Clare is working her way out of the ICU. From a heart standpoint, she is ready to go. However, she is having trouble feeding, so that is what is keeping her put for now. It's crazy how complicated everything can get.
Clare has an IV (a central line) in her jugular in her neck. This is the only way she can receive IV nutrients, such as carbs, lipids, etc. But if she's not eating by mouth and not eating by NG-tube (the nurses have tried for two days to get a tube in - the night nurse tried again last night and it made Clare vomit), then the central line has to stay in so Clare continues to receive nutrients. However, she cannot be transferred out of the ICU with a central line in because it is too dangerous if something went wrong with that line. The IV in her arm went caput, and an IV nurse was finally able to get an IV into her foot two nights ago. Yet as Clare's nurse told me, "It's in the smallest vein I've ever seen an IV go in!" (Clare is a VERY hard stick - partly because of that adorable baby pudge, but mostly because she has been stuck so many times that there is much scar tissue in the way). So that foot IV is pretty much useless except for an occasional blood draw. The IV team are going to try and get another, better line in before they take out the central line (and I say, good luck to you!).
The issue with feeding is that Clare is having trouble nursing. She shows signs of hunger (and should be hungry since it's been 7 days since she's eaten), but is not nursing well. It could be due to the position of the central line (hard to get into a comfortable nursing position), all the sedatives she has been on that she is still very tired, and a sore throat from being intubated. Today, the nurse was finally able to get an NG-tube through her nose by giving Clare some Reglan (a drug often given to babies with reflux) beforehand to relax her GI system. The Reglan did its job, so now there is the option of tube feeding Clare as well. While she has the NG-tube in, I can still nurse her (and she is being fed only breastmilk through the tube anyway).
So after a lot of shuffling around and experimenting with different things, I think the plan is to continue to try nursing Clare, but to primarily feed by NG-tube for now. We may be stuck in the ICU one more night to be sure Clare is doing well with the tube. If that goes well, her central line can come out, and she can be transferred out of the ICU. Once we're on the cardiac floor, Clare won't have that central line and hopefully she will have more energy. Then she can start nursing more and feeding through the tube less. I don't like the idea of Clare being fed by a tube, but if that's what it takes to get her strong and healthy again, then that's what it takes.
Monday, November 14, 2005
Sunday, November 13, 2005
Ups and Downs
Today was an up and down day. The biggest up was when Clare had her breathing tube removed. She was such a happy camper for about 30 minutes afterward. But then that ended. If I had to name a benefit of having to see your child sedated, it's that you cannot see their pain (because they really don't have any when they're knocked out!). Clare had a hard time settling in today. And, as parents, we had a hard time watching her. We're fairly helpless when Clare is in the ICU. Her terrific nurses do all the work, but you take it personally as a parent when you cannot comfort your child. They're trying to wean her off her painkillers, but she obviously has a lot of discomfort. She is not on continuous morphine now, but the doctor did put her on an occasional dose of morphine, along with the methodone. However, this still was not working for her today, so she also got a dose of ativan (a nice happy anti-anxiety drug!). The ativan did the trick, and she settled right down. Then she was fairly content for the remainder of the day, except when she was being fidgeted with. As much as I hate seeing all these different meds pumped into Clare, I know she needs them. If she gets too agitated, it affects her blood pressure and respiratory rate, and she cannot rest and continue her healing process. As it is, the doctor has put her on hypertension medication because her blood pressure has been 20 points higher post-op than it was pre-op. She may go home on this medication, but hopefully it won't be a permanent addition.
The other big up today was that I got to hold both of my babies. My mom brought Jamie to the hospital (he spent the weekend with my parents, and then went home with Shawn this evening). Shawn and I had agreed to not let Jamie see Clare until she was transferred to the cardiac floor. However, the nurses encouraged us to let him see her in the ICU once her breathing tube was removed. All he would see was the oxygen cannules in her nose and tape holding the tubes to her cheeks. The rest of her would be covered by blankets. One of the nurses said that you would be surprised what a 3-year old can imagine, and it would be better to just let him see that she's all right. Jamie has asked constantly for Clare and was quite upset on Friday when we wouldn't let him see her. So we decided to let him in the room. He was great - saw Clare, gave her a kiss, then happily played with the Ninja turtles Clare "gave" him for a present - all was right in his world again. We definitely made the right decision letting Jamie see her. I was able to spend about an hour with Jamie in the playroom at the hospital, and we had a great time. He wanted hugs and kisses and to be carried around, so I loved every moment of it.
This evening, Clare had her arterial line removed from her wrist. Once that was out, I got to hold her. It was precious. She was upset by the removal of the line (it was stitched in place into her wrist), but calmed instantly in my arms. We both missed each other! I didn't hold her for long since it is difficult to manuever because she is still hooked to IVs and other pumps and monitors, but the ten minutes I had was wonderful. One of my downs today was that I saw her chest incision for the first time. The nurse had to clean it and change the bandage and said I didn't have to watch, but I felt that I needed to see it (since I am going to have to do this at home). I can't describe how it feels to know your baby's perfect skin is gone forever. I know it's just a cosmetic thing, but I never liked the idea that they were cutting my baby. The incision is about three inches long a little to the right of the center of her chest. It didn't look as nasty as I thought it would, but it still hurts me to see it. She also has the four sites of stitches from her chest tubes that I saw for the first time. It is so hard to see your baby covered in cuts, bruises, needlesticks, and stitches. But then I had the up of nursing her for the first time post-op. She only nursed for about two minutes, but it's a start. And she kept it in her tummy, which is a big thing. So it's been a long, emotional day for us! If all goes well tonight, we're going to be transferred out of the ICU tomorrow. That will be a big up!!
