Life after the NICU...

Recently, my husband and I went to the NICU family support group to tell them our story and to show them how well Poppy is doing. During our NICU stay, those were our favorite meetings. Seeing a NICU graduate thriving post-NICU gave us hope and assured us that there is a light at the end of the tunnel. After we told them Poppy’s story, the first questions the parents asked had to do with our NICU stay and how we made it through. We always will say it is so important to remain positive throughout your NICU journey and to celebrate the small victories that will come. The babies will feed off of their parents’ positivity and this will help with their development. If we are doing ok with this journey, then they will be ok with their fight. We also talked about the little progress markers they can be aware of like when babies start wearing clothes and working on regulating their temperature, they are close to getting out of the isolet, or when their baby starts to feed orally and are taking the majority of their feeds this way they are close to going home so they would have things to look forward to. We stressed that everyone’s journey is different, but these markers seems consistent with everyone that we talked to.

The next big question everyone had was “What is it like when you get home? What is life like after the NICU?” When we talked about this at the meeting, I thought it would be a great topic for a blog. The first thing we said is that it is quiet. Very quiet. There is no more beeping if you didn’t have to go home with a monitor, so you are constantly questioning whether or not your baby is still breathing. My husband spent the first several nights sleeping right next to the pack n play that was in our room to make sure Poppy was still breathing. So the fact that we were tired in the morning had nothing to do with actually caring for Poppy, it was just the fact that we no longer had a machine to let us know that she is still alive.  

The next major change is the fact that you no longer have people coming in and out regularly to check vitals, change diapers if you are not there to do it or are sleeping in the room, and to feed your baby. You finally are the sole provider for your baby and are responsible for their day-to-day care. Some may wonder what type of schedule to put their baby on when they go home because there are so many theories and studies that suggest how you should do it, but if you can maintain the NICU schedule your baby was on when you first go home, you will be fine. Your baby is so used to that routine that the change of environment will not get them out of that. I always said, “NICU training is the best training!” I was home with Poppy in the beginning. Staying on that schedule or close to that schedule made things so much easier for me as a first time parent. You hear stories of how new parents forget to eat and shower and how they do not get any sleep. This was not the case for us. Poppy was used to getting fed every three hours. After a slight adjustment of the time when this was done, I would do the first feed at night so my husband could get six straight hours of sleep and he would do the early morning one so I could get six straight hours. This actually amounted to more sleep than what I would get some nights prior to her arrival. Then during the day I would get things done while she napped including showers. This made me feel more “human” and like I was able to better care for her.

One specific question asked was how long they should keep their baby isolated from the world. I know for some preemies, this is very important, but Poppy didn’t have any strict orders to that effect. I stress here that everyone’s NICU journey is different and discharge orders received, so please follow the orders that you have rather than what I am saying based on our experience. These can be ideas for when you get the all clear if you were to remain isolated for a period of time. We were definitely cautious with what we exposed her to. My husband, our parents, and I all got the TDAP vaccination right away and we all got our flu shots this year to limit what she is exposed to. We are her regular caregivers so we had to be as proactive as possible with our own health. We have signs on her car seat and stroller that say not to touch her when we take her out in public and people are respectful of that. If I did have an errand to run, though, I would take her with me instead of waiting for my husband to come home. This got her used to travel in her car seat and to running errands. To this day she still sleeps the majority of the time when we are out which makes it easier on us. Please understand we were cautious with her, but we didn’t stop day-to-day life because we had a preemie. We did miss out on things because it was in her best interest. There were family events/ birthday parties that we missed out on because someone in attendance was sick and we did not want to expose her to that. This is something you hope your family will understand and will be honest with you that they are sick before you show up and have to make the decision to leave because it is so important that they are not exposed to illnesses. At the end of the day, we trusted our gut; if we didn’t think it was safe for her, we didn’t do it.

Taking a preemie home can be scary. This is a tiny human you watched fight for their life for several weeks if not months in the safety of a hospital. When you take them home you are exposing them to the outside world that is full of germs. You will clean your house and your car out the best that you can to prevent contact with unnecessary germs, but some will still be there. You will go to what seems like a million doctors appointments in the beginning, but eventually those will start to taper off as your baby grows and hits milestones. Poppy is 10 months old now, and because of her amazing growth and development, we are down to pediatrician appointments that are scheduled when children typically see the pediatrician (no more weight checks) and we will have to go to the Preemie Clinic for her Bayley Test at one year corrected, but we have checked off therapy visits and the eye doctor. Every time a doctor said she is fine and that they won’t have to see her again or at least not for years is another weight lifted off of our shoulders and you know your baby will be ok.

All of this can be stressful whether your baby is a preemie or full-term, but remember your goal was to be a parent. You trusted yourself enough to want to start a family, so trust yourself in this situation too. There is not a magical guide to being a preemie parent. You just have to trust your gut and have faith in yourself and know that you are making the correct judgment calls for your child. You are the parent of a preemie which makes you tougher than most and don’t forget that! What is life like after the NICU? It is good. It is so good to have your baby home, to watch them thrive and grow, and to just be a baby. They are a baby for such a brief window of time, do not forget to stop and enjoy it.