Sunday, October 31, 2010

A fun weekend with Aunt Julie and Aunt Amanda

We had a BLAST with you last night! You looked so adorable in your pink and yellow outfit! You got to move back across the hall to you room with one of your girlfriends who has been there with you when we can't. Y'all will be best of friends and share so many happy memories together.

Me and your Aunt Amanda got to hold you last night. Of course you were PERFECT for me and SQUIRMY for Aunt Amanda! hahaha The funniest part about it was that your mom called, pretending to check on you...but we both know she was calling to check on her crazy sisters who were there with you! ;)

Your mom and dad love you so much! The nurse told us tonight that you are one of the most loved babies on the unit! We know! You have an awesome family and circle friends that love you and pray for you all the time!

You are gaining weight and getting stronger! Keep it up! We are headed to church now and will be praying for you. We miss you already! Your Aunt Amanda will be back to see you this morning and your mommie will be back this afternoon! We can't wait to see you all dressed up in your Halloween costume!! AWWW!

Love you!
Sweet Claire Bear!
Aunt Julie

Saturday, October 30, 2010

Claire Rose Scott Benefit Update

Wondering how you can help out even if you live miles and miles away or you are not able to purchase a yummy Ham dinner??  Rhems fire department is allowing donations to be sent in for Claire to their address.  If you are interested in donating, in the memo line of the check PLEASE put "Claire Scott Benefit", otherwise the fire department will assume that it is a donation to them.

The address is:
Rhems Volunteer Fire Department
C/O Claire Ross Scott Benefit
5860 US Hwy 17 S
New Bern, NC 28562

Also, if you plan on purchasing a dinner, you need to buy a ticket or pre-order ahead of time.  They might not have enough for walk ups.  You can purchase a ticket from any volunteer firefighter from Rhems or Pollocksville fire departments or by calling Kay Dentico at 252-671-6684.

Thank you all for your love and support!
Rebecca, Trent, and Claire all love you and are very grateful for everything y'all are doing!

Friday, October 29, 2010

T-G-I-F; and Claire's first blog (via Aunt Amanda)!

Whew; T-G-I-F!!!!

Hi everyone!  

Mommy is at home, at last, I know she will get some deserved down time.  She has worked so hard, now it is her time to take a break from driving a lot.  She is helping Daddy at the Big Game Hunt this weekend back home. I miss her a lot but I know she is calling the nurse to check on me often and will be back very soon!  I can’t wait for her to hold me again. 

My nurse this morning was Maria.  She was telling Granny that I had some mild, shallow destats this morning but that everything was fine.  They have increased my feeds to 21 mL per hour…yummy umm!  I still weight about 3 lbs 10 oz, but with all this milk I hope to grow big and strong.

Dr. Bishop came down from Cardiology this morning to check my heart.  He said that it sounded good and that everything seemed to be okay today! Whew, good news!  He was explaining to Granny that the reason that I am destating (where the blood saturation drops below 80 when it should be close to 95-100) is because the hole in between my two ventricles.  The oxygenated blood from my left ventricle and the deoxygenated blood from my right ventricle mix between the two ventricles lowering the oxygen levels throughout my body.  That will be fixed later on when I have my heart surgery to fix the teratology of fallot. 

Nurse Gina came by to visit me today.  She brought me my Halloween costume.  Thank you so much Gina.  I can’t wait to show it off to everyone on Sunday!!  (Check back then for pictures)

Tammy Greenwood and Kristen Weaver came to visit me today.  They were my mom’s labor and delivery nurses for most of the time mom was in delivery.  Tammy said that I look just like daddy J Nurse Kimberly also stopped by to tell me how cute I was…Granny says that I am a social butterfly.  Mommy and Daddy better watch out!!

Aunt Amanda came to visit tonight and got to hold me.  I was sure glad she came, but I think I accidently tooted on her; oops!  I love making faces and sticking my tongue out at her and Granny.  Nurse Nancy is putting me back in the isolette for bedtime!  I love you Mom and Dad!  I can’t wait to see you both very soon!!!!!


Granny holding me!

Aunt Julie!
Aunt Amanda

Thursday, October 28, 2010

Thursday Posting :)

Today Claire had a great visit with her Great Uncle Ricky and Great Aunt Pat! :)

Claire had her PIC line removed from her arm today! (Yah!) The doctors continue to have Claire on caffeine because of her breathing irregularity and continual dsats. We probably will not do more bottle feedings for a couple of weeks. Much of Claire's swelling has gone down. Her feeds are now up to 18.5ml per hour.
 Grow baby, Grow! :)

Rebecca was able to hold Claire today. The Pediatric cardiologist came by to see Claire today and said everything seems good and he wants Claire to continue to grow and get stronger. The nurses are trying to teach Claire's body how to regulate its temperature, so if she tolerates this well, she may transition out of the isolette and into a bassinet.

After a good start this morning, Claire had a cluster of Bradys (when she forgets to breath) in addition to several low dsats. Obviously this was very traumatic for Claire and Rebecca. The doctors and nurses responded quickly and she is being closely monitored. They restarted her on the cannula again to help with her breathing.

Lastly, we wanted to let everyone know that Claire will not be able to have visitors this weekend. Rebecca is headed home for some MUCH NEEDED rest and relaxation. Me, Mom, Amanda and my husband James will be rotating with each other to be with Claire. Trent and/or Rebecca have to be present to escort any visitors to see Claire. Please continue to pray for Claire's health and pray for Rebecca to have peace being away from Claire for a few days.

Aunt Julie

Claire Rose Scott Benefit Dinner

       The kind and dedicated firemen of  Rhems and Pollocksville Volunteer Fire Departments are joining together to hold a Ham Dinner Benefit for our sweet Claire Rose. As you all know, Claire has been in the Intensive Care Nursery at Duke Hospital since her birth on October 6, 2010. She has overcome many obstacles in her life and there will be more surgeries and procedures to follow in order to resolve her heart and liver conditions.
       All the proceeds from the dinner will be donated to help pay for Claire's growing medical bills. The details are below. Please pass this along to your work groups, Sunday School classes, churches, social groups, etc. 
      We hope to see you all there! (If you are unable to make it to the dinner, keep checking the blog site and we will let you know how you can contribute to this cause.)

