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A guide to 'surviving' your time in NICU

I originally wrote this piece and shared it on the Selfish Mother website when I first began to blog at the beginning of March. I have since revisited it, and edited the hell out of it. I have learnt so much in such a short time from some amazing people and decided I wanted to share this again, but to share the best version of this I could. I want it to help people, and for others to relate to it.

There are many articles and posts that others have written on ‘How to survive your time in NICU’. I am not sure ‘survive’ is the correct term. Did me and my baby ‘survive’ NICU? Yes, we did. But my time as a NICU mum didn’t end when we came home. Nor did it end when my son had follow up appointments or lifesaving surgery. Nor will it leave me when he will have to have yearly check-ups. It is still with me in the flashbacks, the nightmares, the memories and when I am talking about my son’s first few hours/weeks/ months of life.

I want to help those who are finding themselves in the same position we did. I want to be honest, brutally honest about how we tried to cope. That is not to say you will be feeling the same, or you agree with what is being said. These are my personal opinions based upon the journey we took.
Many of these articles I found on-line are generally written by those who have experienced the life of NICU, normally with a premature baby. Some have been written (by their patronising tone) by someone who understands the inner workings of NICU but hasn’t actually been a NICU parent. They haven’t actually lived the life of your baby being hooked up to god knows what with the gut wrenching fear that you think your baby will die and there is nothing you can do to stop what is happening.
There are many reoccurring themes in the advice to those with babies in NICU and this is what I will try and give you my honest and realistic opinion on.

I have to say I was quite alarmed to find a ‘Do’s and Don’ts guide to surviving your time in NICU. This is utter crap. Whatever you decide to do is right. If you do not really want to do something that is okay. Everyone is different and some may not find the below useful, some may find it the best advice they have ever been given. I will tell you truthfully from my own experience. The fact of the matter is, there is no right or wrong way to deal with this. It’s shit. It’s the worst time of your life. Do what you think is right, and what you can to get through this. Nothing is wrong with that. This is not flat pack furniture we are talking about; this is your life.
So the following were listed on many of the websites under the ‘Do’ section;

Get to know Nurses– There will be a high staff turnover with day shifts and nights shifts but if you are in there for a few days you will start to see familiar faces. The nurses from my experiences are normally happy to talk through everything they are doing and let you help out where they can. They will help explain what the Doctors have said and advise on vouchers, accommodation issues etc. They have seen this all before, they know how it works, they have some idea of how you feel. I found myself confiding in one nurse as it was easier than talking to Greg. Don’t feel like you have too though, they also respect the fact you may not want to talk. They will encourage you to look after yourself, at times I found this annoying but they were just looking out for me. Some of them you will not like or get on with, especially if you have a favourite (I did).
Ask them to get involved in infant care -such as nappy changes, bathing their eyes and mouth, this will make you feel involved as a parent and will help. I treasure some of the moments where I was in charge of his feeds, his bum changes and taking his temp. I felt like I was a normal mother.

I once went in when Elijah had been moved rooms and he had been fed, put back down and had been sick. No one had noticed and this annoyed me A LOT. They were probably over stretched but I feel like you have to tell them if you’re not happy. Every step of the way with Elijah’s hospital appts, op and various other bits I have always pushed for what I think is best, sometimes being a bit of a bitch. But do you know what? I have always been correct in doing to get the best for him. This is your baby, if you do not like something or how something is done, if you want to take over something, tell them.
Take care of yourself and make time for yourself outside of hospital by taking breaks- This one is a hard one, yes, you have to eat, shower (in Greg’s case smoke!) and it is good to get outside. I will warn you even though you are away from them you cannot stop thinking about them, or how quick it is until you can go back next to them. My honest advice if you feel like you can’t leave them, don’t; eat something before you go in, take a book for when they are asleep and sit. For as long as you want. If that’s what you feel you have to do then do it.

Most hospitals have a ‘family room’ attached where you can go sit, read a magazine or make a drink. We did not find these places very comfortable. They are full of other over anxious parents, with emotions boiling over and it’s a time where you do not particularly want to be that social. Some of these articles tell you to ‘befriend’ other NICU parents. You do sit in a room with these people but your only focus is on your child. You sort of forget they are there. You also have the awkward conversation of asking if their baby is okay, and telling them about yours and what’s wrong.

I was still in complete denial that Elijah even had something wrong with him, so I found talking to other parents really hard. I didn’t want to talk to my family or friends never mind anyone else. It’s all really hard to watch the other parents be told about a setback, or when their baby is not getting better. I had a strange type of guilt I felt when my baby was doing so well, and when we went home. It was even worse when one of the babies passed away. I felt like why have I been able to take my baby home and they have cruelly lost theirs? It’s a hard situation to even get your head around.

We spent a lot of time walking around (well I waddled) and sitting in the hospital restaurant people watching as a distraction. I did not particularly want to eat. I drank a lot of coffee, after 9 months’ caffeine free I was pretty much drunk on filter coffee every day. As some sort of punishment I used to not eat or eat as little as I could so I had some control over the situation were in. I felt so helpless. Eat as much or as little as you want, sometimes you are so distraught the very thought of food makes you want to vomit. Try and eat small and often even if it is a Crunchie from the hospital vending machine to keep your sugar up. I swore by Powerade, it helped keep my energy up without feeling like I was eating. Eventually, you get your appetite back, just do what your body tells you. Although when we were in there I think my mind had taken over and it was not my best ally.
Get involved in NICU activities and support group- In the 9 days we were in NICU, never once did I hear the word ‘activity’. If they had I would not have partaken in them. I am not sure if they think having an arts and crafts table would help. It won’t. There were chaplain and charity volunteers that come round to offer you ‘support’. I didn’t buy it, I was probably quite harsh to them so I apologise now to them, but they couldn’t help me or my baby. Especially, with their pity and looks of ‘aren’t you so hard done by’. I was already wallowing in enough self-pity I didn’t need theirs as well. I was angry, so I took it out on these people who I suppose were trying to be nice.

