Thursday, November 12, 2015

Being a NICU Mom: My Story

In honor of National Prematurity Awareness Month (November,) I thought I'd share something about my son's rough beginning in life.

If you've been reading this blog for a while and never heard me refer to my son as a preemie, it's because I never do. At 36 weeks and 5 days, he was only technically premature by two days. When I mention the NICU and people ask "How early was he?" they seem almost disappointed at the answer!

I knew in advance I'd need a C-section because I had placenta previa. We had the surgery scheduled for 37 weeks but I didn't quite make it and ended up with an emergency cesarean a few days before. The procedure was complicated and scary for me, but as far as my son went it appeared that everything was fine at first.

When he was born they brought him over for me to hold, and wanted to take him to the nursery quickly afterward. I guess they don't like to have babies hanging out in the O.R. for longer than they have to. But I begged for them to let him stay for just a little while longer. In retrospect, I'm so glad I did that, because it ended up being the last time I would hold him for 5 days.

In the nursery, they discovered that his lungs weren't making enough surfactant, which basically meant that he was having to work too hard to breathe.

He was put under an oxygen hood in the special care nursery and not allowed to come out. I wasn't able to really absorb the news until later that afternoon; because of a bad reaction to medication during the C-section I was in and out of a groggy stupor for almost 6 hours.

When my head had finally stopped reeling, a nurse wheeled my bed into the special care nursery and squeezed it in next to my son's bed.

Being a NICU Mom: My Story  -- What's it like to have a preemie in the NICU?  {posted @ Unremarkable Files}


It had been a long day. A long 3 weeks, actually, from hospital bed rest to emergency C-section and now this. I think I single-handedly depleted the hospital of Kleenex that day.

Our hospital didn't have a proper NICU, and it soon became clear that my son was going to need one where he could be intubated.

His pediatrician made calls to several nearby hospitals that had both a NICU and a maternity ward so they could transfer the pair of us together, but they were all full.

The only NICU that had room was at Children's Hospital, and I wouldn't be able go with him. I would stay where I was recovering from my C-section for 4 days, and he would be in the NICU at Children's an hour away.

I didn't know how long it would be until the transport team got there.

"I want him to have a blessing before he goes," I said. I was having so much trouble even formulating a coherent thought that might pass as a prayer, but I did have the presence of mind to insist on this.

In our religion, the Church of Jesus Christ of Latter-day Saints (Mormons,) we believe in the reality of priesthood blessings of healing. Not that they'll always produce an immediate miracle, but that petitioning the help of God and putting the power of the priesthood on a sick person is always a good idea.

We called a friend from church who lived nearby, and within 15 minutes he was with us in the nursery. He and my husband Phillip put their hands on the baby's head to begin the blessing, and it wasn't until our friend turned to me and asked, "What's his full name?" that I realized he didn't have one yet.

I'd completely forgotten that new parents do normal, happy things like name their baby. We were so far removed from that world. This day had gone so differently than I'd ever imagined.

So my son was blessed as "Baby Evans." After the blessing he spit up some fluid and ended up not needing to be intubated until the next day.

After they finished the blessing, our friend turned to me and asked if I wanted one, too. Not a blessing of healing, but a blessing of comfort. Boy, did I. I couldn't even speak I was so choked up, I could only nod.

Our blessings, and the moment I saw him for the first time, were the only two bright spots in that dark day. As time goes on I forget how dark it really was. I'm shocked when I look at pictures from those first few days and weeks, when my smile never reached my eyes and I looked more tired than you'd think possible.

I would come to find over the next few weeks that when your baby is taken from you right after birth and put in the care of others, you start to feel like he's not really yours. The nurses in the NICU have to get your consent for medical procedures, but you have to ask their permission before holding him. It's almost like the hospital has a baby that you, for some reason, have special privileges to visit.

So I appreciated all that the transport team did. They called me "mom." They brought him over for me to kiss him goodbye. They suggested that the nurses turn my bed around so I could watch them place my son in the incubator. And then they rolled out of the room and were gone.

