10 Things I Wish I Knew At The Start...

I had visited a friend that had twins in the NICU many years ago, but didn't think much of it at the time as I thought that I would never find myself in this situation. 

As soon as my NICU journey started, I instantly wished I knew a lot more about it all.  

This episode will discuss 10 things that I wish I knew at the start of my NICU adventure. 

It is not an exhaustive list, as there are many more things that I wish I knew, but this is a pretty good start that might help you on your journey! 

Transcript

I had visited a friend in hospital once before that had babies in the NICU, but never, ever thought that I would be there one day myself.  I didn’t take much notice of all of the instruments and alarms during my first ever time in a NICU, as I wasn’t personally invested in the process, as it wasn’t my baby. 

It wasn’t until I found myself the NICU with my daughter, that I wish I knew more about it all, or had remembered some elements of my first encounter in a NICU. 

INTRO

Hi guys, well, today I wanted to share an insight into what I wish I knew when I first started out in the NICU with my daughter.  Some of what we will chat about today would have really been helpful to know prior to, but ultimately there was no way of me finding out as everything just happened so quickly.

So, I wanted to give you my 10 things I wish I knew at the start of my NICU journey.  They are in no particular order, they are just 10 things that come to mind when I reflect on my time, or they were the most common things I spoke about with other Dads or other people when I was giving them updates on our little fighter. 

1) Ok, so let’s kick things off with how sad and scared I became.  I thought that having a baby was going to be a magical experience like what you see in the movies.  I have previously discussed in other episodes what our planned birth should have looked like, but what happened was far from our ideal.  The outcome of it all, was that I was so scared and sad for so long.  Scared that things would go bad or take a turn for the worst.  Sad that we didn’t get out planned birth and sad that I felt so scared!  If I knew how scared and sad I would feel before going in there, there probably wasnt much I could have done to prepare myself – other than to know to expect those feelings, and not get too worried that I was in fact feeling scared and sad. One thing I did know about myself was that I have always been an emotional person, you should have seen how much I cried on my wedding day!  I am a massive sook! 

2) Next on the list is going home alone or home without your baby for so long.  Yes I have discussed this in a previous episode at length, but it is still featured on this list as I never knew that these feelings would affect me so much during our 98 days in the NICU. Some days I just felt so bloody guilty walking away from my daughters isolate.  Most days we would spend around 3-4 hours in there with her, some times twice a day.  But we never missed a day! Not one!  The best part of every day was seeing her for the first time that day, and seeing if there had been any changes over night.  The worst part of every day was walking away from her, and leaving her there while we head back to our somewhat normalized life on the outside. 

3) The next item on the list is probably a fairly obvious thought on reflection, but the realization of knowing that there is absolutely nothing that you can do to control what is going on can really hurt sometimes. I love being in control and knowing everything.  I’m not a massive fan of change at the best of times, and I love to work to a plan and know what is going on. Life in the NICU is far from controllable for parents, and you just have to let it all happen on its own and let everything run its course. All you can do, is what the role of the Dad is in the NICU, and I will have a separate episode on this soon. 

4) One of the big ones for me was that I wish I knew that you need to keep up with your normal routines as much as possible.  For me, this should have meant that I continued to go to the gym, go for runs, play golf and spend quality fun time with my wife.  I stopped it all due to a number of factors, primarily because I felt guilty for doing these things while my daughter was fighting for her life in the first week, and the fact that I felt like I am no longer allowed to have fun, I must feel sad and depressed.  Completely stopping my fitness activities made me feel like crap within the first two weeks and it just got worse from there.  I drank so much and eat some pretty terrible fast food out of pure convenience, and it made me feel really bad.  I couldn’t sleep, I lost all motivation and I put on a lot of weight.  The dad bod is a real thing! The balance of all of this, is the partnership you have with your wife or partner.  Make sure you look after each others mental and physical states.  Let them go to the gym or for a run while you go to the hospital, and swap out in the afternoon.  There is no point in sitting there crib side for 5 hours and feeling like crap, because going for a run or doing something you enjoy will make you feel 100 times better mentally and physically, which in the long run is so bloody important!

5) cherishing the small wins or small victories will help you along the way.  There are so many milestones that your baby will reach, and every single one of them should be celebrated.  One thing that I made sure of in the first week was that we celebrated the birth of our daughter.  We didn’t do this for 6 days because we didn’t know if we should be or not.  But it got to the point where I had the realization that we needed to lift our spirits and celebrate that we had a baby!  Both sets of our parents had come up to visit us, so we all went out for dinner.  I had been saving some expensive wine for over 12 years for a special occasion, and this was it!  It actually lifted our spirits a little to be able to acknowledge the miracle that had occurred, and that our little girl was alive and fighting! You will all have your own special moments on your journey, and you should find a way to celebrate them, even if you think they are small and insignificant, they could end up being huge milestones in your babies journey. So cherish them all!

