Tuesday, November 30, 2010

Did they really say the "H" word today????

When I walked in to the TCN today, one of Claire's favorite nurses had her sitting up in her boppy pillow like a big girl with her stuffed dog and bear beside her, listening to her Baby Einstein CD, and looking at her mobile.  She was totally cute!  She has her cousin Anna's mobile and her bestie Ava's outfit on today.  She is one loved little girl! 

The doctors decided to give Claire a daily dose of lasix and they started her on the EleCare formula today.  She scarfed down her first feed for me.  I looked at the clock when we started and it was 11:04.  When she finished eating, it was 11:06.  The girl loves to eat!  That's one thing she got from her momma!

Then came the "H" word.  I thought I would be so excited when the doctors started talking about sending Claire home.  But today when they mentioned it, I got so nervous and had the same thought that I had during delivery - why did I think I could do this?!?!?  Oh my gosh - we are going to eventually have to take her home.  Home with no nurse watching her 24 hours a day.  Home with no monitors hooked up to her little body so we know exactly what her heart is doing, how she is breathing, her blood pressure, and her body temperature.  Home where there is no one to call over to her bed to ask "does this look right?"  Home where we have to be responsible for knowing what to do it she has a tet spell due to her tetralogy.  Home where we have no idea what the liver cyst is doing day to day. 

But at the same time.....Home where we can be a family together.  Home where Claire can see her room.  Home where we can hold her for the first time without any wires or tubes.  Home where we can hold Claire for the first time without having to scrub in for 1 minute and wear a beautiful blue hospital robe.  Home where so many wonderful memories are waiting to be made.  Home - the place we have wanted to have Claire all to ourselves.  Home - a place that will never be the same and will be such a happier place with our sweet baby girl. 

So obviously we know that in reality, Claire will probably not be home in a week like they said today.  We don't want to get too excited because we know things can change at any time.  We are having a family conference with some of her doctors tomorrow so we hope to get some good answers to Claire's short and long term plans.  Unfortunately, I don't think any of the surgeons can be there to talk about their plan for her liver. 

We were also told to go ahead and contact Claire's pediatrician.  And to also contact local rescue squads to let them know about Claire's conditions and what they need to be aware of and be prepared for with her heart and liver.  So be prepared to be educated!!  :)

Tonight Claire pulled out her IV so she had to get a new one.  She was very alert and doing good.  Her weight was down a little due to the lasix - 5 lbs 12.5 oz.  Her girth is still around 34 cm.  Her nurse tonight (another favorite) said Claire "was disappointed with her meal plan" meaning she is not getting enough food!  She has not had any stools yet since she started eating again, so we are not sure if there will be blood showing up or not.  We are praying there is no more blood in her stool. 

So we hope tomorrow's meeting is productive!  Thanks again to everyone for all that you are doing for our family!  Don't forget the BLAST dinner at Centenary UMC Wednesday night - home made lasagna!  Yum!  Thank you to the preschool teachers for thinking so much of Claire.  Every one's kindness brings tears to my eyes every time we think of it. 

Busy day ahead of us tomorrow, so goodnight!

Love,
The Scott Family



Monday, November 29, 2010

Sweet Baby Girl

I just wanted to let everyone know that Claire is such a sweet baby girl!  She is so good.  With everything she has gone through, she is so sweet and is such a delight.  She hardly ever cries - only when they take her food away and she's hungry.  She is beautiful in every way.  Claire loves to snuggle and has fallen in love with a Baby Einstein lullaby cd.  It's so amazing to watch her notice that the music is on and that she actually listens to it.  We also put a mobile in her crib this weekend and see seems to watch it turn every now and then. 

Claire grows each day right before our eyes.  It's so hard to believe we have had her "in person" in our lives for almost 8 weeks.  I can never say enough that she has taught us so much in these last 8 weeks than we could have ever imagined.  We just love her so much!

And her nurses and doctors probably realize just how much we love her when we are there at the crack of dawn each day and on the days that we don't leave until 10 pm.  I am sure they get tired of us being there!  But we just can't stay away.  Afraid we might miss something?  Of course!  Don't want to miss a minute of holding that sweet baby?  Of course!  But the nurses and doctors are great and don't try to shoo us out the door.  And they answer each and every question we have - or at least attempt to. 

As far as an update for today - over night Claire had blood in her stool again.  When I called at 2:30 am, she had not had it yet.  When I called at 5:30 am, the nurse told me the news.  They decided to take her off of her feeds and put her on IV fluids again to let her belly rest. Plus, they thought she might have her cyst drained today so she would have been taken off of foods for that anyway. 

My thought was that it could be a reaction to the HMF (human milk fortifier) that they put in the breast milk.  It adds calories to the milk.  But it can also cause irritation in babies.  The doctors still are not sure, so they talked about starting her on Elecare formula (a grossly broken down formula) tomorrow.  She could stay on this formula for a few weeks, then hopefully work back towards drinking breast milk. 

They did xrays this morning and her abdomen looks fine.  I have heard them mention the word "colitis" too, so it could be that.  Her labs came back normal and her hematacrit was up from 29 to 31 which is good.  Her abdomen still looks very distended, but after rounds this morning, the doctors said radiology refused to drain the cyst again like they have done in the past.  The risk outweighs the benefit according to them.  Both times they have drained the cyst, it has reaccumulated in days.  So risking infection, puncturing something, or hitting a major vessel is not worth a few hours of a smaller cyst. 

