Thursday, September 8, 2011

The Liver is In In In!!!

After a short postponement from September 2, Graham's surgery on September 6 to repair his omphalocele was a resounding success, well beyond our greatest expectations. Dr. West was able to place his liver ENTIRELY into the abdominal cavity. She was also able to close the abdominal wall (actually his oblique muscles) to within in a scant two inches, an area that required an artificial mesh (alloderm) to connect the gap.

The regimen of tissue expansion Graham endured over the last eight weeks paid off. There was easily enough skin to cover the area. The bonus: with everything neatly tucked inside and a relatively flat tummy, the plastic surgeon (Dr. Havlik) was able to fashion a bellybutton for Graham. At some point in the future, the alloderm will be removed and his own muscles joined to form a natural closure.

The surgery lasted a grueling six hours, so it is no surprise that Graham's recovery has been rough. He was fitful and unable to sleep the night of surgery and the following day. But finally, the right combination of drugs was found to control pain and sedate him, but not repress respiration.

Graham is now resting easier and sleeping more comfortably. We expect him to leave the Pediatric Intensive Care Unit within the next twenty-four hours and transfer to the surgerical floor of the hospital. Needless to say, Mom and Dad are a bit sleep-deprived, but relieved that Graham is beginning to emerge from the fog of drugs. We are all euphoric over the success of the surgery and looking forward to seeing the old Mr. Personality with his new slim look.

Wednesday, August 24, 2011


Today, Graham had his 7th and final skin/tissue expansion. We did it!!! It feels like yesterday we were walking out of his first one not knowing how we would get through the next six. Well, there is one reason and one reason only that we all made it through...Graham. The first few Wednesdays were kinda brutal. Especially the first couple days after the expansion, with pain, discomfort and probably an element of "What the heck are these things coming out of my sides?!?" Being an outpatient procedure, we would find ourselves at home with a very cranky, sleepy baby. So Wednesday afternoons in July were spent taking turns holding Graham while he slept for the remainder of the day. He would start to perk up and start eating again the next day and we got our silly, smiley little boy back. Here's Nana and Papa doing their part (Dad's sleeping on the job, but that's okay.)

These last four weekly trips down to Riley though, we've seen such a change in the way Graham comes through each week. I think it helped that after we had a few under our belt, it wasn't our first Wednesday rodeo. Walking into Day Surgery on the 2nd floor, Graham gets a "Noooorm" greeting like on Cheers from all the nurses. Flirt.
On the emotional side, we come more prepared for the pre-surgery waits. Keeping a hungry 20-month-old occupied in a very small space for an hour and half can be a little exhausting, but with vidoes, toys and books, we got through. I was able to suit up and take Graham back to the operating room each week, which made the "good-bye" transition much easier and less dreaded.

And although seeing Graham in the Recovery Room immediately after surgery is probably the toughest part of each week, we figured out the best "cocktail" of pain management that worked best and helped Graham get through the first few hours post-op. I don't know why, but when we sing to Graham, that seems to bring him comfort as well. People who have heard Bill and I sing are scoffing right now, but today, my medley of Twinkle Twinkle/ABC's/Up on the Rooftop/Baby Beluga (don't ask me how a Christmas carol got in there) actually put him to sleep. It's so hard to see your baby confused and in pain and just have to wait it out and have him sleep it off. Daddy's big arms and warm chest help too.

Graham sleeps a lot of the way of the two-hour ride home and then most of the afternoon once we get here. The anesthesia and meds make him a little out of it. We've made him a little "nest" in our bed. Yes, we're doing the co-sleeping thing, because it's vital we all get rest and the crib just wasn't cuttin' it comfort-wise for the huge balloons protruding out of Graham's sides. We're all pretty exhausted Wednesdays, but Nana or my girlfriends makes sure we have dinner for Wednesday night.
Graham's resilience astounds me. I can only describe it through something that we see him do every week. Thursday mornings, or even sometimes Wednesday nights, Graham feels well enough to start to play. He starts to stand up to walk, wobbles, and sits back down. He tries again...stands up, takes a step or two and falls. He then tries again...stands up, takes more wobbly steps, finds his new balance and is off chasing the dogs, one of his favorite activites. NOTHING keeps this kid down!
I wanted to give a little glimpse into the last two months of our lives, a chapter we can now close and focus on the next. But not before a few shout outs to the moral support we've received along the way. First of all, my work. They've been super understanding of all the time I've taken off. Lindsay, my morning counterpart of my job share, but more importantly my friend, has picked up the extra work. Granny, who makes sure the kennel runs smoothly so Bill doesn't have to worry about his business while tending to his family.
The Carnahan's, who have let us invade their home every Tuesday night so we're only making a 20 min. drive to the hospital in the mornings, saving us from getting up at 430am. Graham loves Tuesday nights because he gets to play with his buddy, Drake (below,only 6 days younger and just had his drink stolen). And Mommy likes Tuesday nights becuase Heidi always has a glass of wine waiting along with an amazing meal.

