Christmas Blessings

Well, the unwrapping is over, but the fun has just begun. Shawn has this week off work, so we are enjoying our new Christmas presents and being together as a family. We have this one last week of the year to relax, with absolutely no appointments and nowhere we have to be before the crazy new year starts. January will be a month where Clare once again sees every one of her doctors. So we'll back to our busy schedule. I am going to cherish this week!

We are so blessed during this Christmas season for many, many reasons, but, most importantly, because we are together as a family and Clare is doing so well right now. She didn't have a clue what was going on Christmas morning, but she loved "helping" to unwrap presents and loved eating the wrapping paper even more. She enjoyed watching the excited antics of Jamie because he truly understood about Santa Claus this year!

During the remainder of this Christmas season (which we celebrate in our house until January 6, the Feast of the Epiphany, when the wise men came to visit Jesus, and Shawn's birthday - who likes to remind me again and again that he was born on the Feast of Kings), we wish everyone good cheer in the New Year! We also keep in prayer our fellow WS and "heart" families whose children remain sick or hospitalized and those who have lost their children this past year.

Merry Christmas!

This is such a joyful Christmas for us - not because of gifts, not because of excellent food. This Christmas was joyful because of a little angel who liked the wrapping paper over the actual presents and a little boy who picked out a talking farm animal toy to give the Baby Jesus and told us, "I like Santa, he's my best friend!"

May the joyful spirit of the birth of the Christ child be with you all this Christmas.

Love,
Shawn & Teresa
Jamie & Clare

Busy, Busy, Busy

You know you need some help when you have blogger guilt. I have not posted in a while! I plead extreme busy-ness both with our normal life and our pre-Christmas festivities.

Today we went to the Williams Syndrome Association New England Holiday Party. We went on a horse-drawn wagon ride through the snowy woods. The ride reached its destination at Santa's holiday party. Mrs. Claus passed out cocoa and cookies, while Santa talked to the kids. There were also elves, Christmas bears, and other characters to meet the kids. We even got to take a walk to see the reindeer! Jamie was shy of Santa at first, but then he asked him point blank, "Where's Rudolph?" We had a great time (until Clare decided she was too cold), and it was nice seeing the other WS families in our area again.

Clare had a sedated echocardiogram yesterday. We drove over to the clinic at the crack of dawn in snow and sleet with our cranky baby who had not eaten for a few hours. Clare did great during her echo, but had some vomiting from the anesthesia once she was awake. We were not allowed in with her for the echo (a first for us), so it was very reminiscent of our hospital experiences - saying goodbye to her, leaving her with the nurse and doctor, then seeing her once she was awake. The echo itself was fairly status quo. Her ascending aortic patch and pulmonary stents look great. Her pressures are creeping up again, though, so her doctor believes the narrowing is worsening in her distal pulmonary arteries (too small and too far into the lungs to be seen on the echo). Also, Clare's descending aorta is narrowing as well. Nothing unexpected, but Clare will most likely have another cath around her birthday. She has another sedated echo scheduled for mid-January, so at least we know she won't have anything before then. If Clare needs an echo before her first birthday, I am okay with that - I just want to be home on her birthday!

Clare has gained 11 ounces since coming home from the hospital. She is up to a whopping 14 lbs, 6 oz. now! We were excited to hear that. It's not a huge weight gain, but it's fairly consistent with how Clare was gaining before her surgery. My worries over her not gaining weight are subsiding. She just needed a little time to get back into her rhythm. She has been eating baby oatmeal for over 2 weeks now. She likes the oatmeal and has been increasing the amount she eats. After Christmas, I am going to start making other baby food for her. There will be lots of experimenting with different tastes and textures over here to find what works best for Clare! We are also going to meet with a nutritionist and swallow specialist to determine what's best for Clare with her diet and eating technique. Her recent lab work showed borderline hypercalcemia again, so now that she is starting on solids, we need to be cognizant of what foods are naturally high in calcium.

Clare continues to work on sitting up. We were hoping she would be sitting by Christmas (she will be nine months old on New Year's Eve), but it doesn't look like she'll make that goal. She will be reevaluated for her therapy at the end of the year, since it's been six months since she started (hard to believe!). Other than sitting, Clare has met all the other goals we set when she was three months old, including eating off a spoon, which I wasn't sure she would meet. You go, girl!

Another big issue we've been tackling is sleeping. Clare had been waking up every 1 1/2-2 hours at night for about two months. Clare's cardiologist told us we were not permitted to let Clare cry, so whenever she woke and couldn't fall back to sleep, I automatically nursed her to sleep. That created a little monster who didn't know how to fall asleep on her own. Since Clare will be six weeks post-op on Tuesday (I can't believe it!!!!) and her results look good, the cardiologist finally cleared Clare for crying. No mom wants to hear their baby cry, but it is very hard on me because for the first 8 months of her life, Clare crying was a very bad thing. Whenever Clare got worked up, I was petrified something was going to happen to her. Shawn and I debated whether to let Clare cry it out to help her learn how to fall asleep on her own. I just hated the thought of her crying to sleep after all she has gone through. When I asked for some suggestions on the Williams e-mail list, another mom with a young baby with WS encouraged me to forget about the Williams for a moment and just think of Clare as a regular baby. What would I do? Sometimes I get so caught up in how Williams syndrome is affecting Clare that I forget that she is also a "normal" baby in many ways. Although it's very hard to not spoil Clare and be more lenient with her, we know that we shouldn't give her special treatment (unless it's medically necessary). And in this case, it was okay to let Clare cry and she really needed to sleep longer stretches at night for her own health.

