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