Even now it is only after 18 months of leaving NICU can I even begin to process all this. I didn’t go to any support groups maybe I should have but those sort of things are not for me. I was diagnosed with PTSD and am on medication. It is only after time has now passed that I feel I can try and ‘get some help and move on’. At the time your focus is your baby. Not sitting in a circle telling strangers how ill your baby is, yes they may help, yes others may relate but all you really want to do is be there for your baby.
Focus on the positives- Easier said than done, as I was in a very negative mind space. I was focused something horrific was going to happen after each bit of good news we had. I was overjoyed when each tube of Elijah’s came out, and when he was allowed to start feeding. Small things make the world of difference and you will find yourself telling anyone that will listen that baby’s feed has been upped by 20ml, or that he is now allowed to wear a vest and how the little chunk is busy putting on weight.

Bonding- Although Elijah was with me for 12 hours before he went to NICU. I was out of it for at least 10 of those so missed the first proper bonding moments. It is then quite hard to bond with a baby in an incubator covered in tubes and attached to every machine going. I always held his hand, something we still do even now if he has a rare nap on me. It’s a very intrusive time with medical staff, other babies, parents, equipment, noise, lights and cleaners all being around, therefore it may not seem like it but every minute you spend with your baby is building a bond with them.
As soon as I could, I held him and we used to sit in a chair with him on my chest for what seemed like hours. I was not able to breastfeed, but if you do or if your pumping and expressing milk all builds to the bonding experience. The hospital actively encourages it. I still feel robbed of the precious bonding moments, and I am insanely jealous of those who get to go home on the same day, or even go onto the ward; but I tried. I had small knitted triangles the hospital gave me to keep in my bra so Elijah would be able to smell me. I used to leave a t shirt of mine that smelt of my perfume in his incubator, and brought his teddies and dummies from home so it felt more like a proper crib. I felt like I was being a mother doing those things as silly as that sounds.

Keep a written record- I did not keep a written record, as I didn’t particularly want to remember the horrendous time I was going through. Some may find it helpful to keep a journal or on-line blog as each day passes. Some of the days I just did not want to remember. We have lots of photos, looking back now some of them are very hard for me to look at but I want to show Elijah one day what he has overcome. Whatever helps you, do it, I once saw a woman knitting at her child’s bedside, hay if it keeps your mind distracted for just one moment then in my opinion it is worth doing.

Don’t- I am still appalled there is a ‘Don’t’ guide for surviving your time in NICU. It is not like you’re going to NOT FEEL any of the below. It is natural and we should be accepting these feelings and not to be made to feel they are wrong. This is clearly written by someone without a clue, and who is definitely not in the real world!
Isolate yourself from your friends and family- I believe that although people can try to understand and comfort you. Unless they have been through it they really do not understand WHAT you are really feeling. You may not even want to admit what you are feeling; confusion, anger, resentment, loss of control, hurt, jealousy, worry that’s just to name a few. That’s not to say they cannot provide comfort and support. Although I pushed them away I had two amazing friends who did everything they possible could for my family when we were in hospital. From feeding my cats, to driving Greg to and from the hospital every day and even bringing me and my baby home for the first time. I can never thank them enough for what they did for us then and they are a huge part of my son’s life to this day.

If you don’t want to talk to anyone don’t. Let your partner update one or two friends and let them pass the message on to everyone. It can get quite overwhelming repeating the same update numerous times to everyone, and then seeing the replies coming in can be quite emotional. If you want speak to everyone and have lots of visitors have them. I couldn’t face anyone; I was ashamed I felt like I did something wrong. Like I couldn’t have a baby properly. Like I wasn’t a proper mother. I was clearly depressed, and dealing with a traumatic event and I dealt with it the only way I felt was right at the time; on my own.
Become discouraged with setbacks- I am not even kidding this is actually what it tells you not to do. Is it a piss take? No. Of course you are going to be discouraged with setbacks, that’s your child. All you want for them is to be healthy and to be home. Anything that is stopping or delaying that is a setback. If you want to cry, then bloody cry. If you want to scream, do it. You will be discouraged, of course you will. Accept it, that’s my advice and I think that is far healthier than trying to pretend you are not anything BUT discouraged.

Feel guilty for not being at the hospital all of the time- Again, seriously? Who the bloody hell wrote this? I would love to meet them and kick them in their patronising crotch. If you are not at the hospital, try and keep busy and remain focused on something. If you feel so guilty that you think it’s going to tear you up, then get your bloody arse back up there. It’s not worth letting it eat away at you.
Most of the NICU’s have a 24 hours’ policy anyway so if you want to go back up at 3AM then do it. I spent as much time as I could, but I caught the flu and was unable to visit Elijah for 2 days. I was at home and my baby was 25 miles away. It drove me insane, there is so many other emotions going on you need to make life as simple as you can and listen to how you feel. I wish I could go back and tell myself some of this but hindsight remains a very beautiful thing.
I could go on and on about how your supposed to feel, what you’re supposed to do (ignore that bloody do and don’t guide) that’s for sure. At the end of the day this is your journey, and you must do what you think is right. If you feel something even if it is negative, accept it you’re obviously feeling it for a reason and it’s a natural human reaction to the stressful situation you are in.

You’re doing great by the way, from a NICU Mum (who spent 9 days in NICU with Elijah in Sept 2014) x


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