The neonatologists checked with the surgery team and as of this afternoon, they don't want to do an ultrasound because they don't feel that she needs surgery on the cyst at this point.  They  want her to have her heart surgery first before the cyst surgery due to putting stress on her heart.  So we are still at a stand still with the cyst.  Her belly is so large that she is starting to get small spider veins on her lower abdomen.  I hate it so much for her. 

We are hoping to schedule the family and doctor consult this week to get all of her doctors together in one room so we all get on one page.  This is a service they offer patients to ask questions and to find out short and long term goals for Claire.  We are looking forward to this meeting to see what their plans are for her.  It's hard to keep it all straight when she has so many doctors!

So that's it for now.  Kind of a sit and wait kind of day.  But through all of this, Claire is as "good as good" (to quote one of her nurses this weekend!).  She has a grace about her that I have never seen in anyone.  I hope she always carries that with her.  It will carry her far in this world.......

Love,
The Scott Family

Sunday, November 28, 2010

Quick update with pictures

Claire had a pretty good weekend visiting with Missy Momma and Great Aunt Doe.  I was able to go home for a few days and spend some time with Trent and getting some much needed things done. 

The doctors gave Claire a diuretic this weekend to help her remove some fluid. She lost about 3 ounces due to the lasiks, but she looks so much better!  She still has some swelling, but her face and legs look like new.  The doctors took Claire off of her IV fluids and she is just on full milk now with fortifier. 

Tonight she weighed 5 lbs 12 oz.  The doctors were concerned with her belly today, so they did xrays this morning and saw that the cyst looked bigger.  So they have decided to have an ultrasound done tomorrow and possibly drain the cyst again (hmmm, wonder who has asked about the ultrasound for days and days.....).  At least they are going to check it out now.  Her belly button sticks out all the time due to her belly being so distended.  They think it could be making her breathe a little fast and possibly making it so she cannot eat as much at her feedings.  I had made that suggestion last time when she threw up (Tuesday) - thinking that when she was in utero and the cyst was pressing on her stomach that she couldn't swallow the amniotic fluid - that maybe they cyst was making it hard for her to eat more.  So they may have seen that on the xray too.  I hope we will find out more with the ultrasound in the morning.

And I hope we come up with a good solution to this problem.  So please pray for Claire and the doctors and nurses tomorrow!  We will try to update the blog or Facebook when possible. 

Below are a few pictures from the past few days.  Hope you enjoy!

Love,
The Scott Family






Friday, November 26, 2010

Talking turkey and other stuff

Happy Thanksgiving!  We have so much to be thankful for this year - especially our sweet baby girl, Claire.  The post would be so extremely long if we took the time to say everything we were thankful for, so we won't bore you here! But know that we are also thankful for all of you.

Claire had a great first Thanksgiving!  She was able to wear her "Baby's First Thanksgiving" bib from Aunt Julie and Uncle James.  She has had several good days and is waiting for her Missy Momma and Great Aunt Doe to come visit this weekend. 

Claire has also graduated to newborn clothes!  Well, the very small newborn clothes.  But she is making progress!  She weighed 5 lbs 14 oz last night - must have been that turkey leg I fed her yesterday....  :)

Her nurse today is planning to put her back into a big girl crib!  And the doctors are going to try taking her off of the IV fluids and put her back on full feeds today too.  So we'll keep our fingers crossed that all goes well with that. 

Hope everyone has had a great Thanksgiving visiting with friends and family. 

Love,
The Scott Family

Wednesday, November 24, 2010

Claire needs your prayers...

Rebecca sent me a quick text so I could update the blog for her. She and Mom left our house by 6:30am this morning and will plan to stay through shift change tonight. Trent came up today and spent the day with Claire, Rebecca and Mom! :)

Claire is 7 weeks old today! Wow! 7 weeks! I can't believe it! She is such a gift from God!! She weighs 5lbs 10 oz! I believe she is still in the Transitional Care Nursery but apparently she had a difficult night last night. Her belly girth continues to increase and she vomited some of her milk last night. The doctors did an xray to check her belly and it came back showing no negative results. They decided to decrease her feeds today to see if that helps. There really isn't a clear understanding of why this is happening.

Claire needs your prayers of strength and healing!

We love you,
Aunt Julie

Tuesday, November 23, 2010

On the move....again

Claire had a pretty good day today.  She has eaten all of her milk since yesterday by bottle!  The nurses put the NG tube back in just in case, but she has not had to use it yet.  But the more milk they give her, she may have to use the tube some. 

She also had her eye exam today and it went great!  Of course, I left the room this time.  But Granny stayed in there and said she did great.  The blood vessels in her eyes are growing exactly how they should be and Claire should have no vision problems. 

When I called tonight to check on her, the nurse said she had been moved back to TCN (Transitional Care Nursery - the step down nursery).  So we are keeping our fingers crossed that she doesn't get shipped back to ICN like she has the past 2 times. 

Thank you for all of your thoughts and prayers!!!  With Thanksgiving coming up this week, we are reminded how thankful we are for so many things this year. 

