Love, Lauren
“Dear NICU Mama, As you navigate life after NICU, always remember you are a warrior and so is your baby - even if the NICU is following you home.
Mama, you made it home! Your family is finally complete. After days of heart-wrenching time spent apart, your little one is finally coming home. This was your goal the entire time you were in the NICU, regardless of what it took. Always remember you made it to your goal, and you are SO strong, even if the NICU is following you home.
Your new normal might look different than most newborns. Instead of walking out of the front doors of the hospital with your newborn tucked neatly in their car seat, you may be walking out of the NICU with some extra accessories. While no one could have prepared you for the crash course in nursing you were going to get before discharge or how scared you might feel hearing the NICU alarms in your own house, they also could have never prepared you for how proud you will be after your first discharged doctor visit or how awesome you will feel as you successfully navigate outings with a newborn with extra medical equipment. Mama, there will be hard days and days you may feel jealous of the “normal” moms, but always remember you are a warrior. You are crushing it!
Life after NICU can be scary, especially when you didn’t expect to bring the NICU home. Always remember that your baby fought to come home with you, and you continued to advocate for them every single day. Mama, you are a warrior.”
Love,
Lauren
More of Lauren + Owen’s NICU Journey:
“I’m Lauren, a first-time mama to Owen. At 12 weeks pregnant, my husband and I found out that we are both carriers of SMA - a terrifying disease that has limited treatment options. After undergoing an amniocentesis, we found out our baby was healthy! In fact he is not even a carrier of SMA, and we thought we were in the clear. We received the good news on a Friday, which became known as Good News Friday.
At 7:30pm on 1/21/21, our one-day-old son was brought back to our hospital room with five doctors. He failed his heart screening. He was not getting enough oxygen, and he would be transferred to the NICU immediately. So we went. I walked beside him, holding my husband’s hand as we wandered aimlessly through the hospital.
Owen was admitted and immediately placed on a nasal cannula. The well-meaning resident walked up to me and calmly said, “I just want to reassure you that this is not how SMA presents.” This sent me into a deep spiral worrying that the amnio was wrong, my worst nightmare.
On Friday, January 23rd we received news that Owen’s echocardiogram was normal. The heart defects they warned us about were not the cause. Still, we had no diagnosis. We had the largest baby in the NICU but the only one without a reason for what was happening. On day 7 we asked to be transferred to Cincinnati Children’s Hospital, where we had another Good News Friday. The pulmonologist came by and casually said “it’s his chin. Let’s do a sleep study and get you out of here.” Sleep studies usually take weeks or even months to get, but a nurse called me that same night while we met with the respiratory therapist and said, “There’s an opening. We’re doing it tonight!” Good. News. Friday.
By Saturday we had a diagnosis of severe obstructive sleep apnea, and on Sunday we were discharged on oxygen and with a pulse ox.
Owen is 3.5 months old, rocking his nasal cannula, and breaking all the hearts! No one warned us that there was a possibility the NICU could come home with us, but here we are!”
