Claire was so alert and awake yesterday that today, she slept most of the day. She was up to 6 lbs 8 oz last night and is eating out of a big girl bottle. She is able to eat 2 bottles a day of breast milk and the rest is formula. They are taking it slow to see how her body will react to the breast milk and if she will have any allergic reactions to it. I hope not! Now that she has so much more room in her belly, she's eating around 100 mLs (or about 4 oz) each feeding. Before she could only eat about 40-50 mLs and that was pushing it.
The cardiologists came by today to check on Claire. They are going to start monitoring her more closely now due to the fact that they as well as the surgeons are trying to figure out a plan for Claire's surgeries. They hope they can all get together next week sometime. Our favorite doctor is working so hard on getting this meeting together and we are all so grateful to her. It's not the easiest task to get several doctors from several disciplines together all at once!
I just called to get a night time update, but they had just moved Claire to TCN so I will have to call back. We are hoping her and Eliza are near each other!! Moving to TCN is always scary to us, but we are hoping this time that everything will stay on track.
Thank you for all of the continued prayers and concern. Although we have made it through some tough times, there are some really scary and tough times ahead with the surgeries and all of the decisions that have to be made and risks that have to be weighed. Please continue to pray for Claire and her doctors that God guides them to make the best decisions to help Claire.
Love,
The Scott Family
Wednesday, December 29, 2010
Tuesday, December 28, 2010
Photo Blog
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| Our first Christmas as a family |
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| Claire's First Christmas |
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| Daddy feeding Claire |
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| Stocking from ICN |
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| LOVE |
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| They have each other wrapped around their fingers! |
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| Claire's stocking specially brought to her by her Daddy |
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| presents! |
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| She was scared of Santa! |
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| Daddy and Claire |
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| SNOW at our house on day after Christmas |
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| Granny Mary and Claire |
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| sleeping beauty |
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| Big girl bottle |
Monday, December 27, 2010
Daddy's Little Elf
Since Trent and I are snowed in and cannot get to Duke to see Claire, one of our favorite nurses in the world knew just what we needed last night! When she got home, she emailed us these pictures of our sweet girl. I've already posted them on Facebook and emailed them out! They are too darn cute! She has on her "Daddy's Little Elf" outfit and they posed her with little bows, shoes, her Santa stocking that her Daddy bought her, and her "friends" that she has in her crib. I think she even has on a pair of shoes in one of the pictures - first time ever! Enjoy!!!
Love,
The Scott Family
Love,
The Scott Family
Saturday, December 25, 2010
Merry Christmas!
We decided to go ahead and blog this morning since we plan to spend the day together as a family and probably won't have time to blog today. Merry Christmas to everyone! We are excited about Claire's first Christmas!
We are so thankful for our special gift this year of our daughter. There is nothing that compares to that. She is a special gift from God above. Each day when we get to see her or hold her is like opening the present again and again.
Claire had a good night last night. Due to my severe headache yesterday, I forgot to mention the plans that the doctors are working on for Claire. Basically they are trying to plan a multidisciplinary conference with the neonatologists, cardiologists, surgeons, and radiologists to get every ones ideas, opinions, and thoughts on what to do for Claire's heart and liver.
The doctor yesterday said there are basically 4 courses of action they could take:
1. Check with cardiology to see if Claire's TOF is ok enough to do a 4-5 hour liver surgery to remove the cysts. If so, then they could proceed with the liver surgery. If not, they'd have to take another course of action.
2. Do a temporary procedure of draining the cyst around the stomach and intestines until her TOF is repaired, then do the cyst surgery. I didn't really understand this procedure very well.
3. Keep draining the cyst as they have been doing, but this is definitely not the best option b/c of it's risks.
4. Sclerosis of the cyst. Basically this would be to aspirate the cyst like they have done, then inject some type of material (alcohol) that would make the cyst walls stick together and not allow it to re-accumulate. This would cause it to form like a scar-like material that would stay in there forever. The cyst would not be removed surgically.
The main concern is that they are not 100% sure what these cysts are. They are 99.99% sure they are mesenchymal hamartomas though. A radiologist at Duke that has written a book chapter on liver cysts/masses says she thinks it is definitely a hamartoma. But they don't want to do the sclerosis if it is not benign. I don't think they have gotten any of the labs back on the fluid they have sent off yet. They did draw blood labs yesterday and her electrolytes are perfect. They worry when they drain the cyst that they are taking so much fluid from her that it could strip her body of electrolytes.
I am very stressed that the doctor taking over for the next few weeks will not remain on the path that we've been on this week. We have FINALLY started getting somewhere and I don't want it to stop. That will be my main goal this coming week.
Claire has been eating A LOT since they drained the cyst. Her poor belly actually has room! She was eating on average about 40-50 mLs each feed before the draining. Since the cyst draining, she eats about 60-70 mLs each feed. This is good because more food means growth! And growth is what they need to do surgery. She gained 120 grams last night which is a lot. So she's back up to 6 lbs 4 oz. The nurse said it's probably a combination of the added milk plus probably some re-accumulation of the cyst. I noticed yesterday that her belly button was sticking back out.
I told the nurse that I would really like to be at the multidisciplinary conference. She said it is a possibility and she'd let them know. I probably won't understand anything since they'll be talking in doctor terms! But maybe I will learn something if they let me attend.
The nurse also said she would ask them at rounds this morning if they'd change her feedings to ad lib on demand. She's on ad lib now where she has a minimum amount they want her to eat each day, but she can eat more if she wants it. Ad lib on demand is basically instead of waking her up every 3 hours to eat like they do now, they'd let her wake up on her own (but no longer than 4 hour stretches). This would be nice especially at night if she's sleeping, they wouldn't have to wake her up to eat every 3 hours.
Well, since I forgot to add all of that yesterday, there you go!
Enjoy the day with your family and friends! Merry Christmas!!