                                    WHEN: Friday, November 12, 2010
                                    WHERE:  Rhems Volunteer Fire House- Main Station on Hwy 17 South
                                    TIME:  11:00am-7:00pm
                                    COST: $6.00 per plate
             * Dinner includes: Ham, Green Beans, Potatoes, Dinner Roll, and a dessert (Yum!) 

How to order tickets:
*Any volunteer firefighter will have tickets for sale. 
*You can pre-order plates by contacting Kay Dentico 252-671-6684

*Volunteers will deliver plates if you order 10 or more 
*Payment will be collected at the time the food is delivered or picked up.

Thank you for all your love and support!! 
Rebecca, Trent, and Claire all love you and are very grateful for everything y'all are doing!
Aunt Julie

Wednesday, October 27, 2010

Happy 3rd Week Birthday Claire!

Today was Claire's 3 week birthday.  She had another great day!  She weighed 3 lbs 7 oz tonight and was approximately 16 1/2 long.  She has lost a little weight, but we were expecting that since she was swollen and they gave her the lasix. 

Claire was very alert today and bright-eyed.  She even got to try eating from a bottle today and did GREAT!  She is getting ready for Halloween this weekend in the ICN.  I think the nurses are dressing up on Sunday, so that ought to be fun.  I was able to hold Claire 3 times today and one of those times was Kangaroo time.  It's so nice to hold her.  She is so sweet and beautiful.  We love her so much. 

We are continuing to pray for good days every day.  She is completely on breast milk now with no added fluids!  We are so proud of Claire!!

Well, it's been a long few days for me, so I am cutting this blog short.  Hope you enjoy the pictures!

The Scott Family

Tuesday, October 26, 2010

Happy Birthday Daddy

Today is Trent's birthday!  Claire and I are so sad we cannot be with Trent today - his first birthday as a dad.  But we know we are all together in our hearts.  Claire's nurse found out it was Trent's birthday and helped Claire make him a card.  I can't wait to give it to Trent!  We hope Trent has a wonderful birthday and we will celebrate it the next time we are all together.

Claire has had another good day so far.  She was dressed in a cute little onesie this morning and very alert.  I got to hold her for about 1 hour and the nurse took the cannula off to see how she would do.  When we left the hospital a little while ago, she was still cannula-free.  But we will see how it goes when we go back tonight.  The doctors decided to give her some lasiks today because she is looking a little puffy.  It may be why she weighed so much last night.  So I am expecting her to possibly lose a few ounces with the lasiks.  Claire was so hungry when I got there today.  It was her lunch time.  She is doing awesome with her feeds - so much so that they have stopped her lipids and will stop her TPN (nutrient fluids) tonight and she will just be on breast milk only!  Let's pray the plan goes that way!

There was talk about another transfusion today because her hematocrite was down to 33.  The doctors wanted to check with the cardiologists to see if their parameters had changed since she was born.  They had originally wanted the number between 40-45.  But since her heart has not been an issue at this point, they may accept a lower hematocrite.  So we are waiting to hear back on that. 

We also met with the pediatric liver surgeon today.  She was very nice and thought that my suggestion of doing a weekly ultrasound to check the status of the cyst was a good idea (definitely a relief for me!).  She also said that Claire was really too small to do any surgery, so they would probably continue to drain the cyst like they have been doing if need be.  Then as she gets bigger, they would either put an internal drain fron the liver cyst into her abdomen so the fluid would drain out and be absorbed by her body.  Or they would do a similar but different procedure where they create a "window" in the cyst - cut out a part of it or make a hole in it.  The fluid would then drain out into her body and be absorbed.  She did not think they would have to go in and remove the cyst or part of the liver at this point.  We are still praying each day that the cysts (there are 2) will dissolve on their own very soon and never come back. 

Claire has had the same 2 girl "roommates" for a while now and they are all "friends".  It's nice to see familiar faces each day when we go visit Claire.  We each feel the other parents' pain when something goes wrong or the doctors have to do a procedure on the baby.  It's so tough day in and day out not knowing when you get to the hospital, what is going to happen that day.  So we all try to stay positive and support each other.  We also got to visit with one of our favorite labor and delivery nurses today!  We plan to take some goodies to her and the other nurses and doctors on Friday. 

The Scott Family

Happy Birthday Daddy!!!  I love you!!!

Monday, October 25, 2010

A good day

Claire had another good day today - thank God!  She had a "spa day" (bath) and a cute little white and purple outfit today.  She weighed 3 lbs 13 oz tonight!  She's growing each day and becoming more alert.  She hates to lay on her back and hates to have her blood pressure taken.  But she loves her paci!  Claire had a little bit of swelling in her feet and shins today, but it seemed to be better later on tonight.  The doctor came by and said they were not going to do an ultrasound on her belly unless she became symptomatic or started having issues again.  They will keep close check on her stomach and if they have any concerns, they will test her.  They would like her to be at least 5 lbs 9 oz or more before they would want to do any surgery. 

Thank you for the continued prayers!  Claire and her family are so appreciative of each and every one of them.  Tomorrow is Trent's first birthday as a daddy!!  We both love him so much.  The perfect birthday present for him would be that Claire has another GREAT day tomorrow!  :)

The Scott Family

Weekend Update

Claire had a pretty relaxing weekend.  She rested well most of the time and had a few visitors.  As of yesterday, she still weighed 3 lbs 8 oz and she was wearing a light green onesie with butterflies on it.  She is back on the nasal cannula, but just on room air.  She really hates it and tries to pull it out constantly.  Claire is really looking good and healthy - her nurse yesterday even called her "pudgy"!  I guess maybe she is bigger than most of the babies in the ICN. 

We are praying for a good week!  The doctors were unsure if they would still do the ultrasound of Claire's liver today or not - it just depends on how her stomach looks.  If it still looks ok, they may hold off a few more days.  We are still praying that it will just go away forever and disappear. 

Have a great Monday! 

The Scott Family

Week 1 of life

Week 3 of life

Saturday, October 23, 2010

More Photos

Our Bright-eyed Ballerina

When Rebecca came to the hospital today she found her sweet daughter all clean with a cute little ballerina outfit on! Awwww! (you all just said that, I know!) The docs took out the nasal cannula today to see how Claire will do without it. So far so good; just a few desats.

