by Claire Lloyd
Week 28 of my second pregnancy seemed a good time to take a
holiday. No worries about labour
starting, and still small enough that I could enjoy walking and playing with my
very active two year old. We booked a
cottage in Yorkshire, planning to stop off at
my Mum’s in Lincolnshire
on the way back. We had a great week and
were winding down on the night before we had to leave when I realised I
couldn’t feel much movement in my womb.
Usually babe kicked like crazy between 8 and 11 in the evening, but that
night – nothing. On the Friday, packing
the car and organising my daughter took most of my attention, along with
driving to my mum’s. But that evening I
felt the same – no movements. Now I was
getting worried.
Early on Saturday my husband and I went to A&E at the local district
general hospital in North Lincolnshire. I was taken to be monitored at antenatal
assessment, where I could tell by the monitor screen and the midwife’s face
that something was not right. Up to the
ward, where more and more people gathered around the bedside – they tried their
best to be calm and positive but it was clear they were worried and this
situation, for such a small local hospital, was not one they were used to. Then came the consultant – because it was
Easter Saturday, I knew it had to be serious for him to be called. I was told that the baby had to be delivered
as the heart rate trace was dangerously flat, and was given a hefty steroid
injection to help boost its little lungs.
So Claudia Jasmine Lloyd was delivered at 5.20pm by emergency C-section, on 7 April,11 weeks
early. She had bled into my body – a
foetal-maternal haemorrhage. The level
of haemoglobin in her blood at birth was 2 (normally I believe 18) and she had
lost 2/3 of the blood in her body and her brain and organs may have been
starved of blood. Before the C-section
the hospital had contacted the regional neonatal transport team to assist after
the birth as the hospital did not have the expertise in neonatal intensive
care. Claudia was to be rushed to the
nearest level 3 NICU as soon as she was stabilised – the stabilisation took six
hours. The first time I saw my daughter
was at midnight, for five minutes, before she was taken in the ambulance to the
other hospital. Just before then, the ambulance
team and the local midwives had asked me and my husband about baptism
arrangements if Claudia didn’t make it.
We were left in shock. My husband
stayed with me for a while on the postnatal ward and then left for my mum’s to
get some rest – he wasn’t allowed to stay with me. I lay awake most of the night, constantly
worrying for Claudia and hormones raging to cuddle and feed her, while others’
babies cried around me. The morning
after my op I was presented with a breast pump.
I have to say that expressing milk was the last thing I wanted to do – I
tried, failed, cried and slept.
The following day I was transferred to the hospital to be with Claudia,
and to continue my recovery. The first
time I saw my precious baby there was in an incubator, on total oxygen. Her face was completely covered with a mask,
hat and wires. It would be five days
before we saw her hair for the first time.
Steve and I were shell-shocked.
Claudia, 1 day old
The midwives there gave me more realistic advice about hand expressing
using a syringe. I expressed 2ml of milk
in total over 8 attempts – but Claudia was not yet on milk feeds, rather on
fluid TPN, so the precious colostrum was yet to be given to her.
Claudia’s day to day condition, amazingly to us, improved quite
rapidly. The breathing support she was
on was lowered day by day. On her tenth
day she was out of intensive care status and officially high dependency (still
sounds scary but it was a real landmark for us). She transferred from TPN fluid feeds to my
milk – 0.5ml per hour at first but ramped up really quite quickly – and we were
soon able to help feed her using a syringe of milk which was administered
through a mouth or nose tube. We also
helped with her “cares” – changing her tiny nappy, wiping her mouth and
nose. We weren’t able to pick her up
until day three.
We spent as much time by her bedside as possible, while trying to
preserve some semblance of normality for our two year old. For me, this normally meant mornings with
Claudia, lunchtime and early afternoon with Beth, and late afternoons/evenings
back at the ward, interspersed with eight expressings of milk per day. When medically appropriate, the hospital
encouraged lots of skin to skin contact (kangaroo care – basically slipping
baby down our tops) – I spent many a long evening into the small hours with
Claudia close to me, as did my husband when childcare permitted.
Kangaroo care with our tiny 3lb baby
The longer term prognosis for Claudia was set out for us. Due to her haemorrhage, she had been starved
of oxygen to the brain. Ultrasounds had
indicated “bright spots” on the brain which could develop into cystic brain
damage. In Claudia’s case this could
lead to physical or learning disability, including conditions such as cerebral palsy. But only time would tell.