PS - I was validated again yesterday by the doctor for my intuitions about Claires's cyst. He announced at rounds yesterday that the lesson learned here was that they as pediatricians should learn to listen to the parent - especially one that is there almost every day! Yay! Now let's just hope the rest of the doctors know this now in our situation......
Love,
The Scott Family
We are so thankful for our special gift this year of our daughter. There is nothing that compares to that. She is a special gift from God above. Each day when we get to see her or hold her is like opening the present again and again.
Claire had a good night last night. Due to my severe headache yesterday, I forgot to mention the plans that the doctors are working on for Claire. Basically they are trying to plan a multidisciplinary conference with the neonatologists, cardiologists, surgeons, and radiologists to get every ones ideas, opinions, and thoughts on what to do for Claire's heart and liver.
The doctor yesterday said there are basically 4 courses of action they could take:
1. Check with cardiology to see if Claire's TOF is ok enough to do a 4-5 hour liver surgery to remove the cysts. If so, then they could proceed with the liver surgery. If not, they'd have to take another course of action.
2. Do a temporary procedure of draining the cyst around the stomach and intestines until her TOF is repaired, then do the cyst surgery. I didn't really understand this procedure very well.
3. Keep draining the cyst as they have been doing, but this is definitely not the best option b/c of it's risks.
4. Sclerosis of the cyst. Basically this would be to aspirate the cyst like they have done, then inject some type of material (alcohol) that would make the cyst walls stick together and not allow it to re-accumulate. This would cause it to form like a scar-like material that would stay in there forever. The cyst would not be removed surgically.
The main concern is that they are not 100% sure what these cysts are. They are 99.99% sure they are mesenchymal hamartomas though. A radiologist at Duke that has written a book chapter on liver cysts/masses says she thinks it is definitely a hamartoma. But they don't want to do the sclerosis if it is not benign. I don't think they have gotten any of the labs back on the fluid they have sent off yet. They did draw blood labs yesterday and her electrolytes are perfect. They worry when they drain the cyst that they are taking so much fluid from her that it could strip her body of electrolytes.
I am very stressed that the doctor taking over for the next few weeks will not remain on the path that we've been on this week. We have FINALLY started getting somewhere and I don't want it to stop. That will be my main goal this coming week.
Claire has been eating A LOT since they drained the cyst. Her poor belly actually has room! She was eating on average about 40-50 mLs each feed before the draining. Since the cyst draining, she eats about 60-70 mLs each feed. This is good because more food means growth! And growth is what they need to do surgery. She gained 120 grams last night which is a lot. So she's back up to 6 lbs 4 oz. The nurse said it's probably a combination of the added milk plus probably some re-accumulation of the cyst. I noticed yesterday that her belly button was sticking back out.
I told the nurse that I would really like to be at the multidisciplinary conference. She said it is a possibility and she'd let them know. I probably won't understand anything since they'll be talking in doctor terms! But maybe I will learn something if they let me attend.
The nurse also said she would ask them at rounds this morning if they'd change her feedings to ad lib on demand. She's on ad lib now where she has a minimum amount they want her to eat each day, but she can eat more if she wants it. Ad lib on demand is basically instead of waking her up every 3 hours to eat like they do now, they'd let her wake up on her own (but no longer than 4 hour stretches). This would be nice especially at night if she's sleeping, they wouldn't have to wake her up to eat every 3 hours.
Well, since I forgot to add all of that yesterday, there you go!
Enjoy the day with your family and friends! Merry Christmas!!
PS - I was validated again yesterday by the doctor for my intuitions about Claires's cyst. He announced at rounds yesterday that the lesson learned here was that they as pediatricians should learn to listen to the parent - especially one that is there almost every day! Yay! Now let's just hope the rest of the doctors know this now in our situation......
Love,
The Scott Family
Friday, December 24, 2010
Christmas Eve
Happy Christmas Eve! Claire had a good day today. She seemed like she could rest more and eat a lot more. Her belly button was poking back out today, but her stomach still looked good. It looked "normal" - not big and round and not flat and wrinkly.
I was able to hold Claire a lot today in a nice recliner chair. I had a headache all day, so it was nice to rest together.
This Christmas will be a lot different than we had imagined. We had originally thought we might be in the hospital based on my due date. Guess we are still in the hospital, but we've been there about 3 months (this coming Wednesday!).
But we have been given the best gift we could ever ask for - our daughter. Thank you Lord and happy birthday Jesus!
Love,
The Scott Family
I was able to hold Claire a lot today in a nice recliner chair. I had a headache all day, so it was nice to rest together.
This Christmas will be a lot different than we had imagined. We had originally thought we might be in the hospital based on my due date. Guess we are still in the hospital, but we've been there about 3 months (this coming Wednesday!).
But we have been given the best gift we could ever ask for - our daughter. Thank you Lord and happy birthday Jesus!
Love,
The Scott Family
Thursday, December 23, 2010
Diet Pepsi
Ever wondered what a 10 x 7 x 7 cm liver cyst looked like? Well, imagine a can of Diet Pepsi and you will be looking at it. The radiologists drained about 345 mLs from Claire's large cyst today and a can of Diet Pepsi is 355 mLs. So basically 12 oz of fluid came out of that huge cyst. We took before and after pictures of Claire's belly so you could see the difference, but the pictures just do not do it justice. Her belly measurements went from 35.5 cm to 31 cm. Her weight went from 3005 grams (6 lbs 10 ounces) down to 2710 grams (5 lbs 15.5 ounces). The grunting and straining noises that she does constantly, were quieted. You just can't imagine the relief she had to feel.
The skin on her belly is now flat and wrinkly from where it was stretched out. Her skin is no longer red/purple from being so stretched and see through with the veins. Her belly button no longer sticks straight up like a thumb - it is laying flat on her stomach. R-E-L-I-E-F......
