Change of Plans

What a roller coaster the last few days have been. Throughout the past week, the NICU team had been preparing Annie to go home. By Friday, she was on the right oxygen assistance, and was taking all of her meals without needing to be fed through the tube, making what everyone felt was amazing progress. Last Thursday, she started having moments during the day where her O2 levels would dip pretty low and, at times, she also seemed to be working harder than ever to breathe. Cameron and I were concerned about these episodes, but the doctors didn't seem worried about it, so we figured this must be "normal" for Annie. Sunday morning, I called to check on her and the nurse told me that while she was feeding Annie, her oxygen had dropped again and her color was blue for a moment or two. The nurse said that it made her nervous, but that Annie was fine now. We talked about taking out her feeding tube that day and taking her home on Tuesday. I went to church for an hour and then went up to the hospital and, by the time I arrived, everything had changed. During rounds, the doctors decided that she was working too hard to breathe and ordered a chest x-ray. They informed me that on the x-ray, her lungs looked "wet" and they felt she was experiencing congestive heart failure. This is not uncommon in children with her specific condition because there is too much blood and not enough air going to the lungs. They informed me that they were going to give her a diuretic and see if that seemed to help her. They assured me that this could be treated while we waited for surgery and was not likely to keep her in the hospital long term (probably another week or so). I left Sunday night feeling that, although this new development was not ideal, it was certainly something we could manage. Monday morning, I was there when the doctors rounded, and again, we all discussed how the fluid in her lungs would be treated, and what the plan was for her going forward.

Monday afternoon, a cardiologist from PCMC came to examine her. He was a more senior cardiologist than the others we have seen and told me that he had had several patients with TOF and Absent Valve. I was so glad to finally talk to a doctor that had some experience with this specific heart defect. He asked how she was doing and I described for him what had happened over the last several days- her symptoms, the diagnosis of CHF, and what the plan was to treat it. He observed her and told me that she was indeed working too hard to breathe. However, he disagreed that she had fluid in her lungs. He felt the x-rays showed that she was trapping air. He then told me that he felt she needed surgery soon- that we were risking too much to wait. He told me that he didn't know if she would survive, that many of these kids do not. He said he felt that she should be transferred to the CICU at PCMC and have an MRI done. This procedure alone would probably necessitate her going on a ventilator and with her airways already being so compromised, there was a very real possibility that she would not be able to come off the ventilator before surgery. I was so heartbroken to hear this. I felt like we had been told such good news for the last two weeks and now all that was being taken away. Here we thought that she was beating all the odds and doing so amazing and this doctor was telling me otherwise. Cameron was in court and could not be reached, so the doctor agreed to come back that night and discuss this with both of us. I cried the rest of the day- so afraid of what this news would mean for Annie. I felt more prepared to hear this on the day she was born than I did now.

He came back that evening and after we discussed things again, Cameron and I agreed that she should be moved to PCMC for further evaluation by the doctors there. We left the hospital with very heavy hearts that night. The next morning was busy- she was transferred and an entire team of doctors began observing and evaluating her. We talked about the risks of doing the MRI and the doctors there agreed that doing the MRI was risky and might give them no choice but surgery if she could not come off the ventilator. Much to my relief, they felt that we should hold off on that procedure until they had more time to assess her in other, less invasive ways. They did a thorough echocardiogram and were able to get pictures of most of her heart and pulmonary anatomy. They did an EKG and ran several blood tests on her. They also prepared all of her information to be presented to an entire cardiac/surgical team at a conference they have every Wednesday morning to discuss cases. This would allow many opinions to be heard and discussed and a unified decision to be reached. Cameron and I both felt very good about this as we have heard so many differing opinions and really liked the idea of many doctors and surgeons coming together to figure out what the best way to move forward would be.

Today Dr. Su let me know what was discussed in the meeting and how they think we should move forward. He said that they really would like to see her go home and put on some weight before surgery. Even if she could get up to ten pounds, they would feel a lot better about doing the surgery and their chances of reaching a good long term outcome. They are not sure that she will grow as she is expending so many calories to simply breathe. If she does not gain weight, then they will do the surgery, as there would be no advantage to waiting. They are also concerned that if they send her home, we might find ourselves in an emergency situation if she has a cardiac or respiratory crisis. Either choice has risks and the trick is picking the better of the two choices- do the surgery or bring her home. Before they make a final decision, they want to observe her in the hospital for several days. They will keep her in the CICU until tomorrow and then, if she is still relatively stable, they will move her to a bed outside of the ICU where she can continue to be monitored.

We are certainly worried and praying with all of our hearts that these doctors can help us do what is best for Annie. Monday was one of the hardest days of my life- I was filled with fear and anxiety for this sweet baby girl that we love so much already. I was literally aching for peace and assurance from Heavenly Father that things would be ok. Tuesday morning was not any better, but by Tuesday afternoon, that peace that I so desperately needed was returned and has stayed with me since then. Annie might be looking at surgery next week- something that I have hoped and prayed wouldn't happen and yet, somehow, I am at peace. How grateful I am for prayers offered in our behalf, priesthood blessings given and received in faith, and temple prayer rolls with ours and Annie's names on them. I know that these are the reasons for the peace that is with me now. These things, along with the many other acts of service being done for our family right now are so appreciated. Thank you for your love.