Being a NICU Mom: My Story  -- What's it like to have a preemie in the NICU?  {posted @ Unremarkable Files}
Getting ready to go to Children's Hospital.

When I returned to my postpartum room, there was a grainy baby photo and a tiny powder blue knitted cap on the bedside table. "This was his hat," the nurse said, almost apologetically. "He didn't wear it for long, but he did wear it."

There was just so little they could do, so little they could say to make up for the fact that there was no baby in the room.

That night in the hospital was lonely, but I was starting to feel a lot of pain from the C-section, and it sort of consumed me. I'd planned on breastfeeding but I didn't even think about pumping milk until a nurse suggested it the next day.

When he'd first gone to the NICU, it looked pretty hopeful that he'd be back in a day or two. But the days inexplicably stretched into one another with not a whole lot changing. First he was intubated, and then he got a feeding line through his belly button, too.

Phillip would visit him in the NICU and bring back pictures and videos for me to look at. I called the NICU once or twice a day for an update from the nurses.

Being a NICU Mom: My Story  -- What's it like to have a preemie in the NICU?  {posted @ Unremarkable Files}
My second daughter meeting her baby brother for the first time, in the NICU.

On Day 3 of my hospital stay I got a "hall pass" to go visit him. As we were pulling into the parking garage at Children's, the NICU nurses called and asked for permission to place a new IV. I said okay, but since it wasn't urgent I asked if it could wait until after our visit.

Apparently the nurses didn't understand my request and started right after we hung up, so when we arrived they'd already set up a sterile field for placing the IV and we weren't allowed in.

Phillip pushed my wheelchar into a tiny waiting room beside the NICU for a half-hour, where we didn't say much. I was mad at pretty much everything and worried about my incision pain coming back. My hospital wasn't allowed to send any pain meds with me, so I had to be back before they ran out.

They finally called us in and we walked past rows of identical isolettes with tiny babies in them, most of them much tinier than my son. Another couple was standing over their daughter's isolette, talking with each other and smiling. I wondered how long their baby had been there.

We arrived just as they finished peeling the tape off of his old IV site. It hurt so he was thrashing around and opening his mouth in that all-too-familiar jaw-shaking newborn wail, but it was totally silent.

"Why isn't he making any sound?" I asked, panicked and horrified.

"It's because of his breathing tube," the nurse explained. She saw the heartbroken look on my face and quickly added, "But it's actually good that he's responding and crying. It means he's getting stronger."

I couldn't hold him, I couldn't comfort him, I couldn't do anything except watch him lay there crying when he couldn't even cry. I turned and collapsed into Phillip and cried until a nurse asked if we wanted to go out in the hallway for a minute.

It had been easier, less messy, when I was stuck in my hospital oohing and ahhing over the pictures Phillip brought in. You could filter out the reality of the NICU if you were just looking at a picture. At least I'd been doing something by pumping milk for him every 3 hours in my hospital, but what about being here? I was so helpless here to do anything at all.

After our visit, we started the drive back to my hospital. We hadn't made it far from Children's when my heart skipped a beat: I forgot my baby! It wasn't even a thought, really, but a feeling of pure fear as if I'd gotten home from grocery shopping and looked in the backseat to find that I'd left him sleeping in the cart in the parking lot.

Even though I knew he was in the hands of competent nurses who were frankly better equipped to take care of him than I was at this point, I couldn't help it. That same panic washed over me every time I left the NICU. With every visit I got better at shaking off the feeling, but it always hit me just the same.

My next visit to Children's was better. My son was five days old and I got to hold him for the first time since his birth. Even though it took two nurses to maneuver him into my arms and arrange all his cords and wires, it was the best day.

I had to ask, by the way, to hold my son. My #1 piece of advice to people with babies in the NICU is to be proactive. Ask. Ask if you can change their diaper. Ask if you can put on their baby clothes. Ask if you can hold them. I've found that on the whole, NICU nurses are an incredibly compassionate group who never forget that this routine day for them is not routine for you, but sometimes they might. And you might have to ask.