They continue to increase her feeds and tonight she will be on 14mL for each feed. They will do an ultrasound tomorrow or Monday to assess the liver cyst. Hopefully by Tuesday Claire will meet with the Pediatric Liver Transplant surgeon. Claire's team of doctors will coordinate with this surgeon to determine what needs to be done to address the liver cyst.

Rebecca was able to hold Claire twice today for about 2 hours total. Claire was very alert and bright-eyed today. Very happy to be in her momma's loving arms!

Uncle Phil and Brandy came to visit Claire and Rebecca today. It is wonderful to have such a strong support team/family.

It's been a wonderful Saturday! God is so good to us! We continue to pray that God heals and comforts Claire, her parents, her grandparents, and all of you who love her so much! Thank you for all the support you've shown!

Enjoy the newest pictures! 

Friday, October 22, 2010

Praying that the third time is a charm

Claire did great today with her cyst draining!  This is the 3rd time that she has had it drained.  The first time was while in utero.  The 2nd time was this past Tuesday.  So we are praying that the 3rd time will be the last time and that the cyst will go away.  Unfortunately, that will probably not be the case, but we can pray! 

The radiologists were able to completely drain the cyst today and removed 60 mL of fluid.  Basically, that's about 2 oz.  They were able to sedate Claire enough that they didn't have to put the breathing tube in today.  She was able to remain on the nasal cannula, which was great. 

Claire weighed 3 lbs 6 oz tonight and they have restarted her feeds.  Granny Mary went back home today and Sarah, Amanda, and Colby came by to visit.  Claire is resting and trying to recover from the sedation. 

Thank you so much for keeping Claire in your prayers today and every day.  We never know what Claire is going to have to go through each day when we get to the hospital.  But she is such a fighter and is so strong.  Thank God she will not remember what she is going through now. She amazes us each and every day with her strength, determination, and grace.  We all love her so much!

The Scott Family

Liver Cyst draining again today @ 1 PM

Today at 1 PM, Claire is having her cyst drained again.  It was drained this past Tuesday and by this morning it has accumulated back to its original size.

Claire's doctor is going to consult the Liver Specialist early next week to come up with a plan for the future.  It was stated that they can not keep draining the cyst since it is affecting her other organs by pressing on them and causing her tachypnea.  They are unsure why it keeps filling up so quickly, but they did said the fluid shows no sign of infection and is also benign.

Please keep everyone in your prayers today as she under goes the procedure again.  Like we said earlier, it is not invasive but they do have to put her under anesthesia takes a day or so to come out of it.  The news kind of threw everyone for a loop this morning since the last time they drained it (while Claire was still in utero) it took the cyst three weeks to accumulate back to its original size, while this time taking only 3 days.  We are hoping after this draining, the cyst will not accumulate so rapidly and buy Claire a few more weeks till she might have to have it removed.

Thursday, October 21, 2010

Sleeping Beauty

Claire has been sleeping pretty much the past 2 days since her cyst procedure.  Not much to report except she is resting very well.  It took a long time for the sedative to wear off.  She finally opened her eyes for us today! 

Claire was visited today by her favorite visitor - her daddy.  Both of her grandmothers were there today too.  Granny Mary has been taking great notes for me and keeping track of things Claire is doing and her nurses and doctors.  Missy Momma (Anita) brought lots of gifts and things for Claire.  Trent was able to hold Claire for an hour today!  He is so in love with her.  Claire loves to hold Trent's finger.  She slept for the whole hour he held her!  She was in hog heaven! 

Her weight tonight was 3 lbs 5.4 oz.  She is scheduled for another ultrasound tomorrow of her abdomen and liver to see if the cyst has changed since aspirating it.  We are praying that the cyst has not reaccumulated and is still the size it was after they drained it.  Or better yet, that it is gone completely away! 

Claire also welcomed a new best friend into the world last night.  Ava Batchelor was born yesterday evening weighing 8 lbs 12 oz!  Almost 3 times the size of Claire!  We wish Josh and Becky the best of luck and congratulations!  We were sorry we couldn't be there as planned, so we cannot wait to get all of the girls together soon!!!! 

The Scott Family

Claire and Daddy - holding Daddy's finger

Claire and Trent

Our Family 10-21-10

"catching flies" according to Granny Mary

blowing kisses

Wednesday, October 20, 2010

Liver Cyst

Julie and I went up to see Claire last night and took a bag filled with colored water up with us.  The bag contained 3 1/2 ounces (or about 107 mL) of water - the amount of fluid that the radiologists drew from Claire's big cyst.  We took these pictures below to show just how it was in comparison to Claire.  I am not sure that the pictures really do it justice.  I was amazed at how large it was.  It filled the palm of my hand.  Claire's belly is about the same size.  The cyst measured 3.8 x 2.4 x 4.6 cm after they drained it yesterday.  They hope to wean her off of the ventilator today! 


Aunt Julie and Claire

The cyst in her belly was this big!!  Looks like it took up her whole abdomen.

Claire and Momma

"Cyst" in comparison to a computer mouse!

Tuesday, October 19, 2010

Tough Little Cookie

The past 2 days have been tough for Claire.  She's experienced all sorts of tests, pokes, prods, x-rays, ultrasounds, IVs, feeding tube replacements, etc.  Over night, the surgeons and radiologists agreed that the cyst was huge and hurting Claire's respiratory system and probably other organs in her body.  On Claire's birthday, the large liver cyst measured 5.5 x 4.7 x 3.3 centimeters.  As of yesterday, it had re-accumulated and grown to 5.7 x 5.6 x 6.8 centimeters.  It doesn't sound large, but for a 3 lb baby, it's HUGE!  I guess the doctors finally took our advice to check the cyst and agreed something had to be done today.  One of the doctors told me I should be a doctor!  HAHA!  Little does she know....  As soon as I got there this morning, the doctors were in Claire's room with consent forms and telling us the plan. 

