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.
Saturday, July 9, 2011
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 great...no 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.
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!!!!!
Monday, December 13, 2010
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 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...
Thursday, November 25, 2010
Sunday, August 22, 2010
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.
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.
Thursday, July 1, 2010
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.
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.
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