Love,
The Scott Family


washing up to see Claire


eating like a big girl



getting this burping thing down pat


Who needs a paci when you have a thumb!


Monday, November 22, 2010

BLAST Dinner in honor of Claire

Wednesday, December 1st, Centenary Thru-The-Week School is hosting the BLAST dinner at church.  All proceeds will go to help Claire.  The details are below:


Date:       Wednesday, December 1, 2010
Time:       Serving from 5:30 pm to 6:30 pm
Place:      Centenary United Methodist Church, corner of New and Middle Streets
Menu:      Home made Lasagna, salad, garlic bread, dessert
Price:       $5 for adults; children 10 and under are free


Dine in or take out!

Reservations for plates are HIGHLY recommended, but walk-ins will be welcome. To place a reservation for your plates, please call Marshall (church secretary) at 252-637-4181 by Monday, November 29th.  Reservations will help them know how much food to order and to prepare to keep from running out. 

If you need more information, contact the preschool (Diane Hawkins or Katherine Muse) at the number listed above. 

The Scott Family is so appreciative of what everyone is doing for Claire!!  We just cannot express our gratitude and love for all of you!!!

Making changes

Claire was able to start eating a little bit of breast milk today!  She was so excited!  We fed her from a bottle a few times and she sucked it right down.  The nurse will be putting the NG tube back into her nose tonight so they can feed her that way too so she doesn't get so worn down trying to eat.  We are praying everything goes good with the feeds!! 

The doctors took her off of her antibiotics today as well as her caffeine.  We will see what happens with no caffeine.  She's had that since she was born to help stimulate her brain to remember to breathe.  Claire should be growing out of that apnea phase, so she shouldn't need the caffeine anymore.  The physical therapist came back by to work with Claire, but she was too fussy today.  She knew it was close to eating time, so she didn't feel like exercising.  She should also have her 2nd eye exam tomorrow.  This time I will NOT be in the room this time!!!! 

So we are praying that the feeds go well and that Claire tolerates them.  She will be much happier if she can eat!

Love,
The Scott Family

Sunday, November 21, 2010

SURVIVOR: DUKE ICN ISLANDS

This past week for Claire has been like the show Survivor.  She was taken to Duke ICN Islands and dropped off with no food to eat.  She has been surviving quite well by eating bugs, fish, and berries....  ok, not really any of those things.  More like clear liquids and lipids.  Nothing that is satisfying for a hungry belly! 

Today's challenge on Duke ICN Islands was a tub bath - very scary!  Claire's host of the show today (her nurse) and her teammate (mommy) were great with assisting Claire on her challenge.  The Bath Tub Challenge was underway and Claire did not like it!  The soapy water was hard to maneuver in and Claire's teammate was very nervous.  But with the hosts assistance, Team Claire pulled off the Bath Time Challenge with only a few minutes of screaming!  Yay! 

Clarie's reward for winning and completing today's challenge:  a new clean outfit with an owl on it saying "Who's the cutest?" and the footies saying "I'm the cutest!", snuggle time with mommy, and of course the grand prize of getting milk tomorrow!  Way to go Claire! 

Stay tuned for the next episode!  :)

PS - Claire weighed 5 lbs 6 oz tonight.  Her stomach is still kind of tight even after a stool today.  I may call the doctor tonight to see what he/she thinks about it. 

Love,
The Scott Family

Bath Tub Challenge

Claire competing with confidence


Challenge complete!!! 


Saturday, November 20, 2010

35 weeks

I was reminded yesterday that I actually should still be pregnant with Claire now (well, "should" on the gestational calendar, but not on God's calendar).  I would be 35 weeks pregnant this past week.  So I thought it would be interesting to read in my book "What to Expect When You're Expecting" as to what Claire should be like at 35 weeks if she was still in my belly.  Seems like she is right on schedule with her weight as it says she should be around 5 1/2 pounds.  Last night she was 5 lbs 3 oz, so she is close.  The length it gives in the book is 20 inches.  At last measurement, Claire was 16 1/2" long.  So she got some short genes - she gets it honest from both sides!  Her brain cells should be developing a lot during this time as well.  That's why it's so important for Claire to get good sleep and rest so her brain will develop. 

Today she seems to be resting well.  I went up early this morning and held her for about 3 hours.  I actually fell asleep a few times because it's just so comfortable holding her.  Aunt Julie and I are going to head back up to see Claire in a little bit.  I just can't stay away!  Claire has been able to have a bowel movement, so her stomach is better and I hope she will not be as fussy.  She is still very hungry.  Her doctor said she will probably start back on feeds the first of the week, but he won't be there.  Claire will have a new doctor.  He said that Claire didn't like him and that she was giving him the evil eye since he took her off of feeds!  The doctor also said that the new doctor coming on next week would be the "hero" since he will be giving Claire food again, and that since he took her off of feeds, he would be considered the "goat"!  These doctors are so great!  :)

Oh, and the kind teachers at Centenary Pre-School have decided to host a fundraiser at the church for Claire on December 1st.  The church usually has a BLAST night that night, so all of the proceeds raised from the BLAST supper will go to Claire.  The graciousness continues..... 