They tried giving Claire an oral sedation but that didn't even slow her down.  So they ended up intubating her and giving her morphine so she would remain completely still during the procedure.  They basically did the same thing they did when she was in utero to drain the cyst - just this time they didn't have to go through my belly. They had an ultrasound tech doing the ultrasound so they could see exactly where to insert the needle.  It took about 45 minutes from start to finish.  They inserted the needle into the cyst and drew off 107 mL of fluid!!!  They were amazed that they got that much out.  That is about 3 1/2 ounces.  And for Claire, that was A LOT!  I am planning to fill up a balloon with that much water in it and see if they will let me place it beside her body to show just how big it was.

The radiologists came out and said it was a success.  They were not able to draw every last drop out, but definitely a sizable amount.  Her stomach looked so good - not tight and distended like it has been.  The radiologist said Claire got an "free tummy tuck" today!  The fluid was a clear, yellow, thin liquid so they think that it's probably sterile fluid and not cancerous or anything.  But they have sent the fluid to pathology to be tested.   

So Claire has been resting most of the day trying to wait for the sedation to wear off.  The nurse said it would probably be into tomorrow before she's back to normal.  They will leave the breathing tube in until she awakens.  But they have turned the oxygen down on it and said that her vitals all look good.  We will head back tonight to check on her again, tuck her in, and read her bedtime story.  Oh, I was able to hold her for about 5 minutes today before they sedated her! 

Thank you for all of the prayers on such short notice!  They sure did help pull Claire through.  She is so strong and tough.  Her mom and dad are so proud of her for all that she's been through and still keeps pushing on. I will never be as strong as she is now.  Claire has endured a lot in her 2 weeks of life.  But God has His hand on her at all times and we know that He is in control. 

Oh, and a lot of people are asking about helping out.  I believe that a large group of friends around home are planning a fundraiser/meal on November 12th.  We will post more information on it as we get details.  That's really all I know at this point!

Below are pictures of Claire getting ready for her procedure today.  She may get to stay in the new bassinet if she behaves! 

The Scott Family

PS  - she looked good today in her purple outfit too! 

Prayer Request Needed!

We found out this morning that Claire needs to have her cyst drained today!  They plan on draining the cyst at 1 PM.  The doctors said that it has grown back up to size (~6 cm) and it was causing problems internally; possibly affecting her breathing.  The procedure is not invasive, but can cause harm if the needle hits surrounding organs.

Please keep Rebecca and Claire in your prayers over the next several hours.  The both need the strength and courage to pull through this stressful procedure.  Please pray that this will improve Claire's breathing difficulties and make her more comfortable internally.

"So do not fear, for I am with you; do not be dismayed, for I am your God.  I will strengthen you and help you; I will uphold you with my righteous right hand."  Isiah 41:10

Monday, October 18, 2010

Pretty In Pink

As of last night, Claire is now up to 3 lbs 4 oz.  She has hit the weight mark so the nurses have started dressing her!  She was SO cute this morning when we walked in and she had on a pink outfit and swaddled in a pink flowered blanket!  As you can tell, the ruffles were my favorite part. :)  The nurse has turned the temperature down in Claire's isolette and she has to prove that she can maintain her body temperature for 3 days plus gain weight those 3 days.  If she passes this test, then she can be moved out of the isolette and into an open bassinet. 

With Claire's apneas, bradys (As and Bs), and drops in her oxygen saturation, the doctor decided to place a nasal cannula under her nose.  They are only giving her room air through the cannula, not oxygen.  They hope this will just aid her in breathing the room air so she doesn't have to work so hard to breathe.  We are hoping the room air will suffice so they don't have to give her oxygen. 

Her bilirubin has decreased from 5.6 to 5.4 without being on the lights or blanket in the past 2-3 days, so that is good.  We pray it will stay low or go down, and not go back up.  She is tired of those lights shining in her face all day and all night! 

Claire is still experiencing the tachypnea (rapid breathing).  At rounds this morning, the doctors thought it was more than likely pulmonary edema (fluid on the lungs), so they ordered a chest x-ray.  The x-ray came back clear - so no fluid on her lungs at this point.  The second thing that could be causing the tachypnea could be infection.  They have done 2 blood and 2 urine cultures as well as administered 2 rounds of antibiotics to be on the safe side.  Both times the cultures didn't grow anything and were negative.  But the doctor said they are only 50%/50%.  So they could possibly order another lab called ABCD (not sure what that is!) to test for infection.  If it's not infection, the 3rd thing they think it could be would be that her PDA valve is closed, so they may open it back up to allow for more pulmonary flow. 

My suggestion was to check the cyst again.  The cyst is enclosed in Claire's liver which is located right under the right lung.  Our common sense opinion says "couldn't the cyst be pushing up on her right lung and causing her some breathing distress???"  So I asked them about possibly doing another ultrasound or something to check the cyst.  After the x-ray came back ok, the ultrasound tech came in and did an US of Claire's liver cysts and abdomen.  The results have not come back from this yet.  It makes me wonder though......  We could tell that the measurements of the cyst looked bigger than when she was first born - they looked like they were closer to the size it was before they aspirated it in utero. 

They may increase Claire's feeds starting tonight if she continues to tolerate them and digest them well. 

The cardiologist came by today while we were there and said Claire's heart sounded good.  Since she is a "tet baby" they cardiologists will accept lower saturation rates than a regular baby.  The regular range is 85-100%, but with Claire, they will accept 75-100%.  If her saturations stay lower, they more than likely will do the heart surgery before Claire goes home.  They would love for her weight to be at least 7-8 lbs before they do the surgery, but they could do it now if they had to. 

As Trent says, it's all wait and see, sit and wait, watch and wait.  Lots of waiting!  Claire was very, very sweet today as she always tries to be.   We all love her so much.  She is the toughest little girl that I know!  We are so extremely proud of our little girl.  Thanks again for all the prayers and concerns.  They are getting us through each day.

The Scott Family

Sunday, October 17, 2010

Roller Coaster Ride - Just not at the NC State Fair!

Update from last night:

Claire's hematocrite was 33, lower than the 35 minimum the doctors want her to have.  So they decided to give Claire another blood transfusion last night.  That went well and we hope it will help.  At her 8 pm assessment, she weighed a whopping 3 lbs 3 oz!  She is growing so quickly!  We hope she continues to grow so she can be stronger. 

