Last night, Claire weighed 4 lbs 5 oz! Yay! She's still growing after all that she's been through these past few days. She ate more from a bottle last night and this morning. She's not so sure she likes having to work to get her food. It tires her out quickly, but the doctors called her "old" this morning (and he told me not to tell her that he called her that!). He said she needed to be learning how to eat by mouth. This is a skill she HAS to have before she can come home.
I finally found some preemie clothes today and bought the very first piece of baby clothing for our child. I haven't purchased any baby clothes yet until today. Originally, I just didn't know how to buy them - we didn't know how big she would be in December when she was supposed to born, so I didn't get exactly how I was supposed to buy clothes for her based on size and season. So now that she's here and we know she's in preemie clothes, you cannot find them ANYWHERE! Not even in Raleigh or Durham! The only place that has a few preemie clothes is Babies R Us. So I bought Claire 2 new outfits today. I can't wait for her to wear them!
I am also hoping when we go back to the hospital tonight that she will be out of contact isolation. They did this to protect Claire and others in case she had a staph infection. But they are seriously thinking she only has a UTI and that the staph that showed up in the lab results came from either Claire's skin or the nurses skin when getting the urine sample (they said everyone has staph on their skin). So the doctors just think the urine culture was contaminated. They were doing another culture today and once it comes back (hopefully this afternoon), they will plan to take her out of isolation.
Oh, and Claire found her thumb today and was sucking her thumb. It was just the cutest thing I have seen! She didn't do it long, but it showed me she is learning to self-soothe. She is almost to the magic 34 weeks where so many things should happen for her developmentally. Also, tomorrow she should have a head ultrasound to check the brain bleed they saw when she was born and she should have her eye exam this week. So much going on!
Don't forget to buy your ticket for a yummy ham dinner on Friday!!!!
Love,
The Scott Family
Monday, November 8, 2010
Sunday, November 7, 2010
Quick update
Claire is feeling better today. She is back on her feeds and has been more alert today. I got to feed her with a bottle today and she ate 19 out of 24 mLs. She did GREAT!
The doctors think that Claire has a UTI. If she does have something viral too, it will "pass" they said. The antibiotics should be helping the UTI.
Please keep her in your prayers! She will be having an eye exam and an ultrasound of her head this coming week (to check the brain bleed).
Love,
The Scott Family
The doctors think that Claire has a UTI. If she does have something viral too, it will "pass" they said. The antibiotics should be helping the UTI.
Please keep her in your prayers! She will be having an eye exam and an ultrasound of her head this coming week (to check the brain bleed).
Love,
The Scott Family
Remember Claire's Benefit Dinner THIS Friday!
Good Morning!
I thought we needed a little face-lift on the blog! :)
Please remember the Ham Dinner Benefit this Friday (November 12th) at Rhems Volunteer Fire Department! All the proceeds go to little Miss Claire Bear's growing medical bills. Although we think she is PRICELESS, the insurance companies would like her to be worth more $$$ than I'll ever see in my lifetime! haha
Encourage your workplace, neighborhood, friends and family to participate! If you can't make it and would like to make a donation, you can mail your donation to the fire department; but be sure to put in the Memo Line that the donation is for the "Claire Scott Benefit."
Hopefully Claire will be doing better by Friday. (Please God!) Rebecca would love to be home to see you all at the dinner! Trent will likely be there. They both are very grateful for everyone's willingness to volunteer their time and donate to this cause. Rebecca and Trent really need your love, support, and encouragement through this!
Love,
Julie
I thought we needed a little face-lift on the blog! :)
Please remember the Ham Dinner Benefit this Friday (November 12th) at Rhems Volunteer Fire Department! All the proceeds go to little Miss Claire Bear's growing medical bills. Although we think she is PRICELESS, the insurance companies would like her to be worth more $$$ than I'll ever see in my lifetime! haha
Encourage your workplace, neighborhood, friends and family to participate! If you can't make it and would like to make a donation, you can mail your donation to the fire department; but be sure to put in the Memo Line that the donation is for the "Claire Scott Benefit."
Hopefully Claire will be doing better by Friday. (Please God!) Rebecca would love to be home to see you all at the dinner! Trent will likely be there. They both are very grateful for everyone's willingness to volunteer their time and donate to this cause. Rebecca and Trent really need your love, support, and encouragement through this!
Love,
Julie
Saturday, November 6, 2010
1 Month Old
Today was Claire's 1 month birthday! She was doing a little better today, but has been battling some sickness and the liver cyst. It's been a frustrating few days for all of us trying to figure out what is going on with Claire and trying to "fix" it.
Claire has been through lots of labs, an ultrasound, a chest x-ray, and no food for the past 2 days. She has been under the weather but we hope she is getting better. We do ask that visitors are limited for a little while until Claire can catch back up to speed and start feeling like herself again.
