The Light at the End of the Tunnel

This is my favorite picture

Every day has been an adventure with our little girl.  They began bottle feedings on Thursday at 5ml.  By Friday, they started her at 10ml.  Once it was established that she loves her feedings she began the process of increasing her intake from 15ml + 3ml every six hours.  This has lasted throughout the weekend and into this week.

Today is Monday, July 11th 2011. Georgia and Mom are sitting in the NICU chair right next to me, Georgia is wide awake with the hiccups and wanting to see her parents.  Georgia is eating 41ml of food with the goal of 56ml being reached tomorrow afternoon.  Today they will be removing every other stitch from her belly with the rest coming out by Tuesday. 

Our hope is to be home around Thursday or Friday, with the possibility of coming home more quickly.  I cannot wait to get settled at home with our 'normal' life.  Don't get me wrong, Kaiser Sunset and the LA Ronald McDonald House have been wonderful, and it has been such a blessing to have so few issues to worry about in the day.  It's the little things that you don't think of that are more daunting when you're having to deal with them.  Where do we do laundry?  Where do we sleep?  Where do we eat?  All of these questions were releaved the second we checked in at the RM house.  The cafeteria food is actually decent and there is a VONS so close to the RM House that we've been able to have at least 2 meals a day there. 

We both want to thank everyone for their prayers and support during this time.  At a time when it would be easy for Cricket and I to feel alone in our trials, we have been surrounded by your love from afar.  I will not update this blog until we have our little girl home, since there is nothing left but a few stiches, a few more feedings, and a mountain of discharge paperwork.

Today is a Good Day

Tuesday was a special day for the Butler family.  Georgia's surgery was originally scheduled for 2:30pm, but was quickly moved up in the day and we found ourselves walking her to surgery around 10am.  Roughly 2 hours later Dr. Roman Sydorak came in with smile and thumbs up!  Her closure went well and he was even able to give her a belly button.  Among the good news was the revelation that she will not require an additional surgery when she's a toddler!  Praise God!  It was hard enough having my daughter, whom I've never held in my arms, go through so many surgeries - I could not go through it when she is a toddler.

The reset of the day our little girl was on the good stuff and slept most of the day, even when she opened her eyes it was clear she was under heavy sedation.  Cricket and I have developed a routine that makes the days go quickly, and having my work laptop has made it to where I can claim at least a few hours of work each day (such a blessing!).

This morning is Wednesday and we just received even more good news.  The pediatrician this morning is placing the order to remove the breathing machine and cathetor from Georgia, which we were told wouldn't happen for at least 3 days after surgery.  Our little girl is going to be such a fighter, we are already so proud of her!! 

The next step will be weaning the pain medication, monitoring bowel movements, and starting the feeding.  She has gained weight since birth and now weighs 6lb 12.5oz, so she's gained nearly a half a pound in the last week without even being fed!

Update for Sunday July 3rd

It was our intention to post updates directly to this 'blog', but FB and text messages became much faster and therefore the preferred method of getting the word out.  However, I believe chronicling these emotions will be something that Georgia can look back on to know how much her parents love her.

Georgia was born Thursday at 1:33am.  By Friday at 7:15am we were walking her down to the surgery room on the 1st floor of Kaiser Sunset.  I cannot describe the emotion of watching your daughter, whom since birth needed no medications or breathing tubes, be wheeled down a hallway to face a major surgery.

Dr. Roman Sydorak, our pediatric surgeon, is a blessing to the Kaiser system.  Surgeons know not to sugar coat much because information sharing on their end needs to be quick and concise.  He quickly walked into our post-mortem room at 8:30am and said "she did great!  the silo is installed and she's on her way back to the NICU".  The easiest way to understand a silo is to imagine a plastic bag with a hole in the bottom.  To empty the contents easily you can pull the handles upward and everything should slide out.  This is the physics of the Georgia's silo.

Friday we were allowed to stay another night at Kaiser, to remain close to our little girl.  Saturday became a little more stressful.  Cricket was discharged at 10am and check-in time at the Los Angeles Ronald McDonald House wasn't until 2pm.  We took a little trip to Target to get supplies, checked in at RM House, and ate a quick lunch.  By the end of the day, Cricket's feet-o-meters said that we were done being busy.  Any parent that has to leave their child at a hospital overnight will understand, it is the most empty feeling you can imagine, and has rejuvenated my desire to get her home ASAP.

That being said, the RM in Hollywood is an amazing facility.  It's far nicer than most hotels, and has the warmth you'd expect.  There are storage places for our food, a kitchen and dining room (built to resemble McD's of course), and secured parking while we stay.  Our room has a queen bed, it's own bathroom and shower, and all the amenities you'd need at home.  I can say with certainty that there's no greater feeling than knowing your belongings are secured and not having to live out of the back of your car.

Today is Sunday, I'm sitting in the NICU with my wife and child, just relaxing while the time flies by.  Cricket is healing very well, and has amazed me with how strong she was during the delivery and after when her child was taken to NICU.  It did help that Georgia is AMAZING and strong and Cricket was able to hold her before they took her to the NICU.  We are scheduled to have the primary closure of the O on Tuesday @ 2:30pm.  Please pray that Georgia is not in too much pain and can eat soon after having the final surgery.  I've attached another picture of our little girl.  The white wrap doesn't actually have any organs in it, it's simply the silo (which is empty now) and a lot of gauze to keep things clean.  Her stomach is as flat as a normal baby, it just needs to be buttoned up!