And we realized today that Claire's Duke BFF, Eliza, has been moved into Claire's room right beside her!!!  Claire is so excited that they can whisper back and forth to each other again.  They have a lot to catch up on!  I haven't seen Eliza's parents lately to get an update on her, but please keep her and all of the other babies in the ICN in your prayers.

Have a great weekend and please keep Claire in your prayers!

Love,
The Scott Family

Friday, November 19, 2010

5 lb bag of sugar

Claire weighs 5 lbs 3 oz tonight.  So imagine holding a 5 lb bag of sugar.  Except Claire is even sweeter that that!  :)

She had a sleepy day and I got to hold her for a few hours.  She seems to be more fussy at night and not as comfortable as normal.  Her stomach girth is high tonight and we are concerned of course that something is going on with the liver cyst.  The doctors think it's probably because she has not stooled since Monday.  So we are hoping that's all it is.  They plan to give her a glycerin chip tonight to see if that helps her use the bathroom. 

I was able to meet one of Claire's besties, Ava, today.  And I got to see Ava's mom and aunt that I haven't seen in a while!  It was a good visit and I was amazed at how much bigger Ava looks and feels than Claire.  I guess I have become so used to a preemie sized baby!  And to think, I used to not even hold babies because I thought they were so small.  Now our 5 lb baby seems to be a normal size baby to us. 

We hope Claire has a good weekend!  Please keep her in your prayers as always!

Love,
The Scott Family

Thank you

Well, I kept thinking I would come up with this really special thank you blog for the ham dinner, but I just haven't had the time to sit down and really come up with what we want to say.  So here it goes!!!

The ham dinner benefit last week was a huge success!  This was only possible with the help of all of you.  From the cooks, to the drivers, to the people who bought plates, to the ticket sellers, to the volunteers, to the cake bakers, to the organizers, to the donors, and even to the ones who didn't get a plate because we were sold out - all of you made this possible. 

I believe the organizers thought they might sell around 1200 plates total.  I am not sure of the final count, but I heard it was between 1500-1600 plates approximately.  Trent said they had to go back and buy food 2-3 more times!  Instead of having lots of people driving all of their cars to deliver plates, a local restaurant let us borrow their catering vans to deliver plates.  Local grocery stores donated food and gave discounts.  Volunteers taped our thank you notes to each plate until we ran out of notes. 

Trent was there in the middle of all of it and I know how exhausted he was.  I know each and every other volunteer was just as exhausted as he was.  We hope everyone enjoyed the delicious ham!  And for those of you who sent donations but didn't get a plate, thank you too!  Sorry you missed out on the great food, but we still appreciate your donation! 

We have discovered that in situations like this, it really brings out the best in everyone.  There were so many people from different backgrounds that worked together hand in hand.  The outpouring of kindness was overwhelming. 

Our family cannot express how much everyone means to us and how thankful we are to everyone.  Trent and I are usually on the other side of the fence volunteering to help others.  We enjoy helping others and doing what we can.  We are not used to being the ones being helped.  It is just so overwhelming!!!!!  We hope that we can pay it forward to others some day. 

Although Claire cannot say how she feels, one day I know she will hear the story of this benefit in her honor and be as overwhelmed as we are now.  She will know how each and every one of you loved her enough to sacrifice your time and effort to support her and her family.  She will know what it means to have a family and community that loves one another.  Claire and her family will always hold a special place in our hearts for all of you - even the ones we don't know. 

There are just so many people who were involved that we don't even have a clue.  But thank you to everyone.  I wish we could write thank you notes to every one of you.  We would do it if we knew we wouldn't leave a single person out.  But that's impossible! 

So, once again, THANK YOU!!!!!!!!!!!!!!!!!!!  We know these words are not enough.

Love,
The Scott Family

Thursday, November 18, 2010

Flower Child





video




Today was a good day for Claire.  It started out by Granny and Big Daddy surprising Aunt Amanda with a new car for her hard work in school.  Claire cannot wait to be the first baby to ride in the new car!!   So Big Daddy also brought Mrs. Ann with him today!  Claire had lots of fun visiting with Big Daddy and Mrs. Ann.  We even caught a few videos of her today.  The one above was when the physical therapist came by to visit.  She was teaching Claire and me about extension and flexion of muscles and stress signals.  You can see her working with Claire's legs and moving them back and forth.  Claire slept the whole time so she wasn't very interactive!  Oh well, she did good anyway!

When we arrived today, Claire had messed up her ladybug outfit, so the nurse put on the flower outfit from Great Aunt Connie and the pink hat from Great Aunt Doe.  She looked so cute in her flowers!  She got lots of comments on her outfit.  She has a huge bag of preemie clothes now - more outfits than I have!  She probably has one for each day of the month. 

Please continue to pray for Claire each day as she keeps growing and amazing all of us!

Love,
The Scott Family






Wednesday, November 17, 2010

6 weeks and wireless (sort of)

Today is Claire's 6 week birthday!  She weighed 4 lbs 15.5 oz - ALMOST 5 pounds!  Today was the first day in a very long time that Claire did not have any tubes in her nose or mouth. We could look at her beautiful face without any tape or tubes!  I also was able to give her a bath today.  It was the first time I have been able to do that or even see her get a bath.  It was so much fun.  She loved it!  So the nurse took off ALL of her wires!  All except her IV.  It was so neat to see her without all of the leads and probes attached to her little body.  I had to kiss all over her!  Then we had to rewire her.  :(

The doctor said that her xray today looked "beautiful" and on the radiologists "scare scale" she is a zero.  So that is good news!  They will do one more xray at 4 am and if it looks good, then they will wait a few days before doing another one.  The doctor also mentioned they would probably start Claire back on a broken down formula instead of breast milk to see how she does.  That will hopefully be early next week.

