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The Boy Who Proved Them Wrong.

Continued from Birth and Afterbirth and The Roller Coast Ride From Hell.

Distraught after Desmond was not discharged from the hospital as planned, I went home. Another night there refreshed me and I wanted to take some time to sleep in and be cheered up by Scarlet. I was so happy that the ridiculousness was behind us and that every hour that passed was an hour closer to the end of the three more days of antibiotics. Right? Right.

When left to my own devices, my mind sometimes isn’t a great companion to spend time with. I started to worry all over again about every single thing. Nothing seemed concrete in my mind. I decided to call the hospital later the next morning and see how Desmond was and see if the nurse thought I should come in and feed him. When I called, instead of getting transferred to Desmond’s nurse, the doctor came on the phone. This was not good. He said that he had tried to call me but couldn’t reach me and I can’t for the life of me imagine what number he tried. I had my phone glued to my side always. He said that the infection was fine but that Desmond’s blood pressure was a bit high. It wasn’t dangerously high or even close to that, but since they always have to rule out the worst case scenario, they were going to do heart and kidney ultrasounds on Desmond. I really couldn’t believe it. After all of my optimism and excitement, this was the most crushing blow. I thought I might puke. After we got off of the phone, I had to wait around for Cassidy and Scarlet to come home from errands. Cassidy knew instantly from my face that something was seriously wrong. He was definitely horrified when I told him, but luckily he’s a bit more logical and less instantly emotional than I am and he was pretty assured that everything would turn out fine.

I decided to go straight to the hospital. I called my mom on the way and just cried out my frustrations. It seemed like this roller coaster ride would never end. Of course, since I was in a hurry, traffic was at a standstill on the highway. I lived in Jersey for awhile so I’m no stranger to traffic, but years in western Mass have spoiled me. Traffic is not necessarily commonplace around here. It didn’t have very good timing. I thought I might break something.

Finally I got to Springfield and raced into the NICU only to be told he was having a renal scan at that moment and I had to wait outside on a bench. I sat in the waiting area furiously typing in worst case scenarios in Google on my phone. I saw a baby in an incubator being rushed past me and I looked in horror. I had seen a patch of dark hair but I was too horrified to move. Luckily the nurse at the reception desk saw me and calmed me down. “That wasn’t your baby, honey. Yours will be pushed by his nurse from that direction.” And she showed me where to expect it from. The same doctor we had been talking with all this time came by and sat on the bench next to me. He drew me a bad diagram of what could potentially be wrong with Desmond in the worst case scenario. Then he left and I furiously Googled results of this now that I had a name for it.

After an eternity, or like 20 minutes, the nurse wheeled a peacefully sleeping Desmond by. She said he had done great and slept through everything. She also said his kidneys were totally fine. Duh. Then I had to wait outside for another hour while the pediatric cardiology team did an echo on Desmond’s heart, which also revealed that he had a perfectly working heart.

Duh.

This did not explain the slightly high blood pressure. They decided that if they got three more readings above a certain amount, they would give him blood pressure medication. I decided it was best that I went home again for the night. I had thought the previous day’s disappointment of almost being discharged and then not being discharged was the ultimate bad day. Now I realized a next day could get even worse. I wanted Desmond to be calm and happy because that would surely lower his blood pressure and I knew in my panicked and undernourished and dehydrated state, I might not be able to help. I went home miserably and discovered I had missed Scarlet’s bedtime. I couldn’t possibly feel any lower. I sank onto the couch and hugged Scarlet’s stuffed polar bear. It actually helped me feel better!

My phone rang around 9:00 pm and I could see it was a hospital phone number so I gave it to Cassidy to answer. I had absolutely nothing left to give and I couldn’t trust myself on the phone.

It was another doctor from the NICU. He said he wanted to give Des the blood pressure medication. Cassidy was very sane on the phone and wondered if maybe the stress of the NICU and being put back on antibiotics and then being put under jaundice lights at exactly the same time might have raised Desmond’s blood pressure. The doctor agreed that it was a very good theory. Cassidy asked him to call us, no matter the time, if they had good news to give. The doctor said he would.

We were both defeated at this point and fell asleep. Around midnight I got up to pump milk and the phone rang. It was that same doctor who had previously called. He said, “Great news. Desmond shocked us all. His blood pressure went down to wonderfully normal levels and has stayed that way. We never did give him medication and now we won’t unless it goes back up.” I was so elated to have a victory on our side and I woke up Cassidy to tell him. He was also thrilled. He was going to go to work for the next two days and his mom would be coming over to watch Scarlet. This gave me two days to go back and forth to the hospital whenever needed.

