Please note that this post about my NICU baby may prove a trigger for some. In my case there is a very happy ending to our experience. My daughter was cared for by First Touch an amazing charity saving babies every day.
It has taken me a while to write this post and I wasn’t even sure whether to do it. It is an emotive subject, but this is an experience that has shaped me certainly and affected me as a mother and as a human so I felt it was important. I hope that it might serve to help someone else who is facing this journey or help to explain to those around them how a mother feels when they have a baby in the NICU.
As soon as you find out you are pregnant with twins things shift up a gear. The term high risk is used and medical professionals start to discuss risks with you. In my case risks were decreased as they were fraternal twins and had separate sacs and placentas so the food and bedding arrangements were not an issue! The risks were still there though and it is daunting. The biggest risk, for us, it seemed was the chance of premature labour and birth and so we started to mentally prepare for the chance that one or both of the twins becoming a NICU baby.
It was a worry throughout the pregnancy; that something could go wrong. I didn’t want to even tell the boys that there were two babies for ages just in case… We talked a lot during that time about the fact that we might have a NICU baby or even two babies in the NICU and I thought I was prepared for this, but no! I am not sure any amount of talking can get your ready for how it feels. Anyway as the due date approached with all still going well I started to relax about the babies and worry about me! I was facing my third C section and due to complications the first time round that ended up with an emergency C section I am rather frightened of childbirth. Goodness knows why I put myself through it 3 times (never again!). I should add that I am afraid of most things, but do them anyway. If not I would never do anything as my anxiety is extensive. Anyway it was my fear for me (along with indigestion, heartburn, needing the loo every 20 mins and a foot under my rib) that kept me up at night. Those twins were big (for twins) and seemingly very healthy and so I thought – what could go wrong?
On the day the girls were born everyone is theatre was very relaxed, apart from me of course, and there was a bit of a buzz in the air as it was twins. We got to go down first as we were the highest risk which meant I didn’t have to wait too long, but I was very nervous. There was a big team in the operating theatre waiting for us including a pediatrician and midwife for each girl and the usual surgeons. Seeing two of the baby assessment cots waiting for them was quite surreal.
The excitement in the room reached fever pitch when twin one arrived. It was a girl – our first girl and I had been sure it was two boys. We were all so giddy when twin 2 arrived and was another girl to complete the set of two boys and two girls that we forgot to do the weighing in picture for her and so we had to get her undressed again and repeat! All went great and so we were taken straight to recovery with me holding my two beautiful babies and thinking we were in the clear.
As soon as I tried to feed twin 2 I knew something wasn’t right. She was kind of grunting and was struggling to feed. I raised it, but the midwife dismissed my concerns. This was not my first rodeo so I would not be silenced and kept pushing for someone to take me seriously. As soon as we got up to the ward I removed the super tight swaddle that they had done and took a proper look at her. Sure enough her chest was recessing every time she took a breath and her throat was tugging too. I don’t know how or why, but I was super calm in that moment and just firmly instructed my husband to take the baby and find someone now as she was not breathing properly. I didn’t know at that point I wouldn’t get to hold her again for days…. It was the start of a nightmare that I can hardly stand to think about. It has taken me 3 years of distance from this event to even be able to write about it and still it makes me get anxious.
Initially though I wasn’t too worried as they said she just needed a little bit of oxygen for a bit and would probably be back up with us in the morning. I was taken down to see her that night. She looked like a fraud being nearly 7 pounds she was like a giant and looked so healthy. The NICU is a daunting place the first time you go not least because of the other babies. Some of them are so small, but the major scary thing is all the machinery. All the beeps freaked me out. In fact they still do. The sound of the beeps was all I listened too and I would panic each time they didn’t sound regular. There is a tangible sense of seriousness in the NICU; the nurses were amazing, they explained everything and were very reassuring. Still there is something completely heartbreaking about not being able to take care of your baby. To have her first 24 hours (and alot more) not be with me or her twin feels devastating. I had the distraction of another baby which was a god send at times, but also meant I couldn’t get much rest so emotions were even more of an issue as I was shattered.
Day three was when it all went wrong for my NICU baby. For as long as I live I will be able to feel the terror I felt when my mum called up to me in my hospital room and said ‘they have to ventilate her’. My head began to spin and I couldn’t breathe. I felt like the world was closing in on me. Panic started and I lost control. As I am generally an anxious person I have developed techniques of controlling it and one is to set limits for my anxiety. For example I am afraid to fly, but my limit is as long as the crew are up and working you are not allowed to panic even a bit. If they have to sit down due to turbulence I therefore lose my shit and have a bit of a panic. In this case my limit was: as long as she can breathe for herself it is all good so when she couldn’t I was terrified
My fear of losing her was so all encompassing I just wanted everyone to leave me alone including her twin. For that I will always feel guilty, but I just couldn’t cope with anyone else needing me. The rest of the world needed to be shut out so that I could continue to put one foot in front of the other. I am ashamed about how I felt, but in that moment I just wanted to run away and hide. Of course I soon got used to the status quo of the NICU and took twin 2 home where we were able to have actually quite a special time together which you wouldn’t typically get with twins as in the nights it was just her and I.