We are hoping for another good day tomorrow full of suprises!

Love,

The Scott Family


NO TUBES ON MY FACE!




getting ready for my bath



bath time!



All clean!


I'm so hungry, I could eat my mom's face as she's trying to give me kisses!


getting rewired



My new outfit with ladybugs


Tuesday, November 16, 2010

Claire Bear

Claire Bear has become Claire's theme up at Duke.  The nurses have it written on her bottle warmer and insist on putting a teddy bear blanket in her bassinet all the time.  We brought home the blanket that was especially made for Claire with her name and birth date on it, and the nurse quickly replaced it with another teddy bear blanket. 

Claire has been sleeping most of the day.  After such a busy day yesterday with tests and they said she had a fussy night, she must be catching up on her sleep.  I was able to hold her for about 3 hours today, which was really nice since I didn't get to hold her at all yesterday. 

Big Daddy came up today for a quick visit.  He had to get back to work because one of his tractors wasn't working.  But it was very nice to see him!  And Claire thought so too! 

The doctors reported on the xrays and ultrasound today.  They said the xrays are still looking the same.  There is a small portion of her lower intestine that looks like it may have air in it and looks "strange".  They still don't think it's the NEC, but are keeping a close eye on it to make sure it doesn't turn into that.  They seem to think that Claire's Tetralogy of Fallot could have caused it. With TOF, Claire's heart can have a hard time pumping and circulating the blood to all parts of her body.  So they think that the lower bowel could have been deprived of some blood causing the inflammation and blood in her stool.  The other idea would be that she had an allergic reaction to the breast milk that caused the inflammation and irritation.  They really don't know which one it is.  But once they give her stomach and bowel time to rest and heal, they will start back with a very small amount of breast milk to see what it does.  The doctor said it should immediately bother her if the milk is what is causing the inflammation and bleeding.  If that doesn't happen, then they will assume it was the TOF causing low blood flow. 

Claire weighed 4 lbs 13 oz last night!  Three more ounces and she will be at 5 pounds!  She is doing excellent at growing.  Trent and I are so extremely proud of Claire.  She is such a fighter and is so brave. 

Thank you so much for the continued prayers!  And we are waiting for someone to send us some pictures of the ham dinner to make a separate thank you post, but THANKS again for all of your support with the ham dinner!  You all know who you are!!!!!!!!!!!

Love,
The Scott Family



my animal print outfit

Giving Momma some snuggle time

Me and Big Daddy

Monday, November 15, 2010

Follow up post

Today when I got to the hospital, I found the sweetest, most beautiful little girl waiting on me.  She is just too precious for words.  She was sleeping so soundly and looked so comfortable.  She had an ok night so I had hurried in this morning so I could be there right at 7:30 am to check on her.  She had another bloody stool for me this morning so they were a little concerned.  She also had a very small amount of red blood in her replogle. 

At rounds today, the doctors said they still think it's  more than likely an allergy to her milk that has caused the irritation in her bowels.  The xrays are coming back normal, her bowel sounds are normal, and her blood work so far has been normal.  These are all good signs of nothing major wrong.  They have decided to hold off on her milk for about a week to give her stomach and bowels time to heal and rest.  She will be getting her nutrition through her IV.

We were also concerned that her hematocrit was low (29).  Since she is obviously losing blood in her stool and they are drawing blood from her for labs, we suggested another blood transfusion so she wouldn't get into trouble with her blood.  So Claire is getting a transfusion at this time. 

I was also successful in getting them to agree to do a liver ultrasound!!!!!!  Can you believe it!?  They still don't think the cyst has anything to do with what is going on, but they are ruling out everything else, so why not that.  I was there when the tech did the US and my amateur eye noticed the cysts looks slightly bigger and instead of 2 cysts, I saw 3.  She also had another xray done of her abdomen.  Neither of these tests have come back yet.  I will be checking on them soon!

We do have a special request today for prayer for one of Claire's friends in ICN.  Her name is Eliza.  She is the only surviving baby of triplets born at 24 weeks.  She has been in ICN for about 9 weeks now.  Claire and Eliza were roommates for a while and BFFs.  Claire looks like a giant compared to Eliza b/c Eliza is still less than 2 pounds.  She has had a tough go, but is a fighter.  But her mom said she was having a tough time this week.  Please pray for Eliza and her family. 

Ok, so here are some pictures from the weekend that I promised!!

Love,
The Scott Family



Hunting with Trent

Zach and Layn at the ham dinner

Claire Rose Scott Benefit Ham Dinner


Claire's nursery

farm animal theme!

lots of clean clothes ready for Claire


"I love to reach for the camera!"