Update from today:

Over night and today, Claire had a few Bradys (where her heart rate drops) because she is holding her breath again.  This is the apnea that she was experiencing a few days ago.  The doctors decided to go ahead and give her another shot of caffeine today and then increase her daily dose.  They will also give it to her each day in 2 doses instead of one large dose once a day like they have been doing.  They hope this will help spread the caffeine out over the whole day. 

Claire was started back on her breast milk feeds this morning and is continuing to do well on those.  She's having a little trouble using the bathroom, but we hope that will correct itself soon. 

Claire had a restful day.  I didn't hold her or touch her much due to the over stimulation yesterday.  Although I really wanted to hold her, I figured she needed a day of just rest.  Claire had several visitors today including Cathy, Amanda, Ricky, and Pat.  Also Aunt Manda hung out with her most of the day too.  We are still working on getting into a routine each day.  We are learning that this is a up and down process.  Each day is different and sometimes feels like an emotional roller coaster.  But we will take the bad days with the good days, and before we know it, these days will turn into years together with Claire.  What more could we ask for?! 

Please continue the prayers!!!

Trent, Rebecca, and Claire

Saturday, October 16, 2010

Day of Life 10

Last night Claire's nurse had to weigh her THREE times to make sure the scale was working properly.  She weighed 3 lbs!!  Yay for Claire!  The increased feedings of breast milk must be doing the job.  She had a restful night and was ready for Granny, Big Daddy, and me to visit today. 

I was able to hold Claire for about 30 minutes today before we realized she had too much stimulation and her breathing, heart rate, and percentage of oxygen in her blood (pulse ox) started going crazy.  She would either hold her breath and make her respiratory rate drop and heart rate drop.  Or she would breathe really fast (tachypnea) and her respiratory rate would go really high.  Or her pulse ox would drop below the 80% minimum.  It was very scary for us for a few minutes!  We realized she needed to get back into "Claire's Cottage" (her isolette that the nurses named) and to relax.  Once the nurse got her back in and settled she still had several episodes, so she called the doctor in to assess her. 

The doctor stated that this is totally normal for preemies (but when it's your child, you can't help but be scared).  So we are back to limited stimulation (touching, holding, talking to Claire) so she can just rest.  The overstimulation causes all of these things and then in turn she has to work so hard to calm herself down and everything and burns calories.  The doctor suggested it could be one of three things causing this (other than the fact that it's a preemie thing):  1.  Position - The position of Claire's head and neck could cause her to not breathe correctly.  She seems to do much, much better on her stomach, 2.  Caffiene Level or Hematocrite - Claire is receiving caffiene doses each day to help stimulate the portion of her brain that tells her body to breathe.  Preemies's brains are not fully developed yet, so they need reminders to breathe.  As of 5:00, the caffiene level tested in Claire's blood today was a normal level, so this is probably not the answer (they could give her more caffiene).  The hematocrite is the red blood cells in her body.  The doctors want it to be around 40, and hers had increased above 40, but is now down to 37.  That is still ok since 35 is the minimum, but with her tetralogy, they don't want it to decrease too much.  We haven't heard back on that blood test from the lab yet.  If it's her hematocrite that is low, they would give her another blood transfusion.  Or 3.  Oxygen - Since Claire is a preemie AND she has Tetralogy of Fallot, her oxygen level in her blood and lungs is different.  If the doctor thinks she is not getting enough oxygen to her blood, they would possibly put a cannula in her nose to give her some fresh oxygen so she doesn't have to work so hard to breathe.  They are still amazed that Claire has breathed room air on her own since birth.  But it may be too much for her now, so they will check that too. 

So a lot has gone on today!  I am headed back tonight to check her out and see what they determine.  Please pray for her to stay strong and for the doctors to do what is best for her.  She is looking foward to visitors tomorrow too. 

Enjoy the pictures!


Friday, October 15, 2010

Holding Steady

Claire had another pretty good day today.  Last night, her temperature went up so they decided to test again for infection and give her another 48 hours of antibiotics as a precautionary measure.  The doctor said that her white blood cell count came back good, so that was "reassuring."  Her temperature came down after the nurse placed a cold wet wash cloth on her head, and it continued to stay down all night and day today. She is still on the bili lights but her bilirubin has come down to 5.6.  Her weight is holding steady around 2 lbs 13 1/2 oz.  Her hematocrite has been on a slow down trend and is now 37 (the goal is between 35 and 40, so the will check this weekend to see if it continues to go down).  If it keeps decreasing, another blood transfusion could take place. 

Claire's feeds have been increased today so she is getting more and more breast milk.  This is wonderful because it will help her to grow and develop much faster.  I thought she looked like her face was fuller today so I hope this means she is starting to fill out.  I was able to have Kangaroo Care again with Claire today for about 45 minutes.  I absolutely love these times! 

I am expecting to get my camera cord this weekend so I will try to post more pictures.  Please continue to keep Claire in your prayers.  This is an up and down process.  She is such a fighter and every nurse or doctor that she has seen has called her "feisty"!  Wonder where she gets that from.........  :)  We are looking forward to some visitors this weekend! 


Thursday, October 14, 2010

Home Away From Home

Well, we finally got moved into Julie and James' house today.  It seems so weird to be in an actual HOUSE!  I haven't lived in a house in over 2 weeks!  I was talking to my mom today and realized how that Wednesday morning, I woke up, planned to go to the doctor, then planned to go to work.  Instead I ended up at CarolinaEast Medical Center and then on an ambulance ride to Duke.  It seems so weird!  Trent and I are SO thankful to Julie and James for allowing us to move in for a little while.  We have had several offers from friends and family to stay with them, and I am sure we will take them up on it soon!!  We will have lived more places in these next few months than we ever have!

Claire has had a great day today!  Her nurse taught mom and I so many important things today about the best way to care for Claire.  I felt very comfortable leaving the hospital for a few hours today - something I haven't felt in over a week.  I am still watching the clock and anxious to get back.  But I am trying!  We learned different ways to help Claire remain calm, not burn extra calories, how to plan the day by consulting with her nurse (YES!  Something I can PLAN!!), and how to help her grow and develop and feel like she is safe.  Germs are a huge thing with Claire.  We cannot risk the chance of her getting sick at all.  So if that means not touching or holding her a day or 2, we have to make that sacrifice.  So if you visit Claire, please do not be upset if you cannot touch her.  You will have plenty of time to do that!

