It's OKAY not to be OKAY

This is a very difficult and sensitive subject for me to talk about. It has taken 530 days to finally find some words and courage to talk about it.

On April 10th, 2021 at 9:41pm I find myself sitting outside of OR 1 on the labor and delivery floor ready to scrub in feeling so many negative emotions. I was nervous, scared, sick to my stomach, and mostly worried about what was about to be the outcome.

Rewind 31 hours earlier, my wife’s OBGYN called to instruct us to quickly pack a bag and go to a hospital with a NICU. The morning of April 10th, the team of doctors from labor and delivery and the NICU dropped the gut wrenching news that Reese had to be delivered that night in order to have a chance to not only save Reese’s life, but my wife’s as well.

Preeclampsia and HELLP syndrome is no joke. Seeing my wife being poked over and over for tests, medication making her sick, the fear and stress I could see in her eyes was crushing my heart as I sat by her side in that hospital room. Within an hour of finding out my wife’s diagnosis, we got the news she also had IUGR (Intrauterine Growth Restriction). Reese wasn’t getting all the nutrients and the benefits from multiple steroid shots my wife got to help Reese’s developmental progress. I was trying to update our families with what was happening, but the only words I could get out was “My wife is sick, Reese is being delivered tonight”. I couldn’t find the courage and strength to say my wife was diagnosed with HELLP, IUGR, her organs were failing, high risk of seizures, and Reese hasn’t been getting all the proper nutrients for up to 3 weeks.

When a nurse got me to come into OR1 to scrub in, I could see a room filled with doctors, nurses, specialist, Reese’s future incubator, and my wife strapped down to the table. The next few minutes felt like a life time. I kept my head pressed against my wife’s as we both cried during it all. The night NICU team took Reese and myself into the room next to OR1 to continue chest compressions while they got her intubated, attached to her ventilator, leads, pulse ox, and other medical devices. The multiple nightmare like alarms going off with the 4-5 doctors, nurses, and respiratory therapists just standing there calmly doing there thing. I was jus frozen unable to ask questions about Reese, or my wife who was still in OR1 unsure of her condition.

Reese, her team, and I moved into the NICU wing where little did we know it would be our home for the next 110 days. I only had a few moments in her private room (which we found out later were reserved for the really sick babies) to see all 12 inches and 623 grams (1lb 6oz) for the first time up close before being pushed out by EKG, MRI, XRay, Ultrasound, and other specialty teams. I was taken back to my wife in her recovery room where she already looked better and less swollen. The next two days were hell for her because she wasn’t allowed to visit Reese due to her high blood pressure and seizure risks. I was running back and forth between my wife and Reese updating each other how their health was.

April 17th was discharge day from the hospital, but not for Reese. The look on my wife’s face being wheeled out of the hospital without Reese is forever engraved in my head. I was heartbroken. No parent should have to leave a hospital without their baby. Remember it was high peak of COVID so we were hybrid teaching at work with summer vacation within grasps. Going to work where I was near more people was the last thing I wanted to do. I wanted to be in the NICU with Reese and my wife as well as be around no one who could get me sick. I would be at the NICU by 6am before I had to leave for work. After work I would drive straight to the NICU and meet my wife there. We would be there till about 10pm every night, sometime later depending how Reese’s day was. ”The sounds of the NICU” is a real thing. All the different sounds we would hear from a loose lead, to a slow or fast heart rate, low O2, a Brady, oscillator, ventilator, bubble CPAP, or anything else… it sticks with you. Whenever I heard it, I would check the screen to see if it was Reese or another baby. By the end of our NICU stay I could easily tell if it was a false alarm or exactly the sound was for. There will never be a day when I go back to the doctors or hospital and not think it was a beep or alarm for Reese. Who knew beeping and alarms could haunt you more than your Monday work alarm going off. Since it was during the height of COVID, our family’s couldn’t come into the NICU to help support us or even meet Reese over this journey…. We were all alone in there battling with her…

The NICU is truly a roller coaster of emotions. Every time you think things are going great you will take 2-3 steps back. Throughout our stay we would be having great days and all of a sudden Reese would have a Brady episode (when her heart rate would drop below 50) because her undeveloped brain forgot to tell her to breathe. She also had to have multiple blood fusions she endured over her stay. During the first 6 weeks of Reese’s life her team was watching her Patent Ductus Arteriosus (PDA) which is suppose to close, but due to her prematurity it didn’t. We were in contact with UC Davis Children’s Hospital with THE heart specialist who does this specific procedure. Growing up I took plenty of rides in an ambulance for broken bones, but NOTHING will prepare you for seeing your child’s incubator being strapped onto a stretcher, pushed down the hall, and loaded into the back of an ambulance. To this day anytime I see an ambulance I have flashbacks to the heartbreak of seeing Reese being pushed into the back of an ambulance on her way to her first heart surgery.

