I know most of you followed our updates on Lily yesterday via facebook, so sorry if this is repetitive, but I want to post here for those who only check our blog and for our own personal journal.
We arrived in Philly on Thursday so Lily could get blood work drawn in preparation for surgery. She did great at the hospital, cooperated, and showed no signs of stress. She has come so far from the girl that would start crying as soon as we took the hospital exit off of the highway, and not stop until we left!!
We were very excited to get a room at the Ronald Mcdonald House - what a blessing and amazing charity. Not only can we stay there for very little cost, but they provide a meal every night, you can do laundry, and also meet some amazing families taking care of their sick children. One ladies baby has been in the hospital for a year - I can not imagine!!
Lily got a good night sleep and woke up ready to go for the big day. She walked into CHOP, smiling and laughing!!
She did great during the preop, held her arm out for the IV and didn't even cry.
They gave her some "happy meds" before wheeling her to the operating room - she was hilarious, she almost immediately started laughing, she laughed all the way to the elevator, where we had to say goodbye.
This was the hardest part for me, watching them take her away, but only a few moments for tears and it was off to talk to the cardiac surgeon, Dr Spray. He explained what they were going to do. We discussed the two procedures, the Glenn and Fontan. He told us that he would probably only do the Glenn and would wait to do the Fontan, once we new how her lungs were responding. We discussed the pros and cons, and the plan was that he would decide once he was in the OR and could reevaluate
the pressures in her lungs.
After about an hour our nurse came and told us he had just started, within 20 mins he was back to say the Glenn was done and he had started the Fontan. Wow this was fast, which made us very happy as the less time she was on bypass and her heart was stopped the better. Within another 20mins we were told he was done. They then had to rewarm her body, place some monitoring lines into her heart and lungs, place a chest tube to drain fluid, restart her heart and close up her chest.
After about an hour we met the surgeon, who was able to tell us the news we had been waiting to hear all day, well actually for 3 years!!
Her surgery was done, she was doing great and so far there were no complications!!!
Seeing our girl for the first time was such a relief, it was like letting out a breath you had been holding all morning.
She was already extubated and breathing on her own!!
She was hooked up to many IV pumps and lines
She woke a few times during the day and night, drank some juice and even ate a yogurt, but mostly was sleeping with sedation and pain medications.
I made the very hard decision to go and sleep at the the RMH, last night. I hated leaving, but the fact that she was looking so good, and was sedated, and with the promise from our nurse to call me for anything, I decided to go. It is only 3 mins away, and I was so exhausted. I am very grateful today that I made that decision. I came back early and she was sound asleep. She had, had a great night, and I felt so much better, and have been able to be here today when she has needed me.
Chris and I are in shock at how fast things are moving and how well she is doing.
Today she has had her Fontan line removed, 2 internal lines removed, her foley removed, IV fluids stopped. She has been taken off all her IV cardiac and sedation drips. She has drank juice and had 2 yogurts. She is still on nitrate through the cannula in her nose, which they are slowly weaning, but not rushing because of her pulmonary hypertension. They are hoping to have it off by morning.
She even had about a 30 min period where she was smiling and almost laughing, you can only imagine how good this made us feel.
These were the big steps forward she made today - amazing
We have also had a few steps backwards. She started vomiting this afternoon and did 6 times. She is now refusing to drink and has had no urine out since her foley was removed, so they have restarted some IV fluids. She is grinding her teeth, something she used to do when we first adopted her. It is something she did when she was stressed, she hasn't done it in 2 years. It seems she is doing it when she is in pain, so at least it is helping us tell when she needs meds.
She finally made it out of the bed today for about 10 mins and I got to hold my precious girl, no words!!
Chris and I want to thank you all for the amazing love and support we have felt from everyone. Your prayers and love carried us through yesterday.
We are so grateful to our heavenly father for taking such good care of our girl, we are in awe that we are on the other side of this day, a day that we were told may never come. We can not tell you enough how at peace we felt yesterday and how we see His hand in so many of the details. We truly feel we have seen a miracle unfold over the last 3 years.
Here is Lily's gotcha day video - I love to watch it and see how far she has come.