6)  I wish I knew how strong and resilient the babies were.  I always felt like I was waiting for the phone to ring with bad news, or that every time the alarms went off that she was crashing and going backwards.  Your journey will never be perfect, and the development of your little one will never be a perfect progression.  Setbacks and plateaus are normal and expected along the way, and you need to embrace them and not get caught up in the numbers. At the end of the day, as long as they are still in the NICU, that is the best place for them and the care they are getting is exactly what they need.  Your baby will go through a lot of testing, poking and prodding, but they wont remember any of it, and when they stop crying they forget pretty quickly why they were crying at all! I guarantee that it is always hard to watch them cry, squirm or have an apnea or for their heart rate to plummet or to skyrocket, none of that is easy to deal with for you, but it is part of the process, as they are tiny fragile little things.  But remember, they will bonce back! 

7) I assumed that every nurse would do things in the same way as each other.  I want to make it clear that this is no way a criticism of the staff in the NICU as what they do for our babies is absolutely astonishing, and the lengths that they go to and the dedication that they have for the survival of your baby is unquestionable.  They are so driven to achieve the best outcomes for your child, and they sit next to you on the emotional roller-coaster throughout your NICU adventures.  

The parents are the only real constant in this process. What I mean by that is that only you will see your baby day in day out, and you might pick up on things that the nurses haven’t.  don’t be afraid to speak up and mention something that doesn’t look right or seem right.  The nurse you have on that day might not have cared for your child for a few days, or it could be the first time they have seen your baby. Whilst they do conduct very thorough handovers, sometimes your keen eye can identify trends or things that your baby does or doesn’t like that will aid in the care and treatment of your bub.  Going back to the initial point of this item, there were many occasions where you would be advised to do something one way, and the next shift would have a different opinion or a different way of doing things.  I put this down to the different levels of training and experience some nurses have had, and the amount of time they have spent in the NICU against other nurses.  Ultimately, you just have to go with the flow, and not get too flustered if things or process or thoughts change on what to do or what is happening.  Everyone is different.  

One thing you need to make sure you do is to go back and visit.  Show off your little prize to the nurses after a few months, and they all will be genuinely interested and keen to see how they have progressed.  Taking your little one back to see the people that kept them alive will be a massive reward for all of the NICU staff, seeing the fruits of their labour so to speak! 

8) You cant compare apples with watermelons, so don’t even try!  comparing babies is tough and can lead you down the wrong path. Every baby is different, and each journey is different.  You will never know what has happened to lead to a baby being in the NICU next to yours, so avoid comparing. Certainly chat to the parents and ask questions if they are happy to chat, but don’t sit there and think oh crap that will happen to us, or how come they are so far ahead of us.  You will find yourself comparing birth weights, current weights, gestations, CPAP or hi and low flow oxygen levels, body lengths, head circumferences, days in the NICU, the list goes on.  Babies can be absolutely flying, and then a complication comes out of nowhere and everything comes to a complete stop.  Whilst others will start out really critical then surpass all expectations and leave before you!  I saw babies that arrived at 23 weeks and babies that arrived at 42 weeks, babies that were around 500gs and babies that were over 5kgs.  There are so many factors at play, so don’t ever think that you are going backwards just because someone else seems to be going forwards.  

9) I only learnt this one after finally getting our little girl home – but your journey doesn’t end when then are finally discharged from the NICU.  Our little girl went home on low flow oxygen, and she will be on it for at least 3 months.  So everywhere she goes, an oxygen tank is never far behind her.  For some strange reason I thought that having a NICU baby meant that they are now fully trained babies.  They are used to nappies, feeds, noise, light and being handled.  Whilst this is true to some small degree, they are still teeny tiny little babies and need a lot more care and attention.  Whilst we now have to use their corrected age for everything, and remember that in the week we took her home she was nearly 3 and a half months old, she was technically only 4 days old corrected, so I had to curb my expectations.

10)  And finally, Number 10.  There is a lot of irony in me saying this next one, but funnily enough, no amount of reading, research or listening to podcasts will fully prepare you for your NICU journey.  That doesn’t mean stop listening to this podcast by any stretch, what it means is that it is your journey, and no one can tell you how to navigate it, as only you are in your situation.  Whilst I had my journey, and countless dads have had theirs before you and me, and many more will follow – only you will know what your are going though as every single baby and every single journey is different.  Certainly take on board advice and help and guidance along the way, but you need to mould it to fit your shape.  It needs to fit your circumstances and what your are dealing with emotionally and mentally.   

So apart from that last item, I hope you can take something away from this episode that helps you on your journey. you may have already encountered all items on this list and embraced them, or over looked them.  Take some time now to think about your experiences against my observations and see if there are any similarities.  Could you have done anything differently for yourself? Were there more things that you encountered that were more significant?  I would love to hear from you!