3 Months Old

Claire was 3 months old yesterday!  She is so alert and playful and eating well.  For her 3 month birthday, she got to meet one of her great grandmothers for the first time, be held by her great grandmother for the first time, and also be held by her Big Daddy (my dad) for the first time.  What a day!  :)

Claire is being watched by the cardiologists to make sure that she is ready for the liver surgery on Tuesday.  We also met with the liver surgeon yesterday and she explained the procedure.  Basically she cannot find in any research that she  has done any reported cases of the combination of tetralogy of fallot and mesenchymal hamartomas.  She also said there were probably only 20 cases ever reported of the liver cyst/hamartomas being found in a prenatal ultrasound like Claire's was.  So this is pretty rare to say the least.  They will have to intubate her, put her to sleep, etc. but the general anesthesiologist and cardiac anesthesiologist will both be there I think.

The surgeon will cut about a 1.5-2" cut right below Claire's right rib cage and then cut about a golf ball size place out of the big cyst.  They will also go ahead and drain the fluid out.  If the medium cyst is close by, she may cut a hole in it too.  If not, she won't.  She said she will not be going in and looking around.  They don't want Claire asleep more than she has to be. 

We are very confident in the liver surgeon doing the procedure.  I have learned a lot about surgeons and their personalities in the past 6 months.  But this surgeon takes the time to come to Claire's bedside and talk to us. She is very nice and also very qualified and smart (we have read all about her on Duke's website!).  Most surgeons do not come by and talk to the family like she has.  At first, we didn't see her much and it was frustrating b/c we didn't know what was going on.  But since the doctors have understood something has to be done, she has been on top of it.  I can only imagine the life of a surgeon!  So much responsibility and work to do.  Definitely would not be something I could handle!

So please continue to pray!  I believe the other Claire had a shunt procedure today, so we have been praying for her.  I haven't seen the outcome yet. 

Love,

The Scott Family

Middle of the road

Wow - today was a busy but good day.  Claire's weight was down last night of course due to the draining. She weighed 7 lbs 2 oz.  She is now on all breast milk feeds, so we will see how that goes.  At rounds this morning, her attending basically said there were three options that they would choose from at the big meeting today:

1.  The severe choice - This would be to resect/remove all of the liver cysts now.  This would include removing her entire right lobe (which is all the big and medium cyst) and then cutting out the other smaller cysts.  This is a 5 hour surgery and very, very risky at this point.

2.  The middle of the road choice - To marsupialize the biggest cyst now.  This would be about a 1 hour surgery with an incision (not laproscopic).  They would basically cut a hole in the big cyst and then let it drain into her abdomen to be absorbed by her bloodstream and then eliminated through her urine.   This would give them the tissue sample they have been wanting and needing to confirm what these cysts really are.  Then come back later and remove all cysts.

3.  The last choice - To sclerose the liver cysts.  This would be draining the big cyst and going in and injecting some sort of material that would kill the liver cyst cells and basically fuse them together to make the big cyst a big scar.  The upside to this would be no real surgery.  The downside to this is that she would either have to live with this huge scar tissue in there forever, or it would be a very difficult surgery to remove the scar tissue later.  Plus they would not get any tissue to test to be 100% sure what these cysts are. 

So while we waited most of the day for the decision, we had fun!  Claire was making up for lost time and eating like a pig today.  I think she could have eaten us out of house and home if we were home!  Having more space in her belly makes it so much easier to eat.  She is consistently eating about 120 mLs each feeding about every 3 hours.  That's about 4 ounces. 

We also went over and visited Eliza at her crib!  Eliza had on this totally cute flower head band, so Claire had to put on a bow head band and we HAD to get some pictures!!!  What a fun adventure!  Granny Mary went to Accidental Artist this weekend and bought some tiles and paint.  So I painted Claire's foot with pink and brown paint and we made some foot prints on the tiles. 

The new baby Claire was also born today and is so beautiful!  We cannot wait to meet her.  Our Claire will be back in ICN next week when she has the liver surgery next week so we will have to stop by the new Claire's room and meet her!

So at 4 pm, the neonatologists came in and told us the plan.  Thank goodness everyone was able to attend the meeting (except us) - but all the doctors were there.  They all agreed that the middle of the road choice was best.  That Claire was just too small to undergo the 5 hour resection surgery at this point.  And the cardiologists don't want to do her heart surgery any earlier than they have to and her heart is in good condition.  So Tuesday next week, they are planning to do the marsupialization of the big cyst.  This will entail putting her to sleep, intubating her, cutting her open, and sewing her back up.  She will go back to the ICN for a few days until she's extubated and back to eating like she should. 

