In other news, you perhaps might notice that it has been 48 hours since I whisper typed about having a nice quiet week with Parker and preparing to maybe talk about possibly eventually coming off ECMO towards the middle-end of this week. My whisper typing is apparently not quiet enough.
Saturday, as I wrote, was quiet and calm and peaceful, minus his two heart speedups (apparently those are called SVTs. You could read about it, but it will hurt your head.). Sunday, we went to church as a family, which was just plain good for our souls. We were loved on and hugged on and fussed over and told a million times that people are praying for us daily. Mike went to the hospital for the day shift, and after he came home for dinner, I took my first Storytime Shift. Storytime Shift happens from 9 to midnight, which sounds wretched to people who are not night owls like we are. It will probably have to end after this week, when Mike will head back to work and we will have to adjust our schedules accordingly.
I loved Storytime Shift. I got to spend the day with Jeremiah, take a good nap while he napped, reheated the first of my Psycho Mommy Freezer Meals, and then headed down to sit with my little swollen conehead P-nut and read him a story. (I chose Farley Goes to the Doctor. It was my favorite when I was a little girl... our copy is 30 years old and well-loved, and I thought it appropriate for Parker's situation. I loved the Sesame Street books. We still have so many of them!)
Parker DID NOT enjoy Farley. He spent the entire time I was there just plain pissed off. He was flailing. He was pouting. His blood pressure spiked. He shifted his cannulae and set the ECMO machine into a tizzy. All his numbers were fine, minus some occasional blood pressure and 2 more SVTs, but he was just plain ornery. I stayed later than I meant to so I could be sure he calmed down, and crawled into bed around 2 am.
At 6:30 this morning, my cell phone rang. Any NICU parent can tell you, those wake-up calls are the ones you never ever want to receive. I managed to swallow the bile rising in my throat long enough to croak out a greeting of some sort. It was the on-call neonatologist.
"Hi, Mrs. Knoll. *insert pleasantries* We have been having to push a lot of blood products into Parker overnight."
Heart failure. Last time we heard those words, we almost lost our little boy.
"The ECMO circuit is starting to get clogged and is consuming much of the platelets that we have been giving. At this point, the machine is starting to do more harm than good, and we are going to take him off this morning."
Pause long enough to be pleased that penis bleeding is not the issue, then panic as realization sets in. Thankfully, she had to click over to the other line to talk to the surgeon and said she'd call me back. I used those few minutes to wake my sorry self up and nudge Mike. She called back, and I asked how long we had. "It will pretty much be now, as soon as Dr. Parker gets here."
Breathe huge sigh of relief that it is Dr. Parker (we met with him prenatally-- he is very kind, scary scary smart, and everyone around that hospital has the nicest things to say about him). Fly out of bed, jump into shower, drag Jeremiah out of bed, place frantic phone calls to Sister to arrange last minute childcare (She lives 8 doors away from me and I am everyday grateful. Love you Sister!), get husband and child and self out the door. Hold tight as husband drives
I did use that car ride to do something I have never done--we were in such a hurry this morning that I actually had to utilize the car adapter for my breast pump. Yep, we were "southbound with the hammer down" as my brother-in-law says, with me attempting some modicum of decency with a dishtowel draped over my seatbelt. I always wondered why on earth they include a car adapter. NOW I KNOW.
We got to the hospital in plenty of time to see Parker before the decannulation. They had "capped off" the ECMO circuit, which means that it was still circulating blood for him, but it was not contributing any oxygen whatsoever. They turned up his ventilator to the settings they would use after the surgery, and took some blood gas measurements. They were spot on, combined with the results from his oxygen challenge the day before. The window of opportunity had opened, and I am happy they made the choice to go on through. Had the machine not started to get gummy, we might have waited a few more days. I like to think Parker's restlessness the night before was him saying, "I am ready! Get these tubes out already!"
Dr. Parker arrived and walked us through what would happen. He would remove the two large catheters stuck in his neck, and stitch the openings closed. He would also put in a temporary central line using one of the holes to deliver the medicines that Parker was getting through his ECMO circuit. It's pretty straightforward, but also dangerous (obviously). We kissed him and loved on him and told him to be strong. I snapped one last picture of our bedspace before...
**shout out to nurse Sarah! Woo woo! Love and adore her. She dealt so nicely with my hormonal sweaty armpit nervousness and my husband's incessant questioning and pacing.**
We waited in a consult room for about 45 minutes before Dr. Parker came in to tell us that all had gone smoothly (Parker did throw in one last SVT right before they started, just for fun), and that he was doing just fine. We can expect these first few days of transition to a ventilator to be rough, due to the fact that his heart and lungs are actually having to work now. He said that we should start looking towards next Monday or Tuesday for Parker's hernia repair, which will allow him to rest and strengthen his lungs as much as possible this week. Shortly thereafter, we went back to our greatly improved bedspace (they did the whole shebang right there in the NICU and never had to move Parker at all!)...
Look at the space! Dance party, anyone?
We took a Proud Parent shot with our much less frightening baby.
We instigated Operation Cure Parker's Conehead and got to see his face straight on for the first time!
Parker celebrated by taking the first poop of his whole life. Yep-- he had gone 11 days without ridding himself of the dreaded meconium. So he ridded himself today. Over and over and over and over and over again. We love poop from Parker-- it means that his intestines are emptying, which will greatly aid the hernia repair process. The nurses have informed us that they will happily hand off dirty diaper duty soon, and I cannot wait to wipe that scrawny little fanny for the first time.
The next few days will focus on helping him adjust to the ventilator (he's doing well so far! Some minor hiccups with his carbon dioxide numbers, but his oxygen has been great!), trying to de-puff the marshmallow man (he's on diuretics and peeing *and now pooping* up a storm), and warding off pulmonary hypertension. He has some (it would be a miracle if he didn't), but it's not too concerning just yet. We'd like it to go away real fast, because that is what gets CDH babies into trouble.
There's enough time to worry about all that this week. We are going to bed tonight so immensely proud of our boy-- it was a less than ideal way to get yanked off ECMO, but the doctors truly felt he was ready and that the timing was right. It was a scary day, and an exhausting day, but we are beside ourselves with relief. He's so much less scary to us now. We can approach his bedside so much more easily, we can actually touch him and rub him and smooch him
All day today, as I was praying and pleading for this to go smoothly, and then praying and praising for God's mercies, I had this verse running on a loop in my head:
"This is what the Sovereign Lord says to these bones: I will make breath enter you, and you will come to life. I will attach tendons to you and make flesh come upon you and cover you with skin; I will put breath in you, and you will come to life. Then you will know that I am the Lord."
He put breath into Parker's body today. Granted, it's with all sorts of mechanical assistance, but when push comes to shove, God made sure Parker was ready to come off ECMO. And we know, as we have been reminded so often during this journey, that He is the Lord. Amen!