Spoke too soon!

It has been quite an eventful day for Claire.  It seems that it started around 10:30 AM when the doctors ordered Claire to have another blood transfusion.  Claire has had many apnea and rapid breathing spells and Bradycardia episodes overnight and this morning and they seemed to get worse around 3 PM (which is kinda abnormal for Claire these days).  The doctors checked Claire's hermaticrit and caffeine levels and found that her caffeine levels came back normal but her hermaticrit (red blood cells) count was low; 27.  They want to see this number somewhere between 35-40.  For the blood transfusion, they had to put an IV line through Clarie's foot to transfer to new blood.  They also had to give Claire a does of Lasix which will help with the excess fluid build up in her body.         

Around 6:30 PM tonight, the doctors decided to do an ultrasound on the liver and also an Echocardiogram on Claire's heart to see what was going on.  They found out that the liver was back up to about 6 cms which is the same size that it was at the last draining.  They also found that the pulmonary artery from the heart had narrowed some since the last time they checked it.  However, they said that was "normal" and believe that it is the liver cyst causing all of the apnea spells and bradys.    

As of now, they have not said what their plans are and whether or not they will have to drain it again.  Unfortunately, this all means that Claire has been moved back down to the ICN (Intensive Care Nursery) where she use to "live".  As Rebecca said tonight, we spoke to soon when we said we were having another "boring (uneventful)" day at Duke.  We will never say that again :) Claire is going to remain in her crib, but they have placed her on a heating blanket to keep her temperature up since it was dropping.  Claire is also on a catheter and they will be testing her urine to make sure there is no sign of infections.  She will be off of her feeds for at least 12 hours after her transfusion so hopefully Rebecca can start nursing starting again tomorrow.  

On the other hand, Trent was able to come to Duke for a surprised visit for Rebecca and Claire.  Rebecca had no idea he was coming, and when she turned around she saw him!!!  What a great surprise!!! He brought her a rose and surprised her with a hair re-do (cut and highlight) tomorrow morning!  He sure knows how to turn a stressful day into something sweet for Mommy :)  He also had something else up his sleeve... a secret spa day to get a massage, pedicure, and manicure which is on tap for next week.  Mommy said Daddy can keep the surprises coming!!!!!!!  Rebecca also had some visitors from back home today.  It is always nice to see some familiar faces around Duke.  

Rebecca and Treat really appreciate all of the prayers and sweet thoughts that truly get them through the day. It is hard to see the good somethings when so many stressful things are happening all around you.  Claire is such a fighter and sure does know how to let the doctors know that something is just not "right" and we are thankful that she is able to do so.  If it wasn't for Claire having all of these episodes, we would not know what was happening inside her tiny tummy!  Please keep everyone in your prayers as they try to figure out what to do next with little miss Claire bear :)   

Love,

Aunt Mimi 

  

10:30 pm update

When I called to check on Claire around 5:30 pm today, the nurse said she had just experienced an episode of apneas and bradys again.  She sounded a little concerned and apologized for the "bad news".  So I went into worry-mode and we went on back to the hospital.  We go back every night anyways, so that's nothing new.  I was just a little more anxious tonight than I have been in about a week! 

We talked to Claire's doctor when we arrived and they had already drawn labs.  She said her caffiene level was fine but her hematocrit was borderline low.  So they plan to watch her throughout the night to see how she does.  If she seems to have more As and Bs, they will probably give her another blood transfusion.  The nurse that she has tonight is awesome and is watching her closely to see if the As and Bs could be caused by her feeds too.  I will definitely be checking up on her tonight (which is also nothing new - surprise, surprise to the ones who know me!).

A cute surprise was that Claire had on new toboggan tonight!  SO cute!  I sure wish I could knit or crochet b/c I would be making her so many hats.  I never thought I would be a hat person, but these knitted/crocheted toboggans are just too cute.  Especially the preemie size ones that fit her perfectly.  Check out the one tonight.  I kept calling her my little snow bunny.  We also read her a book from Aunt Mimi/Manda and Colby about farm animals.  She loved it!  Oh, and she also weighed 4 lbs 4 ounces.  She's growing like a weed (a USDA certified organic one at that). 

So we will be praying for a good night tonight! 

Goodnight!
The Scott Family

PS - I got a little obsessed with taking pictures tonight of her new hat.......but she was just too cute!

