August 1, 2009
On this day, I could have danced through the corridors at ACH. My baby was off ECMO.
It was a day of celebration. I was overjoyed and in tears most of the day. We had that enormous ugly machine and Peter behind us. We were moving forward. I also made a decision no parent should ever have to make….a DNR. Once the doctors saw I was so cheerful to be off ECMO, the next question was, “what if he has to be put back on it?” No. Don’t judge us for that choice. We prayed about it and discussed it as his parents. We didn’t involve anyone else except his team of doctors in that decision. It was what was best for Jonah. We do not regret that choice.
"Jonah is proving every day to be a fighter and a true warrior. He came through surgery - and did NOT have to go back on ECMO. Thank the GOOD LORD for all his wonderful blessings and miracles. I can't understand why this all happened and I don't know why God is allowing us to witness it all. It truly is amazing to see this 13 day old baby with more fight than any adult I've ever met.”
Jonah was returning to typical baby mode, except for that wide-open chest with a thumping heart. I didn’t notice that anymore. I only saw my gorgeous son that entranced me with each glance. Of course, with every two steps forward, we take a step back. And we did. Jonah’s kidney’s were shutting down. Renal kidney failure. You never want to hear those words. But considering what Jonah had just triumphed over, I didn’t see this as a huge complication.
“He needs prayers for his kidneys today. We have another obstacle ahead of us. Jonah has quit producing his normal amount of urine. His kidneys did go to sleep while he was on ECMO this last time. They are putting him on dialysis. His cardiologist (Dr. Eble - the BEST) said it could take 2 days to a month.”
Out with one machine and bring in another. Here came dialysis. They had to search the hospital for a dialysis machine appropriate for him. Dr. Eble thought dialysis might wake up those sleepy kidneys, and we were willing to give it a try.
“Jonah is opening his eyes more often. He's discovered his tongue and is really showing it to all of us. His nurse last night, Brian (also, awesome) said Jonah woke up for his entire bath last night. Brian said he watched him intently - did not just stare off into space.”
“Today, little Jonah almost looked like he wanted to cry. He's not feeling pain. His doctor reminded me that is what newborns do - CRY. It's been awhile since I've had a newborn. He is a little uncomfortable from the swelling but the dialysis will remedy that, as well.”
He was swelling more as the time went by. As soon as my newborn returned, he slowly started to fade again as his body began to fill up with fluids. I waited anxiously for the urine. Pee, Jonah, pee. I just kept waiting for it.
“Jonah's still a sick little baby but he’s doing the work himself right now. No support except the ventilator, which he had previously been breathing over. He's blowing bubbles and wiggling his fingers and toes. All beautiful things! He gripped my finger today until he went to sleep then he relaxed.”
At this moment, I felt as if Jonah had won half the battle. He was needing less support to survive and he was waking up more, and being my baby. Five days left in his precious life, and I was still unwilling to admit defeat.
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