NICU: answering questions from family and friends…

I’ve loved writing-up previous Q+As; I think they’re a punchy way to get information across (which I definitely struggle with, as I’m the world’s biggest waffler). It also means that I know I’m writing something that I know at least a few people are actually interested to read. So, here’s another one for you. It’s some of the questions that I’ve been gathering for a while, from family and friends, about life in NICU.

I asked people to think about the questions that they wanted to ask during that time, and the ones they had, looking back and reflecting. As with every Q+A, I’ve combined and edited questions, as there were a lot of the same, or similar, ones, just asked in a different way.

I’m hoping that this could be another easy link to share for those going through the NICU process, whether that’s parents, or extended family and friends who want a bit of insight into the situation.

How can you best support someone, with a baby in NICU?

A lot of my lovely friends and fam, wanted to know how they could help, or what to say. Therefore, I dedicated a whole blog post to that subject. You can check out NICU: How to help parents get through those first couple of weeks, here. But to summarise, keep checking-in without too many questions. Congratulate the parents on the baby’s arrival, just as you would for anyone; although the circumstances are different, the parents just see a tiny human they’ve made, and who they love more than anything.

Is your visiting time restricted in NICU, or can you be there 24/7?

I can only speak for St Micheal’s in Bristol, but I presume that it’s pretty much the same across the UK. There’s no limit on how much parents can visit, or how long they spend there (thank goodness!). I would go straight to hospital, after getting up in the morning, and wouldn’t go home until after my husband had arrived, after work, and spent some time with Rex. I only went home to shower, eat, and sleep really.

The only time that you were encouraged to leave the ward, was when the doctors and consultants did their evening rounds. This was because there would be a group of them, and they needed to discuss each baby’s health, progress, setbacks, treatments, and future plans. So, they didn’t want to cause unnecessary, or added worry to parents, when discussing the potentials, and not the definite, outcomes. And, there was the issue of patient confidentially; the neonatal intensive care wards were fairly small, and very quiet, so, you’d be able to hear a discussion from the other side of the room, about another family.

As for other visitors, there are restrictions. The ward sister and nurses need to be informed about each visit, before it happens, to make sure it’s okay. The only children allowed to visit are those who are siblings of the baby. Allowances are definitely made, within reason, but it’s not like there are set visiting hours, when anyone can visit.

How did you deal/cope with leaving each night?

Not very well, it was extremely difficult for me. I would break down as soon as I got in the lift, down to the car park. Then I would sob all the way home. I did my own “bedtime” routine for him, right before I left. But, I refused to leave if he was crying. And normally it was about 9 or 10 pm anyway; I would really stretch-out the time it took for us to leave. I hated it.

Sometimes, I’d make my husband drive me back after dinner, especially if Rex had had a challenging day, or if something had happened. I’m literally crying as I type this. I still really struggle with the thought of leaving him for long periods of time. I think being forced to leave your newborn baby every night, for months, is one of the most traumatic things you could ask a mother to do.

As soon as I got home, I’d just do practical things, like eat, shower, express milk, get his fresh muslin ready, and pick a book for him, for the next day. I’d watch something with my husband, to fall asleep to, then, it was time to get up and go and see him again.

How much contact did you have/want when you weren’t there?

I wanted constant contact, but, I needed the sleep. The nurses would take photos and videos of Rex, and would upload online over night. This would mean that when I was expressing at 3 am, at home, I had something to see; it was very comforting for me, and also helped my milk flow. We could also ring, and speak to the nurse looking after Rex, at whatever time of night or day. We understood that if anything happened, that we needed to know about, they would ring us.

Otherwise, we were to assume that all was well. However, I obviously still rang a lot. Some nights were more difficult than others, and I just needed the reassurance. Because Rex was in intensive care, he had his own nurse. This made it much easier for me to contact someone, who knew exactly what was going on at that time.

How much did you do/get involved with, regarding his care?

As soon as I was able, I did every bit of practical care possible. Both my husband and I were trained by the nurses to administer his food and medication; we had to be signed off, and were good to go. So, I’d tube feed him, give his meds, adjust his breathing mask if I felt it looked uncomfortable, wash him (this was a very very gentle wipe all over), change his nappies, and move his wires and tape them elsewhere so that they didn’t irritate the same bit of skin. I made up his “bed” with a muslin I’d brought in, and try to move him so that his breathing was as easy as possible. And, I have as much skin-to-skin (cuddles) as I could squeeze-in.

My husband is super confident when it comes to asking questions, and, he ensured that we knew exactly what was possible in regards to what we could do and help-with. We were both very much involved with Rex’s care, when we were there.

How did you trust the nurses to look after your baby, when you’re not there?

There was no other choice. At first I was so overwhelmed that I didn’t have the mental energy to question anything anyway. However, it didn’t take long to realise how incredible the NICU nurses were. They became family; I really bonded with some of them, and they’d look after me just as much as Rex on some days. I could talk to some about absolutely anything; they would hold me when I was sobbing, and they helped me start to breastfeed. They knew us as a family so well by the time we left. I actually really miss them.