The radiologist said he was going to make copies of Claire's scans (CT, MRI, etc.) and send to Boston Children's Hospital, the children's hospital in Houston, and maybe one more to get their opinions on what is going on. He said there was a procedure called sclerosis (I think) where they can insert something like alcohol into the cyst to make the walls stick together so the cysts would not reaccumulate. But he is unsure if they can do that with this situation. But he's checking into options which is a great thing!
We finally feel like we are making progress and getting somewhere. I am concerned that the attending doctor that she has had the past 2 weeks that has really got the ball rolling is not going to be her doctor again for a while. These doctors rotate out every 2-3 weeks. So I am praying the new doctor will continue to be aggressive like this one has.
The radiologists could tell from the ultrasound after the draining that the inferior vena cava had sufficient blood flow again. Yay! This is good. Now we just have to pray that the cyst either goes away or doesn't reaccumulate quickly and can buy Claire some time to get a lot bigger and for the surgeons, doctors, cardiologists, and radiologists to come up with a plan.
We are so thankful to the awesome nurses and doctors who took care of this cyst today! On a side note, Claire also passed her hearing screen today so she won't have to be tested again for 1 year.
Thank you for all of your prayers today! They certainly worked. We serve an awesome God. We are so grateful to each and every one of you!
Love,
The Scott Family
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| Before draining of cyst |
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| After draining of cyst |
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| only half of the syringes of fluid drained (pencil in there for perspective) |
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| If you look closely right above Claire's belly button, you can see the whole where they drained the fluid from. |
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| Relief after draining (she went from having to wear size 1 diapers back down to a preemie diaper due to the reduction in her belly size!) |
Wednesday, December 22, 2010
Full Term
According to the doctors, Claire is a full term 40 weeker today! We are such proud parents!
Today was another somewhat busy day. Not as busy as Monday, but equally as taxing on the brain. They decided to do an echocardiogram of Claire's heart and of the vena cava to determine how much blood flow was actually happening. After the neonatologist and the liver surgeon looked at the echo and talked, they said that the cyst was pressing on the vein and showed "diminished" blood flow. We need to do something now to relieve this pressure b/c it's important that her heart gets the blood from the lower part of her body.
Their plan is to talk to radiology in the morning and get them to drain the largest cyst tomorrow. They hope this will buy Claire a few more weeks until something else has to be done. One option is to continue to drain it as needed until after her heart surgery or until they have to do liver surgery.
The liver surgery is much more complicated than originally thought due to the veins in Claire's liver. This will not be a simple surgery. Basically the way the surgeon described Claire's liver to me today is this - everyone has a right lobe and a left lobe of their liver. Claire's entire (85-90%) right lobe has been taken over by the cyst. So basically she does not have a functioning right lobe. The left lobe has a few of the newer small cysts. Based on the way the veins are in her liver, they will have to remove the entire right lobe and part of the left lobe when they do the full surgery (this is the plan at this point).
Luckily, the liver is the only organ in the body that will regenerate itself. So if they cut out part of her liver, the majority of it should grow back. If they get in there and see that they have to take too much of her liver for it to function, then there's a possibility of transplant. But that's not what they are thinking now.
So Claire's body is right now pretty much functioning on only the left lobe of her liver. So if/when they remove the right lobe, it shouldn't be much different than it is now in theory. The surgery could possibly be done in stages like remove the cysts from the left lobe first, then go back and remove the big cyst later. The surgeon has not been able to talk to the cardiologists to get their opinion on it yet, so that information is a very important part of this puzzle.
The resection surgery could last up to 4-5 hours when they do that if they did it all at one time. And recovery time is usually around a week or so. They are fairly certain that the cysts are benign, but cannot be 100% sure until they actually get tissue or remove the cyst and send them off. They are hoping there is a slight chance to obtain some cells in the fluid they drain off tomorrow that could point them in the right direction as to what these cysts are. But it's a slight chance that they would even get anything from the draining. They don't want to biopsy it at this point because there's basically no tissue to biopsy. The cysts are so close to the surface, there is just a thin layer of tissue.
They are still thinking these cysts are the mesenchymal hamartomas. Usually hamartomas are in multiples and can be both fluid filled and not. The unusual thing is that there normally is not one huge dominant cyst like Claire has.
Other than all of this stuff, Claire seems to be doing well. She's eating well and growing and is as beautiful as ever! Last night she weighed 6 lbs 10 oz! She had one of her favorite nurses today, the other favorite nurse was across the hall and checked on her, and she has a great nurse tonight as well! So that makes us feel a lot better.
Claire needs lots of prayers tomorrow for the cyst draining and also as the doctors decide what the plan of action is for her heart and her liver. We know everyone is praying for her constantly and we are so gracious.
Love,
The Scott Family
Today was another somewhat busy day. Not as busy as Monday, but equally as taxing on the brain. They decided to do an echocardiogram of Claire's heart and of the vena cava to determine how much blood flow was actually happening. After the neonatologist and the liver surgeon looked at the echo and talked, they said that the cyst was pressing on the vein and showed "diminished" blood flow. We need to do something now to relieve this pressure b/c it's important that her heart gets the blood from the lower part of her body.
Their plan is to talk to radiology in the morning and get them to drain the largest cyst tomorrow. They hope this will buy Claire a few more weeks until something else has to be done. One option is to continue to drain it as needed until after her heart surgery or until they have to do liver surgery.
The liver surgery is much more complicated than originally thought due to the veins in Claire's liver. This will not be a simple surgery. Basically the way the surgeon described Claire's liver to me today is this - everyone has a right lobe and a left lobe of their liver. Claire's entire (85-90%) right lobe has been taken over by the cyst. So basically she does not have a functioning right lobe. The left lobe has a few of the newer small cysts. Based on the way the veins are in her liver, they will have to remove the entire right lobe and part of the left lobe when they do the full surgery (this is the plan at this point).
