My NICU Journey…67 Days in the NICU

My NICU journey began the same way that it does for most NICU dads. My wife was in the hospital, recovering from a C-section; my new baby was in the NICU, after being born at 27 weeks; our oldest daughter was at my parents house with our dog, trying to enjoy her first week of summer break. Now began what I like to call “The NICU Dad Shuffle”. Where do I go? Who do I spend time with first? Who needs me the most? How long can I go without sleep? Or a shower? These were all questions that would become my daily routine.
My wife was in the hospital we delivered in, recovering. She couldn’t walk. She hadn’t really seen our baby yet, much less hold or touch her. We were so lucky that my sister-in-law had dropped everything and came down as soon as everything started. I can’t imagine what those first days would have been like without her. She was able to stay with my wife and help during her time in the hospital. Never question the love of a mother. My wife convinced the doctors to release her after only two days in the hospital!
It was the first day of summer break for our then nine-year old. She and I had planned on swimming, swimming, and more swimming all week. Now she was stuck at Grandma’s house, with no real clue of what was going on or how long she was going to be there. All she knew was that we had a baby, it was a girl, and now her mommy and new baby sister were both in the hospital.
The baby had been taken by ambulance to another hospital within an hour of being born. She weighed 2 lbs 5oz and was too small for the NICU at the original hospital. She was taken to Dell Children’s Hospital in Austin, TX. They are a hospital that is equipped to handle preemies and even micro-preemies. This would become our new home.
On that first day I made sure that my wife had everything she needed at the hospital she was in, then I went to my parents house and made sure our oldest daughter and dog had everything they needed. Then I rushed over to the hospital that our baby was in. That day my wife had called me around 9 a.m. to tell me her water broke. Our daughter was born around noon. Here I was walking into the NICU, for the first time, around 8 p.m. Exhausted, scared, and reeling from the day’s events, I walk into the room and see our baby, and I lose it. I cry like a baby. Seeing all of the tubes and monitors, and just how small she really is. I’m consoled by the nurse. She tells me that it is going to be o.k., that it looks worse than what it is.

I spent the night there, sleeping in a chair…well, definitely not sleeping, but I sat in a chair all night long. I wasn’t going to leave our baby alone. The next day I went back and forth from the NICU, the hospital where my wife was, and to see our oldest daughter. My wife was released after a couple of days. Of course we went straight to the NICU. She still couldn’t walk, so I was having to wheel her around in a wheelchair. At that time we were living in a third floor apartment. We had been planning to move before the baby was due, but at 27 weeks, she didn’t give us enough time. Lucky for us, The Ronald McDonald House Charities had these sleep rooms in the NICU. We were able to spend the night there that first night. The rooms were right outside the doors of the NICU. This was huge! I was able to wheel my wife down to the baby’s room and back down to the hall at the end of the night. We would get lucky again, we were able to get one of the rooms every night for an entire week. We would wait to see if a new patient’s family was going to need one of the rooms, and if they didn’t we would get it. Sometimes it would get pretty close. So my wife was able to heal right down the hall from our baby. She was able to walk on her own and get around after a few days. We never had to go up those three flights of stairs, I’m not even sure what I would’ve done.

Our sixty-seven day NICU journey would test everything we had. Those first few days, or week, we were in a huge whirlwind. We were trying to accept the reality of everything that just happened and where we were now. I would stare at the monitors all day, even though they told us not to. To me it was how I was going to see if my baby was going to live or die. Our hearts would sink every time an alarm on one of the machines would go off. It was so hard to watch the team of nurses come in and start doing their cluster care. It was like a NASCAR pit crew coming in. It would all go by pretty quickly, but there were so many wires and tubes on this little tiny baby. Scary stuff.

After the first couple of weeks, it seemed we were able to catch our breaths a little. Things were starting to become routine. We were in the NICU everyday. We made it a point to try to be in the room when the doctors were doing rounds. We were lucky enough to have a NICU that allowed this. It allowed us to always know what was going on, and be somewhat involved in the care of our daughter. I remember one time, they were going to give our daughter some medication to help with something she had going on. The side effects of the medication could have been worse than what she had, and there was just a tiny window in which they could administer the medicine after she was born. We were against it. We were allowed to be part of the discussion on whether to wait or administer the medication. Our daughter improved and got stronger quickly enough that she did not need the medicine. If we had not been present, we really feel that things may have gone differently.
We started dealing with other problems and decisions that NICU parents have to deal with. One was maternity leave. Normal families, are in the hospital for a few days, then take their babies home and use the entire maternity leave to spend time with their baby at home. My wife had 8 weeks maternity leave. Six weeks were paid and two were not. Well, we were going to be in the NICU longer than 8 weeks. During our time in the NICU my wife had to return back to work. I would go to the NICU in the mornings after getting our oldest to Grandma’s, while my wife would go to work in the mornings. We would switch midday. She would then pick up our oldest, come to the NICU, and I would go to work. After I would come back to the NICU and we would usually have dinner at the hospital.
We had our then 9-year-old spending her summer vacation in the NICU. This was tough for all of us. We recruited all of her grandparents to help in keeping her busy. She and I would take time and the hospital would become our little playhouse. We would explore every inch of the hospital, sometimes winding up in places that I don’t think we should have been. Our favorite thing was to go to the water this water structure they had and race leaves in the water.

It took me a while to realize that your NICU stay is not a race, but a marathon. I would approach every day like we would start the process of bringing our baby home soon, which was not the case. I finally started preparing for the long haul. We decided to take the time in the NICU to be a blessing. One in which we would get more information about taking care of our baby then most parents who leave the hospital after a few days. We used all of our resources. We had our lactation consultant who taught us EVERYTHING about breastfeeding and pumping. All of our nursing staff who taught us how to feed, wash, and care for our baby. It was Taking Care of a Preemie 101, and on a college level! We soaked it all in like a sponge.

Even though we had all of this information, we still were not ready when it was time to take our baby home. In our NICU, you would get moved to a room closer to the entrance as you were getting closer to get home. The night before you went home, you got moved into a private room right by the doors. You would spend the night there with your baby. No monitors or tubes. No staff, just you and your baby. It was everyone’s goal to make it into that room. We got moved to a room closer to the entrance and knew it would be soon. What we thought would be a week, turned out to be a day or so. I remember when they called and told my wife that they were ready to send our baby home, she told them “No!”. I couldn’t believe what I was hearing. This is what we’ve been waiting for. Then I realized why she said that. We didn’t have anything for the baby. The day before she was born we had registered for our baby shower, a baby shower we never had! We had been in the NICU for what seemed like an eternity. We didn’t have time to go shopping. We actually delayed her coming home for a day, while we went and got everything we needed. We finally made it to that room right by the doors. We didn’t sleep a wink. We had been used to the monitors, and our nurses. We checked every few minutes to make sure she was still breathing!

We made it. We survived our 67 day NICU stay. Our lives were never the same since. So many things happen to you during your NICU stay. You might become closer with your spouse. It could put some major strain on a marriage. You might find your faith. You might learn to ask for help, or accept it when people offer to help. As a NICU dad I have learned that you cannot do it all on your own, and it does help to talk to people. Share your story! It helps others as well as yourself. If you’re currently in the NICU, stay strong, get sleep, have faith, because there is light at the end of the tunnel. No matter the outcome, you will get through this!