Again, Clare surprises us with what she is capable of. It took three nights for Clare to learn to fall asleep on her own. Now she's sleeping 4-6 hours stretches and waking only once or twice at night to eat. (And I am letting her to do that because my little peanut needs the calories!) It's an important lesson for me to learn to treat Clare normally. Obviously there will be many special circumstances in her life, but for the most part, I shouldn't expect anything less of her than I would expect of Jamie as a baby. It may take a little more time and we may use different methods of meeting goals, but Clare can do great things! Like sleeping through the night!

Snow Princess

Our snow princess, December 9, 2005.

Making Gains

We apologize for not posting as often. I am afraid we spoiled people by posting frequently during our hospital stay. This is a good thing because it means we're back into the swing of our everyday life, which does not leave a lot of computer time. Today, however, I am fighting a cold, so Jamie is spending the day with his grandmother. This is giving me some much needed rest (especially while Miss Clare is napping!).

We have been very busy with doctor's appointments. Everyone wants to see Clare post-surgery. In the last two weeks, she's had two cardiology appointments plus visits with the endocrinologist, pediatrician, and yet another new doctor, a neonatologist. There are some issues with her thyroid and calcium levels, so her endocrinologist has ordered some more lab tests done (we're awaiting the results). Her pediatrician is helping us focus on increasing Clare's caloric intake to aid in weight gain. After this hospitalization, Clare "fell" off the weight chart (she is now in the 1st percentile with her weight as compared to other babies her age - prior to surgery, she was in the 10th percentile). We will see him again in January for Clare's normal 9-month well baby visit. As long as Clare continues to gain weight (even if it's slowly), is progressing with solids, and remains relatively healthy, her pediatrician is not too concerned. Clare is being followed by a neonatologist right now primarily to administer the RSV antibody shot throughout the cold season. This monthly shot will help Clare fight off RSV, a very harmful virus to infants, especially those with health issues. Clare had her second cardiology check-up yesterday. Based on physical examination, Clare is doing very well post-op. Her cardiologist discontinued her Lasix medication, so now we are only on five medication doses a day! Quite an improvement from 12 immediately post-op. So, yes, we've been busy!

Clare also started with her therapy again. She still has physical restrictions, so we are focusing on eating. We gave Clare oatmeal for the first time last week. She still has trouble swallowing, but seems to like the oatmeal. She opens her mouth for bites and protests loudly if she wants more. That's a great step! I am expecting that eating solids will be a very slow transition, but we will get there eventually.

Clare is scheduled for an echo done under sedation on December 16. We are praying for more good news (such as everything is status quo and Clare can come off the blood pressure med).

A Good Wait

S~ As Teresa and I look back at this past year, we realized we have done a lot of waiting... actually, that is putting it mildly. We started the year eagerly waiting for the arrival of Clare. Then we were waiting to find out what her diagnosis was, then we have done a lot of waiting as they performed her three catheters, and, lastly, waiting while they did the open heart surgery. Now as we are just starting the second week of Advent, we are waiting again. This time for something a little better - we are waiting to celebrate the birth of Jesus.

Teresa and I really enjoy Advent. We have an Advent wreath on our kitchen table. Every night, we light a candle and read about the upcoming birth of Jesus from a family Advent book. We have an Advent calendar that Jamie gets to open a door and pick out a piece of chocolate (which makes him really like Advent as well), and, this year, we decided to say a decade of the rosary together as a family. The important thing is that it is a quiet, peaceful waiting.

Yesterday, we went to the mall for a Build-a-Bear birthday party. So we decided to go a little early to bring Jamie to see Santa. Within ten minutes, both Teresa and I were done - done with the crowds, done with the lines, done with the rude people cutting us off so they can run into the Discovery Store to get the robotic raptor that will be broken by New Year's. (Jamie was fascinated by it, and we almost made the plunge.) Teresa and I have finished our Christmas shopping. We usually try to get it done before Thanksgiving. We do this for two reasons: 1. to avoid the crowds, and 2. so we can truly enjoy the Advent season. We spend our nights looking at the Christmas tree and village, or we get the kids in their pajamas and drive around looking for Christmas lights. So for those of you who have not finished your shopping, get it done and spend time with your family for the remainder of Advent. Do your shopping online, be done with it, and drink some eggnog in front of the tree. I hope I haven't stressed any of you out, but Advent is a time of eager anticipation. How can you do that if you are too busy shopping? Merry Christmas!

Clare's Angel, A Shameless Plug

Before Clare's surgery, I posted about a piece of artwork my Aunt Sara created entitled "Clare's Angel." This is a special "girl" Sara created for Clare Therese. We have since received our own Clare's Angel in the mail. It is gorgeous. The photo I posted does not do the print justice.

I bought a special frame for my Clare's Angel and hung the print in our living room. I like having the angel in a prominent spot in our house because seeing it daily reminds me that Clare has many angels looking over her and that she is an angel on earth. Clare has brought joy, love, hope, and inspiration to so many people.

If you are interested in checking out Clare's Angel, please visit Sara's website at: www.saragarska.com
We also keep a link available to the right of the posts on this blog.

Back Into Our Routine

Clare started her occupational therapy again today. She has physical restrictions until she's six weeks post-op (no tummy time, cannot be picked up under her arms), so her therapist is going to take this time and concentrate on starting solids.