The doctors think that she has some sort of viral infection. They are not sure what it is yet (and not really sure they will figure it out). But they are treating her with antibiotics just in case it is a bacterial infection. I have been really frustrated because we feel like her liver cyst has somewhat been ignored. They know it's there, but they don't really check it out as well as we would like by ultrasounds. But they finally did an US today and the cyst is back (probably has been back since it was last drained 2 weeks ago) and is a little bigger than it was then. The issue is that Claire is 1 lb heavier so when you look at her belly, it doesn't look as distended as it did last time. So her body is masking the cyst better visually.
We are working hard to try to keep the cyst at the front of the doctors' minds. I told the doctor tonight that Claire has cardiologists that check her heart at least once a day. She has their team that checks her overall stability every day. But there is no one who checks her liver cyst every day. The nurses measure her girth at each assessment and also feel her belly, but everyone is different and measures different. So it's not very reliable. They still don't have a real plan for the cyst yet. Just that she has to be a lot bigger to do any permanent fixes.
Sometimes I think the parent's instincts are much better than any text book diagnosis. They do seem to listen to us parents a lot of the time. I guess we are just a little more frustrated with some things since no one really seems to know what her cyst is and why it's there. The fear of the unknown is scary!
So we are praying for Claire's health and quick recovery; knowledge and understanding for the doctors, nurses, and us; and for God to continue to give us all strength.
Love,
The Scott Family
Claire has been through lots of labs, an ultrasound, a chest x-ray, and no food for the past 2 days. She has been under the weather but we hope she is getting better. We do ask that visitors are limited for a little while until Claire can catch back up to speed and start feeling like herself again.
The doctors think that she has some sort of viral infection. They are not sure what it is yet (and not really sure they will figure it out). But they are treating her with antibiotics just in case it is a bacterial infection. I have been really frustrated because we feel like her liver cyst has somewhat been ignored. They know it's there, but they don't really check it out as well as we would like by ultrasounds. But they finally did an US today and the cyst is back (probably has been back since it was last drained 2 weeks ago) and is a little bigger than it was then. The issue is that Claire is 1 lb heavier so when you look at her belly, it doesn't look as distended as it did last time. So her body is masking the cyst better visually.
We are working hard to try to keep the cyst at the front of the doctors' minds. I told the doctor tonight that Claire has cardiologists that check her heart at least once a day. She has their team that checks her overall stability every day. But there is no one who checks her liver cyst every day. The nurses measure her girth at each assessment and also feel her belly, but everyone is different and measures different. So it's not very reliable. They still don't have a real plan for the cyst yet. Just that she has to be a lot bigger to do any permanent fixes.
Sometimes I think the parent's instincts are much better than any text book diagnosis. They do seem to listen to us parents a lot of the time. I guess we are just a little more frustrated with some things since no one really seems to know what her cyst is and why it's there. The fear of the unknown is scary!
So we are praying for Claire's health and quick recovery; knowledge and understanding for the doctors, nurses, and us; and for God to continue to give us all strength.
Love,
The Scott Family
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| My new IV |
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| Surprise visit from Daddy! |
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| One month old today! |
 "I can hold my own paci today on my 1 month birthday! I'm such a big girl!" |
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| sweet kisses |
Friday, November 5, 2010
Spoke too soon!
It has been quite an eventful day for Claire. It seems that it started around 10:30 AM when the doctors ordered Claire to have another blood transfusion. Claire has had many apnea and rapid breathing spells and Bradycardia episodes overnight and this morning and they seemed to get worse around 3 PM (which is kinda abnormal for Claire these days). The doctors checked Claire's hermaticrit and caffeine levels and found that her caffeine levels came back normal but her hermaticrit (red blood cells) count was low; 27. They want to see this number somewhere between 35-40. For the blood transfusion, they had to put an IV line through Clarie's foot to transfer to new blood. They also had to give Claire a does of Lasix which will help with the excess fluid build up in her body.
Around 6:30 PM tonight, the doctors decided to do an ultrasound on the liver and also an Echocardiogram on Claire's heart to see what was going on. They found out that the liver was back up to about 6 cms which is the same size that it was at the last draining. They also found that the pulmonary artery from the heart had narrowed some since the last time they checked it. However, they said that was "normal" and believe that it is the liver cyst causing all of the apnea spells and bradys.
As of now, they have not said what their plans are and whether or not they will have to drain it again. Unfortunately, this all means that Claire has been moved back down to the ICN (Intensive Care Nursery) where she use to "live". As Rebecca said tonight, we spoke to soon when we said we were having another "boring (uneventful)" day at Duke. We will never say that again :) Claire is going to remain in her crib, but they have placed her on a heating blanket to keep her temperature up since it was dropping. Claire is also on a catheter and they will be testing her urine to make sure there is no sign of infections. She will be off of her feeds for at least 12 hours after her transfusion so hopefully Rebecca can start nursing starting again tomorrow.
