This is a longer message and deals with a situation that happened during Tommy’s third day. It deals with me and how I processed everything when Tommy was born and doesn’t include any news about Tommy. Due to length, emotional nature and the usage of minor vulgarity, I decided to make it opt-in.
Back on October 12, 2013, I wrote:
Something happened last night and this morning that, well, just decimated me emotionally. I hadn’t really felt the whole impact of what has happened, which I thought was weird. Two things happened to open the floodgates and I’ll compose a note as to what happened and why it was significant, but I need more time. It’s important I share it if only to demonstrate how God sometimes works. If you don’t believe in God or a higher power, think of it as the universe realigning things or brain chemistry ensuring someone remains emotionally healthy.
The Unit Mate
Joshua was much sicker than David. Back in 1987, the NICU was one large room, which meant you learned about the babies next to you. David’s mate was Joshua and his parents were John and Dacia Reinke. John was studying to be a minister and Dacia was very talkative. They were a little older than us, but not by much, and we became friends. Attending support meetings together, lunches and even borrowing their new fangled camcorder technology to video us holding David, our lives moved closer. When medical tests would happen it seemed like Joshua always had something wrong, while David passed with flying colors. Intrinsically, you know it’s wrong to look upon other’s misfortunes and compare, but I remember thinking, “David isn’t the sickest baby.”
John and Dacia were marvelous people and took the news about health setbacks in stride turning to God. You learn early on that the time in the NICU is a long river with wide bends and curves. Sometimes you go with the current, sometimes against. Regardless, you are pushed.
Sailing Through
David was a relatively healthy preemie. He had a couple of infections, but there weren’t any major issues. His birth was a complete surprise to us due to how early he came and we were lucky to happen to deliver at St. John’s (now Mercy). Prior to the birth, I had no idea what an NICU was or that they even existed. It seemed to be a place of cutting edge technology and young, very young doctors. One of the doctors, Dr. Maurer, was the one who had grown the NICU to its stature. He was young, handsome, intelligent and had an almost mullet of brown hair, so he looked like Jesus. I remember thinking how confident he was when making decisions about care and his deliberate method of treating preemies as “real” babies. As we approached the 2.5 month mark, we really turned up the planning of our first child coming home to our apartment. Everything was decorated including an adorable wood cut of a baseball adorned with DAVID in paint. It hung on his bedroom door in anticipation of catching, throwing and dreaming.
The Stairs
The former NICU unit had easy access to a stairwell that led to an exit right near the cafeteria; convenient for running down and getting something to eat and drink. In the middle of the night, we received a call from the NICU to come to the hospital. They explained David was sick and Dr. Maurer wanted to talk to us. Listen, we were young, so at the time we didn’t have an appreciation for what the call meant and I do recall us thinking this was somewhat normal.
We arrived at the hospital and Dr. Maurer explained to us that David was having trouble breathing. This was weird since David’s need for a ventilator had come and gone a while back. He explained some more things, but it was such a crush of information I cannot remember it all. I do remember Missy and I went down to the cafeteria to get Pepsis, because we knew we would be there all night. On our way back up to the unit I remember us talking about what was happening and realizing almost simultaneously that our son was in critical trouble.
At the top of the stairs I remember saying to Missy, “It means he could die.”
The Time Gets Longer
I don’t remember every minute of the night and I hate I cannot.
What I do remember between the conversation on the stairs and the end was Dr. Maurer working relentlessly to save David. Whenever I tell people about that night, it seems the time Dr. Maurer worked to save David grows longer. Still, I know it was more than two hours that Dr. Maurer stood there with a team of people working on David.
The last hour was Dr. Maurer and a respiratory technician. Dr. Maurer trying to get David to breathe by using a manual air bag. It looked like Jesus himself was working on my son.
Over and over and over again. Push. Inflate. Push. Inflate. David’s chest rising and falling. The respiratory technician told Dr. Maurer there wasn’t anything left to do, there was some discussion. Dr. Maurer continued pushing and inflating, but finally stopped. He didn’t have the answer and was out of options.
When the deflated air bag laid on the bed a part of my being died and the composition of me as a person was forever altered.
Shutting Out
After David passed, I did my best to shut out everything and everyone related to him outside of my family. John and Dacia, the wonderful people who experienced the NICU with us, participated in David’s service and wrote us beautiful notes of love were the first to go. I didn’t want anything to do with them.
Mercy was a place to be avoided at all costs. The times I did have to go, I did not go to the second floor where the NICU was located.
Still, I was confused. What happened? Why did my son who was doing so well die? On the night it happened Dr. Maurer was confused. In an effort to get some closure I wrote him a letter asking if a determination had been made and I was unsure if we would hear from him. He replied.
The letter is attached (click on thumbnails above to get a larger view) and the two relevant portions to this story are:
You mentioned being confused the night that David died. I can assure you we all shared that feeling as I still do not really understand what triggered his sudden deterioration.
and
As I said, I still feel confused and certainly saddened by David’s death. I wish we could give you a better explanation.
The expert, the most knowledgable preemie doctor in St. Louis still had no answers.
And that was that.
The Second Night
Cassie and Shannon passed through the NICU in different decades, but they had the same quality of care from the the medical team. I went out of my way to avoid Dr. Maurer and our interaction with him for both kids was limited to saying “hello” in the hallway. My memory has Dr. Chou as Cassie’s champion and Dr. Klesch as Shannon’s. Missy might tell you different since she has a much better memory, but Dr. Maurer was never involved heavily with the care of Cassie or Shannon.