He was in the NICU for 10 days. Comparatively speaking we had it easy. Many infants stay much longer, and for him it was just a question of when he'd be coming home, not if. Gradually, he needed less and less oxygen and got off the breathing tube.

We were thrilled when we got the call saying he was ready to transfer back to our local hospital. And then a second call that the cardiologist wanted to do one more test in the morning just to be sure, and it would have to wait until tomorrow.

The next day, his transfer was delayed again because there was a snowstorm and the ambulance couldn't get through the roads. It was almost like someone was playing a practical joke on us.

After that they ran out of excuses to keep him (or so we joked,) and he was transferred. I moved back in to one of the postpartum rooms as a boarder, and most days stayed with him there around the clock.

He still had a feeding tube running to his stomach through his nose, and before he could come home he had to start eating on his own and gaining weight. The next week was a blur of feeding, weighing, feeding again, and weighing again. But a happier blur this time.

After 10 days in the NICU and 8 days in the special care nursery, we were finally ready to bring him home! I was at home with my toddler and my mother when the call finally came, and we drove to the hospital feeling so excited, like we were about to break someone out of jail who'd been wrongfully imprisoned there for way too long.

Just a few weeks ago, my son's favorite pacifier, the kind with the little stuffed animal attached to it, broke. It had been his "graduation gift" when we left the NICU, what seems like a lifetime ago.

He's a healthy toddler now, and walked over to me asking (in sign language) for me to fix it. In the end, we couldn't fix it, but then again he's getting too old for pacifiers and he's probably ready to graduate from those, too.

I stand amazed as I watch how far he's come and think about what future graduations lie beyond the horizon. Proud doesn't even begin to describe it.

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9 comments:

  1. This brought me to tears. Such a sweet and emotional story. Thanks for being willing to share it with the world to learn from. :)

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    1. Thanks for reading. It took a while to be able to write about it, but I think it's time.

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  2. Oh, Jenny, thank you for sharing about this heartbreaking, terrifying time. How thankful I am that you now have a healthy little guy to enjoy! We, too, had a nicu stay when our 5th full-term baby (also delivered by c-section) started having seizures on day 3 just as the nurses were processing our dismissal paperwork. Our situation was pretty different from yours but we now have a healthy beautiful 2 year old who has been off her meds and seizure free for 2 months.

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    1. Glad everything turned out for you, too! I hope everything keeps looking up.

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  3. I had almost the exact same experience with our second child. She was born at 38 weeks, via scheduled C-section. She too had the surfactant issue (I believe it's called Hylin-Membrane Disease but don't quote me) and ended up in the NICU for 8 days. They kept telling me she was technically a "premie" because of the lung thing, even though she weighed 8 pounds. Leaving the hospital without her was the hardest thing I've ever done. Fortunately she ended up being perfectly healthy and is now a 22-year-old college junior. Glad to hear your little guy is doing well!

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    1. Leaving empty-handed is the worst. They never mentioned the big scary name to me, I'll have to look that up. Glad both of our "preemie" stories had happy endings.

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  4. Fellow NICU mama here. My kiddo was in for 2 months and that was at least a month less than predicted. He was born at 29.5 weeks so we knew we were in for a long stay. (HELLP Syndrome sucks.)

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    1. I can only imagine how tiny he must have been. That must have been so hard! HELLP syndrome is no joke, I'm sure you felt like you won the lottery in reverse with a rare complication like that...

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  5. Oh wow I am so glad you posted about this! Don't worry, I'm not scared by it, but I also have placenta previa this pregnancy, and I may need a c- section (it's close so they're checking one more time at 36 weeks). Your story is super traumatic and as much as I pray we don't have to go through such a terrible time, it's nice to know that people DO recover from c-sections. Your nicu story though...wow. Such a scary time, and so overwhelming. Thanks for sharing!

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