Friday, July 31, 2009

Post-Op Day 2

Caroline had a comfortable day and night with a lot of much needed sleep. They started her on an IV pain med that is helping her a lot! She is still quite groggy, but slowly coming back to her playful self. This morning, she is awake intermittently, listening to stories, and reaching for our glasses......very nice to see glimmers of our Caroline coming back! She's also endured another round of tests, pokes, and prods to make sure her heart and lungs are recovering well from the surgery. Its not even 10:00 am and we've already completed a chest x-ray, blood draw, and EKG.

The cardiology team just rounded with us and gave us the plan for today. With some luck, her final chest tube and pacer wires well come out today. She's taking enough formula, that we can stop her IV fluids, and they want her up and playing as much as possible to keep her lungs nice and clear. All great things, and steps closer to going home. The team remains optimistic that we could be home by the end of the weekend. Let's keep praying that her recovery continues to go so smoothly. Thanks to everyone for helping us make it happen.

Thursday, July 30, 2009

Resting comfortably

Much to our chagrin, they hurried us out of the ICU this morning (its comforting to have your own personal bedside nurse!). However, we're thrilled that Caroline is doing well and fit to leave the ICU. We are now on the "surgical floor," the last stop before going home; however, we anticipate we'll be here at least a couple of days before that will happen. Caroline is finally resting very peacefully and we are all quite relieved that she has fewer lines and tubes sticking out of her body. Her fever is gone and her vitals remain quite stable. All is well and we couldn't be happier with the way things are progressing today.

Thanks everyone for sending us positive energy. Your comments and well-wishes are helping tremendously. Can't wait to send out some more good news!

Morning Update

Caroline is doing great. Her vitals are perfect and the nurses are starting to pull out lines as I type! She had a bit of a rough stretch trying to stay comfortable, especially in the early morning hours. They've given her some new pain meds and she is much more comfortable now. She is running a bit of a fever, but this is completely normal for anyone coming out of a major surgery. The power went out at Children's last night, so we didn't have AC most of the night......definitely didn't help her fever! If all continues to go so well, we'll be out of the ICU by!

Wednesday, July 29, 2009

Good Night

We just spoke with the surgeon and he said everything went well. The surgery is officially over and Caroline is in the ICU. She's even off the breathing tube already! We will be able to see Caroline in just a few minutes. What a long day......thanks for hanging with us through all of our delays. Dr. Permut was very happy with her outcome and we can't wait to be with our little girl. I can't say we're out of the woods yet, but all indications seem to be that she's doing well so far. What a sigh of relief!

She's off Bypass!

We just received report that Caroline is off the heart/lung machine and they are finishing up the final details of the surgery. We haven't talked with the surgeon yet, but the brief report said that she did well! Thank you everyone for all of your support and prayers. They worked!


We received our first page. Caroline is on the heart/lung machine and the actual "open heart" part of the procedure has started. Everything is going fine so far.

Caroline's in Surgery!

I never thought I would feel so relieved to have Caroline go in to surgery. They took her back to the OR at 5:15. She was a trooper! She did way better than her parents. She was mostly happy and playful the entire 5 hours we were waiting at the hospital....amazing! Let's keep our fingers crossed the surgery goes more quickly than our wait.....

In case anyone is still watching the blog, I'll continue to update you on how she is progressing through the surgery.

Still Waiting

Caroline's surgery has been delayed due to difficulty with the case prior to hers. We are at the hospital and waiting. I don't anticipate Caroline will go back to surgery any time soon. At this point we're still hopeful it will happen today, but they aren't promising anything. We'll keep you posted.

Tuesday, July 28, 2009

And So it Begins

Today was a mix of some really great moments as a family and some really hard and long doctors' appointments. We had a great time enjoying Caroline and spending all the time we could with her. She is such a joy and we can't wait for her to be healthy and strong.

Feeling good and strong for surgery tomorrow!

Its so great to have Dad home to hang out with us during the day!

Caroline was so brave through a long afternoon of pokes, prods, and tests.
The surgery is scheduled for 12:15 tomorrow afternoon. They say the surgery usually takes about 4 hours to complete. The surgery team will page us periodically throughout the procedure to let us know how she is doing. We'll try to update the blog as often as possible to pass along the news. We really appreciate all of the love and support we have received through out this process. We know Caroline is going to do great, but we'd gladly take all the prayers and support we can get tomorrow!
Leslie & Mike

Monday, July 27, 2009

The Calm Before the Storm

This weekend was all about relaxing and staying cool. Both were a bit difficult to achieve but we did our best!