The hospital was very keen to have us transferred closer to home, so it
was on day 14 when, at three hours notice, we were transferred. Claudia travelled in the ANTS (Anglian
Neonatal Transport Service) ambulance, and Steve, Beth and I followed down the
A1 with a car full of holiday packing and two freezer bags of expressed milk.
Beth got a “ride” in the neonatal ambulance!
We got to the hospital on Friday evening and were introduced to Claudia’s
new home, cot space 9 in the special care baby unit (SCBU), where she would be
for the next six weeks. It was to be
quiet for us in that space – this hospital had a restricted visiting policy in
place, which meant that Beth couldn’t visit her little sister at all. Adult visits were less restricted than in our
previous hospital, however, so grandma got to have her first cuddle with
Claudia. Again, we all spent many a day
and late night with Claudia, sitting by her cot, giving her kangaroo care, changing,
washing, feeding.
I stayed at the hospital in hostel accommodation for five out of the six
weeks, as I wanted to be close to Claudia and spend as much time with her as
possible, but also because I could not drive after the c-section. I wanted to see my other daughter Beth every
day too; this involved two taxis, a train journey and around £45 a day when my
husband or mum couldn’t ferry me around.
The hostel rooms and flats were distinctly ordinary. Communal spaces like the kitchens were not
particularly clean, and cleaning and sterilising breast pump parts was a
particular challenge. One week, the flat
had no working toilet as it overflowed into the flat’s corridor.
Feeding Claudia, as for any premature baby, was to be
a challenge. I expressed my milk for her
6-8 times a day for eight weeks. Most of
her feeds were via naso gastric tube with some trials at breastfeeding from
week 32. The expressing was soul
destroying but in the expressing room in the Neonatal Unit, I did at least get
to talk with other mums and share experiences.
I made some pretty good friends in that tiny room. A couple of the mums had babies born at 23 or
24 weeks. If you thought 29 weeks was
scary…just imagine.
I had always wanted to breastfeed and was determined
to increase the BFs as soon as I could. I
often had to “top up” her feeds according to what I thought she took but she
was soon feeding two or three times a day from me. However, breast feeds coincided with
increased episodes of sleep apnoea (halting breathing with monitors beeping and
nurses rushing over to help) so I started to get a bit of a complex about
breast feeding which took a while to shake.
We started to see the light at the end of the tunnel at week 36. Her weight gain improved, having been poor at
first, and apnoea incidents became far less common. We were transferred into the transition ward
and after five days, Steve and I ‘roomed in’ with Claudia with arm’s length
support from the nurses.
Home time – leaving SCBU, June 2012
We were discharged in early June, and coming home engendered a mixture
of delight and fear. Having had a baby
already, we thought we knew what to expect, but every child is unique, and our
darling, fragile, prem baby was very different to care for from our first
beautiful girl. It was like learning to care
for a newborn all over again. Claudia
liked being held and worn, and would not sleep by herself for a good eight
weeks, even in a pram or car seat. We
got through the early days though, with the love and support of friends and
family and lots of (non-alcoholic) beer and ice cream.
When at home, we were under the care of the neonatal community team
until Claudia’s feeding tube came out. I
expected to be able to increase the breastfeeds and decrease the tubes as
Claudia had more energy. However, as
soon as she came home Claudia seemed to ‘forget’ how to feed from me. This was mortifying – I cried through many an
attempted feed before I gave her a bottle of my expressed milk and saw her gulp
it down. We thought at first that we
might have to feed her this way permanently but with advice and support we
re-established feeding at around three weeks adjusted, and Claudia is now fully
breastfed. Apparently if babies don’t
feed well from mums at birth there is a ‘window’ between four and eight weeks
where they get the feel for it again. I
would recommend that anyone who has problems feeding their babies at birth
tries again at this stage.
Claudia’s journey is really only just beginning. We won’t know whether she will have any
disabilities until later on in her life.
We need to be particularly watchful coming up to her developmental
milestones such as walking and crawling.
So far, she has smiled, kicked, batted and held her head up as we might
expect, but her MRI scan indicated, as we feared, cysts on her brain which may
cause long term problems. We are being
supported medically by our local hospital, but all we can do is care, love,
hope and pray from here.
Claudia August 2012
