Heidi was born at 27+2
weeks gestation and weighed 2lbs. When we met for the first time I could just
about make out a tiny scrap of red through the condensation on
the incubator walls, and under all the tubes and wires and a green
hat that seemed to cover her entire body.
That night I went to sleep
still hooked up to drips and clutching a picture of my daughter in my hand. The
next day when I visited the NICU again I was able to take in a bit more, the
doctors came to talk to me, Heidi had to be ventilated at birth and a brain
scan had shown that she had a brain bleed, a grade 2 intraventricular
haemorrhage. It was explained that the next few days would be critical, they
would keep an eye on the bleed to make sure it didn’t get any worse, also she
wasn’t weeing yet which was a problem. The next few days were a blur of anxious
waiting and drug induced hallucinations, but Heidi improved, she started to wee
and was weaned off of the ventilator and
onto cpap. That night I was also allowed back onto the maternity ward, and
could walk for the first time. That night I went to sleep feeling marginally
more relaxed… only to be woken a few hours later, less than 24 hours after she
had been weaned off the ventilator Heidi had a collapsed lung and had to be
ventilated again. It was a scary night, but they managed to stabilise Heidi and
a few days later she was back on cpap. Heidi progressed well and at 8 days I
was allowed to hold her for the first time, although it was very much a case of
being in the right place at the right time. A pillow was placed on my lap, and
Heidi was placed on the pillow, my job was to hold all the tubes and wires, it
was a far cry from what I’d imagined my first cuddle to be like and miles away
from the kangaroo cares I would come to love. I held her for the time it took
the nurse to swap her incubator for a clean one.
For two weeks there were
long lines, transfusions, canulas, light therapy, scans, antibiotics and
numerous other things, and then Heidi was well enough to be promoted to HDU.
Heidi continued to do well
in HDU and managed to have breaks from cpap and was tolerating her milk well.
About 2 weeks after she was promoted Heidi contracted nec, luckily she was able
to manage this with just antibiotics and 10 days off feeds, although she was noticeably
more ill during this time. Again she began the slow progress.
Then came the day my world
fell apart. At about 6 weeks I had the phone call every parent fears while
their baby is in NNU, it was a Saturday morning and I was just getting ready
for a day with my baby when the phone rang. Before I answered I started shaking
and then the nurse simply said ‘you need to get here now’ no information was
given when I asked, I was just told that I needed to get to the hospital as
soon as possible and she then made sure I had transport. I sat in the car with
my mum shaking and praying that we would make it to the hospital in time. The
journey to the hospital took half an hour, I walked into high dependency to see
the screens up around Heidi and a team of doctors and nurses doing CPR on her,
they had been doing this for at least 30 minutes. The doctor told me that Heidi
had developed pneumonia and sepsis, and as a result had a cardio respiratory
collapse. This basically meant that her body and internal organs were shutting
down. As well as the severe chest infection, severe sepsis and failing organs,
there were added complications. As I stood looking at this gray wax doll that
had taken my baby’s place these complications were explained to me, because of
everything shutting down things inside Heidi had started to contract and
because of this they were having problems intubating her, if they continued to
have problems with this there was nothing more they could do for her. I was
lead away to the ‘quiet room’ while they continued working on Heidi, I sat in
this room for what felt like hours repeating mantras in my head, alternating
between ‘that wasn’t my baby’ and ‘I don’t want her to die’ eventually the dr
came in and told us they had managed to ventilate her and she had been moved
back into intensive care. She then went on to explain that because she had gone
so long with such low levels of oxygen there would be some brain damage, they
worried that the extent of the brain damage would mean that Heidi wouldn’t be
able to breathe on her own, again if this was the case, there was nothing more
that could be done for her. I was told to prepare for the worst as they didn’t
like her chances of surviving the next couple of days. They wanted to transfer
her to a more specialist hospital, but she was too unstable to travel, it felt
like a lose/lose situation. Then we were told that they were unable to place a
longline, they needed this to give her the drugs she needed to fight the
infection, and without them she had no chance of survival. It was like being
repeatedly kicked when you’re down. One of my poor friends that I had made in
HDU came up to me in the milk kitchen as I stood like a zombie washing
expressing equipment and congratulated me on Heidi being promoted to Low
dependency, I didn’t know what to say and just walked away (luckily she understood
and we’re still friends). The days passed with me not talking to anyone,
sitting by the incubator and watching my baby fight for her life. Doctor after
doctor came to try and place a longline in multiple places on Heidi, none could
do it. The head consultant was called in from his time off, and turned up on
his motorbike in jeans and leathers to try, again no luck, they tried to get a
doctor down from Bristol
to do it, but none could come. They kept trying for 3 days, eventually shaving
her head to place the longline there, they couldn’t do it. Again we were warned
that we should be preparing for the worst, but amazingly the doctors managed to
give her the highly toxic drugs through canulas, she needed about 8 in at a
time and they frequently needed changing as the meds would cause the canulas to
tissue in a matter of hours. Heidi still has the scars on her legs from the canulas
that tissued and left her with chemical burns, what once covered the whole of
her shin is now a tiny scar just over an inch long. We call it her lucky scar.
Then even more amazingly Heidi started to take breaths over the ventilator and
when she was well enough for a brain scan the doctors were gobsmacked to find
that there was no brain damage. My little miracle baby had surprised everybody
and pulled through when nobody had expected her too. Once again she was weaned
back onto cpap and I began to bond with the baby that I had started to grieve
for. After a couple more weeks she was once again promoted to HDU and then
eventually Low dependency. There were a couple more hiccups along the way, but
none quite as spectacular as ‘the collapse’.
At 12 weeks, the day I had
prayed for became reality, and I got to bring Heidi home, she weighed 4lb 7oz,
wasn’t on oxygen and was surprising well for a little girl who had been through
so much. At home Heidi thrived, and although she had poor weight gain, delayed
development for the first 2 ½ years and has spent a substantial amount of time
back in hospital skating closer to the edge than I’d like, and has yet to be
signed off from her consultant, I am unbelievably proud of the extremely happy
and (mostly) healthy little girl she has become. She changed my life and she
really is my little fighter xxx