The next morning I went to the hospital to discover that his blood pressure had stabilized wonderfully. The Nephrology (kidney) team came by to analyze Desmond and all of his bloodwork. They determined that the blood pressure episode was just his normal way of dealing with change and stress and now he was stabilized. There was nothing wrong with him. Duh! On a sidenote, as someone who has been sensitive to my body since birth which was inherited, no doubt, by my mom who is the same, of course it’s possible to have a sensitive kid who can sense things even at a week old. I do believe Desmond was just reacting to his unfortunate circumstances.

After such a stressful two days, I was at least cheered to know that I was even more aware of my son’s health than most parents are. After all, how many of your newborns were subjected to days worth of bloodwork, renal scans and heart ultrasounds, all of which turned out completely normal and healthy? I’m also happy to say that those two horrible days were the worst of it. The doctors all agreed that the stresses brought on the blood pressure and that once the antibiotic rounds were up, we were taking Desmond home. Cassidy came to visit the hospital when I was there and we ran into one of the staff members from back during the ambulance transfer to Baystate. She was the one who told me that things would be ok. She was happy to see us looking happy and she told me that in her career, she makes a point never to look back at the parents when they’re transferring a baby in an incubator to an ambulance. She said she looked back at me that day and saw me sobbing and saw Cassidy holding me and it haunted her for days. I think she even said it made her cry. She told me that her next shift was Friday morning (it was currently Wednesday) and she wanted to come in on Friday and not see me or Desmond. I told her I hoped it would happen.

We got through the next two days by some force of will. We were afraid to share that we thought he was coming home because we were afraid the rug would be pulled from underneath us again. On Thursday morning, the day of the potential discharge, I discovered that he had been transferred the previous night to the Graduate Nursery. In all honesty, that’s where he should have been all along but they had no room for him there. He had spent his nights surrounded by 24 and 25-week-old babies and hearing warning alarms and seeing flashing lights 24/7. The Graduate Nursery was calm and full of later term, healthier babies. His last nurse at Baystate was an angel and she talked me through exactly how to do everything timely. First we pulled him off the monitors because in all of his six days at Baystate, he never once had low oxygen levels or an elevated heartrate or anything wrong. Duh! So my poor son got those stupid stickers from the monitors off of his chests and feet. I ran into our normal doctor one last time and he told me, “This time, I’m sure of sending him home.” It made me feel great that he was sending Desmond home with confidence. It was the missing piece of the story.

Then they did the carseat fit check which he passed. At well over eight pounds, one would hope. Then they had to do a final hearing test, which he passed, of course. In both ears. Then we just had to wait. My breath was held all day. I went home to get some rest, food and drink and hang with Scarlet and Grandma. Cassidy met me home at 4:00 pm so we could go to the hospital together. Unfortunately, Scarlet was getting over a bad cold so we had to leave her home. I felt like I was going to the prom or something. I had nervous butterflies. Healthy nerves. That’s how I knew it was real this time. Sure enough when we got to the hospital, everything was smooth. People really did want us to leave! Cassidy told the nurse at the reception desk, “Desmond Bowman’s parents are here…for the last time.” Luckily she laughed.

We got him discharged and we were off. People kept congratulating us and wishing us well but Cassidy was moving so fast, rushing ahead to the elevator and out of the building. It’s both sad and comical that our experience had made us so paranoid that he was literally running past well-wishers because he was afraid people would chase us and stop us and try to take our baby for more testing. We took a cute picture outside of the hospital:

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We were so happy and we kept talking about it. The first night with Desmond home was a little strange because he wasn’t hooked up to any monitors and how would we know anything was wrong? And then I realized that even hooked up to every monitor and scan in existence, nothing was ever wrong, and certainly wouldn’t be in our quiet and happy home. For days I kept telling Des, “This is your life now. If your hands and feet are bound in any way, it’s from your overeager sister and not from bandages and monitors! The same goes for sudden loud noises…that’s also your big sister.”

Was anything ever wrong with him, is a question I wonder about a lot. Most people think probably not. At least we know for sure now. And that helps me sleep through the night, every night. We cannot get back that week that we lost, and I know the post traumatic stress will rear up for me every now and then, but he’s home and he’s healthy and that’s what matters.

I like to think of the Friday nurses coming in the day after we brought him home..I like to think of them seeing him gone and smiling to themselves that he was where he belonged.

Finally.

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2 Comments

  1. Time certainly went in slow motion for us that week. Thanks for your depth, realizing my pain too. I always knew everything would be fine and my job was to help calm you down. I guess it was my faith that finally calmed me down. Go Desmond!!!!!

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