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.
- Feel an incredible amount of guilt that their baby being early or unwell is somehow their fault
- Oftentimes cannot hold or nurse their babies 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 their 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 their jewelry and wash their hands before even coming close to their babies.
- 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 their baby & not the monitors.
- Have witnessed their baby being resuscitated, prodded, stuck, you name it.
- Have seen other babies die right beside their own and simultaneously cry for and with the grieving parents while thanking God that their own baby was spared.
- Anxiously said goodbye to their babies as they are wheeled off to yet another surgery – not knowing if they 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 them and their child. These challenges are further compounded if their 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 their child being assessed for developmental delays and constantly wondering whether their 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 ad children with special needs are strong yet vulnerable, powerful yet feel overwhelmed, focused yet feel confused.
Their lives have been on “pause” and readjusting back to a sense of normalcy takes time.
However they are not alone and parents like them can make this transition successfully.
Life after NICU can be the most challenging but it can also be the most rewarding.
I am passionate about helping parents during this stage because I am acutely aware that during this time, many parent’s support systems are decreasing while their needs are not only increasing but also changing.
Contact me today and start thriving again!
©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.