My Missy Momma and Me



Loch Ness Monster (long post)

Probably the very first "real" roller coaster I rode on (and last) was the Loch Ness Monster at Busch Gardens.  I hate roller coasters!  But I feel like this past weekend has been worse than being at Busch Gardens!  Friday started out rocky with Claire still not feeling great due to having the replogle still in her nose and no food. Plus I was anxious because I had my month follow up and was going home for the weekend. 

Well, Claire was able to have the replogle taken out and her feeds started back by lunch time which was great!  I went to my appointment and was told Claire and I were "anomolies" to say the least.  I am not sure how much y'all know about all that I went through, but to sum it up a little, I had severe placental hydrops, polyhydramnios, HELLP Syndrome and severe pre-eclampsia.  The severe placental hydrops is just part of what was wrong with my placenta.  We started out thinking it was a placental mass of cysts, then a placental mass of aneurysms. (Luckily, finding this ended up being the catalyst to see the Tetralogy of Fallot in Claire).  Well, turns out when they sent my placenta off to be tested after birth, they came up with lots of things wrong with it.  Of course it had the severe hyrops (or large fluid filled cysts).  These were not only in the "mass" part that they thought they saw, but all over the placenta.  Other words used to describe it by the doctor were gritty, grainy, in pieces, impossible to analyze, etc.  It was also extremely large and swollen.  My placenta weighed 805 grams at 29 weeks.  A normal 40 week placenta weighs about 500 grams.   What caused all of this??  They don't know.  Will this happen to me every time?? They can't tell me. 

The polyhydramnios is basically too much amniotic fluid.  The doctorst think this was caused by Claire's cyst.  It was so large in-utero, that it was pressing on her stomach and not allowing her to swallow and process the fluid.  So it backed up in my belly.  The Thursday after I went into labor, they drew over a liter of amniotic fluid out of me.  This helped the contractions to stop.   This condition only happens in about 1-2% of pregnancies.  Yay me! 

The HELLP Syndrome is (I think) basically a step worse than severe pre-eclampsia.  HELLP stands for (H) Hemolysis, in which red blood cells are destroyed too soon causing low red-blood cell count; (EL) elevated liver enzymes which indicates the liver is functioning poorly and is unable to process toxins in the body efficiently; and (LP) low platelet count which makes it difficult for the blood to form clots.  It is life threatening to the mother and the baby.  It only occurs in fewer than 1 in 10 preeclamptic or eclamptic pregnancies and fewer than 1 in 500 pregnancies.  Yay me again!  When I asked if I would have this again, I was told it was likely, but they really can't say.  In my book, it says anyone who has had HELLP in a previous pregnancy is likely to have it again. 

I also asked if Claire's cyst had anything to do with my placental cysts b/c the sound so much alike.  And it wasn't long after we found my cysts that we found Claire's cysts.  We were told the week before she was born, that we may have Mirroring Syndrome where our bodies were copying each other.  But they don't know for sure if our cysts have anything to do with each other or not.

So after we went through all of that, I was given a clean bill of health!  :)  For now at least!  So I went home to the Claire Scott Ham Dinner Benefit.  I had been sent pictures of all of the people there and was just overwhelmed.  Then when I got there, I was even more overwhelmed at all of the hard work that so many people had put into this for our daughter.  Everyone was exhausted but still working so hard all day long.  We were sold out of ham plates by 4:30!  They estimated they sold over 1500 plates!!  We were amazed.  Thank you to everyone involved in the dinner from the start to the finish.  We will be doing a separate Thank You post soon....with pictures!!  But please know we were and are so grateful!!!! 

I also got to spend the entire weekend with my husband!  It was so nice.  We haven't been able to just be together since September 28th.  It was long overdue to spend time together doing our normal things like going out to eat, hunting on the farm, napping on the couch, etc.  I even got Claire's crib bedding put together!  I love it!  Pictures of this to come later too. 

Claire's Missy Momma and Great Aunt Doe came to visit her this weekend too.  She loved it and so did they!  Missy Momma got to hold Claire for the first time.  I am sure they both enjoyed it tremendously!!!  Claire had a pretty good weekend.  She had been eating all weekend and acting like herself. 

When I got back tonight, she had a large stool.  So I changed her diaper and gave it to the nurse.  I even had to change her outfit b/c she had messed it up.  I didn't mind though b/c she has the cutest clothes!  The nurse came back with her diaper and said there was some blood in it.  My heart sank.  I knew this meant no food, replogle back in, and IV.  I just cried.  All of those things happened and Claire is not happy.  She just cried and cried - and I just cried and cried right along with her!  These nurses and doctors probably think I am the biggest emotional train wreck they have seen.  They did another xray and it came back the same as the last one they did last week.  They drew blood and the white blood count is ok.  Her hemtocrit is 29.  They don't think they need to transfuse her yet.  I thought they did since last time it was 28 and she became lethargic and sick. 

They will do another xray at 4 am.  They have no idea where the blood is coming from which is totally stressing us out.  I have asked if the cyst could be pressing on her bowels and irritating them and causing the blood.  They don't think so.  I asked if the cyst could be restricting blood flow to her bowels, causing the inflammation and blood.  They don't know.  I asked if her heart could not be pumping enough blood to her intestines causing the same issues.  They don't know.  I have pretty much begged for a liver ultrasound today. The doctor said she would talk to the team in the morning when all of the other doctors and techs and radiologists were here.  I am praying they will check it out tomorrow. 

