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Life after leaving the NICU
Life after the Neonatal Intensive Care Unit was not something I thought was ever going to happen but was anxious for. My surviving twin daughter spent exactly 162 days in the NICU before she graduated and was able to come home.
I remember when I never thought she was going to outgrow preemie clothes or the nano preemie diapers. Graduating from the NICU seemed like years away, literally.
I longed for the time when I wouldn’t have to drive an hour to visit her, walk from the parking garage to her room (which felt like miles), get help picking her up from her incubator or listen to the sounds of monitors going off every 30 seconds.
When I visited I would rock her in the blue chair that was placed in her room.I couldn’t wait for the day to bring her home and rock her in her grey chair in her woodland theme nursery that my husband and I spent so much time preparing for her.
See being in the NICU was isolating and lonely. The outside world just didn’t understand what it meant to have a preemie in the NICU facing obstacles on a daily basis.
You would update the world on her progress and no one would understand how stressful, overwhelming, sad, and scary the journey is. It’s hard to explain to someone who didn’t go through it first hand.
Since bringing my daughter home 6 months ago, I want to share what I have learned about life after the NICU.
1. Isolating and lonely.
Life after the NICU can be just as isolating and lonely as still being there. I felt from several people who once I brought my daughter home they tended to back off and stop asking how we were. It was like they assumed we’re home, therefore everything is fine.
But we were scared.
We were first-time parents, we had already lost a baby in the NICU after four days, our baby was coming home on oxygen requirements, and we saw her fight for her life on a daily basis. We were excited for her to be home but also terrified.
She was tiny and fragile and we wanted to keep her as healthy and safe as possible. So from the beginning, we kept visitors away beside immediate family. We were warned so many times in the NICU that we needed to keep her healthy and away from germs as best as possible to prevent her from coming back due to an illness.
We had just walked out of the NICU after 5 months, there was no way we wanted to take our baby back to the hospital on our watch.
So we had to tell some people no when they asked to visit. Majority understood and were respectful of our decision.
2. Adjusting for preemie age.
Anytime I take my daughter out in public I get the common question “how old is she”.
It may seem like a simple question but like a preemie mom like myself, it’s a hard one. When asked this question I have to decide which answer I should give.
See I have two responses I could go with. Actual age and corrected age. The corrected age or adjusted age is your premature babies age minus the weeks or months born early.
For example, my daughter is 11 months old and was born almost 4 months early which means her corrected or adjusted age is 8 months old.
When I go with her actual age, I always no matter what get the same response each time “oh she is tiny for her age”. Then I have to explain yes, she is and that is because she is a preemie and was born almost 4 months early.
I get several different responses to this one. Sometimes it’s a blank stare or questions asking if she is healthy and ok.
If I go with her corrected age I get the least amount of questions. Because nobody knows she’s a preemie unless I provide that information to them.
Usually, depending on the situation and the person depends on which answer I provide.
Do you have to tell people the corrected age? No, it’s your personal preference but I would recommend letting anybody who is caring for your babies such as the sitter, healthcare profession and teacher know this information.
3. A lot of appointments to go to.
I remember when we were finally released from the NICU after a long 162 days, they sent us a home with a sheet full of dates for upcoming doctors appointments. I couldn’t believe how many appointments we had scheduled and needed to schedule in the next couple of weeks.
On top of the doctor appointments, my daughter was scheduled for she also had a home health nurse taking her weight once a week. As well as therapy appointments biweekly. The first few weeks felt like a whirlwind, but they finally settled down and I felt like we were getting into a routine.
4. Requires special equipment.
My daughter came home from the NICU on .4 liters of oxygen. Which meant we had lots of equipment in our house.
We had a small cord that ran from the oxygen tank to my daughter’s nose cannula. It didn’t reach every room so we were limited to certain spots in the house her room and the living room.
It also meant if we needed to make a trip we had to take our travel oxygen and extra tanks with us. After the first couple of days, you get used to your restrictions and make do. We were, fortunately, she was released from the oxygen after 3 months.
5. Your babies immune system is still weak.
My daughter was diagnosed with chronic lung disease (respiratory problem with premature babies) while in the NICU.
What that means is my daughter is more likely to pick up a simple cold or flu-like symptom which could turn into RSV and cause a long stay in the hospital.
Since leaving the NICU her immune system is working hard at getting stronger, but her lungs are still weak.
6. Small for their age.
Almost a year later my daughter is still small for her age. She is almost a year old and wearing 6-9 month clothes. It’s been a constant battle from day one getting her to gain weight.
She is a very difficult feeder.
For the first few months, I was the only person she would let give her a bottle. Fortunately, she has improved so much but she is still considered small for her corrected age.
It’s always been a stress factor as her mom to make sure she is getting enough nutrients to help her grow. From day one we have been worried and tracked every measurement and test in the NICU.
It doesn’t seem to fade once home.
7. Mom and Dad might have PTSD.
Being in the NICU is such an emotional roller-coaster. Your life is put on hold while you care for your baby as much as you physically can during their stay in the NICU.
I watched one of my babies pass away, while the other remained in critical condition. I watched my daughter get help breathing, poked with needles on a daily basis, tests ran back to back, and fight every day till she came home. Sounds and smells trigger anxiety and emotions from the days in the NICU.
It’s something I will carry with me for the rest of my life. I will forever mourn the loss of a full term pregnancy, the loss of a normal delivery, newborn photos, and the loss of one of my twins.
If you are planning on bringing your preemie home soon, please be sure to check out my post on tips to prepare your home. It’s hard to find someone to talk to or relate to what you are going through who hasn’t experienced the NICU life. Life after the NICU can be just as challenging.
Be sure to find a support system that you can lean on as you will need it. Your friends, family, and coworkers want to help and support you but they may not know how. Feel free to let them know specifically what you need from them.