Day one is over, and I have to admit, I am grateful for that small fact. Day two means we are moving forward on the road to recovery, and I see that as a positive!
The best part of today was getting to hold James. I thought it would not be allowed very frequently at all, that his issues were so severe that he would need to stay in bed pretty much all day. So I was surprised when our nurse today asked me if I wanted to hold him. I jumped at the chance and couldn't help but cry as I drew James close to my chest, tubes and all. All I have wanted to do thus far is keep him safe, as I had done for the previous 9 months....it felt so amazing to snuggle him close to me. I wanted him to feel my heartbeat and know that I was close and watching over him, in whatever way possible. I felt as if he breathed easier in my arms. This moment was such a peaceful one for me, in the midst of the shock I still felt from being in this situation period. It reminded me and Jared that James is ours regardless of how things go. The Lord has blessed us so very much in bringing James to our family.
Overall, James had a good day-his levels, blood pressures, etc are staying fairly level. It looks like his PDA duct is still closed, so the doctors increased his prostoglandin levels again to make sure that duct opens. James seems to be getting somewhat uncomfortable not eating anything, but it is necessary to hold him off food unless he needs to go into surgery asap. It looks like he will not have surgery until closer to the end of the week. This is a good thing and a bad thing-good because it means he is not in an emergency situation....bad because I want to get things started (as scary as that is) so he can get closer to coming home.
Talking to Dr. Garn always makes us feel calmer. Dr. Garn is the cardiologist on the case and LDS. You can see the spirit this brings to our conversations and it makes me feel so much better. After doing an echocardiogram today, Dr. Garn let us know he believes there are a few changes he will be making to the surgical procedures. First of all, the aorta now appears to not only have a narrowing in a singular spot, but the entire aortic arch appears to be more narrow in general. This means the entire arch will need to be repaired-basically, widened. In addition, the ASD (hold) between the two atriums is larger than we originally thought. Because of these two issues, the surgeon will most likely be going through the front of the chest instead of the side. This means James will go on full bypass. This was a little bit of a scary thought for me and Jared honestly...however, given the circumstances Dr. Garn described, I feel he is making the best call. We have to trust that of course, and both Jared and I feel a good spirit about this decision, if it becomes reality (this is up to the surgeon). We hope to meet with the surgeon, Dr. Nigro, tomorrow. Everyone at the hospital speaks so highly of Dr. Nigro, including friends/family who have heard of him. This is also a comforting thought when it comes to James' heart. We can see little moment like this where the Lord's hand is clearly visible and we are hopeful with each little mercy that is left in our hospital room.
Both Jared and I really found ourselves overwhelmed today at the amount of service that is being provided on our behalf. I posted a notice on facebook about what James is going through and within hours I had 44 comments from friends, families, and people I barely know. Everyone was expressing their well wishes and their resolve to say a prayer for James. Throughout the day, I saw those same people posting information on their walls about James asking their friends and families to offer a prayer for James, and it amazed me to see how far reaching a simple prayer request can be. All day we heard of the small things that were being done for our family to help in this situation-offers for childcare, meals, housecleaning grocery pick up and more. I just felt the outpouring of love deep in my heart, more than those individuals probably knew. I have always tried to serve when needed, but I am not sure I have ever understood the effect it can have when it is you being served in a dire moment. Both Jared and I feel so very blessed and humbled.
Another blessing we have received has come from the hospital staff. We have felt so well cared for at Phoenix Children's Hospital. Each and every single person we come into contact with has demonstrated genuine compassion for our situation and for our son. They have answered questions, taken personal interest, and inquired about our needs while providing the best of care for James. We felt so confused and overwhelmed at Shea, and granted, things were happening so fast that this probably was to be expected....not to mention the fact that we were in shock. However, we feel such a calming atmosphere throughout PCH, and it is because the staff here are so well trained at taking care of families-medical needs and otherwise. We know James is being taken care of, and we are so grateful for that. One of our nurses, Olga, kindly gave James his first friends at PCH: a bear and her personal choice for him, a kangaroo with a little Joey peeking out of the pouch. So kind! In addition, the child psychologist came down to visit James and made some black and white stimulation mobiles for him. James hasn't done too much with those, but I am sure he will at some point.
Overall, the day has been trying as we try to wrap our minds around the situation as a whole and prepare ourselves for a major surgery that will come at the end of the week. We know the Lord is in control and we see his hand calming our worries frequently. We hope to have many of our questions answered in the next day or two and we hope to move forward in this recovery process so James can come home to us.
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