It's so overwhelming not knowing what to ask, how far to push, how many times to ask, what is wrong with your child, etc.  I am praying the doctors find an answer and that it's a simple fix.  It could be something as simple as food irritation.  Who knows!  We are just ready for Claire to feel good and happy and healthy. 

I just talked to the nurse and they are going to do another urine culture tonight to check for a UTI.  She is back on the 2 antibiotics and IV fluids tonight.  She also had another large stool, but no blood this time.  

We have lots of pictures to post, but I left the camera in the car tonight.  So I will attempt to post tomorrow depending on how the day goes.  Please keep Claire in your prayers as always!!!

Love,
The Scott Family

Saturday, November 13, 2010

THANK YOU (from Claire)

Good Morning to all my family and friends!

The angels told me told me this morning that everyone worked so hard at the Ham Dinner to support me and my parents! THANK YOU!! My Mommy and Daddy can't even believe how many people came out to support us. I saw tears in their eyes and they told me it was because they felt so loved and humbled by God's amazing grace.  I heard that the volunteers sold OVER 1400 plates and that by 4:30pm yesterday they had sold out of food!! One day I hope the firefighters let me play on the big trucks!!! :)

I can't wait to come home and meet everyone that has prayed for me, loved me, supported me, and was a part of this amazing fundraiser on my behalf! I am doing better. My Aunt Julie and Aunt Amanda visited me last night. I have that uncomfortable tube out of my throat and now I can sleep and eat again (thank goodness!). My Missy Momma (Daddy's Mom) and my Great Aunt Doe are coming to Duke to spend the weekend with me! Yah! That means I will get doubly spoiled all weekend!! :)

I know Mommy will be back soon and will update the blog again, but I just couldn't wait...I wanted to tell you all THANK YOU!! I LOVE YOU ALL!!

Love,
Ms. Claire (bear)
:)

Thursday, November 11, 2010

Getting better

Claire has had a little better day today.  Her day nurse switched her replogle to her nose and she rested much better today.  It's still uncomfortable for her, but she is not gagging on the tube.  The C. Diff test results came back today and were negative, so Claire has moved to a regular room and is no longer on contact isolation.  She is still not feeding yet though.  She will have another abdomen xray at 4 am to see if there is any difference from the one they did at 4 am this morning.  That one showed improvement, so we are hoping the next one will too. 

I am hoping to be able to head home tomorrow for the weekend.  Claire will be in good hands this weekend with her nurses and family watching after her. 

We are so thankful to everyone who is helping with the ham dinner tomorrow.  We know that it takes a lot of time and sacrifice to make something like this event happen and be successful.  All of the planning and hard work is greatly appreciated by so many.  We will probably never know everyone who has done something for the dinner or everyone who has purchased a plate or donated something.  But please know that whoever you are, you will always be appreciated.  And we cannot wait until Claire can hear the stories of how so many people cared about her that they did all of these things for her - a sweet little baby girl from Jones County. 

These past 6 weeks have been a journey.  Never in our wildest dreams did we think we would be experiencing all of this.  But we are so thankful for the wonderful gift God has given us and entrusted to us.  She is more beautiful every day and the best blessing we have ever received.  You just don't understand what life is like for an ICU baby and his or her family until you experience it.  Not having control of when you can hold your baby and for how long, having to call throughout the night and day to check on her progress, worrying from afar about her, being pregnant and giving birth and not being able to leave the hospital with your child, decorating her nursery knowing it could be months before she's able to be tucked in her own crib, not knowing what it's like to hold your child without about 10 tubes and wires attached to her that get tangled every time you hold her, seeing your child's face for a few hours without any tubes attached seems strange, trusting nurses and doctors that you have never met with your child's life every day when you leave her at the hospital, having your child be 5 weeks old and never have given her a bath, having to check in at a reception desk and ask permission to see your child, having to wash your hands 5 million times a day and wear a hospital gown to even be able to see your daughter, living in a place where you hardly know anyone and have to use a GPS to find anything, having your child experience illnesses and pain that even you have never dealt with, and the three of you not being able to be together as a family other than in a hospital room with lots of other people.  These things will soon be a distant memory but will have changed our lives forever.  Thank you, God, for Claire and for our friends and family!!!!  We are so incredibly blessed.  Claire is the best thing that has ever happened in our lives and is worth every minute we spend away from home and every dollar we will spend at Duke.  We are so appreciative for the awesome doctors and nurses who love Claire as if she was their own child.  We just cannot express how much in love we are with our sweet baby girl. 

Now that I have written the longest blog post in history, I am headed to get more things done and to call and check on Claire Bear.  We hope to see you at the ham dinner tomorrow!  Please be sure to thank the cooks, delivery drivers, or anyone you see that has helped to organize this benefit for Claire.  And enjoy the wonderful food!!!!! 

Love,
The Scott Family



God Bless You

Quick update on Claire:  We really don't know anything different from yesterday.  They have done several more xrays throughout the night.  The nurse said the one from 8 pm "unofficially" looked a little better with less air in her bowels.  This is probably because they put a replogle tube in Claire's mouth. It's a suction tube that is inserted through her mouth down to her stomach.  It suctions out air and any juices in her belly to keep them from being digested and passed through her bowels.  She HATES this tube and so do I!  It's terrible and makes her gag and very uncomfortable.  It just breaks my heart.  She still has not stooled yet, so they haven't been able to get a sample sent off to test the C.diff.  She is acting very hungry and alert though.  But she cried more last night than I have heard her cry in long time.  She just can't get comfortable and her belly hurts (and she's hungry).