Claire's weight last night was 2 lbs 13 1/2 oz, so she's gained a few ounces.  She is back on feeds of breast milk every 6 hours and they are going to increase that to every 4 hours soon if she continues to tolerate the feeds.  Her bilirubin went back up to 6.3, so she's back on the bili lights as well as her cool sunglasses.  So we don't get to see her eyes much and don't get to take her out much.  They need to get this under control, and the only way is to keep her under the phototherapy as much as possible. 

We missed the doctor's rounds this morning, but Claire's nurse gave us a good update.  The test results they sent off to test for Di George Syndrome came back negative, so we are truly thankful that she will not have more issues to deal with throughout her life.  Claire is a tough little girl and in her past 8 days of life, she has had more things to deal with than most people do in their whole life. 

The surgery team was consulted again and they feel at this point there is nothing to do with the cysts.  The team said they thought that something would only need to be done if the cysts start affecting her feedings or urinating.   So the nurse said she would probably have it handled via out patient.  We will continue to watch this problem as it could change at any time.  Claire is still experiencing some "periodic breathing" episodes where she breathes really fast, then hardly at all, then normally, etc.  But this is attributed to her prematurity. 

Again, we cannot express the gratitude we have towards everyone for the prayers, love, kind words, visits, emails, calls, cards, gifts, and sacrifices.  We knew we were blessed, but this has put a whole new spin on how we view things.  We are so extremely blessed to have this beautiful, vibrant, absolute gift from God.  I cannot even express into words how we feel about Claire and how blessed we are to be chosen by God to be her parents. 


PS - I would post more pictures, but I don't have my camera cord with me!!  Sorry!

Cards, Letters and such...

I was reminded to let folks know that if you wanted to send Rebecca, Trent, and Claire a card or something via mail, you are welcome to send them to our house in Clayton. We will be sure to get them to Rebecca! She will be moving in with us for a bit. I don't quite feel comfortable publishing our address on a public blog, so if it could be shared friend to friend that would be great!

Wednesday, October 13, 2010

Movin' on the Right side (of the NICU that is)!!

Happy (one week) birthday to Claire!!  

From the doctors on her birthday; CLAIRE IS MOVING (down the hall)!!!

I got news tonight that Claire is moving to the triage side of the NICU.  From my understanding, she was in the intensive care side of the NICU after she was born where two nurses tend to 4 babies.  The intensive care side is for babies just being born or who are in a very unstable medical condition.  In triage, she will be in a room with just one other baby.  She will still get the same care as she was receiving, but this just means that her condition has remained steady over the past couple of days and is looking to stay that way.  She has gained weight (up to 2lbs 14 oz) and has very few to no spells of apnea.  She is still off of the bilirubin light and is back on milk feedings every six hours (which means there was no sign of infection in her tummy or blood).  The surgical team decided to hold off on taking a MRI/CAT scan or ultrasound of the liver until they know more about it.  At this point the cyst is still pretty large, so Claire has to lay on her right side so it does not interfere with her other organs.

We are all very happy with her movement down the hall.  She will remain in the NICU until Christmastime, but moving down the hall is a pretty big deal concerning her health.

Rebecca and Trent continue to thank all of their visitors, kind words, thoughts, and prayers.  


Tuesday, October 12, 2010

Daddy's Girl

This is my very first blog!!!!  :)

Claire was so excited today to see her Daddy again!  Every time I talked to her about him coming to visit, her heart rate increased.  Trent was able to hold his little girl for the first time today and they both loved it!  She was upset when the nurse took her out of her isolette, but as soon as Claire was placed in her daddy's arms and he started talking to her, Claire's eyes opened really wide and she calmed right down.

Claire is definitely Trent's daughter.  Not only does she look just like him, she has his personality, determination, fight, and strong will.  Our daughter has taught us the real meaning of strength through this whole process.  She has more determination and courage than I could ever dream of having.

As far as medical updates, everything is still staying about the same except that she is not on the biliblanket and lights today!  Yay!  Her bilirubin is down between 3 and 4.  Her labs are coming back fairly normal.  Tomorrow the surgery team and the radiologists plan to get together to determine what type of imaging will produce the best results on Clarie's liver cysts.  They plan to either do an MRI or another ultrasound.  Hopefully they will get the answers they need to figure out what exactly these cysts are and what to do about them.  The cardiologist came by today and listened to Claire's heart and it sounded good for a tetralogy patient.  They are just going to continue to monitor the heart.  They also did another ultrasound of Clarie's brain today to check the status of the level 1 brain bleed.  The doctor said it had not changed since her first day of life.  They will do another ultrasound of this on day of life 30 to see if it has changed.

Claire's nurses and doctors are awesome!  They are truly taking good care of her.  The prayers for Claire are tremendous and are truly getting us through day by day.  We have learned that God is in control and He has a plan for all of us.  This experience has made me realize that my plans are no plans and to take each day as it comes.  Thank you for everything that you are doing for us.  We are so humbled.



Baby Shower Gifts

As you all know, each of Rebecca's baby showers were all cancelled due to the emergency labor of Little Miss Claire.  With that said, Rebecca and Trent will not be able to set up their nursery for Claire until after she is brought home.

Some people we asking if they could drop of their gifts ahead of time and that would be awesome!  This would help Rebecca and Trent tremendously, so they can get prepared to bring the baby home.  If you were interested in dropping off your gift ahead of time, please contact Trent, Anita Scott, or Mary Carpenter and they can help get the present where it belongs, or direct you to someone else who can help.  Right now, it would be best if the presents were dropped off at home instead of at Duke Hospital since Rebecca's living arrangements are constantly changing and we do not want them to get lost.

I believe a Welcome Home party is in the works sometime right before Claire is brought home, or directly after.  Look for details at a later date!    