The emotional pain of seeing Reese go back and forth between being intubation and to CPAP. In June the NICU staff pretty much kicked us out (for a mental break for being there every single day for 12+ hours a day) for our wedding anniversary dinner. When we returned, one of our primary nurses stopped us with panicked eyes. She informed us Reese silently aspirated and developed pneumonia. She was intubated again and put back on an oscillating machine to keep her lungs from collapsing. We were crushed. We had our first date night since Reese was born and we returned to her fighting for her life. We didn’t leave that night until after midnight and I was back in the NICU at 5:30am. It wasn’t until we were about to graduate from the NICU when our delivery and main night respiratory therapist told me he was the one who helped Reese that night and he was afraid to leave his shift or even her side because he honestly didn’t know if she would make it.

Being in the NICU for 110 days all day every day you see and hear everything going on. You become close with your NICU team and staff. By my wife’s 20th week of pregnancy, me being me, I had Reese’s crib, changing station, and nursery all painted and set up. You also see other babies and families come and go. Yes I’m always so happy to see other NICU babies go home, but it also sucks and was always so hard see ANOTHER baby get to go home while ours kept fighting for her life. It was especially hard hearing the family we were sharing a pod with (bigger room with 2-3 babies in it) getting discharged within next few days and didn’t have a crib or even a car seat…I would always question myself why does that baby get to go home to an unprepared family while we have all her needs ready for her and we weren’t going home.

“Don’t worry the pain stops when you graduate the NICU”. Yeah that’s totally false. Yes, it truly was amazing being told it’s graduation week, but it then it sinks it.. wow I’m responsible for a itty bitty medically fragile baby. Navigating her medical grade at home pulse ox (monitored her O2 levels and heart beat), 50 feet of oxygen tubing running up and down the stairs, all her special medications, and of course getting her to all her specialty doctor appointments with all that gear… The trips to the ER because she out grew her medicine dose and her O2 levels were dropping or the constant vomiting because of her reflux condition. I can’t forget about the amount of sleep we lost from either her pulse ox either false alarming because the sensor came lose or waking up because we needed to make sure she was still breathing. The pulse ox alarms are forever engraved into my brain.

“Oh wow Reese is off oxygen! She’s like a normal baby”. “At least she didn’t have X, Y, or Z in the NICU” Those always hurts… A NICU baby is a NICU baby, doesn’t matter how minimal or severe. What is a normal baby? Yeah visually she looks “normal” now, but she still has a “baby IEP”, heart specialist tracking her every 3-4 months to see if she needs a second heart surgery, physical therapist once a week, and an ENT specialist from her mouth and first of two eye surgeries. Running specialist to specialist is never ending because you want the best for your kid. There is no such thing as a “normal” kid. Every kid out there is unique and need support in their own ways. Some more than others and that’s okay.

Iv bottles up so many awful and terrifying feelings from all this. It was hard to express them. I needed to be there for my wife while she was sick, being her rock, and holding it together when deep inside I wanted to curl up in the corner and cry. I needed to show our family positivity and that everything was going to be okay even though I didn’t know if Reese was going to survive during the C-Section and NICU or even if my wife was going to make it out of OR1 or the hospital. I still have those what if thoughts… what if Reese didn’t? What if my wife didn’t? What if neither of them did?!? Even though ALL our NICU staff at MSJ were so amazing and creating life long bonds and friendship, the NICU isn’t a place you want to go. I didn’t even know what it was until I was there. The sounds, the procedures, the hours of sitting there wishing of holding Reese but unable to because she was too fragile and sick… the slam of the ambulance doors, the medical equipment in the NICU and at home… seeing old photos pop up of our time in the NICU or at home while she was still super itty bitty on all her oxygen and pulse ox…. there isn’t a day in my life I don’t have horrifying flashbacks to the nightmare we lived. It’s hard to be strong when your love ones are lying there so sick… just remember… it’s OKAY not to be OKAY…