The Long Road Home | Our NICU StoryThe Short Version
On January 4th, 2018…
we welcomed our twin sons at just 32 weeks gestation due to bradycardia (Baby A only) They spent 38 days in the NICU. While every preemie’s journey is different, I feel like it helps to read about the experience of others. Here is a look at our journey from hospital to home!
On the night our babies were born, I was wheeled into the NICU in my hospital bed. For me, that was a little embarrassing. It wasn’t until hours after their birth that I was able to see my babies, make sure they were okay and then it was back to the room I went. Sadly, for the first time – I felt a bit disconnected from the babies that I had been carrying for so many months but I feel like that was to be expected (though I only had a few hours to prepare myself for a greeting like this.)
The next morning, I was ready to try and stand so that I could go see the boys, they were my strength. I had also read that getting up and moving was a great way to help my body to recover from a c-section faster. I was able to walk from my room to the NICU with the assistance of wheelchair by pushing it for support. This was much better in comparison to the hospital bed. I was able to touch my twins’ hands and that is when I think it hit me that they were here, quite early. The thing that hurt me the most here was seeing them alone. They had been side by side for so long, and now they weren’t feeling each other anymore. I visited them several times that day but wasn’t able to stand for very long so I was only able to be near them for a little while. That limited how much I could actually interact with them. So I talked to them, I let them hear me and hoped that they knew who I was.
On the third day, I was up and walking on my own so the standard NICU visitor requirements went expected of me. We were given badges with codes on them. Each time we visited, we would show them to a camera when we pressed the call button. They’d verify who we are and open the door. From there, we were instructed to always wash our hands at a sink with surgical sponges and for no less than one minute. The sink was a big thing for me, I would stand there for what seemed like the longest minute of my life and just think about the different things I’d see while walking to our area of the NICU. In the beginning, this was scary, I just didn’t know what to expect because the boys were fragile and new to the world, I didn’t know if they would have scary health issues. In addition to washing our hands, we were asked to wipe down our phones with sanitizing wipes to be sure that they were clean and ready to be used for pictures when we needed them. If we were feeling sick, we were asked to wear a mask. I had to be intubated for my delivery and because of that, I had a sore throat. I wasn’t taking any chances even though this sore throat wasn’t contagious, I still wore a mask for a few days.
At first, our sons were in the big isolette boxes with masks over their eyes and the brightest blue lights to help combat jaundice. In addition to that, they had an IV line in their belly buttons, another one in their foot, a feeding tube in their mouth, a nasal cannula and the rest of the wires were just stickers to monitor their heart and oxygen levels.
At the beginning of our stay, things seemed to move quickly. They were extubated the day after they arrived, CPAP through their nose was given. This is when I was able to begin kangaroo care. Then, the bilirubin lights went away, the IV came out of their belly, the feeding tube was moved from their mouth to their nose. When this happened, we were able to begin breastfeeding!The boys had several rounds of antibiotics which scares me but we can work on getting them healthy naturally, now that we are home.
A few days later, the most magical words I’ve ever heard floated into my ears “do you want to hold them together?” I have never felt so emotional as I did on the day this happened. During my pregnancy, I looked forward to the boys meeting one another the most. That was the moment that I wanted to live in forever. So when they let me hold them together, that is when they met. Finally, they were reunited. I didn’t know this but preemies can become overstimulated quite easily, so our skin-to-skin time was limited to one hour per day until the boys were strong enough to tolerate more.
At this point, Argon’s heartbeat wasn’t slow anymore… instead, it was high and unfortunately had developed an arrhythmia. I was so worried about my son and I could see it in my husband’s face that he was worried even more. There was a part of me that just felt like it would all be okay and it was, his heartbeat is totally normal now, but I’ll always remember looking over to see my husband’s face watching that monitor with so much hope that the arrythmia would just stop. As the days went on, he did it less and less. They ran all of the necessary tests and Argon is in the clear for any issues!
From there, the boys were moved to an open crib, this was a bit of a process. First, the nurses opened the isolette to make sure that these little guys could maintain their temperatures (a box on the checklist to going home.) Once they were able to do that (this was just a 24-hour test, they passed!) they moved the boys to a regular hospital bassinet. This was a huge step for me, and for the boys. Our bay had so much more room and I felt like we were getting so much closer to coming home at that point. This is when I got too excited, I was ready for them to come home and they just weren’t.. for a few more weeks.
