Saturday, December 26, 2009

Home

Lots of pictures for the blog today. The first picture to the left is Bill and I walking out of the NICU with our baby in hand. It was very strange becuase this was the first time I walked with him in my arms in 2 1/2 weeks. He wasn't connected to anything...no more wires and tubes! We made it home safe and sound to grandparents more than ready to hold their first grandson.


Nana and Grandpa Ryder






Granny and Grandpa Law










Thursday, December 24, 2009

Merry Christmas to Us!

We are coming home today!!!! We just got discharged and we'll be heading home in a few hours!

Schnockered




These pictures were taken yesterday after Grahams surgery. He was obviously very comfortable in Daddy's arms and still a little out of it from anesthesia and pain meds. As the day went on, he felt much much better. He got the breathing tube taken out and got the go ahead to start eating again about 2am. Today, he's a new man...so alert and really starting to focus in on things. Should know soon about going home!

Wednesday, December 23, 2009

Road to Recovery

Graham is out of surgery and all nestled in. We are waiting for the anesthesia to wear off and see those little eyes open up. He does have a breathing tube, but it won't be necessary for very long and will hopefully be out later this afternoon. We also hope he'll be eating again with mom by tonight.
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

Minor Setback

Yesterday when I was doing Graham's dressing I noticed along the incision on the underside of his omphalocele there were a few spots that looked whitish and were puffing out slightly. I said something to the nurse and we tossed it up to the healing process. This afternoon when we did his dressing it had quadrupled in size and was definitely something to cause concern. What is happening is a couple of his stitches came out and part of his bowel is protruding out the bottom of the omphalocele. So, he's going back into surgery tomorrow morning (Wednesday) at 9am to mend the problem. Poor little guy, he just got off all his pain meds, got his IV out and has been eating great. We could really tell today he has gotten his strength back. Plus side, it won't be as invasive of a procedure as before which is a good thing. Home for Christmas might not be happening now which is a little disappointing, but we'll celebrate whenever we get there whatever day that happens to be. I want Graham to be as healthy as possible and we're just glad something like this didn't happen when we were already home. Keep our little guy in your thoughts and prayers tomorrow and we'll update as soon as we can.

Team Law




I realized today is Graham's two week "birthday", but it also marks the two weeks we've been living at Riley. It really has been such a blur. So many people have asked "How are you?" Although I could go on and on about what a wonderful place Riley is, we are ready to COME HOME! It's just not natural to put your baby to bed at night and then walk half a mile away to sleep and not know if your baby is crying or hungry. We have spent hours upon hours in the NICU, but it obviously just isn't the same as being on our own routine at home. We are getting along fine on sleep deprivation, I think I have mastered the art of sleeping sitting up. We love our Graham so much, we're just soaking up every little moment with him. I thought after 9 months of being the center of attention, I would miss it a little bit, but I have gladly relinquished the spotlight. Bill and I automatically went into parental mode and it's been an experience we'll both never forget. I keep talking about the amazing care Graham is receiving, but Riley has taken very good care of us too. Bill and I have always tried to be service-oriented and donate or volunteer for certain charities. We have never been on the other side and been the recipient of a charity. Ronald McDonald House has been our savior. I can't even begin to talk about how much they've helped us. Being able to stay close to the hospital, have hot home-cooked meals to eat and just a comfortable place to come "home" to, has allowed us to worry about the things we needed to. Another wonderful mood booster for us has been YOU! Your comments help more than you know and thanks to the Curves members who have sent the sweetest cards that have brought tears to my eyes. I miss you ladies! Having the support of friends and family is something we'll never take for granted, there are a lot of parents of little ones here who have no one. We love you all!
Hopefully by the end of the day, we'll have a more concrete update for you on when we'll be home.

Sunday, December 20, 2009

Poop Report


He pooped!!! Just as ancient civilizations danced to bring rain, we've been doing the poop dance around Riley the last 4 days...and it worked. Doctors gave the go ahead for him to eat again and boy was he hungry. He breastfed wonderfully this morning, Mommy was a little worried he would forget. So we're back on track, and for the first time, one of the doctors said he might be home for Christmas. They are going to start teaching Bill and I how to do the dressings. Also, we'll get him fitted for a special device that will go over his omphalocele so he can be in the car seat, and Occupational Therapy will make a special foam mat that has a little scooped out portion for his extended belly for tummy time. They think of everything here!
He also got some new digs. In the picture he is in a CRIB! Good things are happening here, we are so thankful to have such a strong little boy and amazing nurses and doctors.

Friday, December 18, 2009

Graham's New and Improved Omphalocele

Naked baby alert! Sorry guys, that is a catheter, but it got taken out today...one less tube! The picture below is the first one taken of the omphalocele since his surgery. As you can see, the light tan material covering the omphalocele (vicrylmesh) is basically going to be Graham's new skin, since they cut off the membrane covering the omphalocele. Dr. West was hoping the skin coming up the side of his liver would come together, but since the liver didn't go in as planned, this is what it looks like now. The vicromesh will absorb as Graham's new skin will start to cover the exposed area over time. We will be doing daily dressings, (Dr. West was getting ready to do it in the picture) when we get home. As for when that will be, we still don't know. Still waiting on the Big Poop to happen. Poop equals eating, eating equals strength, strength equals home.
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.




Here is Graham with Anna, another one of his wonderful nurses. They all just love him and take such good care of him! Graham is obviously still swollen from his surgery. So much so that he now has a double chin and has a hard time opening his eyes. He got a peek today though. His skin has proven to be very sensitive, hence the blotchiness on his cheeks from all the tape and tubes, but that doesn't seem to bother him that much.

