The day started out normally enough, we visited and held hands and read stories. Pastor Ron came by and prayed with us. About 3 o'clock, it looked like he started hemorrhaging out of his penis. (I can tell you straight up that there is a sentence you never like to type about ANYBODY!) The bleed is worse than it should be due to the heparin (blood thinner) required by ECMO, and it just would not stop yesterday. As fast as they could put blood in, he would leak it out.
They gave him an off-ECMO trial for a few minutes, since the bleed will not stop until he's off blood thinners. He didn't do so hot on that, so coming off ECMO wasn't a choice at that time.
They tried to address the bleed. His heparin was lowered, he was given platelets and coagulants, nothing worked.
About 15 doctors and nurses crowded around the bed. The medical director was called in. These are never good signs to a NICU parent.
After much discussion, a plan was set into place that the urologist would come insert a thicker catheter in hopes of increasing the pressure on the bleed and lowering the volume pouring out. Without anybody really saying as much, we were rapidly approaching the "last ditch" efforts. If the bleeding didn't stop, he was going to come off ECMO anyway. Mike and I were sent away for a while, so we came home for my medicine and to tell JeanJean and Jeremiah that we'd be gone for an unknown amount of time.
It was a horrible drive home. Mike and I were hysterically crying, praying, and trying to maintain some degree of faith that this would work.
We got back to the hospital and stood in the hallway waiting for the doctors. All of this went down right at shift change, so we were out in the hallway for a while- pacing, praying, clutching each other. In the middle of all this, I had to keep to the pumping schedule (any mommies out there know that the milk machine presses on regardless of emotional turmoil). I spent that entire pumping session praying to God to please please please let this bottle of milk be needed one day. It was a dark dark time.
*insert break to thank you all for your texts, Facebook messages, and blog comments. We felt it, we really did.*
We finally got the call to go back to the unit, and we walked into a calm, tranquil room. The larger catheter is doing its job, and the bleeding has slowed to a trickle (it won't entirely stop until he's off ECMO). Everything was stabilized, and he was back on his paralytic to ensure no jarring of his extra sensitive man parts.
We settled back down, rubbed his little hands and face, and told him that was enough drama for the day. The doctors were relieved, we were relieved, big exhale. Aaaaaaaaaaaaandddd.............
ECMO circuit blows. Mike and I shoved out of room again. Herded in to small conference room. Thankfully, it was a pretty quick wait and the doctor came in quickly. Parker handled the whole thing perfectly, and his "reserves" of heart and lung function were actually better than they had been during the afternoon.
Mike and I called it a day, at that point. We made sure that he was settled and read to him before we knew we had to go home to rest. We slept with one eye and one ear open, waiting for the phone to ring, which it blessedly did not.
His day today has been eventful-- an ECMO circuit change for clean tubing (the old ones were getting yucky...it happens on almost every ECMO run and is to be expected.) He did great and stabilized quickly afterwards. He has been put on dialysis for a short while, which is also normal for ECMO circuit changes. There is usually an accompanying fluid buildup with an circuit change, and the dialysis helps with that. It's temporary and shouldn't have any bearing on his ability to get off ECMO as soon as possible.
We are, basically, back where we were before all this went south. I am pleased to be there. I knew, going into it, that we'd have our share of ups and downs, and I've honestly been waiting for the first shoe to drop since Friday. Nothing can prepare you for when it does happen, but God's grace and thousands of prayers carried us through yesterday. I read and reread and reread Psalm 46 last night and this morning, and listened to "I Lift My Hands" by Chris Tomlin. God is our refuge and strength, and an ever present help in trouble. No doubt about it, or else we would not have survived the last day, and neither would have Parker.
Thank you all for you many many prayers, love, and support. Here's to a better day today!