The other big up today was that I got to hold both of my babies. My mom brought Jamie to the hospital (he spent the weekend with my parents, and then went home with Shawn this evening). Shawn and I had agreed to not let Jamie see Clare until she was transferred to the cardiac floor. However, the nurses encouraged us to let him see her in the ICU once her breathing tube was removed. All he would see was the oxygen cannules in her nose and tape holding the tubes to her cheeks. The rest of her would be covered by blankets. One of the nurses said that you would be surprised what a 3-year old can imagine, and it would be better to just let him see that she's all right. Jamie has asked constantly for Clare and was quite upset on Friday when we wouldn't let him see her. So we decided to let him in the room. He was great - saw Clare, gave her a kiss, then happily played with the Ninja turtles Clare "gave" him for a present - all was right in his world again. We definitely made the right decision letting Jamie see her. I was able to spend about an hour with Jamie in the playroom at the hospital, and we had a great time. He wanted hugs and kisses and to be carried around, so I loved every moment of it.
This evening, Clare had her arterial line removed from her wrist. Once that was out, I got to hold her. It was precious. She was upset by the removal of the line (it was stitched in place into her wrist), but calmed instantly in my arms. We both missed each other! I didn't hold her for long since it is difficult to manuever because she is still hooked to IVs and other pumps and monitors, but the ten minutes I had was wonderful. One of my downs today was that I saw her chest incision for the first time. The nurse had to clean it and change the bandage and said I didn't have to watch, but I felt that I needed to see it (since I am going to have to do this at home). I can't describe how it feels to know your baby's perfect skin is gone forever. I know it's just a cosmetic thing, but I never liked the idea that they were cutting my baby. The incision is about three inches long a little to the right of the center of her chest. It didn't look as nasty as I thought it would, but it still hurts me to see it. She also has the four sites of stitches from her chest tubes that I saw for the first time. It is so hard to see your baby covered in cuts, bruises, needlesticks, and stitches. But then I had the up of nursing her for the first time post-op. She only nursed for about two minutes, but it's a start. And she kept it in her tummy, which is a big thing. So it's been a long, emotional day for us! If all goes well tonight, we're going to be transferred out of the ICU tomorrow. That will be a big up!!
My Lovely Wife
S~ Okay, two posts in a row. No Teresa is fine but there was something more I wanted to say. For those of you who don't know, today is Teresa and my sixth wedding anniversary! So I wanted to take some time to tell all of you how lucky a guy I am. When I met Teresa nine years ago, I noticed her immediately. She was this spunky girl that ran around the campus of our college going by the name of Tree (a nickname I still use to this day). She had a boyfriend that first year and I had a girlfriend. My senior year we started dating, and it was a little rocky the first few months. But we persevered. Then I graduated and moved to Rhode Island, Teresa still had two more years of college to go through. I had some doubts that we were going to be able to survive the distance. But God had a plan. We survived the first year and the start of the second year I proposed to her (the smartest thing I ever did). I was so nervous I could barely get the words out but she said yes! Then a year after that we were married. I will never forget standing at the front of the church when the music started playing and watched as the doors opened to a beautiful angel dressed all in white. I remember my knees going week and I choked back tears. I thought how could a clown like me every deserve such a treasure. Now six years later we are spending our anniversary watching our daughter in the ICU recover from a difficult surgery. I can't tell you how lucky I am to have a woman like Teresa as my wife! She is so wonderful in so many ways. Her strength during a crisis has helped me so much these past seven months. She is strong when I can't be and vice versa. She constantly makes me laugh and is the most wonderful dedicated mother. She has done such a tremendous job raising Jamie and Clare, and sacrificed a lot in the process. God has granted me with the greatest gift he could have ever given me, and that is my wife. I am not worthy to have her, but knowing that, I find myself honored that she also chose me. I remember in my very first post (Daddy's First Post, June 23rd) I made a comment about wondering how our marriage will hold up under all this stress. Well, now going through the most stressful seven months of our lives; I know that God has helped us grow closer together. He has made us a much better team and much better parents. So on our sixth anniversary I want to celebrate my wife Teresa. I ask all of you to leave her a special comment to let her know how much you all love her. Happy Anniversary, Tree!
Free at Last!
S~The big update of the day...(drum roll please)... Clare is off the breathing machine. At about 8:20am they took the breathing tube and stomach tube out of Clare. She, of course, hated that but soon settled down. She can now have her binky and Mom and Dad can have her beautiful face back! She looks so sweet now sucking away at her binky. The plan for the rest of the day is to take out her arterial line (a thin tube inserted into the artery in her wrist that measures her blood pressure directly from that artery) and keep her as comfortable as possible. She will be in the ICU for at least one more night as they want to make sure her breathing and oxygen levels are all fine. I believe they also want to try feeding her orally, not really sure of the plan with that. She has been receiving proteins, carbs, and other nutrients via her IV. (The tube feeding plan ended up not working because one of her nostrils got blocked, so her stomach acid tube had to be placed in her mouth again and now there is no access for tube feeding.) But, once again, Clare is doing great. When I left she was watching "You're a Good Man, Charlie Brown". Her nurse put it on but Clare was definitely enjoying it, so I won't say a thing about a 7 month old needing to watch TV. Besides, it allows us to watch those beautiful baby blue eyes!
Saturday, November 12, 2005
Weaning Off the Vent
Clare's day today is focused on weaning her off the vent. In preparation, she is being given another blood transfusion (to increase the amount of oxygenated blood in her system). She is also being taken off her morphine (which causes some respiratory suppression) and put on methodone instead. The methodone will also help her come off the strong painkillers, so she does not go through withdrawal. If all goes well today, then she will be extubated in the morning.
Making Progress
Today was a great day. Clare made some real progress. Five of her tubes were removed(including the chest tubes), and she's down to only six medications. I look back over how far we've come since Tuesday. She still has a long way to go, but her progress is amazing - she's an amazing baby. It was a rough mid-afternoon for her with all the tubes coming out, so she slept all afternoon and early evening. She is on a strong dose of morphine, so that certainly helps with keeping her asleep! But Shawn and I did have a couple moments this evening with her when Clare seemed to know that we were there.