Luckily, the liver is the only organ in the body that will regenerate itself. So if they cut out part of her liver, the majority of it should grow back. If they get in there and see that they have to take too much of her liver for it to function, then there's a possibility of transplant. But that's not what they are thinking now.
So Claire's body is right now pretty much functioning on only the left lobe of her liver. So if/when they remove the right lobe, it shouldn't be much different than it is now in theory. The surgery could possibly be done in stages like remove the cysts from the left lobe first, then go back and remove the big cyst later. The surgeon has not been able to talk to the cardiologists to get their opinion on it yet, so that information is a very important part of this puzzle.
The resection surgery could last up to 4-5 hours when they do that if they did it all at one time. And recovery time is usually around a week or so. They are fairly certain that the cysts are benign, but cannot be 100% sure until they actually get tissue or remove the cyst and send them off. They are hoping there is a slight chance to obtain some cells in the fluid they drain off tomorrow that could point them in the right direction as to what these cysts are. But it's a slight chance that they would even get anything from the draining. They don't want to biopsy it at this point because there's basically no tissue to biopsy. The cysts are so close to the surface, there is just a thin layer of tissue.
They are still thinking these cysts are the mesenchymal hamartomas. Usually hamartomas are in multiples and can be both fluid filled and not. The unusual thing is that there normally is not one huge dominant cyst like Claire has.
Other than all of this stuff, Claire seems to be doing well. She's eating well and growing and is as beautiful as ever! Last night she weighed 6 lbs 10 oz! She had one of her favorite nurses today, the other favorite nurse was across the hall and checked on her, and she has a great nurse tonight as well! So that makes us feel a lot better.
Claire needs lots of prayers tomorrow for the cyst draining and also as the doctors decide what the plan of action is for her heart and her liver. We know everyone is praying for her constantly and we are so gracious.
Love,
The Scott Family
Tuesday, December 21, 2010
Feeling like a yo-yo
Several weeks ago, a good friend of mine texted me and said she was listening to Martina McBride's song "In My Daughter's Eyes" and thinking of us. I knew the song and love it, but couldn't remember all of the words. I thought I had the CD since I love Martina, but I searched and searched and couldn't find it. I thought about looking up the words, but knew it would probably give me a heart attack, so I didn't.
Today, Amanda and I were leaving Duke and in the background on the radio, there it was. The song I had wanted to hear but not really. After the past few days, it seemed like a sign. I turned it up so I could really listen and warned Amanda I would probably cry (as she was probably thinking "Oh no, Rebecca is driving and getting ready to burst in to extreme tears!!!). But I held it together as not to embarrass myself and get us in a wreck. It made me realize that I have become such a strong person - stronger than I ever thought I could be. Most of you who know me know that I cry at the drop of a hat. It can be happy tears, sad tears, mad tears, humble tears, whatever tears - you name it. A few of you are scared of me when you know tears will be coming (you know who you are at work.....). So I was quite proud that I did not burst into convulsions listening to the song. Mind you, if I were alone in the car, that would have happened for sure! God knew not to play the song while I was alone though!
But the song is totally appropriate and means more to me know than ever. Our daughter makes us better than we could ever wish to be. Below are the lyrics to the song I am talking about:
"In My Daughter's Eyes"
In my daughter's eyes I am a hero
I am strong and wise and I know no fear
But the truth is plain to see
She was sent to rescue me
I see who I wanna be
In my daughter's eyes
In my daughter's eyes everyone is equal
Darkness turns to light and the
world is at peace
This miracle God gave to me gives me
strength when I am weak
I find reason to believe
In my daughter's eyes
And when she wraps her hand
around my finger
Oh it puts a smile in my heart
Everything becomes a little clearer
I realize what life is all about
It's hangin' on when your heart
has had enough
It's giving more when you feel like giving up
I've seen the light
It's in my daughter's eyes
In my daughter's eyes I can see the future
A reflection of who I am and what will be
Though she'll grow and someday leave
Maybe raise a family
When I'm gone I hope you see how happy
she made me
For I'll be there
In my daughter's eyes
Ok, now that I have read it, I have released the tears!!! :)
Anyways, onto the yo-yo day. Most people talk about yo-yo dieting. This is more like yo-yo emotions.
So after all of the testing yesterday and the beginning of getting some answers, Claire slept so soundly according to the nurses. As of rounds this morning, the doctors were talking about sending Claire home and us just being on the lookout for any signs or symptoms of the cysts affecting Claire. They said I was right and knew when she needed this last ultrasound, so I would know when she would need to be looked at again (small victory!).
Claire had a pretty good morning while we were there. I had to leave early b/c I thought I had a cavity (turns out it wasn't thank God) and as I was telling Claire goodbye (well, really just staring at her in la la land), the doctors walked up. I didn't even notice them where on a normal basis I am constantly on the lookout for them! I could tell on their faces that something wasn't quite right.
The doctors stated that from the CT, it looked like the large cyst was pressing against Claire's vena cava which is the main vessel that carries blood back to her heart. This is a concern they have had since the beginning - making sure the cyst doesn't compress the 2 main vessels - the VC being one. They said this is probably the reason for the lower extremity edema she has been experiencing for a while. Since the cyst will probably continue to grow larger, it could eventually press against the aortic vessel (one that carries blood away from her heart and to her organs). This would not be good because it could cut the blood flow off to her liver or other organs. They do not want blood flow restricted to any organs.
Claire's body has learn to compromise from the restricted blood flow to the vena cava by using other blood vessels. They other blood vessels have somewhat taken over the job of the vena cava. The neonatologists were going to consult again with the liver surgeon and cardiologist to see how this would change the plans. So basically they were saying Claire is not going home now.
