“Even though I walk through the valley of the shadow of death,

I will fear no evil, for you are with me; your rod and your staff comfort me.”

-Psalm 23:4

***

If you thought Part 1 of our NICU journey was sad, let me prepare you for what you’re about to read next: before things got better, they got worse. There were instances when we thought JR would not make it. We have known babies that died.

The NICU can be an AWFUL place — a place of tremendous loss, aching sadness, and death; of hopes and dreams and of real lives — but it can also be a place of miracles, friendships and sometimes even laughter, though it’s never just those things. Death is always lurking there, and the good of it, comes right alongside the really, really bad.

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It was Fourth of July and everything had been going fairly well. We’d weathered almost a full month in the NICU at this point, and every one of those days was a monumental victory in our minds.

I’d baked a cake for the nurses and recreated the American flag on top with blueberries and strawberries to thank them for working during the holiday. (I always needed things to do to pass the time at home when I was away from JR.) I remember while baking, wondering if we could see fireworks from the NICU. Didn’t really matter, long as I got to hold him.

I’d had my first hold around 8 days of life with nurse Connie.

She gave us a head’s up the night before that if all looked well – and only, ONLY! – if all looked well, she’d allow me to hold JR the following night. Connie talked about how good it would be for JR (and for me) to begin “Kangaroo Care,” a familiar phrase in the NICU to describe parent-child skin-to-skin. Sometimes she said, when those little bodies wanted to give up, the warm/familiar beat of a loving heart willed them to hold on.

I’d read about this on Blessings from Benton, the blog I followed during our time in the NICU. It was Christmas when doctors said Benton wouldn’t make it but a long night of skin-to-skin with his mom saved his life. In Part 1 of this series I mentioned how hard it was to read Benton’s blog at first, but later it became a source of water in a barren dessert. Whenever we faced a new medical hurdle: edema, high blood pressure, extubation — things nobody in our lives would understand or have even heard of! — I’d check how Benton got it through and then will/pray that JR would do the same.

When the day shift switched over to night and I knew nurse Connie would have JR, I eagerly headed to the NICU. I remember it like it was yesterday, I was so excited but was also trying to stay calm and open to the possibility it might not happen. Whatever was best for him.

Aaron brought the camcorder and started recording from the moment we walked in the hospital — I smiled and giggled the whole way up the elevator and down the hall to the NICU; this was it. Today was the day! And I don’t think I’d cracked a smile since before JR’s birth.

When we walked in, we saw that Connie had setup a rocking chair with a piece of white paper taped to it that said “Mommy’s First Cuddle” and my heart melted. I couldn’t believe it was finally happening. I was so thrilled, but nervous! I remember pacing around his isolate, applying sanitizer again and again and again.

Connie gave me a run down of all JR’s cords – the source of them – and how to maneuver them when I lifted him. She thought it was safer for me to lift and place him on my chest rather than her to lift and place him there, and I was game. I could do this!

I was nervous, of course – when the lid of the isolate raised up and away. JR was so tiny; smaller than a football and he looked so fragile. I did just as Connie instructed and lifted JR from his back and bottom using two hands. He was light and his little limbs flailed all around which prompted me to assure him “it’s ok, it’s ok, it’s ok!”

I sat down in the rocker placed behind me and tucked him in the nook of my arm. Connie swooped down and fiddled with the wires and moved the blanket that separated us. That’s when I felt it—the skin to skin.

Then the ugly tears came — you bet they did!

He was so warm and my eyes welled right up. Connie said “doesn’t that feel good?” and I remember saying “yes, yes it does” but not quite getting the words out. It was so spectacular. Something about holding your child for the first time – seeing them for the for first time outside your womb. It was a completely new and amazing experience.

As I spoke to JR I could see him try to lift his eyelids and I’ll never forget that. His eyes would remain fused shut for several more weeks but the fact that he was trying to open them, I knew he knew me, my voice or something. I was familiar, and we were finally reunited.

I settled back into the rocking chair, cradling JR and Connie covered us with warm blankets (at the time, he wasn’t able to maintain his body temperature). I snuggled him close and stared down at him, and any sense of time slipped away. I sat there for hours. I mean HOURS. And it was wonderful. Aaron was so patient, he didn’t want to rush me.

Connie setup a screen to give us some privacy and she kept an eye on his monitor from a far. I can’t remember putting him back in the isolate or much else from that night except that I felt at peace.

It was the most relaxing/calming/natural, most-needed thing you could do for a NICU mom: to have her hold her baby. And that feeling persisted every time I held JR. It was a release of stress, a gift of peace, a treasure not even looming death could take from us.

