Two steps forward, one step backward

One week after surgery, we are still in the CICU. Both Jason and I had assumed we would be out and up on “the floor” by now. Considering Lexi’s rapid progress right out of surgery, we thought she would just fly through her recovery. Well, one week later, we are still here. As a recap: Last Wednesday she had her Norwood procedure, which involves going through her breastbone, putting her on a heart/lung bypass machine, reconstruct the aorta, and put in a shunt so blood can get to her lungs to get oxygen. She was taken off of the ventilator on Saturday. I also held her for the first time since her surgery on Saturday. Sunday her pic line (an iv line that starts in her arm and runs all the way to just above her heart) was pulled out (by accident) but they decided it did not require replacing. Monday she had some breathing issues and had to go on the cpap machine to help clear out and open up her lungs. Tuesday the cpap was taken off and replaced with high flow oxygen. She also had her pacemaker wires removed. Tuesday night (last night) she had some irregular heartbeats that the nurses and doctors were not able to diagnose so they couldn’t treat them, either. She pulled herself out of them and never had increased blood pressure or decreased oxygen saturation levels. Hopefully they were just “flukes” from pulling out her pacemaker wires yesterday. Today she seems to be doing very well. Her oxygen flow rate has been stepped down and we are on the verge of the amount of oxygen she needs to be on to start oral feeds again. ***** My little girl has been through a lot! She keeps getting so close to being ready to go then she has a minor thing happen that keeps us here another day or two. She is such a strong, feisty little girl, and she is just going to recover at her own speed. One of the frustrating things, too, is that she keep getting hooked up to different things. So, even when she is disconnected from one thing, something else is still attached and it makes it such a challenge to hold her. I held her for a long time yesterday but I haven’t today because it seems like it will be too much of a hassle. I hate that. I know the nurse will help me position her, but by the time we get settled and comfortable she will have to go back on the bed to get checked out again. Thankfully she was awake when Jason, Levi and Deborah came by so Jason and Levi both held her before we went for lunch. ***** Please continue to pray for her lungs to improve and for her heartbeat to stay regular from here on out. Also, pray that Jason and I can focus on taking one day at a time and not worry so much about getting her out. It’s so hard to remember that this is the best place for her when we want her out so badly. Also, pray for the families here who still can’t hold their babies for one reason or another. We know of at least three families who are waiting on a heart transplant for their babies and I can’t imagine how excruciating that wait must be, even now that we are here and also living with the day to day struggles of CICU life.