Clare lost weight in the hospital and, as of last Friday (the 25th), had not gained any weight back yet. Her cardiologist said she would have liked to see Clare gain weight by two weeks post-op (which was the 22nd), but that didn't happen. Clare refuses to take a bottle, a sippy cup, anything else right now, so that's going to be a big goal with therapy. I don't really care if Clare takes a bottle (there's really no point to it now since she's 8 months old - it would just be another thing to wean off of), but taking solid food is very important, for her growth and development and as a means to get extra calories into that little body!

It's nice to be getting back into our normal routine. We still have many doctor's visits and other appointments, but to us, that's normal life. If all these mean Clare is staying healthy, I will take it!

Thanksgiving

S~ Well, as many of you can guess; we are thankful for so much this year. But I thought we would put a list up.

• We are first and foremost thankful for Jamie and Clare.
• We are thankful for surgeons and their delicate and skillful hands.
• We are thankful for nurses who make us feel at home in a cold hospital.
• We are thankful for our parish and all the prayers we receive from them.
• We are thankful for our family, we could not have been able to get through this without their help.
• We are thankful for Heffalump kisses and the giggles that come with them.
• We are thankful that Teresa can stay at home and raise the kids.
• We are thankful for my job which allows that to happen.
• We are thankful for good news after an echo.
• We are thankful for Clare's "Special Friend" and the pink snowsuit!
• We are thankful for the unexpected Stampin' Up cards from all across the country.
• We are thankful for our faith and the grace we have received from it.
• We are thankful for our friends and all the help they have given us.
• And, most importantly, we are thankful for all of you who support us through this website!

Teresa, Jamie, Clare and I are so thankful to all of you. This has been a tough year for us, but it has also been a year where we have grown closer to each other, closer to God, and have really come to an understanding of what is important. So, take today to be with each other, tell people why you are thankful for them, tell God why you are thankful for Him, and spend time with each other. From our family once again, Thank you for all your support. Have a Happy Thanksgiving!

(P.S. We are thankful for the four inches of snow that is being dumped on us today.)

Good News

We finally had a good echo! Clare had her afternoon of tests yesterday with her pediatric cardiologist here at home. Her heart looks great! Her aorta is the size a normal aorta should be, and her pulmonary side even looks good. There is almost no pressure change across her aorta and a very mild one across the pulmonary branches where her stents are. Her cardiologist said that if Clare continues along this path of progression, she will not need another cath for 5-6 months. We were elated at this news! Now Clare does have a history of progressing faster than expected, but I will be happy to even get 4 months down the road! It would be wonderful to make it past Clare's first birthday at the end of March before she has to go back to the hospital.

Recovery

Clare continues to do well at home. She is having a bit of an adjustment with her sleeping, but she had this issue after her last stay in the ICU, so I know it will work out eventually. We also are adjusting to being back at home and staying on top of Clare's recovery. A visiting nurse is coming in twice a week for incision care, medication and feeding issues, and weight checks. Clare lost a pound in the hospital (which is a lot for a 14-pound baby), so the nurse will help us keep track of her weight and make sure she is gaining.

I am a scrapbooker, and as well as blogging, have been including Clare's hospital stays in her first-year scrapbook. So I have been taking photos to document Clare's progress. When Clare was in the ICU, Shawn and I debated whether to take photos of her hooked up to the ventilator. It was a scary sight for us, and we didn't think we would want to remember it years later. Honestly, I will never forget that sight, photos or not. We decided to take some photos because we want to show Clare down the road what a strong baby she was and what she went through. We are so proud of our little girl! The bottom photo is from Saturday, November 12 - Clare was four days post-surgery. She actually looks pretty good in the photo compared to how she looked immediately after surgery. The top photo is Clare five days later, November 17, after we were transferred to the cardiac floor. It is amazing what a difference five days make! Clare's recovery is unbelievable. She was such a sick baby when she first came out of surgery. Less than two weeks later, she is smiling, playing, eating, and at HOME!

Saints Clare and Therese

FIrst off, we are home! And so glad to be home. Clare fell asleep on the car ride home. When she woke up, she was in her car seat in the living room. She looked around and gave the biggest smile I have ever seen from her. She knew she was home! She has been the happiest little camper this afternoon. Thank you all for your continued prayers in bringing our baby home safely.

I know Clare's patron saints, Saint Clare of Assissi and Saint Therese the Little Flower, were watching over Clare during her hospital stay. Our pastor and a group of fellow parishoners were doing a pilgrimage in Italy these past two weeks. Shawn and I find it very interesting that the length of this pilgrimage coincided exactly with our time in the hospital. Each morning on the pilgrimage, Clare was offered up in the intentions of the Mass. Shawn gave a picture of Clare to one of our friends going on the pilgrimage. Clare's photo was placed at the foot of where Saint Clare's preserved body lies encased in glass. This same friend and his wife (thank you, Bob & Phyllis!) brought us back a statue of Saint Clare from their visit to Assissi. The statue was blessed by Pope Benedict XVI at a general blessing the group witnessed in Rome. We are blessed to have such friends who are thinking of us and praying for us even as they are enjoying a trip around Italy!

The day of Clare's surgery, my grandmother Teresa discovered a white rose had bloomed in her garden. She sent us a photo of this rose to let us know that St. Therese was looking out for Clare Therese during her surgery and recovery.

Going Home

We are going home! We don't know what time, but it will be today. We are ecstatic and very antsy to get out of here. Although it will be an adjustment going back to "normal" life, we cannot wait. I can't believe we're getting out of here so early.