Monday, October 11, 2010

"Our God is Healer, awesome in power" - Chris Tomlin

Tonight we got news that Claire's PDA valve in her heart has closed; which is great news!  This is supposed to close after birth, so Claire is still on the right path of development.

One thing they found today was a sign of acidosis.  Normal human blood is around 7.35-7.45 which is basic.  With Claire, they found that she has a low level of Bicarbonate, which is a base found in the blood.  Since her level of Bicarbonate has decreased, this increases the level of acidity of her blood.  They believe that it is caused by the immaturity of her kidneys and their inability to flush out the toxins.  The toxins are "spilling" out in her body causing her to have a low urine output.  To fix this, they are giving Claire a dose of Lasix, which flushes out the excess fluid build up.  Another hypothesis is that Claire might have an infection of some sorts.  They are giving her a dose of antibiotics for two days that should rid the infection if that is the case.

Being premature, Claire's lungs were borderline underdeveloped.  Due to the immaturity of her lungs, she has had a high respiration rate.  They call this Tachypnea.  When a baby is born naturally, the fluid in their lungs is supposed to be expelled, but in Claire not all of her fluid was expelled.  This is the main cause for her Tachypnea.  The Lasix will also help with the fluid on her lungs.

They also noticed distention in her stomach just from observing her.  They believe that this ties in with the Tachypnea and the excess build up of air in her tummy.  They are going to take an X-ray just to make sure.

Claire's potassium levels in her blood test were up today, but they determined that it was from the Hemolysis (sp) of her red blood cells when they were squeezing her foot to draw blood.  They will no longer be squeezing her feet, instead drawing blood from her IV's.    

The good news in all of this is that all of the above is FIXABLE.  These are common "problems" in preemie babies, so Claire is not alone.  For the next couple of days, they will be testing her urine and blood output just to make sure there is no infection present.  

Rebecca is running on hardly any sleep but is manging well.  She is very grateful for everybody's part in this equation.  She is definitely learning what it is to be a new mom; changing diapers, getting "pooped" on, holding Claire's tiny hand, and feeling her embrace each little hour per day that she gets to hold her...what an awesome feeling!!  As Chris Tomlin states in his song, "Our God is Healer, awesome in power".

Aunt 'Manda  

Sunday, October 10, 2010

She is sweet as Sunday afternoons!

I just heard some good news to start a week of right!

-  After Claire's assessment today, we found out that her Bilirubin has dropped down to a 5.9, but they plan on keeping the bili lights on her for at least another day.

-  Claire's calcium level is holding steady

-  Her hematocrite is still around 40.  I believe Rebecca said they would like it to be between 40-50.

-  We did find out that she has a Brain Bleed, level 1.  This is common amongst preemie babies and can go up to a level 4.  This is because the brain of a premature baby is very immature and because of that immaturity the fragile blood vessels tend to rupture more easily.  Level 1 is a very small amount of blood occurring on the brain and most times it will clear up and cause no harm to the baby.  They plan waiting to do another Ultrasound on her brain until Claire is 30 days old, unless they see any signs of it changing.

-  She has been able to digest most of her milk so they are increasing feedings from every 6 hours, to every 4 hours.

-  Lastly, Rebecca was able to get in 1 hr 15 mins of Kangaroo care again today!  

Please continue to keep Rebecca, Trent, and Claire in your thoughts and prayers.  They are adjusting to being new parents while having their baby at Duke.  It is not easy being away from home; as much as not being able to take your new baby home.  We thank everyone always for each special thought, prayer and concern.    

Saturday, October 9, 2010

Happy Saturday night!

I wanted to drop in and give everyone a quick update.

There hasn't been much going on today at Duke.  Claire's condition has held steady for most of the day.  Rebecca was able to hold Claire again this morning for about an hour using the technique kangaroo care!  The nurse mentioned the other day that they only allow the mother's to hold the baby for about an hour at each holding because of temperature drop, etc.  This afternoon when everyone stopped back by to see Claire, they had placed her back under the bili light because of the rise of Bilirubin in Claire's system.  Rebecca was explaining earlier that the Bilirubin is usually excreted through her feces, but since it was not excreting fast enough it builds up in Claire's body.  The bili light helps break it down so she is able to pass it via her urine.  This all ties back to her hepatic (liver) cyst.

She has also had a few more spells of apnea today, once while Rebecca was holding her.  I guess there is something comforting about your mother's embrace that you forget to breathe??  haha But all they have to do is tap her feet or back and she wakes up and breathes again.  As of right now they do not have to put a nasal cannula in for supplemental oxygen.

She remains at 2lbs 10 oz.  They want her weight to increase and are hoping that the more Rebecca is able to pump the more fat Claire will receive which will increase her weight.

Rebecca and Mom were able to break away from the hospital today and got some fresh air.  They went to Julie's in Clayton and we all had lunch and went to Target to get a few items.  We were able to print some pictures so now everyone has their own BRAG BOOK of Baby Claire!!  So make sure to ask for pictures the next time you see anyone!!

Well that is all for the night; we will update you tomorrow!!

Sweet dreams!

Aunt 'Manda  

Late night update on Claire!!...and come to NB Farmer's Market to pick out your Bullock Pumpkins!!

Rebecca just gave me a quick update on Claire:

Around 10 PM tonight, the doctors and nurses in the NICU decided that they needed to insert a PICC line (Peripherally Inserted Central Catheter) in to Claire's right arm.  It is a semi-permanent IV line that goes into her right arm and up a main vein close to her heart.  This was originally in Claire's belly button, but they decided to take it out to prevent infections overtime.  This also saves them from having to poke her constantly with IV's and such.  I heard that this was a very traumatic experience for Claire, but thankfully she was given some morphine to calm her down and for the pain that went along with it.  She is such a fighter!!

Make sure you stop by New Bern Farmer's Market to pick out your favorite Bullock Pumpkins from Chadbourn, NC !!  They will be out there from 8-1PM tomorrow!  Happy Fall!!

Friday, October 8, 2010

Visitation information for Claire!

Here is some important information if you plan on visiting baby Claire!

First off, please call Rebecca or Trent ahead of time and make sure that one or the other are there at the hospital.  Only one visitor is allowed to go back at a time and they must be accompanied by Rebecca or Trent.  Also remember that Claire's visitation will be limited depending on her condition.      

