In our shoes.

Volunteer April Ratajczak blogs for us

I recently shared an article on our Tiny Sparks Facebook page titled “20 Things Not To Say To A Mom Of A Preemie”.  You can read the article here.  This started up quite the conversation on the thread with a lot of people commenting on hurtful things that had been said or done to them during their NICU stay or after once they were home.  Parents know that these things aren’t done or said with a malicious intent; however that doesn’t change the fact that sometimes these things, especially certain comments, can be very painful. 

That inspired me to write this blog.  I could easily write a blog to tell you what to say or what to avoid saying to the parents of a premature baby.   However, I feel like instead of telling you what is helpful (and hurtful), I would just tell you what it’s like to be the mum and dad of a NICU baby.  Unless you’ve been in our shoes, you will have no idea what parents are going through.  Perhaps better understanding what we are going through will help you to be able to provide the support your friend/family/etc needs during their NICU journey.  

(Disclaimer: every nicu journey is different.  What one family experienced may not be the same as someone else.  This list is just a guide based on my experience as a NICU mum to a premature baby.)

1.       We don’t eat well. 
What’s for dinner?  Often whatever leftovers we have in the kitchen from food that was given to us or whatever takeaway sounds edible.  After a while, no takeaway sounds “good”.  After spending the night worrying (and for many mums pumping) and then all day at the hospital, going home to cook a meal (followed by the clean up after said cooked meal) is more than we can bare.   And hospital food?   While it may be decent, after a while it becomes...... old.  A freshly cooked hot meal is pure bliss.

2.       We are lonely. 
People may comment on Facebook updates, pictures, etc, but the phone isn’t really ringing.  Perhaps it’s because people don’t know what to say, so it’s easier to say nothing.  Perhaps people just got busy.  Perhaps people assumed we knew they were there.  The truth is life gets lonely.  Your day revolves around watching your baby lay in the incubator/cot and watching monitors.  Your social interaction becomes the chats you have with the lovely nurses who become friends (and some become a second family). It’s just the way it goes.  And yes, there are certain people who never let you forget they are there for you and check on you regularly, (and those are the family/friends you are extremely thankful for) but there are a lot of people who just vanish.  

3.       Our baby’s good days are our good days.  Our baby’s bad days are our horrible days. 
It’s just the way it works.  Also sometimes there can be nothing “wrong” but after watching your child fight to live day after day, mixed with all the emotions we are experiencing (several discussed throughout this), sometimes we are just exhausted and emotionally drained.  So know that even on good days we may be struggling, but if our baby isn’t doing well, you can assume WE aren’t doing well either. 

4.       We are hearing a LOT of Cliché’s.  And they are painful.
 “Sleep while you can”  “She will be home when she is ready”  “He is where he needs to be”  “One day this will all be a memory” “I know how you feel” (spoiler alert: unless you actually HAVE been in these shoes, that last one will make us angry...very angry...)   I could go on and on and on.  While some of these may have some truth to them, it is basically telling us we aren’t allowed to feel how we feel.  And we have every right to feel upset about the situation.  NO parent wants their child home before they are ready.  We KNOW the hospital is exactly where our baby needs to be.  We know these things.  But we are frustrated, tired, and just need you to listen to how we feel.  Often these clichés come because people have no clue what to say.  But it’s ok.  We really don’t need you to fix this or say any words of wisdom.  

5.       We know our baby is tiny. 
But please stop saying it.  You may be in shock, but despite all odds, our baby may be 2-3 times their birth size or bigger once you see them.  “He/She is so tiny” seems to hit a sore spot with a lot of NICU parents and takes away from the fact of how much they have overcome to get to the size they are now.  Our baby may be small, but has conquered some amazing hurdles and endured more things than a lot of adults have had to fight. 

6.       We are exhausted by the monitors.
Watching monitors all day sounds boring.  Until those monitors are hooked up to your baby, and every alarm that goes off causes you to worry.  You sit and worry that this time your baby won’t bounce back.  This time their heart won’t go back to beating at a normal rate.  This time their oxygen levels won’t recover.  You also don’t hear just your baby’s monitors, but also all the babies around you.  During your NICU stay you will likely experience your baby or another baby in an emergency situation, require resuscitation, and sometimes become critically ill and/or pass away.  The reality around you is impossible to escape.  You worry about babies around you, as you have become attached to them and likely have become friends with their family.  You also worry the “what if” in terms of your child.  “What if we are next”.


7.       We are scared.  Really scared.
We are watching our child fight to live.  It’s scary.  Really scary.  Many NICU families have no experience in a NICU until their child is in one.  It’s a whole new world full of tiny humans, unfamiliar faces, and noisy monitors.  When you welcome a child into your family, you think that it’s natural to be scared, but this is a whole new WORLD of scared.  We have no clue if we will even be taking our babies home with us. The first time we get to hold them, while it’s a moment of pure bliss, is also nerve wracking.  They are so small, fragile, and still hooked up to all the monitors and breathing aids.  This isn’t what we envisioned when we thought about holding our baby for the first time.  It’s absolutely terrifying and the list of terrifying things is long enough to be its own blog entry.

8.       We are TIRED.
We spend all day at the hospital.  Many mums are also pumping every three hours (that’s three hours from start of pump to start of next pump, so around 2 hrs of sleep between if you are lucky).  While you are up, you also call the NICU for an update.  Sometimes the phone isn’t answered straight away so you enter a panic “something is wrong” mode.  A few minutes later the phone is answered, you get an update, and go back to bed.  As soon as you lay down you wonder if your baby is still ok.  Afterall, a lot can happen in five minutes.  As your mind races, you realise you have about an hour until the alarm goes off for your next pumping session.   Even without the pumping, your mind doesn’t stop.  Again, “sleep while you can” is a statement that is an absolute joke for a NICU parent.  Don’t forget for a lot of families, one or both parents are also working.  So add full time work life into that mix.  Yeah.  We are tired.