Then they HOPE she can go home for several months until maybe April - June.  Then she would come back for her heart repair, and go home again.  Then come back at some point and resect all of the liver cysts.  This is the PLAN.  We all know how these plans work.  We have determined the word "PLAN" is just another one of those four letter words.  So, we will see how it all shakes out. 

The liver surgeon is supposed to come by tomorrow and talk with us about the procedure and everything.  The neonatologist did say that a person only needs 10% function of their liver to live, so that's a good bit of information to know since they will probably eventually cut out more than half of Claire's liver. 

So, thank you for all of the prayers for our Claire, the new Claire, Eliza, the nurses and doctors, our families, and every one else.  Please be prepared to pull out all of the prayer stops for Claire's surgery on Tuesday (it will be Tuesday unless an emergency surgery comes up). 

We will keep you updated!!!  Enjoy the pictures!

Love,

The Scott Family

What a day!

Well, when I got up this morning at 5:30 am to get ready to head to see Claire, I was not expecting the kind of day we had.  I had noticed and pointed out yesterday that since last week, I had noticed that some of Claire's cyst symptoms were returning.  These included lots of grunting and straining, acting uncomfortable, not eating as much, and today I noticed swelling in her lower body. 

The nurse, resident and I had talked about it yesterday.  When they came in for rounds today, we had a new attending that we had only had once during a weekend, so I didn't know much about him.  I didn't even mention the words "ultrasound" or "drain" and he basically said they were going to do both today and not to wait.  I was like, wow, usually I spend weeks begging for these things!  Now I am not prepared! 

So I figured that the radiologists would refuse to do the draining since they had basically said that would be what they would do if asked again.  But they agreed to do it again.  I didn't think the cyst was as large as it was at the last draining just by looking at Claire's belly.  It was distended out to the sides a lot, but not as much out where her belly button is.   They ended up not really sedating Claire this time which was not the best idea b/c they had to hold her still and she got mad. 

But they drained about 165 mLs off this time (it's been less than 2 weeks since the last draining when they got 345 mLs).  So about 5 ounces this time. She acted like she felt a little better, but was kind of groggy from some Tylenol they gave her.  But she ate well afterwards.  So we will see how it goes.

The radiologists said by draining they cyst, they are making it more complex each time.  Basically it started out as one huge fluid pocket.  Each time they stick a needle in there, it makes "debris" or disturbs it.  This can cause the one big pocket to form smaller pockets within the cyst and therefore not allow them to drain out all of the fluid. 

So, we are just waiting to see who shows up for the meeting tomorrow and what they all think.  I have been warned not to expect a real plan as of tomorrow afternoon.  When you have than many different doctors all giving their opinion, I don't imagine it will be a clear cut meeting.  Supposedly, there will be doctors from Claire's neonatologist team, cardiologists, cards surgery, cards anesthesiology, liver surgery/general surgery, and radiology.  We are hoping they will allow one of Claire's primary nurses to go to the meeting and take notes for us!  So needless to say, I am very anxious. 

Thank you for all of the prayers today for Claire.  Please also add to your prayer list Claire's BFF Eliza who also had a rough day.  And also keep some new friends of ours in your prayers as they deliver their daughter Clarie tomorrow at Duke as she will be in the ICN as well.  Keep your fingers crossed that whatever is supposed to happen at this meeting tomorrow happens. 

Love,

The Scott Family

Tuesday - January 4th

Just a quick update....
 I just got a text from Rebecca saying that the doctors decided today that they are going to drain Claire's cyst today. Rebecca and Trent are asking for your prayers as Claire undergoes this procedure again.

My prayer for Claire:
Dear Gracious and Powerful God,
I pray you comfort, protect, and heal Claire today, and always. She is your wonderful and precious creation and we love her so much! Thank you for such a precious gift! Pelase be with the doctors and nurses today as they prepare for the procedure to drain Claire's cyst again. Please be with Rebecca and Trent and fill them with your love and strength! We all need you...we are forever grateful!
Amen

More will be posted once Rebecca can get home to a computer.
Love,
Aunt Julie

Little pig, little pig let me in!

Just a quick post - our daughter now weighs 7 lbs 3 oz!  Yay for our little piglet!  We hope she continues to grow, grow, grow!  The majority of her feeds now are breast milk so we will see how that goes.  She LOVES her food though!  She had a good weekend visiting with Grandma Neat Neat and Aunt Doe, and the Uncle James and Aunt Julie came tonight and held Claire. 

