Uniqueness of Parents of Premature & Sick Babies
There is nothing normal about being in the NICU watching your baby, who is about the size of your hand, hooked to a ventilator fighting like mad to live.
Most parents become parents by experiencing a relatively routine labour and delivery with the end result being a perfectly normal and healthy baby. These parents are usually home after 2 or 3 days in hospital – WITH their baby.
This isn’t the picture for the parents of premature and/or sick babies.
They enter parenthood through the non-traditional route with either their baby arriving several weeks early or born full-term but very sick. In both cases, the babies require intensive medical intervention & the parents usually leave the hospital – WITHOUT their baby.
They know that they have become parents but really don’t feel like they are.
These parents, you:
- Feel an incredible amount of guilt that your baby being early or unwell is somehow your fault
- Oftentimes cannot hold or nurse your baby or even hear them cry (if the baby is ventilated).
- Feel isolated because family and friends just don’t understand and even the ones with the best of intentions can say the stupidest things
- Can only touch your babies’ hands through the door of the incubator.
- Quickly learn terms and acronyms such as desaturation, intubation, PDA, bradys, NEC, longlines, ROP, intraventricular hemmorhage, TPN, etc.
- Must remove all of your jewelry and wash your hands before even coming close to your baby.
- Grieve the loss of either not completing the pregnancy to term or not having a healthy baby
- Hear the monitors going off constantly – sometimes a false alarm, sometimes not – and struggle to just simply look at your baby & not the monitors.
- Have witnessed your baby being resuscitated, prodded, stuck, you name it.
- Have seen other babies die right beside your own and simultaneously cry for and with the grieving parents while thanking God that your own baby was spared.
- Anxiously said goodbye to your baby as they are wheeled off to yet another surgery – not knowing if you would ever see them alive again.
- Live in the hospital – the NICU docs & nurses become family
- Function on auto-pilot & develop a daily hospital/home routine
- Mothers religiously pump their breasts in the NICU so their babies can have a drop of their milk via a syringe.
The list goes on and on….and this is just in the NICU!
Once coming home, things are different but no less challenging for you, as special parents, and your special child.
These challenges are further compounded if your child has special needs. Such things as having many more doctor’s visits than average, being on the lookout for such things as RSV, severe reflux, apnea, etc, watching your child being assessed for developmental delays and constantly wondering whether your child will develop normally, become the norm.
- Intense feelings of joy, anger, confusion and powerlessness can come in varying degrees on a daily basis.
- Parents of premature and/or sick babies and children with special needs are strong yet vulnerable, powerful yet feel overwhelmed, focused yet feel confused.
- Your lives have been placed on “pause” and re-adjusting back to a sense of normalcy takes time.
However you are not alone and parents like you can make this transition successfully.
Life after NICU can be the most challenging but it can also be the most rewarding.
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Copyright © 2009 Gigi Khonyongwa-Fernandez
“Real isn’t how you are made,….it’s a thing that happens to you. When someone loves you for a long, long time, not just to play with, but REALLY loves you, then you become Real. Does it hurt? Sometimes.” (excerpt from The Velveteen Rabbit, Margery Williams)
Parents of premature babies are often referred to as parents of preemies.