Peaks & Valleys: Hitting Our First NICU Low

Fast forward to Fourth of July and I’d had a few more holds, but not many. I was always anxious for more.

We had a new nurse, Adele and she was really nice. She seemed serious; very serious about JR’s care, but nice. We came in that evening, anticipating we’d get to hold him, but she warned it wasn’t looking good– JR was having a bit of a rough night.

She said she’d be willing to lower the isolate and open it though so we could peer in. This was the first time we’d done this (we always looked in through the glass), and it turned out to be quite different. Seeing JR in the flesh was exciting. We felt like we could reach right out and touch him, which wasn’t always the case. We could speak more softly and have confidence he could hear us by seeing his physical reaction (eyebrows raising). It was liberating and yet, scary seeing how fragile he was.

Also seeing the reality of the IVs piercing his skin and how puffy he was at the time — retaining fluid — was frightening. Yet somehow we looked past all that and saw this amazing human life and the promise of years’ worth of memory making: diapers, giggles, and stroller walks.

That night JR tried again to open his eyes and we sat by with patience, encouraging him and saying “hello there!” and “we love you” from our seat by his bed. He was too puffy to really open them, though and this should have been a sign to us of the trouble to come.

When we left, we felt worried but we’d come to know and live with worry quite well. Worry was like a third wheel in our relationship now, a companion that followed us around — especially in/out of the NICU. We’d spend hours at home discussing medical tests and terms we didn’t quite understand to figure out what might be causing JR’s issues.

It’s a blur when I look back on it but each hurdle was so real and so tangible then. People will tell you the NICU is a rollercoaster and it’s so true. There are these incredible highs, like holding your baby, immediately followed by bouts of gut-wrenching worry about your child’s well-being, and we were about to experience our first big dip.

Almost Losing Him, the First Time

That Sunday we went to church and the NICU immediately after. My plan was to read JR some books, but he was too puffy. He was also on a special ventilator that let out a loud vibrating sound and I knew he couldn’t hear me. I had an bad feeling that day, things weren’t looking good and I couldn’t concentrate. I began to feel a sense of panic and worry come over me; I couldn’t read. Then suddenly, I started to cry.

This certainly wouldn’t be my first (or last) cry in the NICU but it was more than a few streaming tears.  I felt like the situation was becoming direr — there was nothing we could do — and sadness was threatening to swallow me whole.

I tried leaving the NICU and taking a break in the waiting room, but the tears kept coming. A nurse came by to try to console me but I knew something was wrong and I couldn’t pull myself together.

We reluctantly left, and I cried all the way to the car. I remember it being this bright and sunny day – I was in church clothes — and there were cars and people moving about. I was sick with worry and the chaos of every day life going about around us was crushing — our baby might not make it. He might DIE. And who were all these people and this life without him? They were nothing. I was nothing. The thoughts were overwhelming.

When we got home, I literally got on my hands and knees by my bed. I cried into my Bible and read a few passages to try to calm myself. I didn’t know what else to do.

At this point Aaron was past crying and past praying, too. I think it was really difficult for him to not be able to console me or really, do anything at all to help the situation.

Often times texting family helped but there were so many problems with JR at the moment (his kidneys were failing), it was impossible to convey it all through text and I was in no condition to talk about it.

I finally laid across the bed — I couldn’t bring myself to do anything but sleep to escape the worry. When I woke up it was dark outside. I felt a little better and checked my email, which is when I noticed a friend from Bible Study sent over a prayer for JR and a reference to Psalm 23:

The Lord is my shepherd; there is nothing I lack. In green pastures he makes me lie down; to still waters he leads me; he restores my soul. He guides me along right paths for the sake of His name. Even though I walk through the valley of the shadow of death, I will fear no evil, for you are with me; your rod and your staff comfort me.

I repeated the verse a few times over and said my own prayer before heading back to the hospital. Aaron wasn’t home, he’d headed to the NICU already. Sometimes I wanted to stay later than him so we’d stagger our visits. Once I got myself together and left the house, I started to feel excited. I had a new onesie for JR (premie size) that said “our little hero” on the front. He wasn’t wearing clothes yet but I brought it as a good luck charm.

As I walked in the hospital, I received a text from Aaron that said, ‘head’s up something’s going on.’ Then, when I walked in, I saw one of the doctors and Aaron by JR’s bedside.  They looked visibly concerned and the doctor told me to sit down.

