Grow G-Man Grow!

Yesterday was a long day. We had three appointments at Riley starting with Developmental Pediatrics in the morning. I was really looking forward to this appointment, I knew we would learn a lot about where Graham is right now, where he needs to be and how to get him there. In all honesty, I thought this appointment would point out the obvious of things we already knew as far as his muscle tone development because of the omphalocele and so on. He also had another swallow test, which I thought would be a slam dunk since he had been exclusively nursing for over a week. (This was of my doing after conducting an experiment one day to see what he would do without the feeding tube for a day and he nursed like a champ. I had called Riley and talked to the swallow test nurse and she thought that sounded okay as long as he seemed happy and had plenty of wet diapers. Graham loved being tube free for that week and was his same old cheerful, smily self.)
He also had a heart echo which we do not know the results of yet.
Well, as we learned so well just a few short months ago, it's not really the best idea to set sights so high. We are on Graham time, remember?
Graham has "fallen off the chart". He was in the 3rd percentile of height and weight because he was so sick for so long and now is even lower. He is the size of a three-month-old baby. This news was quite a slap in the face, as he was nursing every two hours and had even started solids.
His swallow test did not produce the results we had hoped for as well. There is still penetration of liquid getting past the vocal cords toward his airway. He is not aspirating, but close. We have had issues giving Graham a bottle, he usually just refuses it which can be common with nursing babies, but is vital for supplemention if he was going to get off the feeding tube. We had to come up with a plan to get more calories into Graham and to get him gaining weight. So, it was back on the NG tube for Graham. Good news is, I will still nurse during the day. We will give him feeds of high calorie fortified breastmilk through the feeding tube during the night while he is asleep.
It was hard putting the tube back down his poor little nose last night after he had the week off.
As much as this seems like a step back, I have to keep reminding myself of how far he has come. As much as I hate the feeding tube, it will help make him stronger. And at the end of the day, it is my own personal issues with wanting him off the tube that I need to deal with. I look at him through my teary eyes and he is just smiling back at me like "Relax, Mom...I'm cool with this". He handles things so much better than his Mommy.
So that's where we are. We've had his First Steps Occupational Therapist come see us twice now and she shows me exercises and stretches to do with him everyday. We'll be going in for weekly weight checks to make sure he is gaining again and then hopefully we'll be back on track.

Still moving in the right direction

Graham had a couple appointments last week down at Riley. Dr. West was very happy with the progress he's made. We saw a wound care nurse about how his omphalocele has been healing (or not). I was a little concerned that we really hadn't seen too much of a change in his wound since we left the hospital in March! We are now doing a new sort of dressing on it that gives it a little more air and it's made all the difference. Right now there is just a nickel-sized scab on the front of his little hump, so I feel relieved about that.
G also saw pulminology and he is off oxygen during the day. One less tube...kinda. He is still on oxygen at night, but I am totally fine with that, it can only help.
Today, we went to the pediatrician and Graham weighed in at a whopping 12 lbs. 8oz. Everyone couldn't be more pleased.
Our next goal is to come up with a plan to be able to get off the feeding tube. We will be starting therapy right here in our home with an organization called First Steps. They are sending an occupational therapist to help with Graham's muscle tone to help with things like pushing himself off the floor while on tummy time (made much more difficult since he doesn't get true tummy time). He'll also eventually need help with sitting up, crawling, etc. since his core muscles are not where a normal baby's are. We will also be working with a speech therapist who specializes in feedings and swallowing. Graham has decided he wants nothing to do with a bottle, which can be normal with nursing babies, but it is vital to getting him off the feeding tube so we can supplement feeds and make sure he continues to gain weight.
Developmentally, Graham is just about right on track. Every week, he is doing new things. He really focuses in on faces and toys. He is reaching out and grabbing objects and attempting to put them in his mouth. I think since he has grown and can see so much more of the world around him, he is that much happier. And as we've all discovered...when Graham's happy, we're happy.

Thumb Sucker

Sunday was the day to change all of Graham's tubes. It's so strange to see him with all of them off his face. He seemed to really enjoy not having them all stuck on him so we went without for a short while.
He has a new favorite pasttime of sucking his thumb and of course we all watch on oohing and ahhing like we're watching a fireworks spectacle. It's just too darn cute!
We continue to let this little being take over our lives. He wakes up with that smile and it's still planted on his face when he goes to bed.
A couple of days after Graham's last swallow test, I decided to see if he would breastfeed. Sure enough, he did! I can't believe after 3 months of not doing it, he remembered. He's been improving by nursing more frequently and for longer periods of time. We still have the majority of his food coming from the feeding tube, but we're starting to transition away from it.
The next step toward getting our baby tube-free will be on April 27th when we go back to Riley. The pulminologist will hopefully take Graham off the small amount of oxygen he's receiving.
Our little guy needs to continue to gain weight and I think we'll have a pretty healthy baby on our hands.