Feeder Grower Status
There were dry erase boards in our bay which gave each nurse or doctor a glimpse of who our boys are and what they were doing at that point in their stay. Once the boys were moved to open cribs, the board read “Today is a great day for feeding & growing.” Many of the nurses referred to them as their favorite type of babies to take care of, because they just feed and they grow and that’s it. I didn’t realize what this term meant at first, but I quickly noticed a pattern. The nurses that were chosen for our boys mostly consisted of float nurses or extra staff members from the women’s center (labor and delivery, postpartum, antepartum nurses.) That’s when I realized, our boys were not critical care anymore, they just needed babysitting basically. The hospital was saving the NICU nurses for the babies who needed a closer eye. In addition to being given different nurses, we were also moved to a separate nursey called “CCN – Continued Care Nursery.” We didn’t need to be near all of the critical baby equipment so we gladly gave up our space close to that because as one doctor put it, going into the CCN door, put us closer to walking into our door at home, babies in arms.
When we visited the NICU, our routine was; temperature checks, diaper change and then feedings. Whatever the boys didn’t finish, would be put into the feeding tube. This process with twins took about 2 hours in total. Every 3 days the boys were given baths which we were almost expected to help with (this was a favorite part of being in the NICU, this was where I felt closest to our sons.) Our nurses made sure to ask when I wanted to bathe them so that we didn’t miss it. In between feedings, we would do kangaroo care and I would pump. Pumping while in the NICU was great. My output was higher after holding the babies and the hospital pump was very efficient.
The Final Stretch
Our boys spent 5 weeks in the NICU. The last few weeks were the hardest. My nurses said to me many times “Twins rarely go home before 39 weeks here.” Our twins came home at 37 weeks which was a total surprise! At the end, the boys were expected to take 80% of their bottles by mouth. Once that was done for 24 hours, the feeding tubes were removed. The boys sat at 60% for days. Finally, I decided to go to the hospital for every single feeding to make sure they were getting the feeding experience like they would at home. On the day we did that, the boys were up to 93% of their feeds! So the tube came out and they were taken off of oxygen support. They were monitored for 3 days after that with a few desats on oxygen. When the hospital staff decided to send them home, I was asked to stay one night with the babies in a private room. This is where our nurses went over discharge instructions, a mini course on how to care for the babies at home. I also learned how to prepare their bottles and fortify their milk.
The Car Seat Challenge
This is a pretty exciting point of the NICU experience, this is the final challenge to overcome before going home! Our sons passed on the first try which was so very exciting. I decided to be there when the challenge was taking place. I’m glad that I was there because Argon’s monitor read apnea soon after putting him into the carseat. I could see him breathing and knew that the monitors were wrong. Thankfully, I was there to let the nurse know that I was counting his breaths and that he was fine. Here is a cute video of the boys taking on the challenge.
Leaving the NICU was harder than I expected. It was like leaving a job, I packed my things and said goodbye to all of the wonderful people that we met while we were there. The people who had grown attached and who cared for our babies from the moment they were born. At my hospital, they loaded me up with things to take home, to support our babies in that transition period from hospital to home. It took me three carts of stuff to compeletely clear out our bay! That final walk out of the NICU was nothing short of amazing. All of the nurses came to say their goodbyes and wished us good luck. I couldn’t believe that we were taking our babies home, it all seemed to have gone by so fast. I am so very thankful for all of the nurses and doctors who saved our babies lives, without them – they would not be here today.
Argon & Aldridge
Are doing tremendously well, they don’t have any known health issues and are just like typical newborn twins. They sleep well and they love to cuddle. I wanted to take a moment to say thank you! To those who left such loving, sweet comments for the boys. To those who supported me in my time of need, and for the kind messages that were written from the heart. I can’t thank you enough!
About the author…
Hi! Thank you for reading my blog posts, I’m a mother of five with twin boys set to arrive very soon! My days as a photographer began in Southern California where my friends and I had walls full of photos printed from our adventures. I currently shoot with a Canon 5D Mark IV but for the last 5 years I have used a Canon 70D Crop Sensor DSLR because it’s the person who makes a good photographer, not the equipment. I strive to document life as it is, to #sustainchildhood is my ultimate goal for you and for me. If you’ve found my article interesting or helpful, please consider sharing this page and using the hashtag #sustainchildhood so that I can see your work!Alice