Mighty Beautiful Heart

May 30, 2009 – Today was rough for all of us.  I stayed with Alexandra last night, and we were up quite a bit.  She seemed to experience a lot more pain today, and we couldn’t seem to do anything right for her.  Naturally, it is very frustrating for us to not be able to console her and for her to not know what to do with herself.  She wanted to go nighty night and then wanted to be held only to want to be put back down again.  Then she would toss and turn, and the process would start all over again!

Part of the problem is that she now has fluid in her right lung.  They have increased the diuretics to, hopefully, get rid of the fluid.  Until it is gone, they will continue to monitor the situation and take x-rays each day.  When taking one of her medicines earlier today, she vomited all over the place which required a shower.  While she was not happy about getting sick or being out of bed, she did seem to enjoy the shower, as she loves taking showers with Mommy at home. 

They had to double her pain medication.  Once they did that, she was much more comfortable, and we caught just a glimpse of our sweet, funny child.  She took another wagon ride today, and we were able to get her to walk around just a bit.  Unfortunately, a few steps wiped her out like she had just run a marathon!

She still isn’t eating, but she did drink a lot more milk and water today and really liked the lemonade I found for her.  I’m hopeful that she will want a little food tomorrow.

We continue to see so many other children with various illnesses between the hospital and Ronald McDonald House and feel blessed that Alexandra is doing so well.

May 29, 2009 – Much to our surprise, when we arrived this morning, Alexandra was sitting on the sofa with her nurse!  She had some good moments today, getting out of bed a couple of times, taking a few bites of food and going for a ride through the hallways in a wagon.  However, she also had some painful times, like when they pulled the chest tube out and whenever we moved her from one location to another. 

It’s always hard to see your child in pain and going through something so traumatic.  However, we are certainly thankful that she continues to do so well.  Now that the chest tube is pulled, they will continue to watch for pleural effusions.  If she doesn’t get them, we will go home soon, but if she does, we could be here for a couple more weeks.  We, naturally, are praying that she does not get them and we will soon be home recovering!

Today has been one of ups and downs.  Alexandra is doing very well but has had some very uncomfortable, cranky moments.  Apparently, during the night, she ripped out her arterial line, so they had to restrain her so she wouldn’t pull out anything else important.  She is showing her feisty side, which first appeared during her first surgery over two years ago!

 When she first saw us when she woke up this morning, she immediately demanded that I take her.  Unfortunately, I couldn’t since she was still hooked up to too many things; however, later in the afternoon, I was able to hold her which made her and me feel much better.

 We were actually moved to the CCU this afternoon, after a confusing temporary move into a quad room typically reserved for small babies.  We had no sooner arrived at the new temporary room than we were kicked out because they had to do a procedure on a baby who ended up being rushed back to the operating room.  Episodes like that remind you how very lucky you are that your child is doing so well! 

While we had to be away from her, I walked down the hall and was surprised at how many nameplates there were with babies who were unnamed…”Baby Boy Smith,” etc.  It really bothered me to see that.  I’m sure the parents have their reasoning as to why the baby is not named, but it is disturbing to me just the same.

While things are going well, the whole experience is so draining emotionally and physically.  However, we push on, knowing that things are only going to get better from here!

Today (May 27, 2009-my posts seem to be dated a day ahead for some reason) started at 4:45 a.m. trying to have Alexandra drink some apple juice before her cutoff of 5 a.m. She rolled over and went back to sleep, so I lost 15 minutes of sleep for nothing! 😉

The worst part of surgery day is always the passing off to the surgical team. As a usually positive person, I still can’t help but think in the back of my mind that it’s possibly the last time I will see her. However, after a brief sobbing episode, I pulled myself together. Alexandra’s nurse kept us up to date on her progress each hour. While the surgery started later than we had anticipated, it finished much quicker than we thought. She did well and looks great all things considered. The surgical team even taped around the butterfly they painted on her cheek at Ronald McDonald House last night! It’s been quite the topic for conversation among the nursing staff!

She has cried out occasionally and has opened her eyes a few times. The worst was when she called out “Mommy, take me,” and I couldn’t pick her up! We have seen some of her personality coming out like when we gave her some milk, she was trying to hold it herself (not possible due to the IV’s, etc. around both hands) and saying “I do it!”

We are so blessed, as everyone says she really is doing well. We’ve been told that tomorrow we will see a lot of the tubes come out, so we are excited about the opportunity to hold her!

Yesterday, on the way up here, she was having so much fun and has been doing so well, it made me wonder a bit if we should be having the surgery now. However, now that it’s over, there is certainly a relief that is it behind us and that we can now move forward!

Today was a long day, although I’m sure it won’t be as long as tomorrow! Neither my husband nor I slept hardly at all last night. We stuffed every crevice of the car this morning with everything we think we might need over the next two weeks to a month and began a long, rainy trip to Philadelphia.

Once in Philly, we visited the child life specialist who took Alexandra on a tour of the areas of the hospital where she will be and showed her the playroom. Alexandra took it all in stride, and we actually had a hard time getting her to leave the playroom!

We found out that we need to be at the hospital at 6 a.m. for a 7:15 a.m. surgery tomorrow.

Once we finally arrived at Ronald McDonald House, we were exhausted but ready to get settled in. Fortunately, Alexandra had such a positive experience last week when we were here, she felt right at home immediately. They even had a “birthday party” tonight and served pizza and ice cream and cake. Every child received a stuffed bear and got to do artwork. Alexandra even had her face painted with a butterfly.

Being at Ronald McDonald House is a very humbling but rewarding experience. Most people never realize how important this organization is to families with children who have serious medical conditions and require long-term hospital stays. While here, you see how lucky you are, as there are many families who have children with much more serious illnesses. We are grateful for the opportunity to be here to offer and receive encouragement.

Yesterday I had the chance to do some errands on my own to pick up a few last minute things for the trip. It seemed like a good opportunity to have some alone time and not think about what’s coming. I went to several stores looking for a couple of things for me, but I found myself spending more time in the little girls department. As I bought more and more things for Alexandra, I wondered to myself if this was some sort of coping mechanism kicking in. You know, if I bought her all these new outfits, she would definitely be around later to wear them. It also made me wonder how others cope with such stresses with their own children; I would like to hear your stories.

Today a friend who hasn’t been around Alexandra much came to visit. She brought her some books, and Alexandra sat right down on her lap and insisted that she read them to her. As my husband and I just sat there and watched, I started getting a little choked up. When you’re running around working, packing, etc., it’s easy to forget that surgery is in just a few days. However, when you stop, the emotions can hit hard and unexpectedly.

Exactly one week from today (May 20), my daughter Alexandra will have her third (and hopefully final!) open heart surgery, the Fontan. She was born with a double inlet left ventricle (her right ventricle had not formed) and transposition of the great arteries. I decided to start this blog to document her progress, discuss challenges and share with other CHD families and promote greater awareness and understanding of congenital heart defects.

Her first surgery was performed at 5 ½ weeks old, and the second was at six months. We have had this third and final surgery hanging over our heads for over two years now. While you never want to see your child go through something so traumatic, you want to get it behind you and move forward. We are happy to do that now!

Last Thursday, we traveled to Childrens Hospital in Philadelphia for a day of testing on Friday. While it was a grueling day with no food from 9 p.m. on Thursday to 3 p.m. on Friday, she did amazingly well. Certainly better than most adults! She asked every doctor and nurse what they were going to do when they approached her. We can see that she will keep the nurses hopping when we’re back for surgery.

We’re now getting all the logistics in place to be at the hospital for an extended stay.

I would be interested to hear from others who have gone through the Fontan with their children and how it went.