Swallow Test

As you all know, Graham has been on a feeding tube since he started back on food again a month and half ago. He failed the swallow test a month ago when we were still in the hospital because he was aspirating the liquid when he drank.
We were all anxiously awaiting the test today since Graham has grown a bit and is much stronger than he was.
Well, the G-Man has proven that he is now a good test taker! No more aspirating! He is still having some difficulty swallowing, the milk pools and sometimes will start to penetrate the vocal cords (beginnings of aspiration) but will correct itself and go down the right tube.
The part Graham did the best on was the baby food. Since it's a little thicker he did better with it.
We have gotten the go ahead to start Graham on a bottle. 10ml twice a day. Now 10ml isn't that much, but it's a start and will get G aquainted with eating a new way. The rest of his feeding will be through his feeding tube. We were also given the go ahead to give him some nibbles of babyfood throughout the day as well.
We'll slowly increase the amount he's getting through the bottle based on what Graham tolerates. Another swallow test in 6 weeks!
With Graham turning 4 months tomorrow, Bill and I couldn't help but reminise on those months on the way to Riley today. We just shake our heads at what our little guy had to go through and it still brings tears to our eyes. One thing we both agree on is that we couldn't have gotten through what we did without the love and support of our friends and families. We survived because of you and I know we say it all the time, but Thank You.

Central Line is Out and Easter

Last Thursday, we went for our first check-up at Riley post discharge. It was a little strange going back, but we were in a different part of the building. My main goal for the check-up was to take out the central line that Dr. West was keeping in "just in case." Sure enough, she took it out, they were very pleased with Graham's weight gain and progress at home. We're back to Riley this Wednesday, April 7th, for the swallow test. It would be nice if we could continue this tradition of removing a tube per visit back. We'll see...

This weekend was a lot of fun! We had Bill's side of the family here for Easter. Graham ate up all the attention and captured everyone's hearts with his smiles. It was nice to see Grandpa up from Flordia. AND Uncle Andy and Aunt Kirsten from Cinncinati will be giving Graham a cousin in October!!!

Bathtime and Naptime

I was able to sneak a picture of a precious moment with Bill and Graham. This is what it's all about here folks.

We're enjoying bathtime more and more each bath. At first, Graham was a little unsure about the water, but now he seems to like the warm water and doesn't cry. Before too long, he'll be splashing around.


Friday marked two weeks home. We're finding somewhat of a routine, as much as you can with a new baby. Grandma and Grandpa have been a huge help. They pop over and give us little breaks and also watch Graham a couple nights a week since I've gone back to work part-time.
Big news, looks like we'll be seeing Grandma and Grandpa Ryder permanantly in Fort Wayne. They bought a house last week just a few miles down the road. We are so excited and I know they are thrilled to be so close to their G-Man. They don't want to miss a thing and now they won't.
Granny (Bill's mom) has had fun catching up with Graham. He always gets a big grin when she tells him about the pony she is going to get him when he gets older. Grandpa Law will be back from Flordia this weekend for Easter to see Graham for the first time since Christmas along with Uncle Andy and Aunt Kirsten.
Graham has continued to grow. We've been going to the pediatrician for weekly weight checks and G was 10 lbs. 5 oz. last Wednesday. We'll see how much he's gained this week tomorrow.
Our next Riley visit this Thursday, April 1st. We see Dr. West and I'm really hoping she takes out the central line. Updates on the appointment will be posted that night.

Fun at Home

A new season has begun and this also rings true for our family. We couldn't be more thrilled to be back to our lives at home. Graham is adjusting beautifully, a very content baby just taking in all the new sights and sounds around him.
Emma and Riley each welcomed him with a little sniff. They aren't acting at all jealous and like to be wherever he is.
The weather this week couldn't be more gorgegous. Great timing for a very anxious mommy needing to get back to her daily walks...now enhanced with a stroller. Graham loved his first walk and then a second one later the same day.
At the pediatrician today, Graham has gone from 9.9lbs Friday leaving the hospital to 9.15lbs. We should be hitting that 10lb. mark soon, we are increasing his feeding volume twice a week.
Graham's care at home is going well. We have a nurse come in twice a week to help with dressing changes of his central line and whatever else we need. He is on oxygen and the NG feeding tube, but we don't let all that slow us down. He still loves being held, but he also loves his bouncy seat and crib.
He is sleeping through the night...12 hours! It's easy to do that when you have your food shot down a tube every 4 hours throughout the night. Swallow test on the 7th...then hopefully it'll come from Mommy or a bottle.
So...so far so good. It was a very smooth transition and we're just having fun being able to do all the things we fantasized about doing for the last 3 months.
Thanks for following our journey thus far. The blog doesn't end here...we're just getting started!!!