Home and Back Again

Well, I would have to say that one lesson that I am learning on this heart journey with Annie is: Never Make Plans! This is so hard for me, because I am a planner by nature, always wanting to look ahead and organize the details of what is coming. This is not an option right now as every day seems to bring new information that changes what we thought the day before. After Annie was transferred to the CICU last Tuesday, they monitored her very carefully there for a few days. She had an occasional episode where her O2 levels would drop, but overall seemed fairly stable. On Friday, they decided to move her to a room on the pediatric surgical floor where she would still be monitored, but not as closely as in the CICU. I was able to room in with her and care for most of her needs for two days. She did really well and by Sunday, they took the feeding tube out and told us to take her home and fatten her up. Of course, everyone was concerned about her taking a turn for the worse, but we felt like we could handle things if they remained as they were. We brought her home on Sunday afternoon and were so happy to have our whole family together for the first time since Annie was born. Managing the three little girls was definitely a challenge, but we were determined to do whatever it took to make things work. Monday morning, around 6 a.m., Annie woke up to eat and started to have a hard time breathing. Her O2 levels fell sharply and it seemed as though she could not get any air in or out. We turned the oxygen up, placed her on her tummy and tucked her knees to her chest as we were told to do. The incident lasted about 5 minutes and it took about an hour for her to fully recover. We were very scared, but hoped this was an isolated episode, not a new trend for her. The rest of the day was fairly uneventful and last night she did great all through the night. However, this morning, at 8 am, she repeated what she did yesterday morning, only this one lasted longer- 8 and a half minutes. Once she seemed to be easing up some, we called her cardiologist and they told us we could call 911, drive her to the nearest ER, or bring her back to PCMC. She was still struggling to keep her O2 levels up, but we really wanted her at PCMC so we jumped in the car and drove there. When we arrived at the cardiology lab, they could see that she was still working very hard to breathe and told us that she would need to be readmitted to the CICU. Again, the doctors converged on her and began ordering tests and discussing what needed to be done. The consesus seems to be that Annie is letting us know that she needs the surgery soon. They will meet as a team in the morning and discuss her case again, just as they did last Wednesday. They will likely pick a date for her surgery and schedule an MRI to take place a day or two before then. It sounds like they are leaning towards scheduling all of this to take place sometime early next week.

We really didn't want this for Annie. We were so hoping that she could wait until she was bigger to have her first surgery. Somehow, it is easier to accept that this is what she needs because we did bring her home and tried to help her wait. I would be lying if I didn't say that I am scared for what is coming. I don't really know how to prepare myself for what lies ahead- handing her over to the surgeons is going to be extremely difficult. I just keep reminding myself that her life is in our Heavenly Father's hands and as much as we worry and fret about this and that, His will for her will ultimately be done. Annie's nurse today has worked in the PICU/CICU at Primary Children's for more than twenty years. She told me that she loves to work with these heart babies because they have such incredible spirits. She also said that she is positive that there are angels all over the CICU tending to and watching over these little ones. She said that any nurse that works there would say the same thing (regardless of their religion). I too, feel as she does, and know that Annie is being loved and cared for from both sides of the veil.