Imagine my horror when Dr. Maurer comes walking in the second night of Tommy’s life. It was quiet and dark in the room with just the bilirubin lights providing soft glow, Missy and I just chatting on the couch in the pod when Dr. Jesus, albeit older and gray, comes in. I had no where to go. I couldn’t look away. I couldn’t cry, I couldn’t leave. I had to sit there looking at and talking with him.
Please, don’t misunderstand. I do not blame Dr. Maurer for David’s death in any way. None. I admire and respect the man for devoting his life to saving miracles like Cassie and Shannon. I just preferred his devotion is with another baby.
No such luck this time. Dr. Maurer was going to treat Tommy and here he was in front of me. The cold sweat on my neck tickled at first, but by the time it wound its way to my crack it was the icy touch of fear.
My lip started quivering and I dug my nails into my hand. I was not going to cry. Why would I?
Sure, I had a preemie son at about the same gestational age as my other son who didn’t make it. Here is the doctor who couldn’t save my son sitting here talking to me about my new son. Nothing at all feels familiar or overwhelming about this at all. Nothing. Stop. Push harder. Nod. Hold Missy’s hand. Grip Missy’s hand. Nod. It’s a different kid. You have to go. Missy needs you. Crying doesn’t help. Nod more. Shit just happens. Stop now. Stop it now. God isn’t going to do this to you again.
I remember nothing about what Dr. Maurer said, but I didn’t cry, freak out or run away.
And that was that.
LAUNDRY
When Cassie was born I bawled, let it all out and moved on. Shannon was the same way and I still remember calling my Dad, bawling for 5 minutes and it was over. I didn’t cry with Tommy, even when Dr. Maurer came by to visit us. The day after Dr Maurer visited was big for us. We had family from out of town coming to visit, so we wanted to get ready, as much as you can if you’re in the hospital. We decided to hustle down to the NICU and spend some time visiting with Tommy before the family arrived.
Missy grabbed a bunch of clothes for me to wash in the parent’s lounge. The parent’s lounge is a large area with showers, laundry, games, TV, food and a nice amount of amenities. There is a large bar counter top with stools you can use for board games, eating, reading, etc. It makes prolonged visits much nicer.
After arriving in the NICU, Missy dispatched me to check on the price of the laundry. She thought it was free, I thought it cost.
I headed down to the parent’s lounge and checked the laundry. Missy was right, no cost, and after 26 years I should know better. For some reason I do not know, I stopped to look at a binder on the bar with the title NICU GUESTBOOK. I flipped open the binder, looked at the first page and immediately without hesitation turned to the second.
Joshua
Reinke born
23 weeks 1 1/2 pounds
March 28, 1987
Now 25 – At seminary
thank God!
praying for All!
I sprinted out of the lounge and back Tommy’s room. Push it down. Keep it down. Don’t look at Missy. Don’t look at Tommy. Sit.
I couldn’t.
Tossing my phone to Missy, I left panicked. Outside the unit my parents are walking down the corridor. I don’t want to see them. They were there the night David passed. This has to stop. Push harder. I find a bathroom, lock myself in the dark and proceed to breakdown. Time sort of stopped when everything came back all at once punctuated by Tommy’s arrival.
Sharing
I composed, dried and convinced myself I could contain it. The evidence was great that this was just a big coincidence, but I couldn’t shake the feeling Someone was prodding me. Why else would I look at the guest book? Why would I look at the second page?
Back into the room, happy face for Mom and Dad. Missy was confused as to what happened, but with the visitors she was preoccupied. I knew what started needed to finish and I needed support, so I asked my Dad to come down to the lounge. As we walked down I told him the story of the laundry, explained the NICU guest book and when we arrived, asked him to look at the second page. I couldn’t stay there, so I left the lounge. Within moments, Dad came out of the lounge emotional and we hugged each other tight. Explanation of who the note referred to wasn’t necessary nor of why I felt the way I did. He is a father, my father and understood.
I believe God knew the time had come for me to let go, which is why the NICU guestbook was on the counter, why I flipped to the second page and the timing of my Dad’s visit. The hugging and crying lasted a while with all the pent up emotion, disappointment and fear washing away with the tears.
And that was that.
My Drip
I’ve explained to Dave, my brother in law, that with Cassie and Shannon all my fear was upfront when the birth occurred and then dwindled as the time they spent in the hospital grew. With Tommy it’s the opposite. I had no initial fear, but as the days go by fear drips and accumulates. Shaking, turning I get rid of it, but it still builds and has to be emptied daily.
It builds quickest when I am alone with Tommy in the room and realize I cannot control what happens to him more than having him at Mercy. It empties fastest when I awaken in the morning and realize I’ve made it through the night without a phone call.
My logical mind tells me that Tommy is different than David. Tommy has the benefits of almost 3 more decades of world class neonatal experience and advanced technology and what happened to David was a medical mystery. But. My emotional mind is constantly searching out common threads in treatment or achievements in growth to correlate between my sons.
Last week I shared the news that the doctors are looking at Tommy coming home on Christmas. Tommy will be 76 days old when he comes home on Christmas.
David lived 76 days.
I love you all and thank you for reading.