Clare's progress on the cardiac floor has been fabulous. She has not had any more "episodes" with her heart rate. The doctor removed her pacer wires from her chest yesterday as well as all her stitches. She had to be monitored for one hour after they did this, and did fine. She has been feeding as normal and her weight is going up again. Clare has been playing a little and I've seen some smiles. We are blessed to have our baby back!

Clare's echo yesterday went well. She tolerated the sedation process beautifully. So good in fact, that her cardiologist here cleared her for sedated echos in the future - we'll see if her home cardiologist agrees! The good thing about being able to do sedated echos is that they get a more accurate picture of Clare's heart when she is sedated (crying and moving can have an affect on her numbers), so hopefully we won't have the scares we've had with her past echos. Her echo showed that her ascending aorta and aortic arch look like a typical aorta. Her descending aorta is still a little small, but it's not at a degree where it poses a danger to Clare right now. Her pressures are high in the pulmonary side of her heart, but that is expected. She is definitely on her way to having another cath, but hopefully it will not be until after Christmas. The cardiologist was actually excited about the results of Clare's echo, which made us excited!

So we are on our way out of here! Our big thing today is to learn about Clare's new meds and dosing schedule. She is still on methodone and is being weaned off it very slowly so she does not go through withdrawal. Clare will have a total of 12 doses of medication a day with all her various meds, so I am ready to draft her dosing schedule with help from the nurse!

Our New Way of Life

To those of you who have gotten used to me posting daily, our new way of life prevents me from that luxury now. Not that I am complaining! Things are more "low-key" here in that Clare does not have a nurse constantly by her side, and I do much more of the caretaking. So my posts may start to become more infrequent. Tonight, Shawn is here and he is having his Daddy time with Clare, so I got to slip out for a little while.

Clare has settled in nicely to life on the cardiac floor. We had a great night's sleep last night (first night that I slept with her in the room) and a fairly good day. I belong to an e-mail list for the Williams Syndrome Association and have been told many times by experienced parents to expect "two steps forward and one step back" with any procedure, recovery, etc. I am finding that is so true. Clare made two big steps forward today in that both her oxygen cannules and feeding tube were removed. She is finally tube-free on her face! We were both very happy with that development. Her nursing is still slow, but she is doing much better. Her weight gain and fluid output (a.k.a. diapers!) have been sufficient enough that she no longer needs supplemental feeds through the tube.

Clare's step back is hopefully a minor one. She had two moments (one today and one a couple days ago) when her heart rate plummeted for about two seconds then went back to normal. The first time it happened was in the ICU. The nurse thought it might just have been a glitch in the monitoring system, and since it didn't happen again, didn't think twice about it. Then it happened again today while Clare was sound asleep. It was a scary moment for me because I was sitting next to her listening to her snore softly while I read. Suddenly there was complete silence, followed by a loud choking/gasping noise by Clare, and she woke up crying. The alarms on her monitor were going off from this episode. Her cardiologist believes this occurrence is due to her new blood pressure medication. The drug slows her heart rate so her heart does not work as hard as it did pre-op, thus lowering her blood pressure. The doctor explained to me that when you hold your breath or bear down, your heart rate normally slows down. He said it sounded like Clare might have gagged on her saliva while she was sleeping and, since she still had the feeding tube and oxygen in her nostrils at the time, she actually stopped breathing for a second. Under normal conditions, this would cause her heart rate to drop. Due to the drug, it makes the drop even more pronounced. Since the tubes are now gone, they are going to watch and see if it happens again (she is monitored 24/7 anyway). If so, then the doctor will change her medication.

Tomorrow Clare is having a sedated echo so her surgeon can see how heart looks more than a week post-op. I am praying for good news!

My Lovely Wife Part 2

S~ Okay, those of you who know me might be thinking I am just kissing up for more Christmas presents, and while that is true, I have gained a deeper respect for Teresa this week by being a single Dad here at home. So I wanted to share this newspaper article that Teresa's Dad sent her. It made both of us cry and I thought I would share it with allof you. This is Teresa to a tee!

Written by Erma Bombeck Published in Today Newspaper September 4th 1993

Most women become mothers by accident, some by choice, a few by social pressures, and a couple by habit. This year, nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen?
Somehow I visualize God hovering over Earth selecting his instruments for propagation with great care and deliberation. As he observes, he instructs his angels to make notes in a giant ledger.
"Armstrong, Beth; son; patron saint, Matthew. Forrest, Marjorie; daughter; patron saint, Cecelia. Rudledge, Carrie; twins; patron saint... give her Gerard, he's used to profanity!”
Finally, he passes a name to an angel and smiles. “Give her a special needs child.”
The angel is curious. "Why this one, God? She's so happy."
“Exactly," smiles God. “Could I give such a child to a mother who does not know laughter? That would be cruel.”
”But has she patience?” asks the angel.
“I don't want her to have too much patience or she will drown in a sea of self pity and despair. Once the shock and resentment wears off, she'll handle it. I watched her today. She has that sense of self and independence. She'll have to teach the child to live in her world, and that's not going to be easy. This one is perfect. She has just enough selfishness.”
The angel gasps! “Selfishness? Is that a virtue?”
God nods. “If she can't separate herself from her child occasionally, she'll never survive. Yes, there is a woman I will bless with a child the world perceives as less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a spoken word. She will never consider a step ordinary. When her child says ‘Mommy‘ for the first time, she will be present at a miracle and know it! When she explains a tree or a sunset to her child, she will see it as few people ever see my creations. I will permit her to see clearly the things I see -- ignorance, cruelty, prejudice -- and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as if she were here by my side.”
“And what about her patron saint?” asks the angel, his pen poised in midair.
God smiles. “A mirror will suffice.”

