Saturday, December 26, 2009
Thursday, December 24, 2009
Wednesday, December 23, 2009
In the surgery today, Dr. West was able to fold down some of the vicrylmesh that was originally covering the omphalocele over the part that had broken open. They think the incision ripped open because in Graham's everyday movement, the omphalocele moves too. It literally flops around when he breathes or cries. The main thing we'll do differently now is tighter dressings to prevent all this movement from happening. That omphalocele is wrapped within an inch of it's life!
We'll let you all know how he did when he woke up and how the rest of the day went on a post tonight. Thanks for checking in...
Tuesday, December 22, 2009
Sunday, December 20, 2009
Friday, December 18, 2009
Graham was a little more alert today and didn't require as much pain management. He is such a tough cookie!
As I was just reading back over this post, I realized Graham is going to kill me one day for posting his naked picture and for talking way too much about his poop. Oh well, he better get used to his mom embarrassing him.
Thursday, December 17, 2009
Well the day after surgery started off great. Graham got his breathing tube taken out this morning and that made a big difference. He did not like that thing and neither did Mommy and Daddy. He's breathing perfectly on his own. He's got some swelling all over (face, hands and legs)but we're noticing tonight that it's starting to go down. Dr. West said that should be much better tomorrow. He slept the majority of the day, actually all day, they're keeping him pretty comfortable. Poor little guy had quite a day yesterday. He is such a trooper. We're anxious to get him pooping and eating again asap so he can start to get his strength back.
Wednesday, December 16, 2009
The second problem was something called Merkel's Diverticulum (sometimes called an omphalomesenteric duct) that, luckily, was surgically repaired. Merkel's is a bulge on the small intestine. Graham also had his appendix removed.
Problem three occurred when Dr. West attempted to press the omphalocele (mostly the liver) into the abdominal cavity. Graham's blood pressure went up (because it impacted the vena cava) and his respiration dropped. It became obvious that the omphalocele could not be put in his abdomen. The omphalocele was then covered with vicromesh that will dissolve and be replaced by skin over a period of time. Lots of care and changes of dressings at home are ahead for us.
We are now looking at 6 to 9 months before a final surgery that will bring an end to Graham's ordeal. During that time the omphalocele should ease itself more fully into Graham's abdominal cavity, a process made easier by small incisions made today that make the opening larger.
Besides all the good work accomplished today, other positive news finds Graham getting off the respirator much sooner than anticipated (no pressure on his lungs and diaphragm), so we are still hoping to be home by Christmas.
Tuesday, December 15, 2009
Our neighbor baby in the NICU module, Olivia Elizabeth (aka Graham's first girlfriend), is being taken off her life support. Olivia's mommy and daddy, Jodi and Adam, are a great couple Bill and I have enjoyed befriending. Even the grandmas have struck up a friendship knitting together in the NICU waiting room. Olivia was born the day before Graham and has struggled all week. For every piece of good news we recieved, they recieved bad. They are a strong family, but their lives will now forever be changed. Again, please remember the Burns family today and their little angel.
The procedure will secure the omphalocele in Graham's abdomen. After the omphalocele is pressed into his abdominal cavity, the sac that has been containing his liver and some intestines will be removed and all will be sutured in place. There is a chance his abdominal cavity will not be large enough to easily contain this mass and a hernia may occur at the surgical site. This can be fixed at a future date.
He will be on a respirator for a while afterwards...hopefully not more than a few days. The omphalocele compresses the diaphram and lungs and will affect his ability to breathe. Graham cannot be fed until he is off the respirator.
He also has to pass (literally) a "poop" test before he can be fed. Of course, he will be getting nutrition intravenously.
Difficult days ahead. Knowing that so many people are holding us in their caring thoughts helps carry us through this worrisome time.
Graham with his favorite nurse, Susie.
Sunday, December 13, 2009
Saturday, December 12, 2009
Thursday, December 10, 2009
Things are moving right along, and day three has provided the Law family with more great memories. Despite Graham's condition, we are enjoying our time at Riley's Children Hospital. It truly is an amazing place. The support staff naturally demonstrates its love and affection towards patients and their families, and Katie and I are impressed with everything the facility offers. We feel very lucky that Graham's omphalocele is fixable, and that our loved one does not have the complications that other good people here are battling with. Still, we are anxiously awaiting the day we pack up our bags and head for home. We can't wait for you to meet him!
Day two was a fun one! After getting Graham more acquainted and comfortable with his new world, Katie and I were able feed, change, and hold him without restrictions. He slept through the majority of the day, and at times was wide awake and able to open his eyes to stare back into the direction of his cooing parents.
Unfortunately, due to Riley's Swine Flu prevention policies, only Katie and I are able to be in the NICU to see Graham, and in this video we were anticipating and preparing for the arrival of Graham's Uncle Andy and Aunt Kirsten. Enjoy.
Tuesday, December 8, 2009
Saturday, December 5, 2009
That day, my amazing OB, Dr. Zacher, explained that Baby had what was called an omphalocele. It was obviously something we had never heard of and took at least three days to learn how to pronounce. I avoided the Internet that night out of fear and also since we had an appointment the very next day with a specialist. The following is a good website though explaining the basic facts.
Dr. Wheeler (specialist) explained there are different sizes of omphaloceles. Our baby has a very large one due to his intestines and liver being outside of the abdomen. He also explained that a high percentage of babies with omphaloceles have some sort of other birth defect...e.g. heart, chromosomal, etc. That statistic scared us, but from what they could see/measure on the ultrasound at that time, he seemed to think we would just be dealing with the omphalocele as an isolated issue. Actually, for reasons unknown, having a giant omphalocele lessens the chances of having other birth defects. We opted out of an amniocentesis at that time due to the risk of having one so early in pregnancy, but recently had one at 30 weeks with normal results. We also had a fetal echo on the same day to check the heart and everything looked good there as well.
So, what we know...
Mid-October we took a trip to Indianapolis' IU Medical Center and Riley Children's Hospital for a second opinion visit and were just blown away by all the information we received there. Due to the elevated risk of having a vaginal delivery, I am having a C-section on Tuesday, December 8th, 2009 at 9am. We decided to deliver at IU Med Center so the baby could go straight to the NICU at Riley (the hospitals are conveniently next door to each other, connected by a covered bridge). We had a great meeting with Dr. West, the pediatric surgeon who will ultimately be doing surgery on Baby sometime following his birth. We know the doctors start to gently push/massage the sac back into the abdominal cavity in the days following Baby's delivery. When all the organs are back in then the baby will have surgery to close up the abdomen. He'll have a little scar and they even make him a belly button!
What we don't know...
How long will it take to push everything back in. It could be days to weeks. This is something that will be determined in the days that follow the birth and why we have this blog. They really need to see just how big the omphalocele is and how small Baby's little abdominal cavity is having formed without these major organs inside it.
We feel so lucky for several reasons. First of all, we can fix it! Babies with omphaloceles go on to live completely normal lives with little to no long term effects. Also, we have had lots of time to wrap our minds around the situation and prepare emotionally for things to come. Ever since that day of my 13 week appointment and receiving the "bad" news, everything to follow has been positive and encouraging. We realize many people have not been as lucky with similar situations and for that we are thankful everyday.
Stay tuned for updates, especially for all the fun initial details like Baby Law's much anticipated name. Feel free to ask any questions and leave comments on the blog. If you are reading this, it means you are concerned in some way for our family and for that we will forever be grateful. We truly have the most amazing families and friends that have surrounded us with their words of encouragement, support, advice and prayers. All we can say is thank you and we love you.