I immediately started shaking my head “no,” and felt my whole body resist what was happening, as the doctor began to explain the situation and ‘last-ditch efforts.’ I remember pointing to her and bolding declaring, “don’t you give up on him,” and then to everyone around us — as the respiratory therapists and nurses circled in to begin a series of interventions — I said, “don’t any of you give up on him yet.”

I pulled the onesie out of my purse and placed it face-down on top of his isolate. Meanwhile, another nurse who we’d grown close to came over – we were shocked to see her (what are you doing here?), but she’d picked up a shift at the last minute and heard JR wasn’t doing well. We all hugged and cried. It felt like something horrible was happening and all I could think was no, not like this, not now.

I can’t even type about it today with tearing up. It felt so unfair to have come this far — a month — and be robbed of our son now. They shuffled Aaron and me to this family room off to the side and I’ll never forget seeing Aaron break down. It was one of the first and only times I’ve seen him literally sob. He just broke. We both did. Was it time to let go?

Then something came up for me. It sounds crazy, but that Psalm came to mind. I couldn’t remember the whole thing but I centered on the words, “I will not be afraid.”

I began repeating it over and over, first to myself and then to Aaron. I remember  feeling suddenly energized. Not at all like everything would be OK (I was terrified) but that I could face this – I was going to face this if JR had to and be by his side, despite my fear.

To this day when I think back on the NICU, this sentiment comes up — this act of defying fear in the name of love. There were so many times you’d want to just run out of there — the pain and worry being too much bear, but as a mom, you don’t run. You plant your feet and dig in your heels. You look death in the face and say, if you’re going to take my baby it’s going to be from out of my arms.

That night, I sat by JR’s bed for several hours. I kept my head down to avoid seeing the monitors because his blood pressure was bottoming out and his rate of breathing was in the 70s (it should be in the 90s). Awful thoughts arose as I sat there: wondering if you had a funeral for babies this small.

They administered several blood and palette transfusions, gave him rescue meds, and switched ventilators to try to stabilize his breathing, but nothing was making an immediate difference. Then finally, around 4am, his vitals started to improve and the doctors drew a blood gas to measure the levels of oxygen and carbon dioxide in his blood — up to this point they’d been really bad.

While we waited Aaron decided to run home and pack us an overnight bag and some food. His timing was perfect – as soon he got back – the whole floor burst into applause when they announced the results of JR’s blood gas — he was improving! At that point the doctor looked at us and said “Now go to bed,” and sent us to the family room down the hall.

This was our first overnight since JR’s birth and the room was this awful, old vacant space with a small TV and two hospital beds. We sat there eating doritos and peanut butter and jelly sandwiches just in awe of miraculous comeback we’d just witnessed. We were relieved. We’d made it. We’d made it through another night.

Almost Losing Him, the Second Time

Unfortunately, that wasn’t our last brush with death and the next event felt far more traumatizing.

It’s something that still haunts me to this day because there was no time for reciting verses or praying by JR’s bedside — the NICU just called and said, “come as fast as you can, we don’t know if he’s going to make it.”

I was back to work by then (it was August; two months into the NICU) and my employer had given me free reign to work from the hospital or home—wherever I felt I needed to be. That day, I was working from home but had made an early morning trip to the NICU to check on JR.

They’d just moved his isolate to the back bay by a window, which felt like a tremendous step in the right direction. We were also working to wean his ventilator support (intentionally) to prepare him for extubation, which is a huge deal in the NICU – it’s when your son or daughter is taken off the ventilator and given the opportunity to breath on their own. Extubations don’t always work and in fact, JR’s first attempt only lasted 6 days. He came down with an infection which he couldn’t manage and breath on his own, so he went back on the ventilator for about a month.

Before you even think to take a child off a ventilator there’s slow and delicate dance that the doctors do with the ventilator system: teetering between the amount of breaths and strength of breaths provided to slowly prepare the child to breath on his own.

The doctors are artists in this way and masterfully tweak the numbers just slowly and safely enough to lower support levels. This is all while also beginning intravenous feeds, meaning allowing JR to take milk by mouth; up until this point he was receiving all his nutrients by IV.

The journey to independent breathing and eating is excruciatingly slow as there’s a number of complications and risks along the way. On this particular day, we witnessed one of those risks pan out and as a result, JR almost died.

That morning when I went by the NICU I remember feeling confident about the direction where we were headed. We had this great new spot – near a window! – and it was bright and sunnier than ever before.

