The Summer of Firsts

The Law's have had a busy and HOT summer to share with you. It's about time, right?!? We have travelled a bit, seen some long distance family and hit some major milestones that Graham is going to show off for you. It has definitely been The Summer of Firsts. Everyday it seems Graham is doing something new. Of course, we thought the first time he stuck his finger in his ear was just as amazing as him sitting up. So at this point G-Man thinks he's pretty hot stuff. I've compiled some pictures and videos to try and chronicle some of what we've done. Enjoy.


Loved the sand on my toes, but the Lake Michigan water was just too cold!


Hanging with Mom on a pontoon ride.


Had a blast with Daddy swimming in the pool.

And drum roll please.....

I'm sitting up like a pro!
He's been gabbing up a storm.

Graham has also gotten his two bottom teeth. Those are a little harder to capture on camera since we only catch glimpses with his big smiles. All in all, we are blessed with a very happy baby. It seems like he's having as much fun discovering all this new stuff as we are watching it. It just keeps getting better and better.
I often wonder at times if these moments are heightened because of what we witnessed Graham go through the first few months of his life. With each passing day, I feel our time at Riley becomes a distant memory as we make new ones. With that being said, there isn't a day that goes by that I don't look at my son and still have a little piece of my heart break for the babies and families robbed of getting to experience these firsts with their little angels. As much as I would like to forget some of the horrible things we saw Graham go through, I know it brings an appreciation for the miracle that our family was so fortunately granted.

There is much to report as well when it comes to Graham's medical issues. First off, he has been off his feeding tube for almost 4 weeks now. Good news is he never lost weight when we took that away. We are working with a nutritionist through the First Steps orgaization that Graham receives his therapies through. She has been so useful helping us supplement the calories Graham is not getting through the tube. It's been trying because our stubborn little G-Man refuses to take milk from a bottle. That can be common with nursing babies, but would've been so much easier transtioning off the tube. We didn't see a weight gain the first couple weeks, but we are now seeing one slowly but surely. We add calories to the solids that he eats with a product called Duocal and monitor his weight pretty closely. So...we are officially tube free.

A visit to see Dr. West last week is forcing us to start to look toward Graham's upcoming surgery now set for next summer. During this visit we also met with a plastic surgeon who will be involved in placing tissue expanders in G's stomach muscles surrounding the omphalocele (which has grown to the size of a softball). This will be quite a process, one in which I'm glad we have 7 months to mentally and emotionally prepare for. Starting two months before the "Big Surgery" they will place a port and the expanders in Graham. For 6-8 weeks, EVERY week, we will take Graham in to have more saline added to the expanders. It will cause him discomfort and a general anethetic will be used for each of these procedures. The reason we are doing all this is so when they put Graham's liver back into his abdomen, the muscles will be big enough to cover and attach together in front. It also eliminates them having to use any artificial material instead of his own muscle. He will have plenty of skin to cover it with the new skin he has formed covering the omphalocele right now.

Hope you've enjoyed a little glimpse into our wonderful world of Graham. This little guy turned our worlds upside down and still continues to do so by bringing so much joy into our lives.

Graham's First Trip to the Zoo

As Graham is getting older and stronger, we are feeling more and more comfortable taking him out and about. So, since the weather couldn't be more perfect this week and my friend Michelle was visiting with her two little ones from out of town, I thought it was the perfect opportunity to see Fort Wayne's famous children's zoo. The day was a blast. Graham was nothing but happy the entire day.
We went on an African Safari...

He slept through the giraffes,

Daddy showed him the monkeys,

and he had fun watching his friends on the carousel.

I'm sure there are many trips to the zoo in store for us as Graham gets older, but this was a special day because getting to take my son to the zoo was something I've dreamed about doing long before we even met him.

On a side note, Graham also had what will be his last swallow test Thursday morning. He passed with flying colors. As much as this is wonderful news, it doesn't change a whole lot with the feeding tube. Yes, the feeding tube is in because he was having difficulties swallowing, but Graham is also having some gaining weight issues. We are using the tube to supplement him with the extra calories he needs. He still won't take a bottle.
We have a much anticiptated appointment down in Indy with Dr. West on July 8th. Hopefully, we'll have a better idea of future plans for Graham's surgery when we see her.

Good News

We were greeted with some good news Sunday morning. The results from the CAT scan taken the night before indicated that there was no bowel blockage causing Graham's problem. Because the G-Man's alimentary track is a bit different and the fact he has had a major abdominal surgery, a blockage was a worry. But the only things to show up were some indications of distention and swelling in his intestines, probably caused by a viral infection.
Once the blockage was off the table and the doctor pronounced his bowel sounds good, we just had to wait for Graham to poop. (Haven't we been here before???) His stomach contents also finally began to run clear, so suctioning was stopped. We immediately broke out the old poop dance choreographed at Riley many months ago, and it worked ... with a little help from a glycerin chip. Katie was allowed to resume nursing this evening, and all is going well so far. If Graham's night is uneventful, he'll be discharged tomorrow morning.

Sick in Fort Wayne

Friday morning, Bill and I rushed Graham to the ER when he started to throw up green stomach bile, his temperature dropped to 95.4 and he became very lathargic. Since Lutheran Children's Hospital is 5 minutes from our house and it was a seemingly urgent situation, we took him there. Graham's pediatrician also works out of that hospital. It's been a weekend of the roller coaster ride we all were really not ready to hop back on. They started an IV (only took 2 tries), gave G some nausea medicine and took some xrays to make sure he hadn't aspirated when throwing up. This xray showed mainly that Graham was extremely backed up and constipated. He hadn't pooped in a day, which with babies can be normal. But the throwing up was an obvious concern so Graham was admitted to the hospital for further observation and was assigned a consult with THE pediatric surgegeon of Fort Wayne, Dr. Smith. They started suction through his NG tube to relieve his stomach of the bile so he would stop throwing up. Later that day, Dr. Smith ordered an upper GI test, which pretty much came back inconclusive because Graham couldn't keep down the dye they gave him for the test. Graham slept pretty well Friday night, but started to become pretty agitated Saturday. He got some Tylenol and received an enema which worked a little bit, but not much. As the day wore on, we could tell he was much more irritable and in obvious discomfort. Docs decided to do a CT scan yesterday evening in hopes to get a clearer picture of his abdomen. It's hard to read his xrays because of the omphalocele. He also got a couple doses of morphine which made him relax and get a good night sleep. Today, he woke up happy, even gave some smiles and sat up a little bit (pictured above). He has that sad sick look though that just breaks my heart. He hasn't been able to eat, but I've been doing non-nutritive which I think comforts Graham (and Mommy). We are waiting to talk to Dr. Smith about the results of the CT and go from there. If any further surgery is needed (Dr. Smith was speculating a possible obstructed bowel), we'll be heading back down to Graham's old stompin' ground in Indy. So, to be continued...

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.