I wrote this blog for the #blogchallenge for February and heart defects.
The first time we had any indication that there was a problem with Riley's heart was at 4 days old. We had a meeting with our doctor just 24 hours before and he had told us that they were contemplating taking her off the ventilator. They put her on caffeine to try and remind her to breathe on her own.
I got sent home from the hospital on day 4. We met with her doctors before heading to the pharmacy for my new blood pressure meds. We stopped by the house since it had been over a week since I had been home. We had 50+ messages on the answering machine, mostly people who were just sending us some love. By that point, we had a pretty good system on how to update people including a blog which was pretty much unheard of in 2002.
When the phone rang, we both froze. I saw the caller ID had the hospital name and you know that feeling when something bad happens and you get that coppery tang taste in your mouth? Yeah, that was us. Her nurse told us that Riley was struggling and we needed to come back...quickly. I remember Rick offering to grab me a wheelchair when we got into the hospital but I turned him down and did the c-section shuffle all the way to the 3rd floor NICU.
Anyway, they explained that she had a PDA and it was allowing oxygenated blood and unoxygenated blood to mix willy nilly in her heart/lungs and was causing some damage. They told us there was a medication that would hopefully fix it. We looked at her chest x-rays. We made phone calls. We prayed. We stayed by her side before the nurses gently reminded me that I had been out of the hospital less than 24 hours and I needed some sleep.
The next morning's call before we walked out the door brought good news. She was doing better. There was much rejoicing. Within a few days, however, it became apparent that our joy was premature. It had popped back open and surgery was necessary to close it. And she was a mess. Her lungs were a mess. She was struggling for her life...even more than she was before. Rick and I walked into the NICU when she was 12 days old. She had three ventilators rolled up by her isolette. She had the privacy dividers up. They would leave her on one for an hour, then xray her and make adjustments if necessary. I was so freaking naive, I had no idea how bad it was. I just trusted that they would fix each issue as it popped up. Her surgery was originally slated for Thursday but got moved to Friday morning when her cardiologist got pulled into a conjoined twin separation surgery.
Friday morning dawned crisp and cool. It was St. Patrick's Day. I'm sitting here writing this and wondering why in the hell we even left the hospital that night. They kept telling us they had reserved us one of the two RMH rooms that was inside the hospital. But we lived so close that we wanted them to give it to someone who really needed it. I literally want to throw up thinking about what if things had turned out differently and we had lost her that night. We found out years later that those two rooms were reserved for the sickest kids in the hospital. To think that my girl was considered the sickest kid in a children's hospital.
Anyway, after a handful of hours away, we headed back in. And got stuck in a traffic jam that was caused by the city shutting down streets for the parade that would be happening that day. And I lost my ***. Full on lost my ***. I'm sure it scared Rick. I was obviously traumatized by three weeks of intense stress between being diagnosed with PE and HELLP, my hospitalization, her birth, me almost dying thing and the NICU and then this.
Rick, being Rick, just calmly turned onto a side street and started winding his way through downtown to get to the hospital. I had this horrible fear that she would go into surgery before I even got to touch her sweet head for what could be the last time.
But get there we did and eventually it was our turn. And it could not have been too soon. She was fading so quickly. Then the unbelievable happened, the battery on the portable vent quit on the way to surgery. So they bagged her by hand for the next five minutes as we walked down the hall. And then the *** hit the fan. As we walking into the surgical unit, the surgery nurse asked what her potassium level was. Everyone looked at Riley's nurse and she blanched. She had forgotten to check it. The neonatologist stepped up the plate and said that he had given her potassium that morning so he knew the numbers were fine...just get her into the operating room while they checked the blood. The surgeon's group refused. If the level wasn't high enough, the operating room would have to be reset and we'd have to pay for that. Meanwhile my 1 pound child was still being bagged. Eventually, we had to return her to the NICU for the blood test. All of this couldn't have taken more than 20 minutes but it felt like hours. Once back in the NICU, they couldn't get blood from her and the neonatologist did it himself from her head. The nurse kept apologizing but what could we say at that point? Dr. B went out in the hallway with the rest of the team and we could hear him yelling about the mistake and the surgical unit.
Eventually the tests were back and her potassium was fine. The good thing was that we had a different vent this time and we made it down to surgery quickly. The surgeon explained that her tissue was the consistency of wet paper towels and the trick was to tie a knot in that tissue and make sure it didn't rip. We went to the surgical waiting room and waited with friends and family. Dr B hugged us both and explained that he was off and would be checking in with the on call doctors. However, ten minutes later, he walked back into the waiting room and sat down with us saying that he couldn't leave without making sure she was okay.
It was getting late by the time we got the call that the surgery went well and she was going back to the NICU. The doctors explained to us that she would be sedated for hours and wouldn't be awake until sometime the next day (Saturday). They let us take a peek at her in her open isolette which was wrapped in plastic wrap. We decided to go to dinner and then come back. We found an Irish restaurant and sat down at the table with our friends which is when I apparently laid my head down on the table and went to sleep while everyone ate.
Knowing we wouldn't be able to go home without going back to check on her, we headed back to the hospital. We walked into her module and saw an exhausted Dr. B sitting with her and from above the edge of the isolette, we saw a little fist raised in the air with the covering of plastic wrap completely balled up in it. Her eyes were open. I turned to her and said with mock irritation and so much relief, "Riley Marie, that's probably $4,000 worth of plastic wrap." Dr. B plucked it out her hand and threw it in the trash. I rolled my eyes and said to him, "Take that home and put it on your leftovers." He sighed at me. "Julie, I have quadruplets who are 11. I don't have leftovers." He winked at us and said, "she's got attitude. That's a good sign."
We actually ran into that cardiologist on Halloween when we were at the hospital for an event. I introduced myself and Riley and his smile was so sweet. He thanked me for stopping him and said, "I needed that today."
And as for Dr. B? One of those quads that I mentioned is one Riley's best friends now. Next week she will be with us when we go to Orlando so she and Riley can run in the Princess Half Marathon. And she's a NICU nurse.
Please remind me next time I see you that you owe me a fresh face of makeup...because I am sitting at my desk with eyeliner and mascara running down my face and half of my foundation on a tissue from wiping tears. This one really got to me. I think its absolutely amazing how full circle this all came to be. So happy for you, Rick, Riley and her friend. And God bless that cardiologist and his committment to his tiny patient.
Love and Hugs
I'm so glad Riley Marie has attitude! Then.... and now... even if you don't. ;-)
Thank you for sharing your journey with us. Love you both to the moon (Rick too).
Run, Riley, Run!
Love and hugs to you!
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