Thursday, December 17, 2009

Oldie but a Goodie

I was going through all the pictures we've taken over the past 10 days and watched the video Bill took of me getting to hold Graham for the first time. I love it! I looked so nervous! It's a little out of order, but I just thought I would share one of the best moments of my life.
video

Day after surgery



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

Post-Op Report




Although much was accomplished, Graham's surgery did not produce the ideal results we were hoping for. The first problem that presented itself was a malrotation of the intestines. Quite simply, things were not where they were supposed to be and they were not attached to the abdominal wall. This happens in about 50% of omphaloceles. Dr. West literally had to rearrange Graham's intestines and internal organs to correct the malrotation.
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

Olivia

We've been meeting with lots of doctors, discussing Graham's surgery and preparing to send our little baby into surgery today. It's been pretty emotional. But I'm asking everyone to keep another family in their thoughts and prayers as they are preparing for much worse.
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.

Sneezy


video

We captured the perfect moment of Graham sneezing. It's these little things that just melt us.

Surgery Details


Anxiety levels are bumping up tonight in anticipation of Graham's surgery scheduled for tomorrow at noon. However, confidence levels are equally high about a positive outcome.
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

Update


More good news today! Graham got his IV taken out. Not only does that mean one less cord to worry about, but that means he is getting enough fluids (breast milk) to sustain himself! YEAH! Also, the reductions on the omphalocele are going really well. This morning the doctors could manipulate it more which means his liver is going back in to his abdomen a little more and more everyday. Dr. West should know Tuesday when the surgery will be. We've had such a good day! We have a good little routine going...Daddy takes Graham's temperature and changes his diaper (yes, even the dirty ones) before each feeding and then makes sure Mommy and Graham are all settled in for meal time. After Graham eats he's usually pretty alert, the perfect time for quality time with Dad. Bill will take a book in and hold Graham for an hour.

Saturday, December 12, 2009

Hangin' with Graham

So with the strict H1N1 policy in effect, Bill and I are the only ones allowed in the NICU to be with Graham. This is killing the grandparents. They are just itchin' to get their hands on their grandbaby. Sometimes, we'll take a video just before coming out to the waiting room (where Nana and Grandpa Ryder have been keeping perch since Tuesday). We love showing them the little things that just melt us, like his Benjamin Button hair and his little squeaks. We cannot wait for the day everyone else can share in the experience and enjoy Graham as much as we have. video

Feeding time

After 5 angst-filled days, Graham is breastfeeding! Men who are reading this, the following will probably be TMI (too much information) for you, just a warning. Anyway, the second I got out of recovery I was the squeaky wheel about getting Graham to breastfeed. The doctors were hesitant for two days because they wanted to see how his little digestive track worked. When Dr. West came in on Thursday to do the reduction on the omphalocele, Graham pooped all over her, I guess that was proof enough. She gave the go ahead to put him to breast and I was a happy camper for about 3 minutes and then realized that getting him to "get it" was going to be difficult after he had 2 1/2 days of bottles and formula. Also, my milk had barely come in in only my left breast, and the right was not producing. His feedings are at 8a,11,2p,5p,8a,11p and Graham and I were attempting every time to get him to latch and he wasn't having it. Finally, after spending probably a total of 2 hours with the NICU lactation consultant, today, WE GOT IT. Thank you nipple shields. My milk came in on the right side and he has had two successful feedings bottle and syringe free. I feel like a huge weight has been lifted and I am so glad I didn't give up. It truly is the most amazing thing. I will sleep a much better 4 hours tonight, that's for sure.


Thursday, December 10, 2009

While we wait...







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!


video

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.

Graham's Omphalocele


All of this talk about an omphalocele the past few months and now here it is. What you are looking at is mostly Graham's liver. There is much less intestine in it than anticipated, which is good news. The surgeon is also happy about the developement of some skin around the base (which you cannot see). The process before surgery is to gently pressure the omphalocele into the abdomen daily. It is then wrapped snuggly. This procedure is called reduction. This a little uncomfortable for Graham, but he is a real trooper. I think it is actually harder on Mommy! We are looking at surgery early next week.

Tuesday, December 8, 2009

In Our Arms




We weren't sure when we were going to be able to hold our baby, and to our surprise and delight, we were able to hold him today. So amazing. He is so beautiful and every face and sound he makes, melts us. We were also delighted to hear some encouraging news from the pediatric surgeon Dr. West. We had believed the intestines and liver were outside the abdomen and as it turns out it is just the liver. Docs are going to keep an eye on it for a couple days to see if it will naturally go back in a bit and then access as to when the surgery will be.
Sorry for the short post...It's after midnight and needless to say it's been a long day. We'll have another post with more pics tomorrow.


Delivery...

Here is delivery footage. Our friend Dr. Sally Hahn is on the right. Thanks Sally and Dr. Wilson for a job well done!!
video

Graham Ryder Law...


Hello everyone. Everything went very well. We have named him Graham Ryder Law. He weighed 6 lbs. 12 oz, and is now here at Riley with Grandpa Ryder and I. Katie is in recovery at the IU Med Center with both grandmas and is fine. I will be posting pictures shortly. Thanks again everyone for your thoughts, comments and prayers. We will have more information on the omphalocele after speaking to the NICU team. We hope everyone is having a wonderful day. We are!!

Saturday, December 5, 2009

What we know...

When I was 13 weeks pregnant, I went to the doctor for a routine ultrasound. That day kicked off a roller coaster ride of a pregnancy in which Bill and I learned so much about each other, the kindness of others and just how much worry and responsibility goes along with our new title as Parents.
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.
http://www.chw.org/display/PPF/DocID/34370/Nav/1/router.asp
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.