I think if there was ever a moment when I wanted time to stop, I might choose now. The more I learn about what the next month will bring, the more I don't want it to happen.
Yesterday I walked through the Cardiac ICU and the Neonatal ICU. Both places almost brought me to tears. Although I know our baby will be excellently taken care of, it is heartbreaking for me to see what is in his future.
I saw babies heavily sedated so they won't feel the pain that comes after surgery.
I saw so many tubes and monitors attached to the babies, that it made it virtually impossible for anyone to hold them.
I saw feeding tubes replacing breastfeeding.
I saw some babies who had nobody in their rooms.
I saw some mothers sleeping on little fold-out beds, clearly uncomfortable and exhausted.
I saw people eating in the cafeteria, instead of enjoying a nice meal at home with their families.
I saw no siblings visiting their little brother or sister, because it isn't allowed based on all the influx of sickness going around.
I saw how things would be for me, in the weeks I will be there, and I just pray I have the strength to survive it.
I know that it will be just a short time to go through, but that thought doesn't seem to matter right now. It is going to be hard. We were told, during yesterday's appointment, that they could delay surgery for up to a week. That just means that there is one more week of living at the hospital, away from my family. We were also told that they could bring me up there a week or two BEFORE I have the baby, just to ensure that when I go into labor, I am there, instead of worrying about having a super fast labor (like all my other children) and not making it to the hospital in time. I don't want to be up there that long! I think I'd rather take my chances at having a fast labor, and delivering here in Colorado Springs, instead of up in Denver. We'd both get transferred up there the next day anyway, so it doesn't seem that bad of a situation, compared to living up in Denver at the Ronald McDonald house for a week or two. How would we manage the kids during that time? It's just too much to try to move them between houses. So we hope that my OB doctors come up with a different solution, the closer we get.
There is still the possibility that the baby's surgeries could go in a different direction than the original plan. He has a really nice fat artery that they think might be manageable, and if they can get the pulmonary valve to work, by ballooning it, and get blood flow through the right ventricle, there is a small possibility (5% chance) that his heart could become a functioning 4 chamber heart. Although they don't hold much hope for it, there is still something they see on ultrasound that could make it possible. Nothing can be decided until he is born, and they get a better look through all the procedures he will undergo in his first few days of life. We were told that as far as congenital birth defects go, our baby's deformity is a 7, based on a scale of 1-10, 10 being the worst. His heart formed this way when he was about 8 weeks gestation, and since it's been this way from the beginning, there isn't much chance for his heart to change ways, even with certain surgeries. So that's another reason this new direction of surgeries has such a slim chance of working. Sometimes you just can't change the way nature made things. Again, it's a wait and see scenario.
So, I'm just in the moment right now. I don't want time to move on. Somebody stop the clock.