Jamie visited the hospital with my family today, and I loved seeing him. Although I've been talking to him daily, it's been five days since I've seen him. He was a little weird with me (very clingy to Auntie Erin), but I know that is just his way of adjusting to all that is going on around him. I was content with, as my mom puts it, to just feast my eyes on him.
Tomorrow's plan is to continue weaning Clare off the ventilator. If she has a good day tomorrow, she may be completely off the ventilator by Sunday. Then we can begin the transition out of the ICU.
Jamie visited the hospital with my family today, and I loved seeing him. Although I've been talking to him daily, it's been five days since I've seen him. He was a little weird with me (very clingy to Auntie Erin), but I know that is just his way of adjusting to all that is going on around him. I was content with, as my mom puts it, to just feast my eyes on him.
Tomorrow's plan is to continue weaning Clare off the ventilator. If she has a good day tomorrow, she may be completely off the ventilator by Sunday. Then we can begin the transition out of the ICU.
Friday, November 11, 2005
Baby Blues
I saw Clare's baby blues this morning... I slept again in the parent dorm last night, and when I arrived at Clare's bedside this morning, she had made great strides overnight. She was completely weaned off her vent pressure and the paralytic and had already stirred a bit. She is still heavily sedated and on morphine, but she does open her eyes and try to look around, especially when the nurse is doing something on her. The nurse said she can hear my voice, so I've been talking to her and telling her about all the people who love her and who are praying for her. She is somewhat agitated when she is "awake," which of course causes her blood pressure to rise, so we've been trying to keep her content and asleep. But it was wonderful to see those beautiful eyes.
I met with Clare's surgeon this morning. Her chest x-ray showed more improvement over yesterday with the fluid in her lungs. His plan this morning is to remove the leads that are directly on her heart. If that goes well, then he will remove the chest tubes (tubes inserted into her chest to drain fluid from around the heart) and stitch up those incisions. He said she "has turned the corner" and is doing great. He said there may be a possibility of doing another cath while she is in here to do some work on her pulmonary side, but that will be up to her cardiologist. She will at least have an echo to see how her aortic patch looks, and they can look at her pulmonary side then.
I met with Clare's surgeon this morning. Her chest x-ray showed more improvement over yesterday with the fluid in her lungs. His plan this morning is to remove the leads that are directly on her heart. If that goes well, then he will remove the chest tubes (tubes inserted into her chest to drain fluid from around the heart) and stitch up those incisions. He said she "has turned the corner" and is doing great. He said there may be a possibility of doing another cath while she is in here to do some work on her pulmonary side, but that will be up to her cardiologist. She will at least have an echo to see how her aortic patch looks, and they can look at her pulmonary side then.
Jamie's Journey
S~ I wanted to write a few words about Jamie. As this website is truly designed to discuss Clare's Journey with Williams Syndrome, the syndrome really affects the whole family. For those of you who don't know Jamie, or for those of you who have not seen Jamie in awhile, he is a wonderful kid. Of course, he has his typical 2 1/2 year old moments, but for the most part he is a really, really sweet kid. He says please and thank you about 90% of the time, he loves to tease us and his Mimi. He loves to wrestle and kiss his little sister. Teresa and I have tried very hard to shelter Jamie from what Clare has been going through. We have explained the long Mommy Absences as Clare has a Boo Boo and she needs to go to the hospital to have it fixed. That has seemed to work pretty well and we thought he really didn't have an idea on the severity of Clare's disease. However, Tuesday during the surgery we called over to his friend's house, where Jamie was spending the day, to see how he was doing. After he asked Mommy what she was doing and then talked to Daddy he asked to talk to Clare. I told him that Clare was with the Doctor and he was making her boo boo better. He started to get really agitated about talking to Clare. I handed the phone to Teresa who answered with her best "Clare" voice and said "Hi Jamie, It's Clare. What are you doing?" His only response was "Hi Clare! I love you, Bye!" It was so sweet but it also made me realize that he does understand, in his way, the severity of Clare's disease. He may not know about the surgery but he knows that his sweet little sister has a bad boo boo that his kisses won't heal. I pray that all we have to deal with is not going to affect that sweet little kid I know and love. I don't want him to think that he is ever second to Clare's disease. So Jamie, if you read this years down the road I want you to know that Daddy and Mommy are very proud of you and we love you with all our hearts!
Thursday, November 10, 2005
Closing Time
Clare's chest is closed! It happened sooner than expected, and she did awesome! No major bleeding, no major blips in her stats. Her clotting is still somewhat iffy, so she is receiving Vitamin K injections to aid with that. (Please don't ask me what all this does - I try to soak up as much information as I can from the doctors and nurses, and then forget half of it! I've started writing stuff down, so I can at least repeat it somewhat intelligently to Shawn.) The nurse gave her a little sponge bath, and took the suction tube out of her mouth and inserted it through her nose instead (her ventilator tube goes through one nostril, and the tube to suction acid out of her stomach was inserted into her mouth, but now both tubes are in her nose). She has nothing in her mouth now, so Clare looks much more peaceful and absolutely beautiful!
Hanging in There
We're all hanging in there, especially Clare. She has had one expected obstacle to having her chest closed today. Due to all the anti-clotting medications she has been on, now that they have stopped those, her blood isn't clotting on its own. This isn't critical right now because she is not bleeding, but she does need her blood to be clotting before the surgeon closes her chest. So we are waiting for lab work results and hematology to come see her. She will most likely be given a transfusion of frozen fresh plasma to restart her clotting. After the transfusion, all the labs will be run again, and, if Clare is clotting well, then her chest can be closed. Hopefully this will happen sometime this evening.
The doctor warned us that after her chest is closed, Clare will experience some rocky moments again. This is 100% expected because of the trauma of going back into her chest, closing the breastbone, then suturing her incision closed. Because she has been stabilized for well over 36 hours now (and it will most likely be 48 hours once the surgeon actually closes her chest), the doctors are confident that they can help her get through these rocky moments.
