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