Lounging under the tent in the backyard

Caroline received a special blessing after mass

Hanging out at a park with Dad
Tomorrow we spend the day at Children's completing all of Caroline's pre-op appointments. We'll be at the hospital for a good part of the day. At least we'll stay cool in the air conditioning!

Monday, July 20, 2009

The Heart of the Matter

* American Heart Association

Here are a few facts about congenital heart defects, ventricular septal defects, and Caroline's upcoming surgery:

  • Approximately 1 in 100 babies are born with a congenital heart defect.
  • Ventricular Septal Defect (VSD) is the most common type of heart defect.
  • Many VSDs close on their own and do not require surgery. However, if the hole is large, surgery is usually recommended in the first year of life.
  • Caroline's VSD measures about 11 mm at its largest point (this is a large VSD).
  • At the present, closing a VSD of Caroline's size requires open heart surgery.
  • VSD closure is one of the most commonly performed open heart surgeries done on infants.
  • The surgery has a very high success rate.
  • Children are expected to have a very healthy and normal life span following a successful VSD closure.

If you are interested in learning more about VSDs or Seattle Children's Heart Center, check out the following websites:

Thanks for your ongoing love and support during this difficult time, but as you can see, we have many reasons to believe that Caroline is going to come through this just fine. She is a tough little girl and has already taught us so much about what it means to live.


Leslie, Mike, and Caroline

9 Days and Counting...

We enjoyed another beautiful weekend here in Seattle. The gorgeous weather makes it much easier to stay at home every weekend! We are trying to enjoy our summer while keeping Caroline as rested and germ free as possible. We enjoyed a BBQ in the backyard yesterday to celebrate Uncle Nick's Birthday. Ryan and Amy brought their dog Murphy. Caroline is a big fan of the puppies!

Sunday, July 19, 2009

Up to Speed we've been putting this off for quite some time, but we finally did it! We started a blog to keep you up to date on our family and Caroline's journey with CHD! We wanted to start by giving everyone some background into where we've been and what we've been up to for the past nine months!

As many of you already know, Caroline was born last fall with a congenital heart defect called a VSD (ventricular septal defect). Basically, there is a hole in the wall that separates the two ventricles of her heart. The hole between the ventricles causes already oxygenated blood to back flow into the right side of the heart and recirculate into her lungs, making her circulatory system extremely inefficient. In short, her heart works very hard to pump blood through her body due to the hole. The inefficiency causes Caroline to tire easily and made feeding extremely challenging. To make matters worse, Caroline contracted RSV (respiratory syncytial virus) when she was 8 weeks old. RSV is a common childhood illness that virtually every child in America contracts before the age of 2. It usually manifests itself as a mild-moderate upper respiratory infection for most healthy kids, unfortunately, if you are cardiac or pulmonary compromised, it can be particularly dangerous and even fatal. The insult of the virus caused Caroline's heart to fail and she was hospitalized following a routine cardiology visit on December 22nd, 2008. We spent 10 nights in Seattle Children's Hospital over Christmas last December. Unfortunately, the combination of the virus, heart failure, and previous difficulty feeding, Caroline's poor body couldn't keep up with the work of eating. A nasogastric feeding tube was placed while we were in the hospital to give her a chance to rest and still receive the calories and nutrients she needed to regain her strength and recover from being sick.

We spent a long winter nursing Caroline back to health, but unfortunately, oral eating never recovered. A permanent feeding tube called a G-tube was surgically placed in Caroline's stomach this spring. Now that she has recovered from the RSV and heart failure and she has a permanent source of nutrition, the cardiologists are ready to repair the hole in Caroline's heart. We are headed back to Seattle Children's for the third time this year. Caroline's surgery is scheduled for July 29th. Caroline's surgeon will patch the hole in her heart with a special piece of plastic, essentially sealing the hole and giving Caroline a near perfect heart! We plan to be in the hospital for about a week and we are very much looking forward to bringing Caroline home with a healthy heart. More on Caroline's heart defect and the upcoming surgery in future posts. For now, we'll leave you with knowing that you'll have a place to check on our family and Caroline's progress through this new phase of our journey.