We're Baaaaaaack!

Back where?!? You ask? Well, obviously I'm back in the blog world. I took a six month hiatus. Journaling Graham's journey the first year of his life was such a helpful way to inform everyone of how Graham was doing. The overwhelming response we received mixed with being able to get some thoughts out, turned out to be extremely therapeutic. So yes, I am back with you. As we continue onto what has been laid out for us, whether it be a medical update or a vent session, I know it falls on the concerned eyes and minds of the people that love Graham and our family the most. Thank you.

Lately, medically, there hasn't too much to update on. The past 6 months have held many many joys for our family watching Graham grow and learn on a daily basis. Our lives stopped revolving around The Omphalocele. Graham started hitting milestones, having weekly playdates and has formed into such a sweet, silly little boy. I've started to heal from the events that took place his first few months. My obsessive worrying dwindled when we finally got to take his feeding tube out last September. I have been moving on with our life, it's been nice. The haunting memories still make random visits, but I know I'll carry those with me forever.
Looking back over the past six months especially, I must admit there has been a bit of denial on my part. I liked to think I was raising a normal, healthy baby and went about my days accordingly. I didn't want to face the fact that at some point the large bump on Graham's stomach would have to be repaired. That I'd be taking that walk down the 2nd floor hallway and experiencing the dreadful moment of when they take him away from me. Those worries flooding back.
The omphalocele stares us in the face everyday, but it's always just been a part of him. As his mother, I love every inch of him to pieces and see him as nothing but perfect. But physically, it's time. It has grown to the size of a softball and with Graham walking now and just being an all around little monkey, it's time to put that liver back in!!! So tomorrow we start the process of fixing Graham's omphalocele.
It will be 8-9 procedures/surgeries to repair "the bump".
First, tissue expanders (a port attached to a sophisticated balloon) will be placed on the sides of Graham's abdomen. One on each side underneath his skin. Starting next Wednesday, Dr. Havlik (plastic surgeon) will fill the balloons slightly with a saline resulting in stretching the skin. This outpatient procedure will take place every Wednesday through July and August with Graham under general anesthetic. The first 24 hours after this procedure are painful so Graham will be on pain meds. But after 48 hours, the discomfort will subside. September 2nd will be the "Big" surgery when they put everything that is out, back in...using the new stretched skin to cover.
So this is what we are embarking on. Yes, we are back at Riley. Yes, Graham is back in surgery. As much as those statements make me shiver, I have to realize that we are back with a strong, resilient child. THE G-MAN IS BACK!!!!!

Graham Slam-1 Year Old!!!

December 8th, 2009. One year ago, I met the most beautiful little boy. Graham Ryder Law. To be honest, it is difficult thinking back to the day he was born. I was so scared, and sometimes all I remember is being scared. I try not to let that overshadow some of the amazing moments I shared with my son that day. I got to hold him, which I had been told would not happen. But I also came to the harsh reality that day if anything were to happen to this baby, my life would be over. I know most new parents experience this, but oh it hit me like a ton of bricks. It was pure fear. I was terrified and I am still learning how to manage that fear.
Graham and our entire family were in the loving hands of Riley's Hospital for Children and Ronald McDonald House, two places that would become "home" for the next 94 days except for a brief stint between Christmas and New Year's. Day in and day out, our entire worlds hung on whether or not this child pooped or not, when the green stuff coming out of his stomach tube would run clear so he could eat, or if a certain cry meant hunger or pain. We waited as doctors made decisions, we expanded our vocabulary to include words like tachyphnea and omphalocele, and learned how to put in a feeding tube and change a sterile central line dressing. Our days lit up when Graham would open his eyes and focus in on his Daddy, when he started to smile amid all the tubes, and we'll all remember "the sneeze". Our days were dark when I witnessed my baby not being able to breathe, saw doctors shaking their heads and nurses cry. I dreaded taking him to the 2nd floor and kissing him good-bye as they took him surgery. We survived because someone would come visit and bring homecooked food. We'd receive an encouraging message from someone we loved, or I'd get a phone call from a friend when I really needed to hear her voice.
Grandpa coined the name "G-Man" in his blogs and it has stuck. Today we have a smiley, animated, curious little boy on our hands. He fought the good fight, I am so proud of my Graham. I think he inspired us all. He will certainly have a story to tell one day.
I know day after day, you all read as our lives were turned upside down. You rejoiced with us on our good days and wept with us on the bad. You are all much much more than our blog followers. You were a main source of support for our family throughout the turmoil of Graham's ordeal and for that, we celebrate with you as we mark his 1st year.
Pics to come...

Graham is Crawling

Graham is on the move!

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...