Wil's birth story, part four

**Warning**I want to finish Wil's story today so this is a bit long. If you have been keeping up with all this you might want to grab a snack and get comfortable. If your tired of this never ending story, I don't blame you, come back tomorrow - I promise to have some new pics of the kids up. And maybe a funny or two from Luke.

It was a strange place to be. Earlier in the day I went to see Dr. R for what was becoming a routine appointment to see how Wil was holding up in utero and now, four hours later, he was here. And I was not with him. I was recovering from the surgery in post op and he, my premature son with issues I was totally unaware of, was in NICU III being cared for by a whole bunch of people I had never met. I was learning a new kind of trust. And once again I found myself in the position of having to wait. I didn’t know exactly what I was waiting on. Waiting on news that Wil was fine? That he was definitely going to need transfusions? That they had discovered something more? Something. Anything. I just wanted someone to come talk to me about Wil. And then there was my nausea, oh it was horrible. Turns out I do not do well coming off anesthesia, so I was waiting for that to be over too.

It wasn't until the next morning that I got any real reports on Wil. The nurse that was checking my incision was finishing up when Dr. R walked in. His tall, thin frame stood at the foot of my bed. James was not with me, he had gone home to be with Luke. Oh how I wished he were with me because I could just tell by the flat look on Dr. R's face this wasn't going to be encouraging. Though, truth be told, he never carried much expression and his bedside manner left a little to be desired. The exchange that followed was not an exception. Dr. R said, "Wil is doing okay, remarkably his hematocrits are fine so he won't need any transfusions but he appears to have an omphalocele that will likely require surgery. The Neonatal team is still trying to determine if that is, in fact, what the mass on his umbilical cord is. I also think he may have something called Beckwith-Weidemann syndrome. I will let you know more when we know more." And then he was gone. I sat in my bed, doped up on pain meds, with absolutely no one to talk with or ask questions of. How could he just dump that on me when I am here alone and not offer any explanation at all?! I reached for the phone and called my friend Kim who jumped on the computer and read the symptoms of B-W syndrome to me. She was reading slowly and carefully so I suspected she was also reading selectively. I never did ask her about that because it all became irrelevant pretty quickly. Later we received a visit from the Neonatologist, Dr. M, who said Wil did not have an omphalocele. All he had was a large benign mass on his umbilicus that they would "remove" but would leave him with a very prominent "outty." Big deal! We could deal with a prominent outty. She also said that they had ruled out B-W syndrome and wanted to rule out another syndrome, Down syndrome. She then offered to roll me down to NICU III to see Wil. FINALLY!!

After receiving instructions from the nurse on NICU protocol and being "warned" of the machines Wil was hooked up to I put on my paper robe and mask, washed my hands and forearms thoroughly and was wheeled to Wil's isolette. It was the one with the glow around it from all the bilirubin lights. He was precious, even with a CPAP and all those wires running from his body to various machines. I was able to sit beside him and touch his hand but could not hold him. I kept looking at him. Looking for some kind of sign from him, looking for Down syndrome. I had already been told that he did not have the palmer crease nor the space between his toes, two traits often found in people with Ds. It was hard to see much in his eyes because he had not opened them yet and he was still pretty swollen. I so wanted to hold him, to tell him everything was going to be okay. That he had an amazing dad and a fun-loving brother who couldn't wait to meet him and me, a mom who would do her best to give him all that he needed. But was that a promise I would be able to keep if he had Down syndrome, I wondered. I knew absolutely nothing about it. But we did not have a diagnosis yet, I kept reminding myself. It was all just speculation. Besides, I just didn't see it in him.

After two more days I was released from the hospital. Nothing significant had changed for Wil. He was still in NICU III, we still did not have a diagnosis (the geneticist came by to see Wil but felt he couldn't say with much certainty based on his bedside exam, so we had to wait on the karyotype), he was still hooked up to all sorts of machines, after being intubated for 12 hours he was back to breathing room air, he still needed every bili light in the unit, and he wasn't gaining weight. But it was time for me to go home. They wouldn't let me stay. Next to handing Wil over for heart surgery at five months old, leaving him at the hospital that day was the hardest thing I have done. I cried all the way to the car, sharing an elevator with another new mom being wheeled downstairs. But she had her baby in her arms. It all just felt so wrong. But it was what it was and I had to do what was necessary to get Wil strong and healthy so he could come home. I also had to recover from my c-section.

In the meantime I did what I do best, for better or worse, I went into “control” mode. I devoured everything I could get my hands on concerning Down syndrome. I read and read and read. James and I were overwhelmed with information and we didn’t even know yet whether our second son would be carrying us on this journey. He was just a few days old and I'd had so little time with him due to the limited hours in NICU III. The day after I was discharged my mom drove me to the hospital so we could both spend time with Wil. This was the day things changed for me.

His nurse, Elvie, was there and she was our favorite. She was a seasoned NICU nurse who was tender and caring. She was honest but not alarming. She was as good with the parents as she was with the newborns. In hindsight I see that it was God's providence that she was assigned to Wil his first week of life, more for my sake than his. As we stood by Wil’s isolette she was talking with us about his night and her impressions when Wil opened his eyes and looked up at me. It was the first time he really opened his eyes for any reasonable length of time. That’s when I “knew.” Those beautiful almond shaped eyes met mine and I knew that our lives were going to be very different than we had imagined. I saw it in his eyes with such certainty, it was as if he was speaking to me. I would like to say that I embraced this new certainty but I didn't, instead I walked into the waiting room and fell into a pile of tears until my mother and Elvie came to scoop me up. I don't remember everything that my mom said, or Elvie, but I remember it helped me put one foot in front of the other so that I could make my way back to Wil. Elvie then asked if I wanted to hold him. Really, I can hold him now? It was what I had been waiting on. And it was exactly what I needed. Wil wasn't a diagnosis to me, he didn't scare me, I loved him so much and, if possible, my love for him grew exponentially that moment, in NICU, when he spoke to me through his eyes.

For me, that is the end of Wil's birth story. Our lives became marked by the "before" and the "after." Wil remained in NICU for one month, his Karyotype came back to confirm what we knew, Trisomy 21, and we went on to discover his heart defects and so much more. Wil has changed us, and challenged us, and taught us, and encouraged us. The "after" has been so much better than the before!


Spitmonkey said...

Beautiful, Stacy.

My name is Sarah said...

Stacy this is Joyce. I was just able to read your birthing story with Wil in it's entirety. I am so moved by your strength. What an incredible roller coaster ride you experienced. Thank you for sharing.

Julie said...

Wow, you have a wonderful story. You're a terrific writer. Thanks for sharing all of it.

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