Her chest x-ray this morning showed that the fluid in her lungs has decreased, but only slightly. Once her chest is closed, she can be weaned off the pressure in the ventilator, then weaned off the paralytic, but she will still be on the ventilator into the weekend because of the fluid. Once she's off the paralytic, if she is making good intestinal sounds (since her digestive system is paralyzed right now), then they are going to try tube feeding Clare breastmilk to see how she does with food in her belly. So these are our goals right now (in order) - blood clotting, chest closure, pressure off, paralytic off, tube feeding. Whew!! If all goes well today, then hopefully they can accomplish all these goals by tomorrow evening.
The rest of the family are hanging in there, too. Shawn went home last night to be with Jamie. Jamie wanted to sleep in Mommy & Daddy's bed (a first), so Shawn let him until he fell asleep. Jamie is definitely feeling our absence, but he is also having fun with Auntie Erin right now. Shawn is working from home today, so Jamie can see him whenever he wants to. Tomorrow, Erin is planning on bringing Jamie to the hospital so I can spend time with him in the playroom. I miss my boy!
I have been spending my time between sitting with Clare and taking walks around the hospital. Last night, I slept in the parents' dorm. I could have slept on the bed provided in Clare's ICU room, but she is constantly being worked on in some way by the nurse, so it would not have been a good night's sleep. When Clare was in the ICU overnight after her second cath, I was encouraged to go sleep elsewhere. However, I could not bring myself to leave her side, so I slept (kind of) in the room. I have learned that to be there for Clare, I have to be a little selfish and take care of myself as well. I offer this advice to any parent dealing with a similar situation. Since Clare is not nursing, I am not needed to be present overnight. I feel it is more important to get some rest while I can, since once she's transferred back to the regular cardiac floor, I will not get the same sleep. I have to admit that that has been the only perk to being here - it's been seven-plus months since I've slept through the night. (Well, almost through the night because I still have to pump.) Little blessings!
The doctor warned us that after her chest is closed, Clare will experience some rocky moments again. This is 100% expected because of the trauma of going back into her chest, closing the breastbone, then suturing her incision closed. Because she has been stabilized for well over 36 hours now (and it will most likely be 48 hours once the surgeon actually closes her chest), the doctors are confident that they can help her get through these rocky moments.
Her chest x-ray this morning showed that the fluid in her lungs has decreased, but only slightly. Once her chest is closed, she can be weaned off the pressure in the ventilator, then weaned off the paralytic, but she will still be on the ventilator into the weekend because of the fluid. Once she's off the paralytic, if she is making good intestinal sounds (since her digestive system is paralyzed right now), then they are going to try tube feeding Clare breastmilk to see how she does with food in her belly. So these are our goals right now (in order) - blood clotting, chest closure, pressure off, paralytic off, tube feeding. Whew!! If all goes well today, then hopefully they can accomplish all these goals by tomorrow evening.
The rest of the family are hanging in there, too. Shawn went home last night to be with Jamie. Jamie wanted to sleep in Mommy & Daddy's bed (a first), so Shawn let him until he fell asleep. Jamie is definitely feeling our absence, but he is also having fun with Auntie Erin right now. Shawn is working from home today, so Jamie can see him whenever he wants to. Tomorrow, Erin is planning on bringing Jamie to the hospital so I can spend time with him in the playroom. I miss my boy!
I have been spending my time between sitting with Clare and taking walks around the hospital. Last night, I slept in the parents' dorm. I could have slept on the bed provided in Clare's ICU room, but she is constantly being worked on in some way by the nurse, so it would not have been a good night's sleep. When Clare was in the ICU overnight after her second cath, I was encouraged to go sleep elsewhere. However, I could not bring myself to leave her side, so I slept (kind of) in the room. I have learned that to be there for Clare, I have to be a little selfish and take care of myself as well. I offer this advice to any parent dealing with a similar situation. Since Clare is not nursing, I am not needed to be present overnight. I feel it is more important to get some rest while I can, since once she's transferred back to the regular cardiac floor, I will not get the same sleep. I have to admit that that has been the only perk to being here - it's been seven-plus months since I've slept through the night. (Well, almost through the night because I still have to pump.) Little blessings!
Wednesday, November 09, 2005
24 Hours
We've made it 24 hours post-surgery. That was a big goal for Clare. She continues in stable condition. She has made more progress today towards recovery, mainly that the pressure in her ventilator has been decreased (the amount of pressure needed to inflate her lungs so she continues to circulate oxygen throughout her body), and she is doing well with these slow pressure decreases. This is one of the measures that was put in place last night to get her out of trouble. She will slowly be weaned off this pressure, and then will just be on the ventilator without any pressure at all and her body will do the circulation by itself. So it's good news that she is tolerating the weaning process. There is still fluid in her lungs, and we have to wait until her chest x-ray in the morning to see if the fluid has decreased at all.
Another big step is that her doctors are pretty sure any swings in blood pressure now are due to sedation. Her nurse noticed that Clare's pressure went high every time they fiddled with her - check lines, change medications, etc. Therefore, they believe that she is not under enough sedation and can feel these changes in her environment. So they have added another sedative to her long list of medications to see if this makes a difference in the blood pressure changes. If it does, this will be great news because it means Clare's pressure changes are not due to any problems with her heart (which was the cause of the concern last night).
She is still very sick, but is making her baby steps towards getting better. Hopefully tomorrow, her chest x-ray will show that the fluid is going down, and her surgeon will feel it is safe to close her breastbone and chest incision. From there, the next goal will be to come off the ventilator.
Thank you as always for the continued prayers, love, and support.
"Cast your burden upon the Lord and He will sustain you." --Psalm 55:22
Another big step is that her doctors are pretty sure any swings in blood pressure now are due to sedation. Her nurse noticed that Clare's pressure went high every time they fiddled with her - check lines, change medications, etc. Therefore, they believe that she is not under enough sedation and can feel these changes in her environment. So they have added another sedative to her long list of medications to see if this makes a difference in the blood pressure changes. If it does, this will be great news because it means Clare's pressure changes are not due to any problems with her heart (which was the cause of the concern last night).
