Most parents get to take their new babies home a couple days after they are born. But the road home is a lot longer and much more unpredictable if you give birth to a premature baby, or in my case, premature twins.
When my sons Noah and Nikoh were placed in the NICU minutes after they were born on March 26, 2014, my husband and I immediately began wondering, “When can we take them home?” Of course we knew the NICU was the best place for them to be since they were born at the beginning of 30 weeks gestation and had a lot of developing to do, but that didn’t stop us from anticipating the day we would take them home.
One of the most frustrating aspects of our babies living in the NICU during their first month and a half of life, was that we never had a scheduled date of when they would go home. So we literally had to take it one day at a time. It felt like FOREVER. Anytime we would ask their neonatologist or nurses, “When will our babies get to come home?” the answer was always, “It depends on Noah and Nikoh.”
The timeline of when they would come home was up to them and depended on how fast their tiny bodies would develop and gain strength. A big weight to place on their little shoulders if you ask me!
Just to be safe, we were told to expect they would go home around their due date of May 21, 2014. So we knew we had a LONG road ahead.
Their neonatologist also prepared us for the reality that Noah and Nikoh would likely be discharged to go home at different times. So although we looked forward to discharge day, we also dreaded it because we knew we would probably have to leave one baby behind in the NICU when the other baby was ready to go home.
Bittersweet to say the least. (I will write a future blog all about their emotional discharge days which indeed came 10 days apart and was the happiest and saddest days of my life.)
Every NICU baby has their own personally tailored list of medical milestones they have to achieve before they can be discharged from the hospital’s NICU. The list varies from baby to baby, but most preemies — including Noah and Nikoh –have to complete some or all of the following milestones:
>>> BREATHING: NICU babies must learn to breathe on their own before they go home. Both Noah and Nikoh were placed on a CPAP at birth, a respiratory support machine which gave them constant air flow to help them breathe and keep their tiny lungs from collapsing. The CPAP is a clear, thick tube which was positioned tightly over each babies’ nose. It took Noah and Nikoh each about two weeks to breathe unassisted. The day that machine was unhooked was one of the best days we had in the NICU. A MAJOR step forward!
>>> WEIGHT: Noah and Nikoh had to show consistent weight gain on a daily basis. They each had to reach at least 4 pounds before they could go home. Typically Noah and Nikoh would gain a couple grams each day, and although it doesn’t sound like much every gram was a BIG step forward.
>>> BODY TEMPERATURE: NICU babies are kept in warm incubators until they are able to maintain their body temperature at 98.6 degrees fahrenheit. Once they were able to maintain a stable body temperature, they would “graduate” from the incubator to an open crib. It is important for preemies to maintain 98.6 degrees, because if the temperature is too low or too high it can cause stress to the baby which can result in weight loss, an increased heart rate and irregular breathing. It took Noah and Nikoh about two and a half weeks to maintain their body temperatures and move into their open cribs. The day we found out Noah and Nikoh were strong enough to move out of their incubators brought HUGE smiles to our faces and made us SO proud of them! Another milestone that sounds so small, but meant so much for them and to us! Noah moved into the crib first, and Nikoh followed about a week later. This milestone was also emotional for us because although we were so proud of Noah taking a step forward, half of our heart was still saddened by the fact that Nikoh was still in the incubator.
>>> FEEDINGS: Noah and Nikoh were originally fed through feeding tubes, but when they learned to suck, swallow and breathe they began bottle feedings (which came a few weeks after they were born). Before NICU discharge they were required to finish a full day of bottle feedings every 2-3 hours. Some added requirements were that they had to finish their bottles within 30 minutes of feeding start time and they had to remain awake while feeding. For preemie babies, bottle feeding can be quite the task. They must be able to drink and digest breast milk and formula. It takes a lot of strength and coordination, which results in the babies getting very tired. My husband and I were taught to keep Noah and Nikoh stimulated while feeding them in order to help them complete their feedings. We would rub the back or sides of their heads, tickle their little feet and hands and talk to them to keep them stimulated. From our experience, tolerating the feedings was the last thing Noah and Nikoh accomplished before they were discharged. It took both of them about a week to learn to tolerate and complete the required feedings. When they were finally able to bottle feed successfully, they were discharged within 2 days. BIGGEST milestone ever!
As a new mommy it was often disheartening, stressful and overwhelming to watch Noah and Nikoh experience setbacks while trying to achieve the NICU milestones. I felt a lot of guilt because my babies were in the NICU. A big part of me felt like my body failed me and jeopardized the lives of my babies. I struggled a lot internally with that guilt, and I still do to this day. In my research I have found that the guilt is common for most preemie mommies. I do remember on the days that felt really overwhelming, my husband and I would often say to each other, “How awesome will it be when we are all home together?!” We anticipated being home with them so much, and that day the four of us were finally together at home was the best day of our lives.
So instead of counting down the days, we were in the NICU around the clock cheering our babies on and making sure we were as “hands on” as we could be every single day. We learned to changed their itsy bitsy diapers (which was stressful to do with tons of wires, tubes and needles poking out of their little bodies), we learned to give them sponge baths which was hard to do because at 3.6 (Noah) and 3.9 (Nikoh) pounds they were so tiny and fragile, we spent hours and hours “kangarooing” with them, or giving them skin-to-skin contact to create a bond and make them comfortable with us, and I learned to breastfeed them, which was difficult and frustrating to do at first since they didn’t know how to suck or swallow much during the first few days. We wanted to learn every single thing about our babies, and we did. It was so much to learn and “take in” but as the days rolled by, we felt more comfortable in the NICU and more confident “handling” and caring for our babies.
My husband and I made a great team. We were both committed to spending every day and night with our babies in the NICU. Many nights my parents also joined us in the NICU to visit Noah and Nikoh and also learned how to feed and bathe them. We made sure we were there for the majority of their daily feedings, bath time and any time we knew they were having any X-rays, blood work or procedures done.
It made us feel better knowing when our babies were awake and a little more alert, or when a nurse or doctor was performing a procedure on them, Noah and Nikoh would be comforted to see, feel and hear their mommy and daddy right there with them.
We were a team right from the start.
Noah and Nikoh each had a lot of work to do in the NICU, and we were so proud and amazed to see how much strength our tiny little boys displayed. I can’t imagine going through half of what they did. My husband and I had so many proud moments in the NICU, it was nothing short of miraculous to see their progress from birth to discharge day!
Today as I sit here and write this blog I glance over to my babies who are now six months old, four months “adjusted” age. They are each closing in on 20 pounds, starting to roll over, and learning to say “mom,”! The NICU seems like such a long time ago, but it will always remain a big part of who they are.
Although time tends to stand still at moments in the NICU, it has literally flown by since they have been in the comfort of our home. I feel blessed and thankful to God for giving Noah and Nikoh such courage and strength, and for continuing to help them grow and develop everyday since they were born.
I look forward to sharing more about my miracles in future blogs.
XO~Noah & Nikoh’s Mommy