Rebecca and Treat really appreciate all of the prayers and sweet thoughts that truly get them through the day. It is hard to see the good somethings when so many stressful things are happening all around you. Claire is such a fighter and sure does know how to let the doctors know that something is just not "right" and we are thankful that she is able to do so. If it wasn't for Claire having all of these episodes, we would not know what was happening inside her tiny tummy! Please keep everyone in your prayers as they try to figure out what to do next with little miss Claire bear :)
Love,
Aunt Mimi
Thursday, November 4, 2010
10:30 pm update
When I called to check on Claire around 5:30 pm today, the nurse said she had just experienced an episode of apneas and bradys again. She sounded a little concerned and apologized for the "bad news". So I went into worry-mode and we went on back to the hospital. We go back every night anyways, so that's nothing new. I was just a little more anxious tonight than I have been in about a week!
We talked to Claire's doctor when we arrived and they had already drawn labs. She said her caffiene level was fine but her hematocrit was borderline low. So they plan to watch her throughout the night to see how she does. If she seems to have more As and Bs, they will probably give her another blood transfusion. The nurse that she has tonight is awesome and is watching her closely to see if the As and Bs could be caused by her feeds too. I will definitely be checking up on her tonight (which is also nothing new - surprise, surprise to the ones who know me!).
A cute surprise was that Claire had on new toboggan tonight! SO cute! I sure wish I could knit or crochet b/c I would be making her so many hats. I never thought I would be a hat person, but these knitted/crocheted toboggans are just too cute. Especially the preemie size ones that fit her perfectly. Check out the one tonight. I kept calling her my little snow bunny. We also read her a book from Aunt Mimi/Manda and Colby about farm animals. She loved it! Oh, and she also weighed 4 lbs 4 ounces. She's growing like a weed (a USDA certified organic one at that).
So we will be praying for a good night tonight!
Goodnight!
The Scott Family
PS - I got a little obsessed with taking pictures tonight of her new hat.......but she was just too cute!
We talked to Claire's doctor when we arrived and they had already drawn labs. She said her caffiene level was fine but her hematocrit was borderline low. So they plan to watch her throughout the night to see how she does. If she seems to have more As and Bs, they will probably give her another blood transfusion. The nurse that she has tonight is awesome and is watching her closely to see if the As and Bs could be caused by her feeds too. I will definitely be checking up on her tonight (which is also nothing new - surprise, surprise to the ones who know me!).
A cute surprise was that Claire had on new toboggan tonight! SO cute! I sure wish I could knit or crochet b/c I would be making her so many hats. I never thought I would be a hat person, but these knitted/crocheted toboggans are just too cute. Especially the preemie size ones that fit her perfectly. Check out the one tonight. I kept calling her my little snow bunny. We also read her a book from Aunt Mimi/Manda and Colby about farm animals. She loved it! Oh, and she also weighed 4 lbs 4 ounces. She's growing like a weed (a USDA certified organic one at that).
So we will be praying for a good night tonight!
Goodnight!
The Scott Family
PS - I got a little obsessed with taking pictures tonight of her new hat.......but she was just too cute!
Today has been yet another good day for Claire! When we got there this morning, she was all bundled up and didn't even squirm when I started loving on her. She was way too comfortable to be woken up. We practiced feedings today and Claire did awesome. The lactation consultant said she could be on a training video! She ended up eating 10 mLs and then got the rest from the syringe.
There is not much to report really except that she is growing, sleeping, eating and being loved. We love the "boring days" when not much happens except weight gain and fun things.
We did want to mention as it gets closer to flu and cold season, please be aware if you feel sick or have been around anyone who has been sick if you plan to come visit. Claire is now in an open crib and doesn't have the protection from the isolette walls and doors. Please get your flu and t-dap shots! Protect yourself and Claire (and all the other babies in the unit).
Also, please check out the photo of the gift below. It was left on Anita's back door a few weeks ago without a card! Let us know if you are the gracious giver of this gift. It had Halloween items for Claire, socks, and clothes in it. We appreciate it and want to be able to thank whoever gave it to Claire!
Thanks for the prayers!!!!!!!
Love,
The Scott Family
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| "Gosh Mom, please stop taking pictures of me!!!" |
There is not much to report really except that she is growing, sleeping, eating and being loved. We love the "boring days" when not much happens except weight gain and fun things.
We did want to mention as it gets closer to flu and cold season, please be aware if you feel sick or have been around anyone who has been sick if you plan to come visit. Claire is now in an open crib and doesn't have the protection from the isolette walls and doors. Please get your flu and t-dap shots! Protect yourself and Claire (and all the other babies in the unit).
Also, please check out the photo of the gift below. It was left on Anita's back door a few weeks ago without a card! Let us know if you are the gracious giver of this gift. It had Halloween items for Claire, socks, and clothes in it. We appreciate it and want to be able to thank whoever gave it to Claire!
Thanks for the prayers!!!!!!!
Love,
The Scott Family
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