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 headbutt, 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 our baby 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 E 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.
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