And, of course, to our amazing support system of family and friends whose love for Graham makes me tear up just thinking about it. The outpouring of prayers and concern is something I will hold in my heart forever and gets us through the rough moments. Love love love!!!

So, here we are facing the "Big" surgery in a week and a half. His surgery is scheduled for September 2nd, a date that seemed so far off and is now becoming a reality. We will keep you informed with pictures and updates.

Saturday, July 9, 2011

Long Night, Better Day

Katie is busy, so Grandpa is doing the blog and Grandma is making dinner for everyone.

Graham's night after surgery was rough. He experienced a great deal of discomfort and was wakeful throughout the night, no doubt due to the effects of the anesthesia and the implanted tissue expanders on either side of his omphalocele. Looking at the tissue expanders, you can understand why he has so much soreness. Almost the size of an adult hand (they are already partially filled), the areas are made obvious by extensive bruising. The G's night was marked by short fitful periods of sleep. He was given more potent pain killers at prescribed intervals that eventually proved successful. Needless to say, Mom and Dad greeted the morning sun very sleep-deprived.
Graham began to rest easier in the morning, which allowed Grandma and Grandpa a chance to pinch-hit and allowed Bill and Katie to grab a few hours of sleep. As the day progressed, Graham began to take liquids, sit up and generally feel better. To everyone's relief, it was decided by the docs in the late afternoon that he could go home.
Last night, in his own bed, was much better. Graham had long sessions of sleep, which means the pain medication is doing its job. Today he is up and about and getting back to his eating schedule. He is reluctant to crawl, however, because of the discomfort caused by the expanders. But he stands and walks with the aid of his push toys or Mom's hand. The best news is that we are seeing the old Graham personality beginning to break through...silly faces and all.
This Wednesday, we make the trip back to Riley for the first of six weekly saline injections into the expanders, a procedure that will necessitate a mild anesthetic and result in tenderness for a day or two.
Although there is still much ahead for the G-Man, We feel the first big step on this final phase of his recovery is behind him.

Thursday, July 7, 2011

Brave Little Boy

Okay. Long day. We had a wonderful pre-op experience. Graham did fine with just clear liquids for the morning and was his normal cheery self when we got here and as we were checking in. He had the surgery nurses wrapped around his little finger within 5 minutes...Flirt. They gave him something (by Mommy's request) to make him a little loopy for when the time came to say good-bye and send him back to surgery around 2pm. That part went tears.
The surgery took longer than we had expected...about 3 hours. Graham did NOT come out of recovery well. He was very agitated and in obvious discomfort. Anyone who has had surgery knows awful it is waking up and those first few hours thereafter. Bill and I held him during that time, but laid him down when we got to our room thinking that might be a little more comfortable. After some more pain meds, some songs and getting him all snuggled in, Graham dozed off around 830p and has been asleep since. Poor little guy.
We caught a little look at the expanders...not what I expected. They are bigger than I had envisioned. They also look painful. During Graham's surgery, the surgeon put some pressure on the omphalocele to see how his body would react and the pressure on his lungs made his respirations go way up. This will be an issue come September.
Bill and I are staying in Graham's room tonight and going to get some sleep as soon as I tie up here. We're hoping for a pain free night.
Graham was such a brave boy today. I'm so proud of him. In a moment with my mom tonight, through my tears I exclaimed, "I can't believe we are doing this to him!" Her response, "We are doing this FOR him." I will try not to lose sight of that in the hard moments of seeing him in pain that I can't take away.
I'm hoping after sleeping off some of the yucky anethesia and staying on top of the discomfort, we'll get a Graham smile tomorrow. We'll see.

Wednesday, July 6, 2011

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!!!!!