There was also constant communication and endless care, so I had no issues of trust with them. I just hated leaving him, but, I was happy with who I was leaving him with.

How deeply concerned were you about Rex’s survival, and, were you happy with what the doctors were telling you?

Marv and I did not discuss anything about Rex’s chance of surviving, the whole time we were in NICU. And, it’s only in recent months that we’ve really mentioned it at all. As soon as we’d been to visit him for the first time, it was very clear that it was going to be a day by day, actually, an hour by hour, situation, in regards to what we knew about how well he was doing. The doctors were honest; they were not negative or positive, so we never felt like we knew what to expect, because the doctors didn’t.

Therefore, we lived in each moment. I felt well informed; and we both understood what the machines were measuring, and what colours and numbers were good or not so good. I honestly couldn’t see past each day, so Rex surviving or not, was never lingering in my head. If he was alive in the moment, that’s all I could ask for.

I could leave Rex one evening, and he’d be doing well. Then I’d come in the next morning to find he had sepsis and I wasn’t allowed to hold him that day. Then by lunch time, myself and a nurse would be doing our best to revive him, before a doctor and more staff rushed in to help. Then by the following lunch time, his medication would have worked, and he’d be having what was considered a good day again. But, he’d survived. I think, to us he had to survive, because the other option was literally unthinkable.

Did you worry about the effects of Rex’s prematurity, in regards to developmental issues and disability?

We were told early-on that the doctors didn’t feel that Rex had a high risk of long term disability. I believed what they said, and was so focused on the things that they were concerned with, that that never really crossed my mind again. In regards to his development and any learning challenges he might face, it wouldn’t be linked to him arriving so early; it would be the same as it is for any child, when things are diagnosed further down the line.

How did you adjust back to reality, once home, after spending so much time in NICU?

With a thud! I assume it was very much like anyone, who has just brought a newborn home. However, we had a lot of medication to give Rex, and he was still very tiny, so we had NICU health visitors every 2-3 days for a few weeks. I think we were just so overjoyed that Rex was well, and we could all be together in our home.

It was nice to get into our own routine, and to be surrounded by comforting things, rather than everything that comes with hospital life. It was a huge change, but, we were ready and had no other choice but to get on with it. I think that’s still how we’re doing things, haha.

Looking back, what would have been the 10 must-haves for mom and baby, that made daily living easier?

I did write a post about items you could get, for a new mom in NICU; take a look here. However the following would be my top ten, that I couldn’t do without each day:

• Fresh, soft muslins (they let me leave something from home for him, and were a great blanket for us both, during skin-to-skin)
• Reading material (for me and Rex)
• Snacks – chocolates, sweets, crisps (high-carb, high-calorie)
• Comfy and accessible tops/dresses (it made skin-to-skin simple)
• Cosy socks (I’d put my feet up and recline on a chair with Rex for hours at a time)
• Hand cream (I know everyone can now relate*, but there was A LOT of hand-washing in NICU)
• A big, refillable water bottle (you can’t take anything into NICU, to eat or drink, aside from water)
• A cool bag for transporting my expressed milk, from home, into NICU
• My phone (I know that sounds silly, but, it was my only form of contact with family and friends for months; a bit like now really!*)
• A pound, or a shopping trolley coin, for the lockers in reception (I would kick myself, every time I forgot one)

Any advice from Marv (my husband) for the dads?

Yes! I loved this question, so I decided to interview Marv.

Did you sit and discuss things as a couple, because you were going through so much stress and did you have a strategy for coping together?

The honest answer to this is no. We knew that we were there for each other; Marv was probably there for me, more than the other way around. Our communication was really open, all of the time; we’d tell each other if and why we were particularly struggling one day. I would explain what doctors had told me, each evening when Marv arrived in NICU, and we’d discuss if we wanted to ask any more questions. And, there was always love and affection. However, there wasn’t a moment when we decided how to go about things. As I mentioned previously, neither of us had any idea of what the future held, so we just had to deal with each day as it arrived.

It wasn’t all doom and gloom though. Both of us experienced some lovely, new parent, moments in NICU. And I think we held onto those, and talked about how amazing our baby boy was. It was definitely survival over strategy.

Do you think that the hospital had enough time for you, regarding your fears and concerns?

Yes. There was always someone willing to discuss things with me and my husband. I had more access to the doctors and surgeons, because I was there all day, whilst Marv was at work. However, as I said previously, Rex had his own nurse, who was there to answer questions, or if they couldn’t, would happily contact someone who could. The information and answers, weren’t always what we wanted to hear, but, it was always honest and thorough.

*we are all currently in lockdown, due to the coronavirus pandemic.

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Let me know if you like these question and answer style blog posts, as much as I do! I’ve a few people I’m thinking of interviewing about our time in NICU, for even more perspective on what happened.

Peace, love, and he survived and thrived, Fay x