Seeing your baby ventilated
The first time I went down to see my nicu baby ventilated is a time I wish I could block out. Nothing can truly prepare you for the shock of seeing them. She didn’t look like herself anymore as she was all puffy from the drugs and all the tubes – wow it is scary stuff. I hope that this is the worst experience I ever have with my children. I was afraid to touch her and afraid to love her in case I didn’t get to keep her.
Fortunately for us they quickly worked out what was wrong a right pneumothorax (collapsed lung to you and me) and for the doctors this was almost routine. They knew how to fix it and so although they wouldn’t commit to saying she would be ok they were certainly more relaxed in the way they spoke about her and so we could all breathe again. It became a waiting game. She was ventilated for 4 days which unfortunately left her with scar tissue on her throat which required 3 operations (the first at 8 weeks old). This also means that croup is her worst enemy and means that we have a hospital bag packed for her at all times during the winter, but as she grows this problem will also dissapear.
Once she came off the ventilator we knew the worst was over. She doctors began to talk about when and not if she would move to HDU and then the special care baby unit. We got to hold her, change her nappy, feed her, basically care for her. This was so important to me as I got to love her and I could be her mummy. We were also allowed to put the girls in the cot together once she was in special care and that was so special to me. Of course they won’t remember, but I like to think it was good for them both.
Our little lady spent 4 weeks in hospital in total at the start of her life (with three more operations and PICU stays to follow) and of course her sister and I were discharged so I had to leave her there. Oh how I sobbed. It was the worst feeling to go home and leave her behind, but between my husband and I, family and friends we were able to make sure that she wasn’t alone except from around 11pm when she would go to sleep and then the nurses cared for her. It is still a bit heartbreaking to know that when she cried it wasn’t me who comforted her, but I know the nurses were amazing and they got her sleeping through the night except for feeds so that was a bonus.
The funny thing about the NICU and SCBU is how quickly you become institutionalised. How quickly spending all day in a hospital becomes the norm and the NICU stops being the scary place it once was. After getting used to it I could see the happiness that is created there as well as the sadness. I could see how much the nurses gave to the babies and how amazingly they were cared for. It isn’t just a job for them and the doctors and nurses there are my heroes. They not only cared for the babies, but also for the parents.
My time in the NICU also had its amusing and surreal elements…. I was issued with a pumping kit and a little tub to carry around my tubes in so I could connect to the hospital pumps. Then every time I needed to express milk for my little lady I would go to the ‘Milking Room’ not what they called it, but it was literally like being a dairy cow as you would go into a little cubicle (divided by curtains) and often you would be one of several women in there; no one was ever talking and so you were just listening to sound of the machines. All very odd and it made me chuckle every time.
Having a NICU baby has changed me. I now know what can happen and truly understand just how much I love those little loons. My anxiety about something happening to them all went through the roof and it has taken until now to get that back on an even keel. Even writing this post I actually feel sick with the fear. I squeezed that little lady extra tight and couldn’t be more proud of her for winning that battle. I also felt guilty for ages; guilty that I wasn’t with her, guilty that her sister didn’t always get my attention first, guilty that I spent so much time at the hospital, guilty that when I was playing with the boys I just wanted to be back at the hospital… I let all that and the stress of the situation eat me up for a while until I wasn’t really me anymore, but over time I have let myself off the hook. I know I did the best I could for each one of them and that I got through it the only way I knew how. I am not sure that anything can truly prepare you for having a baby in the NICU, but if you are in this situation know that you will get through it, you are strong enough and if I could share one tip it would be to try to get as involved as possible with your baby’s care. This really helped me to feel like her mummy and let me feel like I was doing something to help her. Apart from the abject fear it was the feeling detached that bothered me most.
I am pleased to report that this sick little lady is now a very cheeky 3 year old who spends much of her time with a hand on the hip or arms crossed whilst she tells you about the world according to her. She has been left with a narrowed airway as a result of intubation and colds/ croup are here enemy so she still scares me half to death every so often. She leaves a trail of attitude behind her which drives me crazy, but maybe its that little spark that helped her to fight and get through being a NICU baby.