On another note, we just wanted to take a minute to sincerely thank each and every person who has prayed for us, sent a card/note, sold a ham dinner ticket or told people about it, sent gifts for Claire, sent money or gift cards for us for gas and food, read the blog, sent an email, made a phone call, commented on the blog or Facebook, and any other thing we are leaving out.  When I started trying to think of how to word this post (which is amazing for me because I usually just type as I go!), I realized that the words "thank you" were just not enough.  They just didn't express the absolute feelings that we feel for each of you.  I really thought there just are no words to describe how we feel.  So I racked my brain as to the right words that would work.  Immediately I knew what to say - what would mean more than "thank you" and would be doing something more than just showing our appreciation. 

So instead of "thank you" we are saying to you, "God bless you."  We hope God blesses each and every one of you for all that you have done and will do for us and Claire.  We think there are no better words to show our gratitude to you than to ask God's blessings upon you that you may also experience being blessed as we have by all of you. 

Don't forget your ham dinner plate tomorrow!  They will be delicious and are helping a sweet baby girl that cannot even comprehend the magnitude of the love for her.  We cannot wait to tell her one day about all of this being done just for her.  Please continue to pray for Claire today that the doctors can figure out what is going on her her body and help her heal quickly. 

God bless each and every one of you.

Love,
The Scott Family

Wednesday, November 10, 2010

Update from Rebecca: Blood found in Claire's stool

Rebecca just called and said around 4 AM she got a phone call from the doctors saying that they found a moderate amount of blood in Claire's stool this morning.  She also had another bowel movement a few hours later and they found a smaller amount of blood.

They have been running tests all morning and afternoon but we still have no heard any answers.  They are waiting for Claire to have another bowel movement so they are able to run more tests.

So far they have not been able to rule anything out other then it not being a perforated bowel after they took some x-rays.  There seemed to be lots of different causes for the blood in her stool such as: viral or bacterial infection, irritation from food, allergy to milk, C. diff, and many others.  They do not think it has anything to do with the liver once again.  They are thinking and hoping that it might be an irritated, inflamed bowel.  They did take some blood to run a few tests and they all came back normal.  


The doctors do not believe that it is anything too serious (and I say that lightly since they do not know what it is at this time) and we will probably not find out any results until tomorrow at the earliest.  They had to move Claire back into the ICN (we hope she does not get transferred back in the the TCN haha) and is in a room to herself in case she has an infection.  She is also back on contact isolation so we are having to wear gloves and gowns again.  They have a tube through her mouth into her stomach to release the excess air that is in her stomach.  They have stopped her feeds since this morning and have hooked her back up to the IV fluids until they can rule out an allergy to the milk.  


Rebecca said that Claire is acting normal and does not seem to be in any pain from all of this.  Rebecca has been able to hold her and see her since they got there this morning.


We ask that you keep the Scott family in your prayers as always.  We all have testimony that they have worked each and everyday throughout out time here at Duke.  We know that Miss Claire really appreciates everyones kind thoughts and prayers as she is waiting to find out what is causing her bloody stool.  



Tuesday, November 9, 2010

Calling all bakers and drivers!!!

The ham dinner preparations are going well!  Thanks to everyone helping out with this dinner.  There are so many of you, we don't even know where to start!

The departments had a meeting tonight and are still in need of pound cakes and delivery drivers for Friday.  If you can make a pound cake (or 2 or 3) or if you can buy one to donate, please contact Kay Dentico and let her know.  You will be able to drop the cakes off at Rhems VFD after 5 pm on Thursday.  Also, if you have time and would like to help deliver plates, call Kay and let her know ASAP so they will know how to plan.  Kay's number is 252-671-6684.

THANK YOU IN ADVANCE!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Love,
The Scott Family

Short post with pictures

Today was another good day for Claire.  She is eating and growing - just what the doctor ordered!  She weighs about 2020 grams tonight - I think that converts close to 4 lbs 7.5 oz.  She also had her head ultrasound today and the doctor said it looked good.  There was no new brain bleeds or anything that showed up.  And the bleed that they saw a month ago is still there but has not gotten bigger and has started to dissolve.  Claire also had her first eye exam to check for Retinopathy of Prematurity (ROP) and any other eye issues.  The doctor said her eyes looked good and there was no sign of ROP.   They will do a routine eye exam every so often up to 41 weeks.  I watched the eye exam, but wish I had not!  It was terrible to watch!  I am not a fan of eye balls anyway.....  Oh, and they moved Claire back to the TCN tonight as well!

Enjoy the pictures of the past few days!

Love,
The Scott Family

Yummy!

our sweet baby girl

Aunt Mimi, Claire, and Mommy

bright eyes

My new feeding tube since I ripped the other one out....

Eskimo kisses

my bassinet

saying goodnight

My new blanket from Mrs. Cathy and Mr. Claude

My nurse put my blanket in my bassinet for me to sleep on!

Claire Bear's bottle warmer