We start with a new resident and a new attending tomorrow so I am very anxious.  Neither of which have seen Claire before.  But we know Dr. Rachel will be looking out for Claire from afar.  We are praying that the meeting they have planned for this Wednesday is successful.  They are waiting to hear back from the liver surgeon to see if she can come to the meeting.  I sure hope so!!!  Keep your fingers crossed.  This will be a very important meeting to discuss Claire's surgery plans with the cardiologists, cardiac surgeon, cardiac anesthesiologist, the neonatologists, and hopefully the liver surgeon.   We really need a solid plan in place soon. 

My day tomorrow will be spent playing with Claire!  I can't wait!  She is so alert and active now. 

Love,

The Scott Family

Reflections from a dirt road

Two posts in one day!  Crazy, right?!?  Well, not really crazy.  Just trying to keep my mind continuously occupied and busy while away from Claire and Duke.  So as I took a nice walk on our dirt road through the farm today, I had time to really reflect on some things.  I realized that while sitting in the hospital day in and day out, sometimes I just don't think about things like I used to.  Meaning two things - I don't get the daily walk in where I used to give myself time to just clear my mind and think about things.  The other meaning being that I see things in a totally new light. 

My sister and I were talking the other day about God's plan for us.  I can't remember how we got started talking about it, but I think I remember talking about when we found out Claire had Tetralogy of Fallot, people kept saying "It's not either of your faults.  It just happens."  Or things like "God has a plan and he will not give you more than you can handle.  He chose your family do deal with something like this because He knows Claire will be well taken care of and loved."

Sometimes both of those statements make sense and sometimes they don't.  But through all of this, I have learned that I cannot understand everything and that everything does not have a clear answer (which is hard for the accountant in me!).  Julie mentioned how God places specific people in our lives at certain times and we don't even realize it or know why.  She gave me the example of one of Claire's nurses, Susannah.  Susannah and I went to Meredith College together (we won't mention how long ago that was).  I believe her sister was 1-2 years older than me and Susannah was 1-2 years younger than me.  So we weren't in classes together or anything, but I do think we may have lived on the same hall one year  (I could be wrong). 

Anyways, I knew Susannah and she was so nice all the time.  Very involved in MC and all the things that went on there.  Little did I know that several years later, on the day I delivered Claire, Trent would be wheeling me into the ICN at Duke and one of the first faces I saw was Susannah's.  I wasn't sure if she even recognized me from so long ago - plus the toll of a week long labor was evident on my face and body.  But she did and she was already signed up as one of Claire's primary nurses.  God knew almost 12 years ago that Susannah would be taking care of Claire one day.  How amazing is that?!?

So after thinking about this for a long time, I have really started trying to reflect on all of the ways God has made our path for us over the years without us even knowing it.  So here are just a FEW of the people and things that God had put in our plan years ago before we even knew what we'd be going through now (know that this is not everyone!!!  Just a few out of many!!):


- Our other favorite nurse, Marie, was Claire's nurse on day 2.  My mom was back with me at the time and saw Marie's name badge and her last name rang a bell.  My mom asked her if she was related to any one in New Bern where we are from and she was!  Long story short, my mom had Marie's great nephew (or nephew - I can't remember) in her preschool class a few years ago.  He was one of her favorite students!  So we connected on that note.  Also, this great nephew's mom was a principal at a local elementary school in our county and Trent had worked with her on several occasions teaching the kids at the school about organic farming and farming in general. 

- Before we even made it to Duke, one of the doctors where I work came over, sat down in my office and basically said "This is serious and you need to go out of state to either Mayo Clinic or Vanderbuilt."  Us, not being the travelling kind, thought "oh no!"  But he went back and made phone calls and called me back and said he had found out the best pediatric cardiothoracic surgeon was at Duke!  So we needed to go there!  That put us in the right direction. 

- Kellie Z-M also helped us out in so many ways.  Kellie and I grew up in the same small town and were the same age.  I went to public school through 4th grade so I am sure Kellie and I saw each other at school.  I remember we rode the same school bus at one point (I think she was either the first to be let of each day or the last to be picked up - but I could be totally wrong!).   Anyways, we never really hung out together but I think we had some of the same friends and we knew who each other was.  Kellie's son was born a little over 2 years ago with CDH and I followed his journey on his blog at Duke and beyond.  So I knew what they had been through.  So once we figured out we wanted to go to Duke, I emailed Kellie and she set us up with a coordinator at Duke to arrange all of our appointments and meetings.  She also told me names of doctors to insist on getting because they were awesome - and she was right!  Just having that connection made it so much easier for us to make the transition to Duke. 