She is still very sick, but is making her baby steps towards getting better. Hopefully tomorrow, her chest x-ray will show that the fluid is going down, and her surgeon will feel it is safe to close her breastbone and chest incision. From there, the next goal will be to come off the ventilator.
Thank you as always for the continued prayers, love, and support.
"Cast your burden upon the Lord and He will sustain you." --Psalm 55:22
Good Morning
Clare is in stable condition. She had a rocky night with some more episodes, but this time, the doctors had already figured out what medication worked best for her and could stabilize her much faster. She is still having periodic blood pressure swings, but we have been assured this is just her body's way of recovering from surgery. She also has fluid building up in her lungs (another result of surgery), so her chest will remain open longer than previously expected (in case they need to get in there quickly). She is facing a longer ICU stay than originally anticipated due to the complications.
We're hanging out in the ICU for the day, just being with our baby. It's going to be a long day, but Clare is heading in the right direction, albeit slowly. We've talked to our sweet boy, and he is having a blast with his auntie today. We are more peaceful.
We're hanging out in the ICU for the day, just being with our baby. It's going to be a long day, but Clare is heading in the right direction, albeit slowly. We've talked to our sweet boy, and he is having a blast with his auntie today. We are more peaceful.
Rocky Moments
Warning: Some of this is tough to write and may be tough to read. But one of our goals of this blog is to be cathartic for us, and I need to get it out. Another goal of this blog is to be a "guide" to other families going through this experience. You can never be totally prepared for every possibility that may come up. We hope we have a "success story" to share someday, but that story comes with some rough roads. And you do get past them.
It's been a rough day and an even rougher night. Clare did great during surgery. She made the transition on and off bypass smoothly. The surgery, from an aortic standpoint, was successful. The surgeon was able to use all of Clare's own muscle tissue to patch her aorta. However, tonight has been tough.
I am writing this after about two hours of intense crying and praying. These next 12-24 hours are rocky for Clare. Given the complications due to her Williams Syndrome and the condition of her blood vessels, the doctors are walking a tight line with keeping her body functioning. Clare's two obstacles post-surgery are bleeding from her surgical site (because the patch on her aorta is so extensive) and maintaining her blood pressure. The doctors have a fine balancing act keeping her blood pressure at a good rate while keeping her heart beating and her circulation going. This is harder than it sounds. If her blood pressure gets too high, she will start bleeding. If her blood pressure gets too low, she will have problems with the blood circulating throughout her body, which would have an impact on the other systems of her body.
When we first got to see Clare post-op in the ICU, she looked, quite frankly, terrible. She had tons of wires, tubes, lines, monitors, and 15 different medications being pumped into her body. Her chest was still open because the surgeon did not close her breastbone due to the risk of bleeding. (This was not as gruesome as it sounds because her chest was covered by a betadine bandage.) She had two nurses working steadily on her, and we were updated by the ICU cardiologist. Our family came in one-by-one to have a peek at her. It was hard seeing our little girl like that, but everything seemed in control. Then it all changed. Suddenly, Clare was a "Code Blue." Doctors, nurses, and special techs with scary-looking equipment came rushing in. Shawn and I got shoved to the side, not out of rudeness, but because everyone was focused so intently on Clare, they just didn't see us anymore. Finally, one of the doctors came over to talk to us. Clare's heart rate had dropped and her blood pressure increased. She was in trouble. The team of specialists were trying to gain control over her system again. She was put on an external pacemaker, among other machines. I can't even begin to explain what all they did to her because I don't know. And I don't know if I want to know. It became too much for Shawn and I, and we left. This was the hardest decision. I was so scared to leave my baby, but I couldn't stay there and watch helpless not knowing what was going on and in the way. The doctor explained that this was expected to occur post-op due to the Williams Syndrome and the multiple vessels involved in Clare's surgery. Plus, although the patch will correct her aortic problems, the pulmonary side of her heart is still very sick. He explained that the doctors were trying anything and everything to get Clare stable again. He said this might happen throughout the night as they worked to get her through this. None of that made me feel any better. I can't put into words the conflicting emotions between staying and going, but finally Shawn and I decided to go. We were no help to Clare in the condition we were in.
We came back to our hotel, cried, prayed, and held each other. I tried to go to sleep. Eventually, Shawn told me he was going to go back over to the hospital. Clare's nurse was going to call us if we were needed, but it was too hard to just sit around. I did not go with Shawn because I was so physically sick from all the emotional stress. When Shawn came back 30 minutes later, he brought good news. Clare was back in stable condition. She was back to only having the two nurses with her. Her amazing team of doctors had gotten her through that rocky moment. Shawn gave Clare a kiss and told her that Mommy and Daddy love her very much and were praying for her. I am so glad Shawn went over there. Although I did not see Clare, I don't have that last terrifying vision of her as I go to sleep tonight. I am sure there will be other rocky moments tonight and tomorrow, but Clare has us shown again and again that she is a fighter. And God has shown us again and again that He is taking care of her.
Clare's not out of the woods yet, but she is in good hands, physically and spiritually. If anyone is checking the blog late tonight, please say a special prayer for Clare and her doctors tonight. And for us, too!
It's been a rough day and an even rougher night. Clare did great during surgery. She made the transition on and off bypass smoothly. The surgery, from an aortic standpoint, was successful. The surgeon was able to use all of Clare's own muscle tissue to patch her aorta. However, tonight has been tough.
I am writing this after about two hours of intense crying and praying. These next 12-24 hours are rocky for Clare. Given the complications due to her Williams Syndrome and the condition of her blood vessels, the doctors are walking a tight line with keeping her body functioning. Clare's two obstacles post-surgery are bleeding from her surgical site (because the patch on her aorta is so extensive) and maintaining her blood pressure. The doctors have a fine balancing act keeping her blood pressure at a good rate while keeping her heart beating and her circulation going. This is harder than it sounds. If her blood pressure gets too high, she will start bleeding. If her blood pressure gets too low, she will have problems with the blood circulating throughout her body, which would have an impact on the other systems of her body.