Except I noticed something – I saw something, or thought I did — some liquid come up JR’s breathing tube. That was odd, and obviously kind of scary. I alerted the nurse, as I knew were were walking the eating-and-breathing tightrope, but she told me he was fine; he probably just needed suctioning.

It was August so we’d been in the NICU for 2+ months and had picked up on another delicate dance happening among doctors, nurses and parents always debating discussing concerns and the next course of action. I decided not to press the nurse — I’d picked enough battles in the NICU and figured she was probably right.

JR looked great basking in the new sunlight from his window so I decided to head home. I took this photo that morning:

About 2 hours later the NICU called.

It was never a good feeling to see that number pop up on my phone and as I answered, there’s really no way to describe what happened next except to say I panicked.

They panicked, saying, Hurry. Come now. We don’t know if he’s going to make it.

The scene plays out in my mind so vividly today – running around my house, literally screaming, grabbing my purse, calling Aaron and running out the door. I probably should have died on the way to the hospital, I drove so fast and I was erratic — shaking and screaming out “No! Don’t you do it! Don’t you give up,” as if he could hear me.

I literally RAN through the doors of the NICU in tears and panic, immediately looking over to our new spot by the window.

Everyone — literally everyone — was standing around JR’s bed, a swarm of at least six doctors and nurses.

I remember running over to him and the attending doctor catching me with both arms. She stopped me in my tracks, just a few feet from the isolate and said, “he’s OK. He’s going to be OK” as she slowly walked me over to him.

JR looked awful, he was pale and lifeless.

The doctor told me, “he scared us all” and then, turned to everyone standing around and told them to “shoo, go now,” as I stood there and sobbed over him.

Aaron came running in moments later, the look of panic and terror on his face. I have no idea how he got there so fast, all the way from Maryland but he was shaking by the time he arrived.

The doctor and social worker shuffled us over to the family room (same one as mentioned before) where they explained that JR had some of kind of asthma of attack, and at 100% ventilation, he could not breath.

Chest compressions.

Rescue meds.

Somehow they revived him.

The thought of it still kills me today… to think he slipped away, even for a moment. I always wished I’d never left that morning.

That afternoon I walked out of the NICU with a new, more real fear in my heart. I needed to get out of there but didn’t want to leave the hospital, just in case it happened again. I walked around sort of aimlessly, and I remember running into a coworker. She immediately knew something was wrong (I probably completely wrecked) and she walked me outside and sat next to me; not asking questions or probing at all. She was great.

Finally she asked if I needed a ride home, if I was OK. I just remember feeling like I didn’t know where to go, I didn’t know what to do. I felt so lost, it was like having the wind knocked out of you. I stuck around through shift-change, staying close by but not being in the NICU. I don’t remember the next few days very well, but from what Aaron tells me, they were rough.

JR was doing OK but I could hardly stand to go into the NICU; the barrage of doctors and information; the alarms and every little thing I saw and heard terrified me. But yet, I didn’t want to leave for fear something bad would happen. I was stuck and thus, would find myself wandering the halls, sleeping in the family lounge, or sometimes, hiding out in one of the offices that belonged to my department and working to get my mind off things.

Friendship & Laughter Lit the Dim Road

People were a saving grace: the nurses, doctors, the other families; they kept me going. I’d distract myself inside the NICU with small talk among the nurses: about their lives, the weather and current events. Nurse Tacie was one of the first to get me to stick around awhile, by introducing JR to a pacy (how sweet!) and every few minutes, when I’d panic, she’d say, “wait, wait, see he’s fine,” and I’d be relieved to watch his numbers rebound.

We’d see other parents at all times of day, too, all over the hospital (in the pump room, waiting area or cafeteria) and always check-in with each other.

In the evenings, we’d take turns in the waiting area – drinking the worst tasting coffee at 11/12 at night! – chatting it up about this and that. It was such a reprieve. We all faced difficulties, nobody was immune. We all had good and bad days, and so the celebrations and commiseration would ebb and flow.

Most of us were mulling over big decisions with regard to potential surgeries and adverse outcomes. The typical “why me/why us” conversation popped up now and again, with no new answers ever on the horizon.

It sounds crazy but I had some of the best laughs of my life in that little corridor. Sure, we cried at times. We sat with our heads down and sulked; we threw things in anger; we whispered among family/friends when they visited, but in those late night hours we’d try to make each other laugh. We’d share crazy stories, poke fun at quirky nurses, and we’d reminisce about our insane birth stories, and how we ended up here — some babies were flown in from other facilities.

