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20 Things No One Tells You When You Bring Your NICU Baby Home

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It’s been three years since my miracle 23-week micro preemie came home from the neonatal intensive care unit (NICU). My daughter was born 17 weeks early and was released one week past her due date.

After spending 121 days in the NICU, my daughter was released to us as if nothing ever happened. We just buckled her into her car seat and drove away — like any other family leaves the hospital a few days after a baby’s birth.

There are many things no one tells you when your baby is released from the NICU. Although parents of NICU babies are overwhelmed with happiness when they take their baby home, most aren’t prepared for the things no one tells you. This is what I’d tell myself during that time about the things no one tells you.

1. No one tells you that you have to be extremely cautious with your son/daughter and wash your hands or sanitize them before you touch her hands or mouth.

2. No one tells you that you have to change out of your “street clothes” each time you come home and put on something different after being out in a world full of germs.

3. No one tells you that you may alienate friends and family by not allowing them to visit your home so you can keep out the germs.

4. No one tells you that you have to bring your premature baby to at least two doctors’ appointments per week. Or that your baby will have weekly appointments at home with a nurse, physical therapist and special education teacher.

5. No one tells you a speech therapist will become like another member of your family, as they see your baby before she can speak and will continue to see your premature baby for many years to follow.

6. No one tells you that you’ll have to skip birthday parties and other celebrations to prevent your precious baby from catching respiratory viruses.

7. No one tells you that your other children (your three boys) won’t be allowed to have play dates at your house because you can’t risk getting your baby sick.

8. No one tells you your other children will have to change out of their school clothes and wash their hands as soon as they walk in the door from school each day.

9. No one tells you that you’ll have to resuscitate your baby several times when she turns blue due to choking on her own spit-up because of severe reflux.

10. No one tells you that you’ll have to use a built-in hospital grade suction machine, which you will install in your baby’s bedroom after you realize she’s chronically ill, to remove mucus from her body when she is sick because her scar-tissue-filled lungs can’t expel it.

11. No one tells you that you will spend more than five weeks in the pediatric intensive care unit (PICU) when your preemie is readmitted for pneumonia. You will have to watch while your baby is sedated, back on oxygen in the PICU and fighting for her life while waiting for the viruses to take their course. You will have to miss out on more weeks of your other children’s lives while sitting by your preemie’s bedside, waiting for (really praying for) her to recover.

12. No one tells you that you can’t take “Mommy and Me” classes or sign up for library story time because your baby can’t be around other children and their germs.

13. No one tells you that you may very well develop PTSD and need counseling, because you will be afraid every sneeze will lead to a hospitalization, and there may always be a constant voice in your head telling you that you may lose your child.

14. No one tells you that you will have to use your baby’s “corrected age” (the age they would be if they were born on their due date and not early) when discussing growth charts and milestones with medical professionals.

These are the things no one tells you when you take your micro preemie home from the NICU. Do you know what else they don’t tell you?

15. No one tells you that you will forever be grateful to the doctors and nurses who took care of your baby in the NICU. You will see them as gods and goddesses, and you will always think they walk on water.

16. No one tells you that you will feel the need to “give back” in some way, either to the hospital or March of Dimes or another organization or charity that supports premature or sick babies.

17. No one tells you that you will be extra proud of every milestone your baby reaches since you weren’t sure if she would ever attain them.

18. No one tells you that your heart will break more than usual for parents of other premature babies, sick babies, terminally ill babies and parents who lost a baby. Although your heart broke for these parents in the past, it will now break in a different, more intense way because you know how lucky you are and will never forget what you went through and how close your own family was to losing a child.

19. No one tells you that you will always celebrate the date when your baby was released from the hospital, as it will always be a miracle day!

20. No one tells you your NICU baby will always hold a special place in your heart that’s different from the special places your other children hold. It’s unexplainable.

Jennifer Degl.1-001

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Originally published: November 7, 2015
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