The phantom kick. Just when you start to have a good few days, days without flashbacks, days without tears, days believing you are a ‘normal’ family, and then it happens again. The phantom kick. People keep telling me it is wind. It’s not. I know what it is and it kills me every time.
I miss the movements so much because it was something I was never meant to experience – they are also the reason my little girl is alive today.
In November 2014, after 3 painful operations to remove severe endometriosis and a total of 25 sub mucosal fibroids we were told that due to the extreme scarring in my womb lining, along with the rapid regrowth of my fibroids the chances of a fertilised egg implanting were around 0.1% We hadn’t really considered or decided if we even wanted a baby until that point, and here we were being told that a surrogate would probably be the sensible choice. We were sent to an adhesion specialist to see what advice he could offer and whether IVF would be worth a shot. In January 2015 I was waiting for day 1 of my cycle so we could begin IVF investigations………day 1 never came! A determined little bunch of cells had made itself comfortable in my scarred lining! Although we were permanently on edge during most of the pregnancy, as well as on an abundance of drugs, as soon as those first movements started it was all so worth it. I could not wait to get snuggled on the sofa each evening, with my hands on my bump feeling and cherishing every head butt, kick and punch.
And so it seemed incredibly cruel that the universe was to bring my cherished pregnancy to an abrupt end. On the 28th July 2015 my baby was quiet. Breakfast, a coffee, lunch, cold water, fizzy drink and laying on my side did not wake her up. 40 minutes after walking through the doors of the hospital I was in theatre, and half an hour later my baby girl was born via crash section at 29+4weeks gestation. Luckily the skilled anaesthetist had managed an incredibly swift epidural while the theatre staff scrubbed in, so I stayed awake. We did not know at the time, but Emma did not breathe for 8 minutes and her pulse was incredibly low. Once she was stable we heard a small whimper, before she was whisked away to the NICU. It sounds crazy to me now, but once we knew she was alive, and once the atmosphere in the theatre changed to that of relief (the radio went on!), I really thought I’d be taking my baby home in the next few days! I had no idea the journey we were about to embark on, and this is coming from a nurse of 15 years!
Nobody warns you about having a premature baby. As the last in my group of friends to have a baby (and having been a birth partner twice!) I knew all about nightmare births, forceps, meconium, stitches, c-section recovery, breast feeding troubles, yet I knew nothing about premature babies. Surprising really, given that two of my friends had walked their own NICU journey. One of the NICU nurses came in to ask if I had planned to breastfeed while I was still open with my insides showing on the theatre table! We didn’t know! We hadn’t even been to NCT class yet! And that was the beginning of the surreal NICU journey we had suddenly found ourselves on.
I can’t really remember the first time I saw my baby in the NICU, no matter how hard I try. I vaguely remember being told that all her initial scans were normal, and that she had 6 toes! She also had an incredibly swollen leg where they had struggled so much to get her out. It was thought for a small amount of time that she may lose the leg, we didn’t care, we just wanted her to survive. The strongest feeling I remember is that I just didn’t know her. I didn’t know who this tiny foetal like baby was. They kept telling me she was mine, but how could she be? My baby was still inside me. All of my expectations of that ‘huge rush of love’ were among many of my expectations which were now crushed. I felt nothing but shock, fear, guilt and that I had been robbed of my pregnancy. I could not understand why nobody seemed to understand me and how I felt. I kept getting told ‘yes but she’s here and she’s safe.’ I could also not understand why I kept getting cards through the door with ‘congratulations’ adorning the front, when in my head there was nothing to be rejoicing about
Once out of ITU and in to HDU, and having battled RDS, sepsis, reflux, apneas and bradycardias, we soon fell in to NICU life. Twelve hour NICU days soon became the daily routine of express, feed, cares, consultant round, feed, express, coffee break, feed, express, lunch break, afternoon visiting, express, and then try to go home without my baby yet again. This is perhaps one of the hardest things, to leave your baby in the hospital. It never got easier, not once in 46 days.
Bizarrely on the day we were due to take our baby home, the day we’d spent 7 weeks dreaming of, I was so upset! We had become institutionalised, and this NICU life was our new ‘norm’. The thought of going it alone at home was terrifying! Luckily Emma has made it incredibly easy for us. She is an amazing baby, and each day I am totally in awe of her, and everything she has battled through. I can’t bear it when people say in jest ‘it’s a hard life!’, when they see her sleeping peacefully with a tummy full of milk. Yes it was a hard life for her, and look how amazing she is!
I don’t think our NICU memory will fade just yet, we are currently battling through our first winter, terrified that she will get a cold bad enough that will hospitalise her, and every milestone reached sees us breathe a huge sigh of relief. I still have my own internal battles to fight too. The flashbacks and negative feelings have reduced slightly, but we still have a way to go. The hospital have been great, and have provided counselling for us so we can work through our feelings. And I hope that sometime soon those phantom kicks will disappear.
Since discovering ‘The Smallest Things’ things are a little easier. Reading the blogs has helped no end, and I love to see the great work that is being done. It makes me quite passionate about prematurity awareness and supporting other NICU mums as best as I can. A colleague of mine has recently had her baby at 23 weeks, and suddenly I knew I could turn my experience in to something positive, by supporting her as much as I can.
NICU makes you a different parent I think, all the small things are indeed small things, not worth getting stressed about. The fact that she breathes, eats, smiles and moves is good enough for us! If she cries through the night, so what?! We are incredibly lucky that she can. If she clings to me all day and won’t be put down, so what?! I have a lot of cuddles to make up for. We continue our life like we did in the NICU, one day at a time, each day is a new blessing and our house is full of love, kisses and incredible gratitude.
If you like to help raise awareness and support other families through neonatal care please do share Michelle’s story – Facebook, Twitter……
If you have your own story to share, contact Catriona at e. firstname.lastname@example.org