Welcome to the world, Georgia Mae

Georgia Mae Butler

God's plan was brought to fruition at 1:33am on June 30th, 2011.  Cricket's water was manually broken at 11:45am, which began immediate contractions.  By 12:15am, she went from 4cm to 10cm, and we actually had to "labor down" so the epidural could wear off enough for her to feel the final push.

Georgia was born naturally (with meds), weighing 6 lbs and 5 oz.  Let me assure everyone that the best sound I've ever heard in my entire life was the moment she cried in the doctors arms.  She is breathing on her own, which was one major concern of all of our specialists.  She was stable and admitted to the NICU by 2:30am Thursday morning. 

The birth could not have been more textbook perfect, and given Georgia's O, we are blessed to have the best case scenario so far.  The surgeons have even waited the morning to evaluate her, both to give her time to get fluids, to adapt to life outside the womb, and because immediate surgery was not necessary.  We both are aware that we are on the path to quite possibly a long road for Georgia, but God willing, we will have her home sometime soon.  More posts to come as emotions are processed.  Mom and baby are both exhausted and resting.  Cricket is doing well, and was absolutely amazing last night.  There is a reason God designed women to carry the children, because I can definitively say that there is no way a man could have accomplished what my wife did this morning.

God Bless,

The Butler Family

His Plan, Our New Means

This is Brandon.  I will be taking over the 'blogging' to update everyone on the status of Georgia and Cricket as they carry out God's plan for this pregnancy.

June 23rd - Our appointment with Dr. Fassett revealed that Cricket has an elevated blood pressure (approximately 140/90) which is the threshold for high blood pressure.  Dr. Fassett ordered another urine test to check for Preeclampsia and any other abnormalities. At this point he tells us that we need to be prepared to leave for Los Angeles (Kaiser in Hollywood) at a moments notice.  Suddenly our focus was on all of the last minute items needing to be done and purchased.

June 24th - The next day I was running around like crazy at work getting ready to be gone earlier than planned, and Cricket having keys made, packing, and resting.  At 2pm we get the call to head to the doctors office to view the results of the urine test, to have a blood pressure test, and likely leave for Kaiser Sunset.  Cricket does have protein in her urine, which with the high blood pressure, means she does have Preeclampsia.  Lying in a wing of the hospital, all sings at this point are that we're on our way down south.

The first blood pressure test comes in at 132/88 which is high, the second (on her side) went down to prehypertension levels at 128/74.  Lynne, our local care coordinator, calls Dr. Fassett and is instructed to send us for another pressure test Saturday morning, and another urine test Sunday.  With each step, we're told to be ready to go.

June 25th - By this morning, we're both ready to be in LA.  My work has been great about allowing me to do some work remotely via laptop and aircard, the car is completely loaded, and we're ready for anything.

Of course, this means the blood pressure test is again high, but again we're not going to LA.  Our care team is amazing and keeping a close eye on the situation at hand.  Given Georgia's complications, extra care and consideration is being taken with the Preeclampsia.  The only cure for Preeclampsia is giving birth to Georgia.  We're nearly 37 weeks pregnant, Georgia is over 6 lbs, and we're as spiritually ready as we can get for the next month.

For now we rest, make sure we have everything ready to go, and prepare ourselves for a moments notice trip to being admitted full time.  Our back up plan is San Juaquin on 24th Street, but Lord willing we will be delivered where the surgeons are. 

Please keep Cricket and Georgia in your prayers, that they might understand God's plan in a way that brings them closer to His glory.  As for me, I can't wait to meet my daughter and hold my two favorite women in our home.

May God bless us,
Brandon

Catching up a bit...

After going back and forth on whether we even wanted to start a blog, we decided that this would be the best way to keep everyone up to date with what is going on with little Georgia Mae.
Since there are still quiet a few people who don’t know what has been going on the last couple of months, I’ll recap a little…

At the end of February we went in to have our 20week ultrasound, we found out that we were going to be having a girl and we were SO excited! However our excitement was interrupted the next day by a call from our doctor… She told me that they had found a defect know as an omphalocele. My heart sank and everything the doctor said after that just sounded like the teacher from the Peanuts cartoons. We got online to research just what an omphalocele was and what it would mean for our baby.

We found out that an omphalocele is a type of abdominal wall defect in which some of the organs develop outside of the stomach but inside a “sac” that is attached to the abdomen. We also read that omphalocele cases are often associated with other serious genetic defects and that there was about a 50/50 chance that our baby could have something even more serious wrong with her… we were devastated to say the least.

Our Doctor scheduled an appointment with a high risk specialist who did more ultrasounds and confirmed what the first doctor had seen he also did an amniocentesis that would rule out any other genetic defects. The procedure was just as horrible as I’d imagined, being terrified of needles and all, but it was nothing compared to the week we spent waiting on the results… and praise God, they all came back normal, we had cleared the first “hurdle”!

At our next appointment the specialist went over the results with us and did more ultrasounds, it was an encouraging visit, Georgia was growing normally and we were so relieved to be in the 50% of “good cases”. However we still had to pass one more major test, the doctor explained to us that a lot of times babies with omphaloceles can have heart defects as well. So we would need to go down to L.A. to see another specialist and an echo cardiologist who would check on Georgia’s heart.

Our L.A. appointment went wonderfully! Both doctors said that the babies heart looked good…another hurdle cleared!
We were also able to meet with the pediatric surgeons, and take tours of the labor/delivery and NICU; we were very impressed with all the staff and the hospital…
They also scheduled our induction for July 11^th!
What a wonderful and loving God we serve, to know that when all seems out of control, He is so strong and faithful to meet every need and bring such peace J

I know that this was a long post, but now that everyone is caught up, we will try to keep our posts shorter and up to date :)