Out of the ICU

The prayers worked. Clare's IV was put in last night, her central line removed, and we are finally on the cardiac floor. Yea! It's been another long day, but it was MOVING DAY!

For the first time in a week, Clare is out of her bed. She is patiently sitting in her stroller watching while I type this, so I am not going to write a long post. I have been promising her a walk all day once we were settled in, so we're off to take that walk.

Prayer for an IV

I have a simple prayer request tonight - pray for an IV!

We are still in the ICU tonight. Clare did great during the day with her NG-tube. As much as it pains me that she needs this tube to eat, you could tell she was feeling better with a little food in her belly. The IV nutrients will give her all she needs to survive, but they won't fill her tummy. She also nursed a little before bed (and nursed longer than before), so I know she won't need the tube for long. Auntie Chrissy came to visit today, and she entertained Clare by singing to her. Then Clare entertained Christina by chatting up a storm. She even smiled at Christina! She played a little today, too, so I can see our Clare slowly coming back.

Now that the feeding issue is squared away (as far as the ICU is concerned), of course, something else has come up. The teensy IV in Clare's foot failed today. It wasn't the greatest IV to begin with, but it was an IV. And they won't let Clare leave the ICU without another IV in. Tonight's mission is for the IV therapy nurse to get another IV in. So when you say your good-night prayers, please add a special intention for Clare's IV! It may not seem like much, but right now, that's what's standing in our way to get out of the ICU.

Working Our Way Out

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.

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!!

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!

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.

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.

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!

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!

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

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.

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!

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.

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!

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

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).

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.

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.

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!

Clare's Angel

My aunt Sara is an artist who has created a line of prints called Garska Girls. Garska Girls are collages that are made of magazine images pieced together. These thousands of bits and pieces have come together to create a collection of beautiful ladies. They truly are stunning.

Sara created one especially for Clare that she has named Clare's Angel. It was a project Sara started when Clare was born. Once she heard about Clare's diagnoses, Sara decided one of the purposes of selling prints of Clare's Angel was to donate the proceeds to defray the costs of Clare's medical expenses. We thank Sara for her generosity in this project.

You can view Clare's Angel and other Garska Girls at Sara's website: www.saragarska.com
If you interested in ordering a print of Clare's Angel, you can do so via the website which you can access from our website by looking in the title bar on the right of the web site and click on "Clare's Angel".

Clare's Angel, created by Sara Garska 

Surgery Date

Clare's open heart surgery is scheduled for Tuesday, November 8.

Everyone's in bed (why aren't I???), and I wanted to update the blog. I have been trying to think of something to write that's not depressing, but words are failing me. This is such a scary time for us. I never thought I would say this, but I cannot wait to get into the hospital. Shawn and I are so afraid of "something" happening to Clare while she's at home. I will breathe a big sigh of relief when we are finally in Boston on Sunday. Anyone who knows me knows that I HATE waiting. It's the waiting part that eats me up. Especially since we have noticed that Clare is a little dusky most of the time now. She is more tired, yet is having trouble sleeping (aka no naps and up every 2 hours at night, which makes for a tired mommy as well). She eats much more frequently. Our cardiologist explained that these are all signs that Clare is having trouble regulating her blood pressure since her heart pressures are so out-of-whack again.

I take comfort in knowing that God is watching over his little baby Clare. I know I've said this over and over, but I am just in awe of the tremendous outpouring of prayers, love, and support we've witnessed through our blog. People from all over have heard Clare's story and are keeping her lifted up in prayer. From the bottom of my heart, thank you.

Jamie (aka "Bob") the Builder, October 2005 

Clare Bear, October 4, 2005 

A Spooky Halloween

Clare is going in on Halloween for her catheterization. To make a long story short, the hospital is having a little trouble rescheduling her surgery because the chief of cardiac surgery wants to personally operate on Clare (which is scary to know because that means she is high risk, but at the same time, it is good to know that Clare is being worked on by literally one of the best pediatric cardiac surgeons in the world), but his schedule is extremely busy. So her catheter will be on Monday to relieve some of the pressure that is building up in her heart, then her surgery will hopefully be the following week.

I have to admit I am bummed to be missing Halloween this year. I will post pictures of our adorable kids in their costumes.

Surgery Rescheduled

Clare had her cardiology appointment and echo today, and, as usual, the news was not good. Her heart has worsened very quickly again, and she has been having more frequent periods of duskiness (turns blue) around her mouth. The cardiologist is trying to get her into surgery within the week. So, once again, we are back into the hospital much sooner than expected. We should find out the date tomorrow.

We are in shock, so I don't really have a lot to say except please pray.

Clare's sweet smile, October 16, 2005 

Smiling Sweetie

Way back when we started this blog, one of the first things I posted was that Clare had started smiling. She smiles frequently now. It is usually very easy to get our sweet baby to give us a big smile. However, it has been a little harder getting her to do it for the camera. Clare has been photographed by our professional photographer four times now, and she has yet to smile for his camera! My parents and sister Christina were visiting this past Sunday, and my mom was able to capture Clare's sweet smile for the camera. It totally lights up her face!