When we first got to see Clare post-op in the ICU, she looked, quite frankly, terrible. She had tons of wires, tubes, lines, monitors, and 15 different medications being pumped into her body. Her chest was still open because the surgeon did not close her breastbone due to the risk of bleeding. (This was not as gruesome as it sounds because her chest was covered by a betadine bandage.) She had two nurses working steadily on her, and we were updated by the ICU cardiologist. Our family came in one-by-one to have a peek at her. It was hard seeing our little girl like that, but everything seemed in control. Then it all changed. Suddenly, Clare was a "Code Blue." Doctors, nurses, and special techs with scary-looking equipment came rushing in. Shawn and I got shoved to the side, not out of rudeness, but because everyone was focused so intently on Clare, they just didn't see us anymore. Finally, one of the doctors came over to talk to us. Clare's heart rate had dropped and her blood pressure increased. She was in trouble. The team of specialists were trying to gain control over her system again. She was put on an external pacemaker, among other machines. I can't even begin to explain what all they did to her because I don't know. And I don't know if I want to know. It became too much for Shawn and I, and we left. This was the hardest decision. I was so scared to leave my baby, but I couldn't stay there and watch helpless not knowing what was going on and in the way. The doctor explained that this was expected to occur post-op due to the Williams Syndrome and the multiple vessels involved in Clare's surgery. Plus, although the patch will correct her aortic problems, the pulmonary side of her heart is still very sick. He explained that the doctors were trying anything and everything to get Clare stable again. He said this might happen throughout the night as they worked to get her through this. None of that made me feel any better. I can't put into words the conflicting emotions between staying and going, but finally Shawn and I decided to go. We were no help to Clare in the condition we were in.
We came back to our hotel, cried, prayed, and held each other. I tried to go to sleep. Eventually, Shawn told me he was going to go back over to the hospital. Clare's nurse was going to call us if we were needed, but it was too hard to just sit around. I did not go with Shawn because I was so physically sick from all the emotional stress. When Shawn came back 30 minutes later, he brought good news. Clare was back in stable condition. She was back to only having the two nurses with her. Her amazing team of doctors had gotten her through that rocky moment. Shawn gave Clare a kiss and told her that Mommy and Daddy love her very much and were praying for her. I am so glad Shawn went over there. Although I did not see Clare, I don't have that last terrifying vision of her as I go to sleep tonight. I am sure there will be other rocky moments tonight and tomorrow, but Clare has us shown again and again that she is a fighter. And God has shown us again and again that He is taking care of her.
Clare's not out of the woods yet, but she is in good hands, physically and spiritually. If anyone is checking the blog late tonight, please say a special prayer for Clare and her doctors tonight. And for us, too!
Tuesday, November 08, 2005
Surgery Update
We are in hour four of Clare's open heart surgery and just received word that Clare is successfully on the heart-lung bypass machine. There are two very crucial points in her operation - going on the bypass machine and coming back off. So we are past the first crucial point. We have not been given too many details except that, so far, she is doing well.
While she's on the bypass machine, the surgeon is repairing her aorta. Once he's done, they will begin the transition off the machine and Clare's heart and lungs will have to function for themselves again. Then they will close her up and send her to recover in the Cardiac Intensive Care Unit (sounds like a breeze, but we're talking hours here!). We have been told that she will be in the CICU for 4-5 days, with the first 1-2 days on a ventilator and other machines (possibly including a G-tube for feeding), so her heart does not have to work so hard.
Thank you for the continued prayers.
While she's on the bypass machine, the surgeon is repairing her aorta. Once he's done, they will begin the transition off the machine and Clare's heart and lungs will have to function for themselves again. Then they will close her up and send her to recover in the Cardiac Intensive Care Unit (sounds like a breeze, but we're talking hours here!). We have been told that she will be in the CICU for 4-5 days, with the first 1-2 days on a ventilator and other machines (possibly including a G-tube for feeding), so her heart does not have to work so hard.
Thank you for the continued prayers.
Monday, November 07, 2005
Another Moment of Prayer
Well we have not even been admitted and we are already on Hospital Time! Clare's surgery has been moved from 8:00 am to 10:00 am. So if you read this in time, we would like to have everyone pray together at 10:15am. If you do not read this in time, and pray at 8:15am, thank you, we will take all the prayers we can get, no matter the time!
Sunday, November 06, 2005
Moment of Prayer
We are asking our faithful companions to have a moment of prayer for Clare on the day of her surgery, Tuesday, November 8. We are planning on doing it ourselves at 8:15 am (this is around the time Clare's surgery will start). Please join us, for the power of prayer of many is great.
"I can do all things through Christ which strengtheneth me." - Philippians 4:13 (the quote from my daily scripture calendar for November 8)
"May today there be peace within. May you trust God that you are exactly where you are meant to be. May you not forget the infinite possibilities that are born of faith. May you use those gifts that you have received, and pass on the love that has been given to you. May you be content knowing you are a child of God. Let this presence settle into your bones, and allow your soul the freedom to sing, dance, praise and love. It is there for you!" -St. Therese's Prayer
"I can do all things through Christ which strengtheneth me." - Philippians 4:13 (the quote from my daily scripture calendar for November 8)
"May today there be peace within. May you trust God that you are exactly where you are meant to be. May you not forget the infinite possibilities that are born of faith. May you use those gifts that you have received, and pass on the love that has been given to you. May you be content knowing you are a child of God. Let this presence settle into your bones, and allow your soul the freedom to sing, dance, praise and love. It is there for you!" -St. Therese's Prayer
Friday, November 04, 2005
Control Freak
I am somewhat of a control freak. I say "somewhat" because I am not totally inflexible, but I do like things my way (just ask Shawn!). And I come by this honestly (not naming any names).