One of my favorite conversations was about the day we’d leave: we’d fantasize snatching up our babies and running out the door — pointing to the staff “eff you, eff you, you’re cool!” and zipping out of the building. It was all we could to hold it together during those long nights and I am truly thankful for the friendships we made there.

Sometimes we turned to other parents for advice too. We met a couple who had twins almost to term, but had a 27-weeker two years prior. They offered thier phone number and right before we had our first “family meeting” with the attending doctor, we called them for advice. We still keep in touch with them today. (Hi Jessica!)

There was this soft spot in your heart for these other families and especially their kids. You’d always want to lend an encouraging/affirming word about them: “they’ll be fine,” “you’re doing the right thing,” “s/he is so cute!” It came naturally. Thier kids were your kid.

During the next scare – probably a month later – I had another breakdown, this time running out of the NICU in front of a waiting room full of families. I’m almost ashamed to admit that today but this incident took me by surprise and I didn’t know how much more I could take.

JR came down with an infection and when I went by after work, the doctors cornered me: things weren’t looking good. My stepmother was there to visit, which added an element of stress; it was always really hard to juggle a visitor when things weren’t going well. Another complicating factor was our nurse — he wasn’t my favorite. I didn’t think he was watching JR close enough and given JR’s fragile state, I needed someone with him we could trust.

That afternoon, during a desaturation – when JR’s oxygen levels dipped – I freaked and ran out of the NICU. Desaturations happened a lot but something about this left me uneasy and I hid in the family bathroom, crying.

Aaron followed after me but it was clear I couldn’t go back in there; I was a wreck. He spoke with the doctors and they told us to go home — they would call us if there was any new news.

We hated leaving but we’d come to trust the doctors and knew they wouldn’t let us leave if it was dire. We also knew there was nothing we could do there except wait around and worry ourselves over every blip on the monitor.

We went home only to find out the next morning that one of the couples who’d we come to know well had sat by JR’s bedside until the wee hours of the morning (having seen me visibly upset) to make sure he was well watched over that night.

I’ll never forget that. We love you, Chris & Prune!

Two Steps Forward, One Step Back

Despite the harrowing days and nights, there was a lot of this type of thing to be thankful for in the NICU. Little things that we celebrated with grandeur, like reaching that first week or month of life; both times we brought in a balloon and sang JR happy birthday. Then there was the first time JR opened his eyes. His first outfit (with nurse Angie, who’d become his “NICU mama”) and the first time he got to go in the mamaroo

We celebrated when all his IVs came out the first time — even though he’d get poked again eventually.

Then we had our first family bath.

And an open crib: that was one of the best.

Every little thing was celebrated with so much hope and pride, and rightfully so. We’d fought to get to each and every one of these milestones and we weren’t going to take them for granted. Even pulling a chair up to his crib and being able to lay a hand on JR while reading him a story was so amazing. Each step was one step closer to home.

One of my most treasured memories was the first time we took JR outside.

At four months of life, he breathed his first breath of fresh air and it was the most beautiful sunny, fall day just like it is today.

The NICU surprised us, calling that morning and telling us to bring in a stroller to take JR outside. We hung up the phone in shock and then suddenly realized, we didn’t have a stroller!! We immediately went to by one, and then headed straight to the NICU to take him outside.

This was another victory I’d read about on Blessing from Benton and it was such a great reference to have in the back of my mind because I knew he went home not long after.

Like Benton, JR was still on oxygen at the time, but just brought an oxygen tank with us. The real worry was that he wouldn’t be connected to the monitors so we wouldn’t know how well he was breathing, but we trusted the doctors wouldn’t have let us do this if he wasn’t ready.

First Breath of Fresh Air & a Turning Point

It was the most beautiful day, ya’ll.

There were planes flying across this bright blue sky and it was sunny and cool.

We snapped 100 photos and even caught JR smile!

We were only out there for about 15 minutes but it was perfect.

The doctors came with us but walked away to give us a chance to be together, just the three of us. Thinking back on it, we’d never been together, just the three of us. This was the start of something new. A window into the next chapter.

The courtyard was the same one I’d sat in that day I rushed to the hospital when JR almost didn’t make it but the sentiment – even the air – was so different. We were happy now. We were safe. The clouds parted and gave us a look at life outside the NICU.

The finish line was near.

–

This is Part II in a series about my son, JR who was born 16 weeks early weighing 1 lb 12 ounces. He spent five months in neonatal intensive care and is lucky to be alive today. We are so very VERY blessed by him and his triumphant story. Thank you for reading it!

• JR’s Story: Part 1: An Early Arrival

• JR’s Story: The NICU – Part I