I felt a range of emotions - scared that something was wrong, happy that I was right, reassured that they wanted to keep her at Duke to watch her and not send her home with something wrong, sad that we wouldn't be spending Claire's first Christmas at home, and petrified at the thought of what this all meant. Unfortunately, I had to leave and head to the dentist - hence hearing the Martina McBride song.....
Claire had a good afternoon and rested well. I finally called our favorite doctor around 8 to see if she had an update. I always hesitate to call because I know they are all so busy. But she never seems to mind talking to me and answering our questions. We love her! She had talked to the surgeon again and from the CT, the surgeon says the resection would be more complicated than she originally thought due to how the cyst was in the liver versus the veins in the liver. Sigh. She said the surgeon thought at this point it would be ok to send Claire home, but maybe aspirate the cyst first. I freaked out knowing that as much as we want her home, I don't think she's ready!
Our favorite doctor (maybe we should call her OFD for short from now on) told the surgeon that every time the drain the cyst, it comes right back based on the 3 times they've aspirated it. The attending doctor said he wanted to keep Claire at Duke to monitor her, so I am hoping he sticks to his guns.
The surgeon said the earliest that she would be able to do anything would be around January 10th b/c the other liver surgeon was out of town. She is also touching base with the cardiologist as far as Claire's heart and heart surgery go. Ideally she would like for the heart surgery to happen first. OFD said that they have done this kind of surgery before but they have to use "certain techniques" since it's more complicated.
This is so scary! We are just hoping and praying everything will work out like it's supposed to and that Claire is happy, healthy, and home in God's time. Please, please, please continue the prayers for Claire and her doctors. She deserves the best and we are working hard to try to make sure that happens.
Sorry for the long post today! Lots of stuff going on! Please keep the prayers coming. That's the best gift you could ever give to Claire and our family.
Love,
The Scott Family
PS - we did good to get out a few (I mean FEW) Christmas cards this year. We haven't bought any presents for anyone (except Claire's 2 gifts) although we know and wish we could give something to each and every one of you who deserve it. Please forgive us this year and know that we will do better next year.
Today, Amanda and I were leaving Duke and in the background on the radio, there it was. The song I had wanted to hear but not really. After the past few days, it seemed like a sign. I turned it up so I could really listen and warned Amanda I would probably cry (as she was probably thinking "Oh no, Rebecca is driving and getting ready to burst in to extreme tears!!!). But I held it together as not to embarrass myself and get us in a wreck. It made me realize that I have become such a strong person - stronger than I ever thought I could be. Most of you who know me know that I cry at the drop of a hat. It can be happy tears, sad tears, mad tears, humble tears, whatever tears - you name it. A few of you are scared of me when you know tears will be coming (you know who you are at work.....). So I was quite proud that I did not burst into convulsions listening to the song. Mind you, if I were alone in the car, that would have happened for sure! God knew not to play the song while I was alone though!
But the song is totally appropriate and means more to me know than ever. Our daughter makes us better than we could ever wish to be. Below are the lyrics to the song I am talking about:
"In My Daughter's Eyes"
In my daughter's eyes I am a hero
I am strong and wise and I know no fear
But the truth is plain to see
She was sent to rescue me
I see who I wanna be
In my daughter's eyes
In my daughter's eyes everyone is equal
Darkness turns to light and the
world is at peace
This miracle God gave to me gives me
strength when I am weak
I find reason to believe
In my daughter's eyes
And when she wraps her hand
around my finger
Oh it puts a smile in my heart
Everything becomes a little clearer
I realize what life is all about
It's hangin' on when your heart
has had enough
It's giving more when you feel like giving up
I've seen the light
It's in my daughter's eyes
In my daughter's eyes I can see the future
A reflection of who I am and what will be
Though she'll grow and someday leave
Maybe raise a family
When I'm gone I hope you see how happy
she made me
For I'll be there
In my daughter's eyes
Ok, now that I have read it, I have released the tears!!! :)
Anyways, onto the yo-yo day. Most people talk about yo-yo dieting. This is more like yo-yo emotions.
So after all of the testing yesterday and the beginning of getting some answers, Claire slept so soundly according to the nurses. As of rounds this morning, the doctors were talking about sending Claire home and us just being on the lookout for any signs or symptoms of the cysts affecting Claire. They said I was right and knew when she needed this last ultrasound, so I would know when she would need to be looked at again (small victory!).
Claire had a pretty good morning while we were there. I had to leave early b/c I thought I had a cavity (turns out it wasn't thank God) and as I was telling Claire goodbye (well, really just staring at her in la la land), the doctors walked up. I didn't even notice them where on a normal basis I am constantly on the lookout for them! I could tell on their faces that something wasn't quite right.
The doctors stated that from the CT, it looked like the large cyst was pressing against Claire's vena cava which is the main vessel that carries blood back to her heart. This is a concern they have had since the beginning - making sure the cyst doesn't compress the 2 main vessels - the VC being one. They said this is probably the reason for the lower extremity edema she has been experiencing for a while. Since the cyst will probably continue to grow larger, it could eventually press against the aortic vessel (one that carries blood away from her heart and to her organs). This would not be good because it could cut the blood flow off to her liver or other organs. They do not want blood flow restricted to any organs.
Claire's body has learn to compromise from the restricted blood flow to the vena cava by using other blood vessels. They other blood vessels have somewhat taken over the job of the vena cava. The neonatologists were going to consult again with the liver surgeon and cardiologist to see how this would change the plans. So basically they were saying Claire is not going home now.
I felt a range of emotions - scared that something was wrong, happy that I was right, reassured that they wanted to keep her at Duke to watch her and not send her home with something wrong, sad that we wouldn't be spending Claire's first Christmas at home, and petrified at the thought of what this all meant. Unfortunately, I had to leave and head to the dentist - hence hearing the Martina McBride song.....