The things I like my way the most are in my domain. And being a stay-at-home mom, that primarily means my kids and my house. It has taken me four long years, but I have finally (and somewhat graciously) relinquished control of the office in our house. (Anyone who has been over our house in the last four years knows what I am talking about.) The office used to be the bane of my existence when it came to house cleaning. But when your house is small, your husband works from home, and you really cannot help him clean up his space because you don't know what's important and what's not when it comes to his work stuff, you eventually have to concede defeat. Which I have done.
But I am having a lot of trouble giving up that control elsewhere. This has been on my mind a lot lately because of our extended hospital stay coming up. I have to give up one of the most important parts of my domain - Jamie. I have to relinquish my control (and by that, I mean care) of him over these next 1-2 weeks. Yes, we have a schedule planned out, and Jamie will spend his time with Shawn and others that love him and will take good care of him. But it is so hard for a mommy to let go. I am so bad that I am nervous about letting Shawn pack his suitcase to spend the weekend at Grania and Grand Dad's house. But I have to let Shawn pack his suitcase because I am already packing his suitcase (two days in advance) so Jamie can stay at his friend Ethan's house on the night of Clare's surgery, and I won't be here to then unpack that suitcase to repack it for the weekend. It's driving me bonkers! (And don't even mention the lists I have made for everyone about Jamie's snacks, sleep schedule, etc.) See how sick I am!?!
I am fairly in tune to my psyche, and I admit that part of my control problem (besides that it is in my personality) is that I do not have this control over Clare's life. I should have known I had lost the control from the day of her birth. She was on her own schedule coming into this world - 9 days late and had to have labor induced when I was really ready for her to come, then she was delivered when I was only 7 cm dilated and not ready at all! A parent knows that someday they will not be in control of their children's lives anymore. I just was not ready to give a lot of that up in Clare's infancy. But we have been forced to. So much of what happens to her is out of our hands. So I am reluctant to give up that control when it comes to Jamie.
This journey we've been on has taught me some important lessons about life and my perception of it. One of those lessons lately has been the old saying, "Let go and let God." I think I can truly say that when it comes to Clare, I am there. I have to be there and let God have her life in His care or I could not function from day to day with the worry and stress. It is in the other areas of my life that I am having trouble with that.
I want to slightly change the saying to one that has also become crucial in our lives now - "Let go and let others." We couldn't walk this journey without the incredible support of the people walking it with us. From our parents and siblings who wait at the hospital with us during Clare's procedures to our dear friends who rack up countless hours watching Jamie to the generous financial support from loved ones to the people across the country praying for us. It has been hard for me to admit that we need help. But we do - we can't do this without them either.
I am not all the way in my journey yet, but I am working on it, and God is working on it with me. At least I am ready to let Shawn pack Jamie's suitcase (I think).
The things I like my way the most are in my domain. And being a stay-at-home mom, that primarily means my kids and my house. It has taken me four long years, but I have finally (and somewhat graciously) relinquished control of the office in our house. (Anyone who has been over our house in the last four years knows what I am talking about.) The office used to be the bane of my existence when it came to house cleaning. But when your house is small, your husband works from home, and you really cannot help him clean up his space because you don't know what's important and what's not when it comes to his work stuff, you eventually have to concede defeat. Which I have done.
But I am having a lot of trouble giving up that control elsewhere. This has been on my mind a lot lately because of our extended hospital stay coming up. I have to give up one of the most important parts of my domain - Jamie. I have to relinquish my control (and by that, I mean care) of him over these next 1-2 weeks. Yes, we have a schedule planned out, and Jamie will spend his time with Shawn and others that love him and will take good care of him. But it is so hard for a mommy to let go. I am so bad that I am nervous about letting Shawn pack his suitcase to spend the weekend at Grania and Grand Dad's house. But I have to let Shawn pack his suitcase because I am already packing his suitcase (two days in advance) so Jamie can stay at his friend Ethan's house on the night of Clare's surgery, and I won't be here to then unpack that suitcase to repack it for the weekend. It's driving me bonkers! (And don't even mention the lists I have made for everyone about Jamie's snacks, sleep schedule, etc.) See how sick I am!?!
I am fairly in tune to my psyche, and I admit that part of my control problem (besides that it is in my personality) is that I do not have this control over Clare's life. I should have known I had lost the control from the day of her birth. She was on her own schedule coming into this world - 9 days late and had to have labor induced when I was really ready for her to come, then she was delivered when I was only 7 cm dilated and not ready at all! A parent knows that someday they will not be in control of their children's lives anymore. I just was not ready to give a lot of that up in Clare's infancy. But we have been forced to. So much of what happens to her is out of our hands. So I am reluctant to give up that control when it comes to Jamie.
This journey we've been on has taught me some important lessons about life and my perception of it. One of those lessons lately has been the old saying, "Let go and let God." I think I can truly say that when it comes to Clare, I am there. I have to be there and let God have her life in His care or I could not function from day to day with the worry and stress. It is in the other areas of my life that I am having trouble with that.
I want to slightly change the saying to one that has also become crucial in our lives now - "Let go and let others." We couldn't walk this journey without the incredible support of the people walking it with us. From our parents and siblings who wait at the hospital with us during Clare's procedures to our dear friends who rack up countless hours watching Jamie to the generous financial support from loved ones to the people across the country praying for us. It has been hard for me to admit that we need help. But we do - we can't do this without them either.
I am not all the way in my journey yet, but I am working on it, and God is working on it with me. At least I am ready to let Shawn pack Jamie's suitcase (I think).
Thursday, November 03, 2005
Gearing Up for Surgery
We came home on Tuesday around noon (our shortest hospital stay thus far). As most know, the catheterization went incredibly well. When we received our hourly update at 10am, we were told that the doctor had balloon dilated Clare's left pulmonary arteries again, but that no additional stents were needed at this time. Shawn and I were elated - we had been told the night before that more stent placement was a very real possibility. And this would mean another trip to the ICU, a longer hospital stay, more drugs, etc. The nurse informed us the doctor was getting ready to go into the right arteries, and we would hear from her in an hour. When she called back at 11am, we were mentally prepared again for the news. Or we thought we were.
