When EJ and Colin were told their second daughter, Shalome, would be born with Holoprosencephaly, doctors suggested that they terminate the pregnancy. They refused, believing their role was to love the gift of life God had given them. Doctors told the couple that their daughter would have a short life span (possibly only weeks) but Shalome has surpassed all expectations and the family recently celebrated her second birthday. She recently underwent a gastric operation to allow her to be fed via a Percutaneous Endoscopic Gastrostomy (PEG) where a tube is passed into her stomach. However, the operation was cancelled an unbelievable three times. Annoying for anyone, but especially for the Harwood’s who have to pack all of Shalome’s equipment, travel and arrange childcare for Shalome’s older sister, Faith.
Here, EJ shares excerpts from her diary…
Shalome has been very turbulent recently. Seizures have increased and her pain/tension has increased. She is losing weight. Not a day goes by without a seizure in which we could lose her.
From the day we were given Shalome’s op date, we didn’t have a peace about it. But we had a peace about Shalome being PEG fed. We thought we were prepared for either outcome and we have semi-planned her second birthday and funeral. It seems we weren’t prepared: no HDU bed available and have been sent home.
Operation has been cancelled whilst we were on route. Shalome’s not put weight on in 17
months but she’s grown in length by nearly 19cm. She doesn’t swallow naturally. To give her meds she has to be on her back (which can give her seizures) and be crying so you can get
to her gullet with the syringe. She coughs and chokes to swallow. To feed her she has a special Nuk bottle, you hold her with one arm, put the bottle in her mouth and balance it on your chin so with the free arm you can squeeze her cheeks in.
I’m lost for words today. I know there are more needy kids than my own, another baby needs ICU and my heart goes out to them. I do see the bigger picture, I hope you do too.
The reality for us has been: unpaid days off work for Colin and a nursery that goes above and beyond. Countless hours of planning, working out logistics of two kids an hour away from each other, cancelling appointments (viewing schools, head pod systems, medical appointments, respite, rearranging work, booked classes and giving away gig tickets for Colin’s birthday) diarising 11 incredible babysitters for two weeks to sit in with an asleep toddler whilst I zoom back to hospital. Then the logistics of the car seats’ whereabouts!
“There is a time for everything under heaven. He had made everything beautiful in its time. He had also set eternity in our hearts.” What a difference a hope makes. The anchor of our souls.
Phone call from Leeds General with a fourth date.
“Hello this is Leeds General Infirmary; I’m just ringing to confirm you still want your daughter to have surgery tomorrow? Oh, you do? Well I regret to inform you that Dr D was sent home ill today and all his surgeries for tomorrow have been cancelled.” Sweat on.
“But, we have managed to arrange for another surgical team willing to take on Shalome at 7.30am tomorrow. If that’s ok with yourself?” Sweat off.
Operation day. We’re at Leeds General Infirmary.
The operation took forty minutes and went well.
The really rocky part was the aftermath of lack of meds which surfaced in the afternoon. Normal screams leading to seizures which happened throughout the night. Shalome does have a high pain threshold – but I was keen to reemphasise the amount of pain relief she is already on, so this was met and then increased.
Shalome is currently having her first Gastro feed.
Having a slow feed and resting. Being discharged to Forget Me Not this afternoon!
Shalome needed sedation last night and this morning. I’ve moved into Forget Me Not Children’s Hospice for the week with Faith. Shalome is not accepting feeds. Looks like we’re heading back to hospital. Shalome isn’t stable post-operation and feeding is not established. However there are no beds in intensive care so we’re staying here for now.
Shalome has got her fight back! No switch to hospital after all! She’s now accepting very slow, continuous feeds of two teaspoons an hour. Someone also asked me what I do today so I showed them my list of reminders:
- 7am – Flush, Sodium, flush, Halogen, flush, Morphine.
- 8-8:30am – Take off feed, clean. Four hours no need (to re-stomach)
- 11:45am-noon – Prepare
- 1:10pm – Stop feed, clean wound.
- 1:50pm – Prepare
- 2pm – Full flush, feed.
- 3pm – Stop Feed/Full Flush
- 3:50pm – Prepare
- 4pm – Full flush, tube wind, feed.
- 5pm – Stop feed, clean wound.
- 5:40pm – Prepare
- 6pm – Full flush, wine, flush, Morphine, flush, Baclofen, full flush, feed.
- 7pm – Stop feed, full flush, Paracetamol, flush, Sodium.
- 7:50pm – Prepare
- 8pm – Full flush, wind, feed.
- 9pm – Finish feed, clean.
- 9.50pm – Prepare
- 10pm – Full flush, feed
- 11pm – Stop feed, full flush, Baclofen, flush, Paracetamol, full flush.
Add to the mix – Faith, visiting neighbours to give keys and explain deliveries, visit and tour special school and meet a male version of Shalome who uses eye technology to communicate. Open day at school for Faith (surrounded by couples with usual mundane baby complaints). This evening we had visitors and I got two girls to bed on two different floors. Shalome won’t sleep again now after being woken for a feed. I’ve eaten half my lunch and half my tea.
Shalome had a royal visitor today. Forget Me Not’s Royal Patron Princess Beatrice came to visit the hospice and meet the children. She received a full tour, viewing the sensory room, hydrotherapy room and accommodation. The Princess gave her royal seal of approval and
even posed for a picture with Shalome!