Trusting

Winter is coming... and that means so is flu season. And flu shots. I am one of those people torn between whether people need a flu vaccine. Being a conscientious mother who has heard varied opinions, I've read the pros and cons to the whole vaccination debate. This year, however, the choice was simple for me. We asked Clare's cardiologist if she should get a flu shot. The answer was "yes - ASAP." That cinches it for me. It's funny how, in our house, the cardiologist's word is golden. She (meaning the doctor) dictates many of our actions regarding Clare. Again, being a conscientious mother, I interviewed pediatricians prior to Jamie's birth and chose our pediatrician with care. We have been extremely pleased with him - in his treatment of both Jamie and Clare. He's a great guy - sense of humor like Shawn's (which I do believe is a good thing!), great with the kids, and an awesome doctor. But I allow myself to question his advice sometimes (not necessarily on medical decisions, but in regard to parenting). After all, I am the parent and know my children best. When it comes to the cardiologist, however, it's a whole different story. She happened to be the cardiologist on-call for our clinic the day after Clare was born and her murmur detected, so she became Clare's cardiologist by chance of their schedule. We liked her immediately, and over the past six months, have come to greatly respect her abilities and value her advice. I never thought someone outside our family would have such an influence on how we raise our kids and what choices we make for them. But she certainly does! I also never thought I would so literally have to trust my child's life to someone else. But we do trust her, and she cares so well for Clare. And thank God for that because I strongly believe that she is one of the reasons Clare is doing as well as she is. We can see God's hand in shaping Clare's life.

Back to the flu shots (sorry for the digression!). So we were at the pediatrician's for Clare's 6-month visit, and she was going to get her flu shot. The pediatrician strongly recommended the entire family get vaccinated because it is important for Clare's health that no one brings the flu into our house. So he asked if we wanted him to vaccinate Jamie as well that day. We definitely wanted Jamie vaccinated, but I was so nervous how he was going to do with it. We play often with Jamie's Fisher Price doctor's kit at home, and Jamie loves to give other people shots, but I was unsure how Jamie would take being on the receiving end of a real shot! He hadn't received any shots for over a year. He is so much more aware now of what's going on around him and has a longer memory, especially of boo-boos. But he was going to get vaccinated eventually, so might as well just do it. Our doctor is awesome and said he would take care of telling Jamie (I was glad to be able to wimp out on that!). When the shot was ready, he asked Jamie to sit on the table. He told Jamie that he was going to roll up his sleeve and give him a shot. It would probably hurt a little bit, but he had a band-aid for Jamie when it was done (Jamie is obsessed with band-aids) and would get him stickers. So Jamie pushed up his sleeve. The doctor asked if he could give Jamie his shot now, and Jamie said "yes" in a little voice. The hovering mom was ready to scoop her little boy up after the shot was administered and the tears flowing. I was thinking in my head - we could go to the pharmacy afterwards and get a sticker book - we could go to Wendy's and get a Frosty - what else can I promise my son to make him feel better. So the doctor leaned over and gave Jamie his shot. Jamie just looked at him the whole time - never flinched, never moved, never made a face, and definitely never cried! Like it was nothing. What a brave boy! I was so relieved that Jamie didn't seem bothered at all. He trusted the doctor (and us) that it was going to be a little hurt, then be all better. In his mind, why make a big deal out of it. (Which is kind of funny because I accidentally stepped on one of his toys the other day and it was the end of the world to him. Okay, so bad mommy broke the toy when she stepped on it, but still...) It's a simple thing, but trust in God - He takes care of us.

Interesting tidbit that I never knew - Clare could not have her other normal six-month vaccinations this recent visit because when she goes on the bypass machine during surgery, it will wipe all that out of her system. The flu shot is okay because she will have a booster in three months anyway. The bypass machine filters the blood before it sends it back into Clare's body. I thought that was interesting! We are learning more and more about medicine every day!

Clare's gorgeous 6 month photo, October 4, 2005

Where Are They?

I know we've been sporadic in updating our blog lately. We are just enjoying being "normal" people for a little while. I put normal in quotes because, really, what is normal? To us these last couple weeks, "normal" is enjoying the beautiful fall weather. Fall is my absolute favorite time of year. Crisp mornings and evenings, snuggling under the covers, warm sunny days, gorgeous colors on the trees. We've been so busy lately (and not going to the hospital or the doctor's). We've been apple picking (twice!), pumpkin picking, to the zoo (twice!), leaf hunting, the Children's Museum (twice!), playing at the playground, pumpkin painting (twice!), and making many loaves of apple bread (too many times to count, it's so yummy). And that's just in the last two weeks! As I sit here resting while my children are napping, I realize how blessed I am. Life has been throwing us many curve balls lately, so I really grab onto these wonderful times in between those curve balls.

Curve ball: Clare's third cath is scheduled for November 28, and her open heart surgery is November 30. She is being monitored with her cardiologist in between with echos, lung scans, and EKGs. Hopefully we will make it to her planned dates and not end up in the hospital sooner.