Shawn and I were on the edge of our seats during this last catheterization. Clare's first two caths were full of nasty surprises for us. We were so unprepared for most of what happened during those procedures. I told myself I was not going to let that happen again, so I braced myself for the worst. When the nurse said that Clare was done, she was extubated, she was out of anesthesia and in recovery, I thought I heard wrong. I couldn't believe that it was over. I hung up the phone, told Shawn, and started to cry. I just couldn't believe that Clare was done, that she was okay. You would think we would be "old hands" at this stuff now. I thought it would get easier once the first one was done, but it doesn't. I think, in some ways, it gets harder. Because now you REALLY know what can go wrong.
I thank God for this last procedure. I am still a little in shock over how "easy" it was. Clare did so well during the cath. Her body tolerated everything much better this time. The doctor only dilated her arteries and no additional stents were needed in either side (which means that, although Clare's arteries are continuing to narrow, they did not narrow enough to need more stents and the stents she has in there are doing their job). Clare did not need a blood transfusion or extra meds (except for the old standby of Heparin). She was only under anesthesia for two hours, rather than the normal four. All of these factors equate to the fact that Clare was discharged before noon the next day (a first for us!), and she is already back to her normal sleeping, eating, and other bodily function routines. Which means our happy baby is back! We literally had NO adjustment coming home this time. (Another first!)
This last procedure was a blessing. I was dreading Clare having her cath one week, then coming home, and having to go back into the hospital a week later. I just wanted to get everything over with. But by having this last cath over and a success, it means that Clare has no recovery before her surgery. She is going into her surgery as healthy as she can be right now.
Shawn and I were on the edge of our seats during this last catheterization. Clare's first two caths were full of nasty surprises for us. We were so unprepared for most of what happened during those procedures. I told myself I was not going to let that happen again, so I braced myself for the worst. When the nurse said that Clare was done, she was extubated, she was out of anesthesia and in recovery, I thought I heard wrong. I couldn't believe that it was over. I hung up the phone, told Shawn, and started to cry. I just couldn't believe that Clare was done, that she was okay. You would think we would be "old hands" at this stuff now. I thought it would get easier once the first one was done, but it doesn't. I think, in some ways, it gets harder. Because now you REALLY know what can go wrong.
I thank God for this last procedure. I am still a little in shock over how "easy" it was. Clare did so well during the cath. Her body tolerated everything much better this time. The doctor only dilated her arteries and no additional stents were needed in either side (which means that, although Clare's arteries are continuing to narrow, they did not narrow enough to need more stents and the stents she has in there are doing their job). Clare did not need a blood transfusion or extra meds (except for the old standby of Heparin). She was only under anesthesia for two hours, rather than the normal four. All of these factors equate to the fact that Clare was discharged before noon the next day (a first for us!), and she is already back to her normal sleeping, eating, and other bodily function routines. Which means our happy baby is back! We literally had NO adjustment coming home this time. (Another first!)
This last procedure was a blessing. I was dreading Clare having her cath one week, then coming home, and having to go back into the hospital a week later. I just wanted to get everything over with. But by having this last cath over and a success, it means that Clare has no recovery before her surgery. She is going into her surgery as healthy as she can be right now.
A Special Comment
S~ Teresa and I are always touched by the love and support that we get back from this blog. We read every comment. The comment below really touched us so we wanted to publish it for all of you to read. Thank you to this anonymous commenter for lifting our spirits.
-So thankful that the procedure went well for Clare yesterday! I have heard of Clare's story from a relative of yours and have been keeping you and your family in my prayers. As I read of this "journey" through your entries in the "Clare's Journey" blog, I am usually brought to tears. So many, like myself, have been touched through Clare's life and through the faith, love, strength and determination of you and your family. I know God can use tough situations for His good - and I see more and more how much this is not only a journey for Clare, but it is also a journey that the Lord is bringing your entire family through. I am humbled by your faith and love -- it's brought me to my knees in prayer for your darling daughter. Keep looking up -- the Lord has a mircaulous plan for your family and for Baby Clare! Through this tough situation, I pray you continue to see the victories and miracles of His hand in your lives and in the life of your beautiful daughter!In my prayers-
So once again, thank you for all your lovely comments . It is a comfort for us to have all the love and support.
-So thankful that the procedure went well for Clare yesterday! I have heard of Clare's story from a relative of yours and have been keeping you and your family in my prayers. As I read of this "journey" through your entries in the "Clare's Journey" blog, I am usually brought to tears. So many, like myself, have been touched through Clare's life and through the faith, love, strength and determination of you and your family. I know God can use tough situations for His good - and I see more and more how much this is not only a journey for Clare, but it is also a journey that the Lord is bringing your entire family through. I am humbled by your faith and love -- it's brought me to my knees in prayer for your darling daughter. Keep looking up -- the Lord has a mircaulous plan for your family and for Baby Clare! Through this tough situation, I pray you continue to see the victories and miracles of His hand in your lives and in the life of your beautiful daughter!In my prayers-
So once again, thank you for all your lovely comments . It is a comfort for us to have all the love and support.
Monday, October 31, 2005
Carpe Diem
S~Ever since Clare was diagnosed with Williams Syndrome, each doctor's appt and hospital visit has always resulted in more harrowing news... except today! As we prepared for this cath, we were expecting the worst. Clare seemed to be getting much worse each day. So we were surprised when we got our 11:00am update, expecting one more update after that, and the nurse said Clare was done, and they did not have to put in any stents! Surgery is still on for next week, but for now, we are done. It was so nice to finish the procedure and not have doomsday hit us. Teresa and I were brought to tears because we did not have any bad news. Is Clare on the upswing??? Well, it is too soon to jump to that conclusion (especially with the dreaded surgery coming up) but for today, she did well. She does not need to be in the ICU and her procedure went beautifully. So we are living for today... Carpe Diem!
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