Today has been yet another good day for Claire!  When we got there this morning, she was all bundled up and didn't even squirm when I started loving on her.  She was way too comfortable to be woken up.  We practiced feedings today and Claire did awesome.  The lactation consultant said she could be on a training video!  She ended up eating 10 mLs and then got the rest from the syringe. 




"Gosh Mom, please stop taking pictures of me!!!"


There is not much to report really except that she is growing, sleeping, eating and being loved.  We love the "boring days" when not much happens except weight gain and fun things. 

We did want to mention as it gets closer to flu and cold season, please be aware if you feel sick or have been around anyone who has been sick if you plan to come visit.  Claire is now in an open crib and doesn't have the protection from the isolette walls and doors. Please get your flu and t-dap shots!  Protect yourself and Claire (and all the other babies in the unit). 

Also, please check out the photo of the gift below.  It was left on Anita's back door a few weeks ago without a card!  Let us know if you are the gracious giver of this gift.  It had Halloween items for Claire, socks, and clothes in it.  We appreciate it and want to be able to thank whoever gave it to Claire!

Thanks for the prayers!!!!!!!
Love,
The Scott Family

Four

Today Claire is 4 weeks old!!  And as of tonight, she weighs 4 pounds 1 1/2 ounces!  Four is the magic number today!  She had another good day today in the TCN.  We are working on feeding and becoming stronger and bigger. 

Please continue to keep Claire in your prayers.  Each and every one of them is much appreciated and needed!!!
Love,
The Scott Family

A step up and a step down

When I got to the hospital this morning, Claire had stepped up to a big girl crib!  They actually wanted to put her in a bassinet but they didn't have any available.  So she was placed in a crib.  Claire was then moved to the Transitional Care Nursery (TCN) - the step down nursery from ICN.  They move babies here when all they need to do is eat, sleep, and grow.  That is Claire's main goal now.

Last night at her weigh in, she was 3 lbs 14 oz (the 3 lbs 16 oz from the previous post was a typo).  Claire seems to be doing really well with everything!!  Praise God from whom all blessings flow!

We are continuing to pray that the cysts have or will dissolve on their own.  She has not shown any signs of being affected by it as of today. 

Please continue to pray for Claire.  She appreciates it (and so does her family!!!).

Love,
The Scott Family



Claire only could wear this for just a few minutes for all of you Duke fans......





Thank you Mrs. Paige for my hat!  Everyone loves it and says how cute I am in it!!!





cutest profile EVER!



Claire's new crib



sleeping beauty



A quick update

I know Rebecca didn't have time to post last night. I wanted to add something quick to let everyone know Claire is doing good!  Rebecca spent all day with Claire yesterday and at the end of the day she met with the lactation specialist. Claire is doing great! She is growing, sleeping and eating like the doctors want her to! Rebecca is back at the hospital early this morning to try and make it for the doctors rounds and to meet with the lactation specialist again.

We all feel so blessed that Claire is doing well. We will celebrate every moment like this! We all know at some point Claire will be having surgery for her heart. We continue to pray that God heals the liver cyst. The cyst is so rare that the doctors and surgeons are very cautious about how to proceed.

Rebecca and Trent are grateful for all your love and support!! They are great parents!!
We will post again soon with more details!
Love,
Aunt Julie

Happy Halloween! Just treats, no tricks! :)

Rebecca made it back to Duke tonight! Rebecca looked like a kid on Christmas as the nurse was getting Claire all swaddled up to ready to be held. Claire was so happy to see her mommy! She opened her eyes, smiled and seemed so relaxed. Claire was glad Mom and Dad got some rest this weekend. She can't wait to see her daddy!

The best part of the night (other than holding Claire) was seeing Claire in her ADORABLE Halloween costume! She was the sweetest M&M on the whole unit!! Mommy read her "Clifford the Big Red Dog's First Halloween!" Claire was loving it the whole time!

Claire weighs 3 pounds 16 oz! She had one Brady episode before we left. (ugh!) But we left her resting well in her isolette. Snuggled like a bug in a rug! :)

We love you Claire!
Love,
Aunt Julie

I'm an M&M!!

Mommy holding her sweet M&M

Claire got a yummy candy bucket!

AWWW!! 

Granny Scott loves Claire

Mommy reading to Claire

Aunt Julie loving her some Claire Cuddle Time!!