The story of Lilly's heart.

Friday, April 8, 2011

Many apologies to you...

I want to apologize to all of you for not updating until now. I had every intention of updating while Lilly was in surgery, in the hospital, and as she recovers. The waiting room we were in had very poor reception, and it was hard for me to get logged on. I also tried to keep myself distracted by walking around every so often and talking to the few other parents that came in. I thought I would be able to update and work on school work once Lilly was in the ICU and then in her own room, but boy was I wrong! I didn't have a chance to even open my laptop, let alone update anything. So here is a quick recap -

Lilly was out of surgery and in the ICU by about 1:30. She had an extremely difficult time coming out of the anesthesia, and it took 2 of us to hold her down. She was crying, screaming, and kicking (even after 5 rounds of pain meds) from about 3:30- about 11:00pm.  It was hard to see her go through what she did, but I now know how strong she is. It helped that my mom was there to spend the night and let Chelsea and me sleep for a few hours.

The next couple days in the ICU went pretty good. She vomited the day she left ICU to go to her own room, and continued to vomit for a few hours. She was also running a low grade fever. Luckily they did not have to start IV fluids, but they did contemplate it.

Lilly continued to do well and left the hospital Saturday afternoon. She came home and immediately started making her way around the living room playing with every one of her toys. You would have never known she just had open heart surgery.

The week after surgery, she ran fever and had major nightmares just about anytime she would sleep. She would wake up screaming and crying and would not let Chelsea or I put her down. She slept in our bed every night and every nap for a week. The screaming fits would last for at least an hour, sometimes 2. It was scary and hard on all of us. I took her to the doctor to make sure it was nothing else causing the screaming, but the nurses and doctors all agreed that it was just pain and nightmares. So, we now keep her on a constant pain medicine and it seems to have helped. She has been able to sleep in her own crib for a few nights now, and when she wakes up, it's usually only for about 15-30 minutes. Sometimes she lets us put her back in her crib, and sometimes she wants to stay with us.

She amazes me with how well she is recovering. I can't believe that just 2 weeks ago, she was in that ICU bed. We saw her cardiologist today and got a good report! We have to continue her heart medication for 1 more week, and then we'll have a re-check in 2 months. I believe it will then be 6 months and then eventually be just a yearly check-up.

Watching her go through surgery and recovery was/is the hardest thing I have ever done. I have gotten angry, sad, frustrated, and I cried quite a few tears, but I know that God had and still has her in his hands. She is the most beautiful thing I have ever laid my eyes on - even with her battle scar. I hate that she doesn't understand what is going on, but I hope that one day she will know that she is one amazing girl and can make it through anything with God on her side.

I know most of you probably wanted more information and emotion of what actually went on in the hospital, but I'm tired; both physically and emotionally. I'm tired of explaining everything to everyone. And please don't take offense to that statement. It is not meant to be rude or mean, it is just truly how I feel right now. I am glad that it's past us. Not that I won't answer any questions you may have, I just am glad I can finally take a break from it for a little while and just enjoy our amazingly tough little girl.

We love you, Lilly. : )


  1. Gave me chills and brought me to tears. You ALL are incredibly strong! May God continue to bless you all, and keep His hand on your beautiful little baby girl!

  2. I am soooo glad to her that Lilly's recovery is going well! She has been in our thoughts and prayers constantly! On the day of her surgery my little girl wore a kimono dress as a reminder to pray for Lilly, her family, the Doctors and nurses. My son prays every day at nap time and every night at bedtime..... he always prays for God to watch over Baby Lilly and help her get better. Lilly has touched my family and it was an honor to be able to do something little to help her and you. We continue to pray for Lilly and your family! And may God continue to show his love and comfort all of you during the coming weeks.