw this. The nurse couldn't help but laughing as well.

Posing on top of the winning pumpkin.

James' first time at Tanners' Orchard. It was a beautiful day.

One of many Dr's appointment. What to do while waiting to be seen? Take a selfie of course!

Fix You

On August 1st James had a Nissen fundoplicaation & G-tube placement surgery. His pediatrician & GI doctor have discussed about these 2 procedures being done months before the surgery took place. James was on a medication for 3 weeks prior surgery to help his stomach empty faster. If you remember my previous post James wasn't eating very well nor gaining weight.
The medication worked wonderfully, but it was only for a temporary fix. A week before surgery James vomited up to 4 times a day. We did laundry every single day b/c he would vomit in his bed, our bed, his clothes, the sofa, pillows, you name it.
We received a phone call the day before surgery to confirm time of check-in. We woke up quite early on August 1st and left for the hospital at 7 AM. The check in is at 7:30. 5 minutes in our trip my phone rang, I couldn't take the phone call since I was driving. We arrived at the hospital around 7:15. Again my phone rang, I scrambled through my purse to get the phone. It was a nurse from the surgery. She informed me that I was late for the 7:30 AM surgery. Confused I responded that I was told that I have to check in at 7:30. I replay the voice mail in my phone and there is no information regarding having a surgery scheduled at 7:30. Ryan and I sprinted to the check in area and soon after that we were sent down to the lower level for pre-op check.
The surgery took about 2 hours and it went without any complication. Thank you for your prayers for James' surgery.
Since only 1 person could see James in the PACU, Ryan went inside while I wait in the lobby of James' designated room for the next 2 days with Diane (mother in law) and Alyssa (sister in law). I was able to FaceTime with my mother while we were waiting to be let in to JAmes' room.
One hour later we got the permit to enter the children' floor.
James was quite sleepy when we saw him. Ryan spent the afternoon holding James and making sure he was comfortable. James started to wake up a couple hours later. He was very agitated and looked quite miserable. As part of post-op rules, James wasn't allowed to have anything per mouth until the next day. Boy, that was rough! I asked for a  mouth swab/sponge and dipped it in the water. James took that swab like there was no tomorrow and sucked the water dry from the sponge. He was very upset when I took the sponge away.
I sent Ryan home for the evening and spent the first night of hospital stay with James. After hours of holding him I laid him in his bed so I could get ready for bed. James cried  and cried and cried some more. The only way to stop him from crying is by holding him. He was on scheduled pain medication but at the same time he was held the entire time after surgery. I dont know if he cried solely due to pain or b/c he wanted to be snuggled. This is the child who doesnt want to be snuggled but wanted nothing else but snuggled with during the entire hospital stay. I asked the nurse for a breakthrough pain med. I showed her that James will only stop crying if I hold him. It took the resident hours, I mean HOURS to get the breakthrough pain medication. I was livid and in the brink of tears. Bless the nurse for putting up with me.

Since James wouldn't settle by sleeping in the crib by himself, the nurse switched the crib with a regular bed so I could cuddle James for the night. I repeatedly thanked her for caring for James.
James finally manged to feel content after receiving the pain med. He, however kept waking up every hour or so, touching my face as he was checking if I was still there for him. It was a long night, neither of us got proper rest.
When morning came I told one of the med student how unhappy I was the night before and how James' pain wasn't managed. I don't want to write about this pain medication deal but it just went on and on. On top of that, nobody seemed to have the information as to when James can take his milk. There's only so much I can do to keep him content.

Anyways, 2nd night I had Ryan to stay with me so we could take turn holding James. Ryan's parents also came by taking turn holding James.

James had surgery on Thursday and got discharged on Saturday. During morning rounds we were told that the discharge paper was done and we could leave whenever we wanted to. Alright, so it sounded a bit weird to me that discharge paper were all done before 9. I mean, hello that's unusual! In my experience as a nursing student I have never seen a discharge on saturday THAT early. Anyways, with my all my questions regarding education/ post-op care/ pain med management I wouldn't blame them for wanting us out as quick as possible.

So.. now that we're out of the hospital, I was hoping that the recovery process would be smooth. Well, I was wrong. The easy part was to get the surgery. We didn't see what was coming during recovery.

to be continued.....

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.