Hospital Clare, 9-15-2005

Home Clare, 9-21-2005

A Tale of Two Clare's

S~ So a thought occured to Teresa and I during this past cath-we have had twins! We realized that we have not one, but two Clare Therese's. There is the home Clare, who gives us smiles that light up your day, surprises us by rolling over well before we thought she would, loves to play patty cake with Mommy, dotes on her big brother, and watches her Daddy's every move. Then there is the hospital Clare, she on the other hand is VERY SICK as all the doctors tell us, she has had multiple balloon dilations of her pulmonary branches, will need open heart surgery and will probably have a catheter every two months until she is about two years old. Our Two Clares! We came to this realization when our Parish Priest stopped by to see us in Boston. After the visit Teresa and I remarked how quiet he seemed. I think the reason was is that he has never met the Hospital Clare. The Clare he knows, the one he baptized and performs the Sacrament of the Sick on is the home Clare. The one who, if you didn't know better, looks like any other six month old baby. I think it was also the reason I had such a hard time seeing her in the ICU (besides the fact that a parent should never have to see their little baby like that). This was not my Clare in there. This Clare had two tubes coming out of her mouth and her tiny bed was surrounded by every sort of machine you could think of. One checking her vitals, one operating her breathing machine, a machine to pump Heparin (a blood thinner to prevent clotting) through her, and an I.V. pump supplying her with nutrients until she can feed again. That is why I cried so hard; This was not my Clare. It was also why I started crying again the next morning when they unhooked her so that Teresa could nurse her. Seeing her doing something so normal as nursing was such a wonderful sight. So without further ado I would like to introduce you to our two Clare's: Hospital Clare and Home Clare!

Home Sweet Home & Hospital Thoughts

We are home again! In retrospect, four days is not a lot of time (especially since when Clare has her cath and surgery in November, we will be at least 12 days in the hospital), but if you've ever experienced four days in the hospital, it's an eternity.

First, there's "Hospital Time." Example - "I'll bring that medication in 30 minutes." It comes 2 hours later. Our favorite this visit was when Shawn asked the admitting nurse the morning of Clare's pre-op if Clare would have her IV put in that night. The nurse said (surprised), "Oh no, she will have that put in this afternoon." Ummm... try midnight. But once you're used to hospital time, it tends not to bug you as much. We try to be understanding that Clare's not the only patient there (although to us, Clare is the most IMPORTANT patient!), emergencies arise, and the nurses and doctors are super busy. But hospital time adds to the feeling that everything takes F-O-R-E-V-E-R in the hospital. It took me one hour last night to get a food voucher delivered so I could eat in the cafeteria for free (a perk for breastfeeding moms!). Now, yes, I could have gone down to the cafeteria and had dinner in less time for about $8, but when you're a one-income family with medical bills piling up, you take the free stuff!

Second, there's "Hospital Law" (similar to Murphy's Law). You've been waiting 3 hours for blood to be drawn. Five minutes after the baby falls asleep (after 30 minutes of rocking), the lab tech shows up, needle in hand. This is a big dilemma - either tell the tech that the baby has just fallen asleep and run the risk of the tech not returning for another three hours. Or tell the tech to go ahead and draw the blood - baby wakes up screaming and now it takes even longer to get her to go back to sleep. Our theory is that if you want something to get done, make sure Clare goes to sleep!

Third, living in "Hospital Land." Hospitals are not fun and everyone knows that. Here is the part where I really start complaining - my eyes are dry from the air, my body aches from sleeping in a chair, you never feel clean after using a triangular-shaped shower (I would love to know where that concept came from) with very little water pressure. We alternated between boredom and anxiety, both of which are exhausting. Honestly, though, I am so impressed with Boston Children's Hospital - they really make an effort to bring joy to the kids and families there. One day, there was ice cream sundae making in the lobby. Another day, Kohl's came in with tons of toys for the kids. There is a great playroom that Jamie loved - complete with a Child Life Specialist who let him fingerpaint and glue, two things Mommy has not introduced him to yet! There are little cars to ride up and down the hallways and strollers and swings for the babies. Yet, at the end of the day (or four days), all we wanted to do was go home.

And we are home. Clare is home and sleeping in her bed right now. She still sounds a little wheezy at times (from the breathing tube). She had trouble keeping food down this morning and afternoon, but is doing better now (only one incident this evening). And she is on a new medication (a blood-thinner to keep blood clots from forming in the walls of her stents) that was a nightmare to get her to take. But these are things we will have to work out over the next couple weeks. Recovery is never easy. We are home and that's all that matters right now. Thank you all for your prayers in bringing our little girl home again safely.

Update #2 Clare's Second Cath

S-Hello everyone! Well there has been some progress made. We have been moved from the ICU onto the Cardiac Floor. Clare's Breathing tube was taken out first thing this morning and she was allowed to nurse at about 10:00 am. I thought I was done crying for the day but when I saw Clare doing something so normal it brought tears to my eyes again! Clare has been sleeping most of the day (I wish I was) and for the most part seems to be comfortable. She has had some period of agitation and Teresa and I find it tough because it is almost like we have a whole new Clare. We are not sure what she wants and what will help to calm her down. We also got to meet with her Hospital cardiologist today who went over the whole procedure. It is truly remarkable what they can do. I know Teresa said it as well, but we truly thank all of you for your prayers and all the support that has been given to us. Thanks!

Clare's Catheterization - An Update

Clare's catheterization is over, but all did not go as planned. She is in the ICU right now for numerous reasons. Her heart disease is worse than originally thought (something we keep hearing over and over). Her main left and right pulmonary arteries were so narrowed that she had a stent placed in each one to keep them open. Because of the stents, she needs antibiotics (to prevent infection) and blood-thinners (to prevent blood clots). She also is still on a breathing tube. The stents allow so much increased blood flow to her lungs (which is a good thing in the long run - one of the goals of these caths), that there is the risk of pulmonary edema. So Clare remains intubated to decrease that risk. She is capable of breathing on her own, she just isn't yet. Hopefully she will be extubated tomorrow morning and can try breathing without the tube.