To go back in the NICU, no rings or bracelets are allowed, so make sure you leave them at home or take them off before entering.  After you are let back, you MUST scrub your hands and arms up to the elbows for at least 60 seconds and place on a sterile robe.  Occasionally you will have to wear a hat and mask if they are performing a sterile procedure.  Also, NO CELL PHONES!!  The cell phone signal will interfere with the NICU computer system.   

Rebecca is pumping at 12, 3, 6, and 9 everyday for 15 minutes each time so those are not good times to come!

***VERY IMPORTANT*** PLEASE do not come if you are sick or are getting sick.  We do not need to spread germs and bacteria around and especially to Claire.  If Rebecca or Trent were to get a cold, they would not be allowed to see Claire until they are better!   

“Every good and perfect gift is from above.” – James 1:17

Claire with her pacifier! 

Kangaroo Care
Granny giving Claire kisses! 

Great start to a wonderful weekend!  Today Rebecca was discharged from the hospital; a day that we did not think was in our near future.  The doctors gave her a clean bill of health and is back to 'normal'.

Me, mom, and Rebecca were able to spend ample amount of time today in the NICU with Claire.  Rebecca was able to hold Claire today for about an hour using the technique known as Kangaroo Care.  That is when the mother is able to hold the baby, usually a preterm baby, directly on her chest with skin-to-skin contact so she could heart her mom's heart beat.  As soon  as Claire was placed on her chest, she feel asleep and was not longer fussy and remained that way the entire hour she was there.  It was the sweetest moment that I have witnessed yet!  Claire kept sticking her tongue out and licking Rebecca's chest as if she knew that was her mom!   

Claire's condition has remained the same throughout the day.  Her bilirubin is still high so she might have to go back under the UV light to help break it down.  She still has a few apnea spells each day, but that is normal for a preterm baby.  Also, the doctors are talking about doing a CAT scan on Claire's liver so they can get a better look at the cyst and decide where to go from there.  Right now it is not affecting any of the surrounding organs nor pressing against the two main veins near the liver.  Her weight has dropped to 2lbs 11oz but that is normal for any baby to lose some weight at the beginning.  She is able to be fed Rebecca's milk which she is able to digest which is a good sign meaning her itty-bitty digestive system is working great!!

As always, we can not thank everyone enough for all of the wonderful prayers we have been receiving.  God continues to bless us as we travel down this difficult road.

Aunt 'Manda

Happy Friday!!

Thursday, October 7, 2010

The healing power of touch

Hello Everyone-

Thank you all for your continued prayers! I know my faith in God has grown by leaps and bounds in the last several days. God has a powerful way of bringing you to your knees in prayer and then lifting your spirits through healing! God is good!

The latest report is that Rebecca is doing well. She is starting to feel human again! hehe Amanda and I are now "scared straight" babies for us for a while! LOL Rebecca got to HOLD Claire today for 15 minutes. A mother's bond to her child is something I can't even put into words.Claire reached up and held tight to Trent's finger! Awww...I'm so sorry I missed this but Rebecca's friend, Beth, took some pictures of this that we all can't wait to see!

Claire is still fighting hard. She had apnea 3 times last night; yes...she stopped breathing. The nurses were able to correct this quickly but if it continues to happen then something more permanent will have to be considered to ensure she keeps breathing. It is still my understanding that the heart is ok and they aren't talking of surgery for that at this time. The blood and liver issues are most concerning. It is a minute to minute process with the doctors and Claire's treatment. Rebecca is pumping and the nurses are feeding Claire the milk thru her feeding tube. Awesome!

Continued prayers, love and support are needed for Rebecca, Trent, and Claire. Claire is a fighter and we pray God's healing hands continue to care for her. Rebecca and Trent will need so much love and support. I'm not a parent, but I can only imagine the feelings one must have to leave the hospital without their baby; knowing that she must stay to get healthier. (sigh) Rebecca may move in with James and I for the time being. (James is excited because, for once, he may know what it's like to have a home cooked meal!!! LOL j/k)

We love y'all!

quick update from rebecca

NICU nurse said Claire's bilirubin initially went down after the blood transfusion at midnight but at 4am the labs showed it had gone back up. She thinks it could be b/c the transfusion diluted her bilirubin and then when they did the labs it was a more true number. We want it to come down! Rebecca says the doc will talk to us about it today.

Also, her hymatocrite (sp?) went up to 36 from 32 in the midnight labs and then up 1 more point to 37 in the 4am labs, which is good! So the transfusion is working. We want that number close to 40, I think.

All this medical stuff is over my head! We just know that Claire and he doctors are working hard to get her stabilized!

Mom and Dad will head back to the hospital today. We'll keep ya posted.


Wednesday, October 6, 2010

Stop and Smell the ROSEs

It's time for a late-night blog post.

Rebecca, Trent and Claire are doing well....just exhausted. They have been through so much these last several days. Rebecca has stayed on the 5th floor today but may be headed to the 7th floor soon.

 Claire is in the Intensive Care Nursery and was receiving her 1st blood transfusion tonight. Rebecca and Claire have different blood types (+/-). Her red blood platelets are low; her bilirubin (sp?) count is high, which I think it is related to the difficulties with the liver. She will have repeated blood tests done to monitor these things. Claire's heart condition is a secondary concern at this point. Everyone is very concerned about the blood issues and the liver issues. Claire has a long road ahead of her. She needs so many prayers for her health.

Rebecca could be discharged in a few days, but of course, Claire will be staying until she is healthy enough to leave.

Mom says Claire has adorable hands like Rebecca and a beautiful little nose like Trent. We all got to spend a few precious moments with sweet Claire. She just seems perfect and like a miracle from God. Please pray for Rebecca and Trent, as they struggle with the emotional side of not being able to hold and comfort Claire yet. Claire has to stay protected in the little incubator until she gets stronger. I believe Rebecca was able to touch her softly tonight.

Rebecca and Trent thank everyone for the prayers, gifts, visits, posts, etc!! They are very proud parents!!

I attached a couple of photos. She is so tiny!

We will do our best to keep everyone Amanda and I have gone back to school/work.