Claire had a good afternoon and rested well. I finally called our favorite doctor around 8 to see if she had an update. I always hesitate to call because I know they are all so busy. But she never seems to mind talking to me and answering our questions. We love her! She had talked to the surgeon again and from the CT, the surgeon says the resection would be more complicated than she originally thought due to how the cyst was in the liver versus the veins in the liver. Sigh. She said the surgeon thought at this point it would be ok to send Claire home, but maybe aspirate the cyst first. I freaked out knowing that as much as we want her home, I don't think she's ready!
Our favorite doctor (maybe we should call her OFD for short from now on) told the surgeon that every time the drain the cyst, it comes right back based on the 3 times they've aspirated it. The attending doctor said he wanted to keep Claire at Duke to monitor her, so I am hoping he sticks to his guns.
The surgeon said the earliest that she would be able to do anything would be around January 10th b/c the other liver surgeon was out of town. She is also touching base with the cardiologist as far as Claire's heart and heart surgery go. Ideally she would like for the heart surgery to happen first. OFD said that they have done this kind of surgery before but they have to use "certain techniques" since it's more complicated.
This is so scary! We are just hoping and praying everything will work out like it's supposed to and that Claire is happy, healthy, and home in God's time. Please, please, please continue the prayers for Claire and her doctors. She deserves the best and we are working hard to try to make sure that happens.
Sorry for the long post today! Lots of stuff going on! Please keep the prayers coming. That's the best gift you could ever give to Claire and our family.
Love,
The Scott Family
PS - we did good to get out a few (I mean FEW) Christmas cards this year. We haven't bought any presents for anyone (except Claire's 2 gifts) although we know and wish we could give something to each and every one of you who deserve it. Please forgive us this year and know that we will do better next year.
Monday, December 20, 2010
Monday, Monday.....
Well, today started out with me calling to check on Claire at 4 am and as soon as the nurse started talking, I knew something was not right. Of course she said Claire had blood in her stool at the midnight assessment. The doctors ordered an xray and labs and they all came back normal. But this time they didn't take her off of her feeds. They just wanted to see what would happen.
Claire had several more stools with spots of blood in them. So the doctors talked to GI and got her in for a sigmoidoscopy today. That test is kind of like a colonoscopy, just not as evasive. It lasted probably 5 minutes and they came out with a good answer for all of the blood. It's called Lymphoid Nodular Hyperplasia. Basically Claire has swollen nodules in her sigmoid area of her colon. This could be caused by a food allergy. They get irritated and bleed. So the doctors are thinking that this has been the case probably the whole time. She probably had a allergic reaction to the breast milk which caused the original inflammation and irritation. Then switching to the EleCare made it less irritated, but the more she drinks, the more she stools, thus irritating the area and causing little spots of blood. The GI doctor said it could take a few months for it to completely heal. So we just have to keep watching it. So that was great to finally get an answer to these bloody stools! They also biopsied the spots to verify their diagnosis. It will take a few days to get the results back.
The liver CT was also done today and we hope to get the report and information back tomorrow from the doctors. We also met with the liver surgeon today. We didn't really get any definite answers just because they are not exactly sure what the cysts are. There are several things it could be and until they do a biopsy or totally cut the cysts out. The CT scan will help the doctors see where the vessels are in the liver and how they can surgically remove the cysts and/or do the biopsy.
The surgeon said they originally thought the cysts were simple cysts and could be drained to get rid of them. But now after the MRI, it shows the 1 large cyst and a smaller cysts in the right lobe of the liver and then about 3smaller cysts on the left lobe. She is pretty sure once removed, they will not come back if they are the mesenchymal (sp) hamartomas like they think they are. They would not be malignant if they were hamartomas. The other thing she mentioned that it could possibly be would be poly cystic liver disease. But she really is not leaning that way. Usually with this, you see cysts in the liver and the kidneys, and she doesn't have any cysts in her kidneys.
If they do a biopsy, they could also test it for genetics to see if it's something that would happen again if we had any more children. We also asked about if the big cysts could rupture. She didn't really think so unless there was a traumatic event like a car accident. We asked about if a liver transplant was a possibility. She thought we were getting ahead of ourselves with that part of it. The surgeon said that they had done about 8-10 liver resections (like they would do for Claire) in the past year.
If they send Claire home without doing anything, she said they would schedule some testing and scanning of the liver if it was going to be months before they were to do anything. The surgeon said she wanted to consult with the cardiologists and radiologists before doing or deciding anything, and since it's the holiday season, it will probably be hard to do until the first of the year. So it may be January before anything is done.
Claire also passed her car seat test today! She basically had to sit in her car seat for 90 minutes without having bradys, desats, etc. She did GREAT! So she's ready to go!
So it's still a wait and see about what will happen with the cyst and about coming home. Just taking one day at a time!
Thank you for all of the prayers for Claire. They are working!!
Love,
The Scott Family
Claire had several more stools with spots of blood in them. So the doctors talked to GI and got her in for a sigmoidoscopy today. That test is kind of like a colonoscopy, just not as evasive. It lasted probably 5 minutes and they came out with a good answer for all of the blood. It's called Lymphoid Nodular Hyperplasia. Basically Claire has swollen nodules in her sigmoid area of her colon. This could be caused by a food allergy. They get irritated and bleed. So the doctors are thinking that this has been the case probably the whole time. She probably had a allergic reaction to the breast milk which caused the original inflammation and irritation. Then switching to the EleCare made it less irritated, but the more she drinks, the more she stools, thus irritating the area and causing little spots of blood. The GI doctor said it could take a few months for it to completely heal. So we just have to keep watching it. So that was great to finally get an answer to these bloody stools! They also biopsied the spots to verify their diagnosis. It will take a few days to get the results back.