We always like sharing good news, so here it is! Her vital signs are good, and she tolerated the actual cath procedure fairly well. Her ICU stay is due to the stents and breathing tube and not because she had "problems" during the cath. Pre-cath, her pressures in the right side of her heart were twice as high than in the left side (a normal heart should have lower right-sided pressures), which is very dangerous. With the cath, the doctor was able to get her right pressures a little lower than her left. So the cath was successful in achieving that goal. Plus the doctor was able to dilate more of her smaller pulmonary branches, so her blood flow has been increased.

Because of the severe narrowing throughout her heart, Clare will have another cath in mid-to-late November to open more pulmonary branches and re-dilate her stents; then 2 days later, she will have open heart surgery to widen her aorta. It's been a rough, very long day with lots of unexpected news. We are not coming home tomorrow as originally planned, but will probably be here into the weekend instead. Please keep the prayers coming. I feel like we are always saying that, but Clare needs them!

End of Summer & Back to Boston

It's September, the end of summer, and we are heading back to Boston tomorrow for Clare's second catheterization.

We had a wonderful end of summer with our stay in Ogunquit, ME. We had a hotel room right on the beach - great because we didn't have to wear shoes, could go to the beach multiple times a day without hassle, and had a gorgeous view of the Atlantic Ocean (which we even got to see at sunrise thanks to Miss Clare getting up before dawn). It was a peaceful, enjoyable getaway before coming home to reality!

So we are off to Boston tomorrow. Clare has done great these past three weeks since we got the scary news that her cath needed to be pushed up. Once again, you would never know she is sick, and I am so thankful for that small (yet huge in many ways) blessing. She has discovered her feet, is able to pick her head up now when lifted to a sitting position, and smiles more and more every day. We are loving these little accomplishments. She is doing so much better developmentally than we thought she would.

We will try to update the blog during Clare's cath, like we did last time. Prayers are greatly appreciated!

Our family, September 3, 2005 

The Geneticist - Kudos to Mom & Dad

Clare had her appointment with the geneticist today. His role in this whole process is similar to an overseer or coordinator of care. The geneticist follows suggested medical guidelines for children with Williams. He makes sure Clare is being taken care of according to those guidelines. Her other doctors are focused on a particular area, so the geneticist brings these separate areas together to assemble a complete picture of Clare and the manifestation of WS in her. His main words today - "Kudos to Mom & Dad."

This is our bragging post! We are doing a great job with Clare. Even though there are some very tough moments where I doubt my abilities, somewhere deep inside, I really do know that we're doing a great job with Clare. I don't mean to sound all righteous, but I do feel that Shawn and I have coped very well with Clare's multiple diagnoses and managing her care. It showed to the geneticist that we're on top of things, and he was impressed and encouraged with Clare's progress. We were able to answer every question he asked. We've taken care of getting Clare checked out by the necessary doctors, and, other than continuing on our present course of treatment (especially with her heart), there is nothing new we need to be doing for Clare right now.

And good news about Clare's tests results from her endocrine lab work a couple weeks ago - her thyroid levels are only very slightly out-of-range (the endocrinologist feels this is still her body working out the too-high dosage of 12+ weeks), so she's finally on the right dose. Her calcium levels were within range, so she is not hypercalcemia, which means I can continue breastfeeding exclusively and not supplement with any low-calcium formula. Yeah! It's so nice to hear good news for once!

Clare doing her therapy with some tummy time, August 24, 2005. 

Another Echo & Rescheduled Catheterization

Clare had her echo and cardiology appointment on Friday. Sorry for not updating sooner, but it was a busy weekend! Shawn came home from Seattle on Saturday, so the whole family was excited to have Daddy back.

I am starting to really hate echos. They always spell bad news. At least right now they do. Clare's heart is worse than it was pre-cath. The narrowing in her pulmonary arteries has worsened, and the narrowing in her aorta has worsened even more. To the point where the cardiologist does not feel it is safe to wait 6 weeks for another cath (her second cath was scheduled for October 7). It is very important to get the pressures down on the right side of her heart, so Clare needs some more dilating on her pulmonary side ASAP.

To some degree, this was to be expected. It is the nature of Williams Syndrome that this narrowing continues to happen. It just seems to be happening very fast in Clare. There is only so much the doctors can do during the cath because of the dye contrast used on her little body, and Clare has to wait about 8 weeks between caths because of the dye contrast coming out of her system. But she needs these caths faster than they can do them. It seems like Clare may have a cath every 8 weeks, if her heart continues at this rate. And, once again, open heart surgery looms in the near future.

Needless to say, Shawn and I are upset by this news. We knew she was having more caths in the future, and her second cath is only going to be 3 weeks sooner than anticipated, but it's the continual shock that is more upsetting. Her first cath was scheduled under these same circumstances. With this second cath, we were more relaxed because Clare showed improvement post-cath so she was essentially healthier, we knew the cath was coming, it was scheduled 3 months in advance, and we had plenty of time to make arrangements for our stay and Jamie's care during those 3 days in Boston. Now it's a big BOOM again - we're getting to another critical point with Clare's heart which makes the cath that much scarier, the cath is sooner than expected, we are scrambling to make all new arrangements, and everyone is a little on edge (okay, some days, we're A LOT on edge).

We know God is watching over Clare and our family. And He does send us peace. Just the fact that it's barely nighttime and the other three members of my family are already sleeping is peaceful!