10 December 2014


For 5 months I had given Noah constant line-of-sight care. I knew what every look, every sound, every movement meant. We took extreme measures to keep him from getting sick. Except for hospital stays and appointments with specialists Noah didn't leave the house and neither did I. I left our house only three times while he was with us. Additionally, no one was allowed over. We only let one friend in the house during that entire time and she stayed across the room from Noah. When Daniel got home from work everyday he would walk straight back to our bedroom, change his clothes and scrub up like he was going into surgery. Only then would he go near Noah. It was extreme, but it was completely effective. 

During all that time we took Aurelia out of the house once, to go to church, and she picked up croup. While she was sick I tried to keep her in a separate room from Noah which was a horrible, horrible experience for her. In our small home, while I was constantly tending to Noah, I had her stay away from us. I still feel guilty for how isolated she was. We didn't take her out of the house again except during his hospitalizations.

While Noah was here the longest I slept at once was about an hour. Then, I would be woken by a quiet sputter and I would fly out of bed, knowing I had 7-10 seconds to vent Noah's stomach before he would start heaving and vomiting. I would run to the side of his crib (in our room), pause the pump running the slow feed into his g-tube, clamp his g-tube extension, pull out the tube running formula, insert into the g-tube extension the large syringe we used as a vent, then unclamp the extension. All the contents of his stomach, formula, air, bile, would then back-flow into the vent, relieving the pressure, emptying his stomach and stopping him from vomiting. That was if I made it to him in time.

I knew I wasn't fast enough when he would start heaving and screaming out between gasps. By that point it was too late for venting and I needed to pick him up, turn him on his left side and cradle him over the waiting burp cloths. Once it was over I would then vent his stomach to make sure all the pressure was relived. Then I would clean him up and use the tiny suction attachment to clear his airway, all through his nose and down into his throat. Then I'd use the pink mouth swabs from the hospital to "brush his teeth" and clean his mouth out.

The tiny suction tip we used to clear Noah's airway. His nose was too small for the standard tip.

I started to lose it. I was constantly exhausted. I was having trouble telling the difference between being awake and asleep, I was seeing things that weren't there, and I thought my heart was giving out (turned out to be anxiety). 

Despite all of his complications Noah was actually a healthy little boy. Aside from what was a challenge because of his skeletal abnormalities (anything needing head control) his development was on track and he was a VERY smart little boy. Every day we did hours of OT with him. All but about an hour of every day was devoted to his care, to the vomiting routine, to setting up the feeds through his feeding tube, to attempting oral feeding, and to OT. The one hour left over was spent trying to engage Aurelia, who was regressing in every way possible.

Noah had a normal, full life expectancy. Yes, he was medically complicated, but all of his individual health issues could be managed and weren't at all expected to be fatal if we kept doing what we were doing. Days before his discharge from the hospital at the end of January they did full scans and his heart and lungs were beautifully perfect. His lungs were clear and his little heart was beating away perfectly. 

THIS was why his transition plan was so crucial. Every moment of every day we were assessing every danger, every possible setback, everything that could possibly be a detriment to Noah's health. Every moment we were assessing and aware of every aspect of his health. While my anxiety level was extremely high, I was completely confident that he would survive all of it because of how meticulous his care was.

About two weeks after signing papers it was clear there was no hope of Noah's transition planning happening. We had only had the opportunity to give his last parents minimal information. I had written out a rough schedule of his day. They knew the dates of his previous hospitalizations, but not what they were for. They knew his previous surgeries, the ones he would need in the future, and when they should happen. They knew about his Russell-Silver Syndrome diagnosis, but not his central apnea. I kept running through my mind all the things they NEEDED to know.

"They don't know about his pneumonia warning signs, I need to tell them. I don't even think they know we spent Christmas in the ICU. They don't know what's normal for him. What if they see this or that and think it's just a normal baby thing? What if they don't recognize his warning signs quickly enough? What if they see drooling or spit bubbles and think it's a normal baby thing, not knowing it's his sign he's developing pneumonia and needs to go to the hospital? They live so far from either of his hospitals, what if they can't get him to the hospital quickly enough? Did they get the right suction machine? Are they suctioning and completely clearing his airway every time he vomits? Did they learn how to vent his g-tube to stop him when he's about to vomit? Do they recognize the cues of when he's about to start heaving? They're first time parents, what if they're letting people around him?"

All of this was running through my mind on a constant loop, but we knew nothing. It was a shock to suddenly go from being necessarily hyper-vigilant, to no longer having Noah in our care, let alone having NO idea if his last parents had miraculously, immediately picked up on everything on their own.

I kept trying to calm myself. I knew that right before papers were signed his doctors had done x-rays and an ultrasound of his heart and lungs. They were still perfect. "He's okay, you're just adjusting," I tried telling myself, but I didn't believe it. "He's NOT okay!" my mind kept screaming. Even Daniel, ever the optimist, couldn't honestly tell me he thought Noah was okay.

I called a friend and former caseworker to ask her advice. What should I do?? They've shut us out! If I push harder they'll shut us out more completely. I felt like something was very, very wrong. I was struggling to explain to her everything I was feeling. All I could think to describe it was "frantic". I told her, "I feel frantic. I feel panicked. I just...I'm frantic!" On the phone I paced back and forth in Aurelia's small room, telling everything to this friend. She listened and I don't even remember what advice she gave. What could we possibly do?

Aside from feeling frantic about Noah's survival we were grieving at the same time. We had counted on that transition plan. To make it through all of this, to heal, to move on, we had told ourselves "we'll finish out the transition plan, close that chapter and move on. We will have finished our role in his life." But it didn't happen. We were left hanging, hurting and...well, frantic. 

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