The liver CT was also done today and we hope to get the report and information back tomorrow from the doctors. We also met with the liver surgeon today. We didn't really get any definite answers just because they are not exactly sure what the cysts are. There are several things it could be and until they do a biopsy or totally cut the cysts out. The CT scan will help the doctors see where the vessels are in the liver and how they can surgically remove the cysts and/or do the biopsy.
The surgeon said they originally thought the cysts were simple cysts and could be drained to get rid of them. But now after the MRI, it shows the 1 large cyst and a smaller cysts in the right lobe of the liver and then about 3smaller cysts on the left lobe. She is pretty sure once removed, they will not come back if they are the mesenchymal (sp) hamartomas like they think they are. They would not be malignant if they were hamartomas. The other thing she mentioned that it could possibly be would be poly cystic liver disease. But she really is not leaning that way. Usually with this, you see cysts in the liver and the kidneys, and she doesn't have any cysts in her kidneys.
If they do a biopsy, they could also test it for genetics to see if it's something that would happen again if we had any more children. We also asked about if the big cysts could rupture. She didn't really think so unless there was a traumatic event like a car accident. We asked about if a liver transplant was a possibility. She thought we were getting ahead of ourselves with that part of it. The surgeon said that they had done about 8-10 liver resections (like they would do for Claire) in the past year.
If they send Claire home without doing anything, she said they would schedule some testing and scanning of the liver if it was going to be months before they were to do anything. The surgeon said she wanted to consult with the cardiologists and radiologists before doing or deciding anything, and since it's the holiday season, it will probably be hard to do until the first of the year. So it may be January before anything is done.
Claire also passed her car seat test today! She basically had to sit in her car seat for 90 minutes without having bradys, desats, etc. She did GREAT! So she's ready to go!
So it's still a wait and see about what will happen with the cyst and about coming home. Just taking one day at a time!
Thank you for all of the prayers for Claire. They are working!!
Love,
The Scott Family
Sunday, December 19, 2010
Softball or cyst?
Claire is just such a sweet little baby girl. We love her so much! I was able to give her a bath today with the help of a great nurse who loves for Claire and her bed to be clean. She smelled so good after her bath and has been eating well. Her nurse said I missed her wearing her "Daddy's Little Elf" outfit yesterday. :(
Her/our favorite doctor came by and showed us Claire's MRI images. She warned us before we looked at them that the cyst was big and not to freak out. So I didn't. The CT scan is scheduled for tomorrow morning and we will hopefully get to talk to the surgeon tomorrow at some point. Maybe we will get some answers and plans tomorrow too.
Also, we heard another sweet story today. The Santa in the pictures with Claire is a cancer patient going through chemo. I assume from what the nurses said that he's not doing so well, and one of his last wishes was to be the Santa who went around to the babies in the hospital this year. So sweet!
Pray for Clarie tomorrow as she goes through the CT and that the surgeon can give us some good plans for Claire and the cysts. Thank you so much!!!!!
Love,
The Scott Family
Her/our favorite doctor came by and showed us Claire's MRI images. She warned us before we looked at them that the cyst was big and not to freak out. So I didn't. The CT scan is scheduled for tomorrow morning and we will hopefully get to talk to the surgeon tomorrow at some point. Maybe we will get some answers and plans tomorrow too.
Also, we heard another sweet story today. The Santa in the pictures with Claire is a cancer patient going through chemo. I assume from what the nurses said that he's not doing so well, and one of his last wishes was to be the Santa who went around to the babies in the hospital this year. So sweet!
Pray for Clarie tomorrow as she goes through the CT and that the surgeon can give us some good plans for Claire and the cysts. Thank you so much!!!!!
Love,
The Scott Family
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| bath time |
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| This is looking at Claire's belly. The big white circle is the large cyst. There is a smaller one below it, and then smaller ones to the right. |
Saturday, December 18, 2010
Possible CT scan on Monday
Today has been a pretty good day. Aunt Amanda graduated from NC State today! We are so proud of her! Claire would have definitely been there if she could have been!
Claire has had a good day today. I had planned to go up after lunch, but it started snowing and sleeting heavily, so I decided that driving would not be the smartest thing. Claire has a good nurse today and has been receiving lots of attention, so I am sure she is ok!
Our favorite doctor called us today during graduation and said that she had heard back last night from the liver surgeon. From what I understand, they want to do a CT scan on Monday of the cysts to get more pictures with contrast. She also said the surgeon may be able to meet with me on Monday! So we will see! The doctor had sent the surgeon my list of 30 questions, so she should have time to review them before we meet.
Below are some of the pictures from the past few days. Hope you enjoy them!!
Love,
The Scott Family
Claire has had a good day today. I had planned to go up after lunch, but it started snowing and sleeting heavily, so I decided that driving would not be the smartest thing. Claire has a good nurse today and has been receiving lots of attention, so I am sure she is ok!
Our favorite doctor called us today during graduation and said that she had heard back last night from the liver surgeon. From what I understand, they want to do a CT scan on Monday of the cysts to get more pictures with contrast. She also said the surgeon may be able to meet with me on Monday! So we will see! The doctor had sent the surgeon my list of 30 questions, so she should have time to review them before we meet.
Below are some of the pictures from the past few days. Hope you enjoy them!!
Love,
The Scott Family
Friday, December 17, 2010
December 17th
December 17th was supposed to be Claire's due date. Well, the doctors kept saying December 22nd, so that's the number they are going by. But I was pretty sure it was supposed to be the 17th. So for the doctors purposes, we go by the 22nd. But for my purposes, we go by the 17th! So today was Claire's due date - so according to some paperwork I have read in the ICN, this is her "other" birthday. I guess we can celebrate it today and on the 22nd! :)
The Duke radiologists heard back from the radiologist at Texas Children's and they think that Claire's cysts are something called hamartomas. I googled it and it does sound like that is what it could be. Texas Children's also suggested that Duke take a biopsy of the cysts, but Duke hasn't decided if they want to do that. Both places think that the cysts are benign. So we are just waiting to hear more information.