9.       We feel guilty.
It’s a very normal and often talked about emotion for NICU parents, especially mums.  While we may KNOW this was not our fault, good luck with us fully believing that.  Many of us followed the “book”.  We didn’t eat foods on the “no” list for pregnancy.  No drinking.  No smoking.  Never forgot a prenatal vitamin.  However we tell ourselves that we should have started maternity leave earlier.  We should have pressed harder when we  felt something was wrong and the medical team blew us off.  What if we had pushed and they detected this earlier?  Maybe a second opinion and this would have been caught?   What about some of our cravings?  Did we eat the wrong foods?  We had no signs, did we miss something?   The guilt will eat us alive.   Actually, the guilt DOES eat us alive.  Remember that when you ask us questions about our baby and our pregnancy ending early.

10.   We don’t know.  We simply do NOT know.
We have no clue when our baby is coming home.  We have no clue if he/she is coming home on oxygen or any other equipment (but really, does it matter?).  We have no clue if our baby will have any long term effects or problems.   We are stressed out about it and we simply don’t have the answers to these questions.  Trust me, when we have the answers, we will tell you.

11.   We grieve for the things we lost; it’s normal.
This is one that a lot of us don’t expect, but when it happens the grief is quite overwhelming.  The list of things we lose when we have a premature baby is quite long.  And while we are so happy that our baby is doing as well as he/she is, we are going to be upset about the things we missed out on.   

12.   We will never ever ever ever consider ourselves LUCKY we missed out on the aches and pains of the last month of pregnancy.     
This could fall in the cliché category or the grief category, but it deserves its own mention.  I think the comment speaks for itself.

13.   We cannot afford to get sick.  Neither can our baby (or any baby in the NICU for that matter)
If you are sick, please avoid contact with us.  We know that people get sick, but we can limit our contacts with people we KNOW are sick.  For parents, missing on time in the NICU because we are unwell is pure torture.  For the babies in the NICU, a common cold or stomach bug lose in the NICU could be deadly.  That is no exaggeration. 

14.   Our future is uncertain and scary.
We have no clue what the future holds.  Will there be long term medical issues?   Developmental delays?  Will our baby be on medical equipment when they come home and if so for how long?  What medications will the baby be on?  Most premature babies have multiple follow ups over the first few years and beyond, so we may wonder what our care plan will entail.  However, the big question we ask is, “will our baby come home”.  These are not the questions new parents should ever have to be worried about or think about.  Yet, for parents of premature babies, it is.  And further past that, many think about the future.  What happens if we chose to have another baby one day?  Will we have to endure this again? 

15.   Our life will not instantly become normal just because we get discharged.
Once we get to take our baby home, we don’t just instantly become a “normal” family who just brought their full term, freshly born baby home from the hospital.  We have specialist appointments, weight checks, Neonatologist appointments, GP appointments... the list is quite intense and exhausting.   Our life revolves around our baby’s appointments.  We also may have medical equipment at home that we are still using.  We have a very fragile infant whose immune system is not the same as a full term baby and whose organs are still fragile, especially their lungs.   A simple cold for some babies will easily land our baby in the hospital back, possibly back on oxygen and respiratory support.  All this while also coping with an infant’s needs, sleep deprivation, and normal life such as eating, cooking, cleaning, etc. 

16.   We celebrate every milestone so much more.
All parents celebrate milestones.  However when you have a child born prematurely you have no clue what the future holds, especially with developmental delays.  So when our babies roll over, talk, crawl, or any other milestone for the first time, expect a celebration that you may find over the top.  But when you have no clue what effects on development your child’s prematurity will have, when they do hit these milestones, and on time (corrected age) not only are we excited and proud, but we have a sense of relief as well.

17.   We will keep hand sanitizer for visits and continue to avoid us you when you are sick, even once we go home.
Do not be surprised when you come visit at home when we have a bottle of hand sanitizer and remind you to use it every visit.  Do not be surprised when we avoid functions because someone who will be attending is sick.  Our baby is fragile and all of our specialists have guided us on staying healthy.  Hospitalisation is extremely common for prems once discharged, especially in winter when winter colds and viruses, including the Flu and RSV.  We may not avoid an illness or needing to be hospitalised, but we will certainly do everything in our power to avoid it.  Who wouldn't do the same?  Our child does NOT need to build his/her immune system by being exposed to people who are sick.  We are NOT being over protective.  We WILL take our medical team's advice every time over anyone’s “theory” on our child’s health.  Every.  Single.  Time.  

18.   We left the NICU, but the NICU did not leave us.
It’s not a chapter of our life we will just forget.  We may wish we could, but it’s there.  There will be random occasions that bring emotions back.  Perhaps the sound of monitors on a TV show.  Perhaps it’s seeing a pregnant woman who is very far along.  We have no clue what the triggers will be.   We would not wish the NICU experience on a single person, yet for the most part, we wouldn’t change much.  We came out stronger than we went in.  We came out more knowledgeable than when we went in.  We came out more appreciative than when we went in.  And for many of us, we were lucky enough to walk out with a true, living, breathing miracle in our arms.  Often that little miracle has taught us more about life in their short time on this earth than we have learned our entire lives.

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