- Our families have been lifesavers like always.  Of course God put us in the right families!  But both of our families have reached out and helped us so much.  They have sacrificed time, money, work, sleep, home, and alone time.  Our families go way back to when Trent's mom was Julie's kindergarten teacher.  Trent's mom also worked at that same school when my Granny Rose (whom Claire is named after) was the secretary there.  She's often told me how Granny Rose was so kind to her when she started out as a new assistant.  And God definitely put Trent in my life early enough to keep me grounded and secure.  At ages 14 and 15 we met through mutual best friends at the time.  Who knew one of those awkward cotillion dances would be where I met the love of my life!?

- Leslie G. has been a friend of mine since high school.  One of my dearest friends even though we now live several states away from each other.  Who knew that she would show up in my hospital room at Duke a day or two after I arrived.  She will never know how much that visit meant to me and Trent.  It was unfortunate circumstances that brought her to Duke to visit a family member.  But through a friend of both of ours, she heard we were at Duke and sought us out.  She stopped by several times that week I was in labor and offered sweet prayers with us.  She was even there visiting only a few hours before Claire was born and we didn't even know it!  The peace she brought to us was priceless. 

- Our new church, Pollocksville Presbyterian Church, has also played a huge role in our lives from several years ago.  I think the first time I ever went to that church was for a friend's funeral 10 years ago.  Little did we know that we would end up joining the church that we now love so much.  It's funny - we actually joined the church the week before we became pregnant.  It's like God had to get that part of our puzzle in place before we could start our family.  We had grown up in our own separate churches, but we needed something that was different and where we could grow as ourselves.  Who knew that little "Chasing Daylight" steak cookout postcard would be our invitation to where we would eventually call our church home. 

- And now we have met so many new and different people through our blog, through churches, and through Duke ICN/TCN that we will never forget.  Each one of them has played an integral part in us being able to be strong for Claire.  It's been comforting to connect with other parents and families going through similar trials and rewards that we go through day to day.  Although you don't want anyone to have to go through something scary like this, it's nice to know you are not alone. 

So it's easy to see that God does have a plan for everyone and if we just stop and think about it, we can start to see His plan take shape in our lives.  These are only a few of the things I can think about where God reveals His plan in certain situations.  I know there are many more out there that I have yet to uncover.  A lot of the time we get caught up in the moment we are living in.  It's especially easy to do now when we basically live day to day without a plan.  Well, without our OWN plan that is.......

Love,

The Scott Family

Happy New Year 2011

 

Happy New Year!  Hope every one has a great year!  Claire is celebrating New Years in style
(as seen above thanks to nurse Marie) with her Grandma Neat-Neat and her Great Aunt Doe while I am at home trying to get over a cold and Trent is hunting on the last day of deer season. 

2010 was an interesting year for all of us and we are hoping 2011 will bring health, happiness, home, healing, and many more things for our family. 

We are sad that tomorrow will be the last day for our favorite doctor.  We simply don't know what we are going to do without her!!!  She has been such an advocate for Claire and we are so thankful that she was able to touch Claire's life.  We will definitely miss her and we hope to keep in touch with her always.  She is planning to practice medicine in pediatric cardiology so maybe Claire will see her again!  We love Dr. Rachel!!!!

On another note, you have often heard us on the blog mention Claire's BFF from Duke - Eliza.  She has come such a long way and Claire and Eliza have been friends since early on.  Eliza is about a month older than Claire but their due dates were only 5 days apart.  When we heard Claire was back in TCN, my first question was "where is her bed?"  When the nurse said she was in the little room off to the side we were so excited because that's where Eliza was!  So Claire and Eliza are back together!  Her other friend Remi has already made a break and gone home.  We are so excited for them, but Claire misses seeing Remi. 

So most of you know how I am about pictures.  And you never know when the nurses will move the babies around.  So while I knew Claire and Eliza were close together, we decided to take a picture of them together.  Eliza couldn't be unhooked from her wires, but Claire could for a few minutes.  Claire's nurse that day was awesome for letting us do that.  So as weird as it was to walk with Claire across the room without being attached to anything, it was a lot of fun!  Even if it was only for a few short minutes!  Below is the picture of the BFFs! 

So here's looking towards a bright future for everyone this year!  May your year be as bright as our little girl's eyes. 

Love,

The Scott Family