Santa came to see Claire yesterday! We will post pictures soon! Of course she is on his GOOD list!
Aunt Amanda graduates from NCSU tomorrow and we are excited for her! We also got to see Claire's friends Remi and Eliza tonight when we dropped of their Christmas cards. We didn't get to see Elizabeth, but saw her mom. Everyone seems to be doing well! Thank you for the continued prayers for everyone!
Love,
The Scott Family
The Duke radiologists heard back from the radiologist at Texas Children's and they think that Claire's cysts are something called hamartomas. I googled it and it does sound like that is what it could be. Texas Children's also suggested that Duke take a biopsy of the cysts, but Duke hasn't decided if they want to do that. Both places think that the cysts are benign. So we are just waiting to hear more information.
Santa came to see Claire yesterday! We will post pictures soon! Of course she is on his GOOD list!
Aunt Amanda graduates from NCSU tomorrow and we are excited for her! We also got to see Claire's friends Remi and Eliza tonight when we dropped of their Christmas cards. We didn't get to see Elizabeth, but saw her mom. Everyone seems to be doing well! Thank you for the continued prayers for everyone!
Love,
The Scott Family
Wednesday, December 15, 2010
"like a hedgehog sitting on a fence eating waffles"
A note from Rebecca:
Claire has seemed to be resting well today. They have increased her feeds and she is tolerating it well. They have increased it to a level where they can take her off her IV fluids; yay!! That means she is completely on Elecare which is the broken down formula. Santa Claus is coming to town...well to the ICN tomorrow! He is going to make his rounds and visit and take pictures will all of the babies! She has the perfect outfit to wear tomorrow from Nurse Marie; it has Santas all over it! She also has her Santa hat from Mrs. Hilda.
We heard back from the Radiologists today from Claire's MRI. They are still unsure what is going on with Claire's liver. They don't want to make a determination of what is going on without consulting other radiologists. Dr. Rachel (one of Claire's favorites doctors) said that radiologists are "like a hedgehog sitting on a fence eating a waffle" meaning they like to hedge around, sit on a fence not making a decision, and waffle back and forth about things.
The radiologist has sent Claire's MRI results to a radiologist at the Texas Children's Hospital for consult. They are also consulting with the GI and surgery teams before making a decision and determining what could be going on. What they have determined is that there is still the 1 large cyst and several small 1/2cm x 1/2cm x 1/2cm cysts around it. The large cyst looks the same to them, but the small cysts seem to "have a different consistency" and look even more solid than the large one.
As of right now, they are still wanting to hold out on surgery of the liver until after the heart surgery. The doctors said that there is a potential in small babies and preemies that the liver can bleed some and they want her heart to be functioning correctly just in case. One of the nurses said today also that if the cysts had to be on any organ the liver was a "good" one to be on because if they have to cut a portion of her liver off during surgery, it will regenerate and grow back. Other then that, we do not have any more information on what will happen with the liver or what could be causing all of the cysts.
We hope to have more information and answers soon hopefully tomorrow; mainly before the weekend gets here. We are all very stressed and scared about what the results will entail. We are hoping for all good news! Please keep Claire and us in your prayers as we hope to get some answers soon about what causing all of the cysts.
We love her very much :)
Tuesday, December 14, 2010
MRI, baby shower, etc.
Claire had her MRI today. I think it stressed me out more than her! Well, we tried not to have to use sedation. I gave her a baby massage and fed her and we wrapped her tight, but the MRI tech thought we needed the sedation. So we gave it to her and she went out. We went down at 10:30 am and didn't get done until almost 1 pm. I was able to pull a chair up right beside the MRI machine and sit beside Claire as she was scanned. They did pictures with and without contrast. Her nurse was able to watch the pictures and commented on how Claire's stomach is so compacted and all of her intestines are squished to one side. After the MRI she was still so sedated, she had lots of little bradys. But the doctor said it was because she was so relaxed that her heart rate was lower.
Claire did an awesome job and is so brave! This little girl is so tough. We totally admire her.
This past weekend, we had a baby shower for Claire. I had a great time! It was very last minute, but with graduation and the holidays coming up (and hopefully Claire coming home), this was the only time we had available. The food was delicious, the fellowship was great, and Claire got some awesome gifts.
One of Claire's favorite nurses brought her 2 outfits today at the hospital. One is a Christmas outfit and the other a 2011 outfit. Claire will always have more stylish clothes than me! She is loved already by so many.
They went up on Claire's feeds today, so hopefully she will be more satisfied. And can hopefully come off of the IV fluids soon. We hope to hear more about the MRI tomorrow and if anything has changed. And still trying to get a family meeting with the surgery team. Our favorite doctor is working on that for us!
Have a great day and continue to pray for Claire!
Love,
The Scott Family
Claire did an awesome job and is so brave! This little girl is so tough. We totally admire her.
This past weekend, we had a baby shower for Claire. I had a great time! It was very last minute, but with graduation and the holidays coming up (and hopefully Claire coming home), this was the only time we had available. The food was delicious, the fellowship was great, and Claire got some awesome gifts.
One of Claire's favorite nurses brought her 2 outfits today at the hospital. One is a Christmas outfit and the other a 2011 outfit. Claire will always have more stylish clothes than me! She is loved already by so many.
They went up on Claire's feeds today, so hopefully she will be more satisfied. And can hopefully come off of the IV fluids soon. We hope to hear more about the MRI tomorrow and if anything has changed. And still trying to get a family meeting with the surgery team. Our favorite doctor is working on that for us!
Have a great day and continue to pray for Claire!
Love,
The Scott Family
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| Christmas at Duke |
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| baby shower |
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| Becky, Ava, and me |
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| all of Claire's goodies |
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| our favorite doctor :) |
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| after the MRI |
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| Thank you Nurse Marie! |
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