Archive for March, 2002
Grace was released from hospital today.
We were a bit nervous bringing her home, after all she’s been through, but the nurses were very reassuring and provided us with heaps of information on what signs to look for, who to call if we got worried, etc. It’s great to be home.
March 30th, 2002
A meeting was held quite far from Earth.
“It’s time for another birth.”
Said the Angels to the Lord above,
“This special child will need much love.”
“Her progress may seem very slow,
Accomplishments she may not show,
And she’ll require extra care
From the folks she will meet down there.
“She may not run, or laugh, or play.
Her thoughts may seem quite far away.
In many ways she won’t adapt,
And she’ll be known as handicapped.
“So let’s be careful where she’s sent,
We want her life to be content.
Please Lord, find parents who
Will do a special job for you.
“They will not realise straight away
The leading role they’re asked to play,
But with this child sent from above
Comes stronger faith and richer love.
“And soon they’ll know the privilege given,
In caring for the gift from Heaven.
Their precious charge, so meek and mild,
Is Heaven’s very special child.”
This poem was written by Edna Massimilla. It was first published in The Optimist – the newsletter for PROUD, Parents’ Regional Outreach for Understanding Downs, Inc.
March 30th, 2002
The last of Grace’s attatchments came out today — her central line and pacing wires. She’s feeding well, and sleeping fairly soundly between feeds.
Theresa made a fantastic Good Friday dinner of home-made ricotta ravioli tonight. We really are being spoilt rotten.
March 29th, 2002
Grace was moved out of the high-dependence room and into her own private room today. The feeding tube came out this morning, and she’s taking the bottle much better now. We’ve already noticed she doesn’t get as tired on the bottle as she used to before the operation, which is a great sign. Dr Nunn and Dr Cooper are both very pleased with her progress.
March 28th, 2002
Grace was released from the PICU today! She is exactly 3 months old today.
After such an operation, babies are normally kept in the PICU for 3 or 4 days. Grace was in for 7. At first it was because she went into pulmonary hypertension whenever the nurses handled her, and later her heart kept going in and out of a junctional rhythm, which meant she had to be connected up to the pacemaker. All of that had settled down by yesterday, so they observed her overnight and then released Grace and Aiden (the little boy in the bed next to her) into the high-dependence room of the Edgar Stephens cardiac ward.
Grace is able to take a small amount of milk from the bottle but gives up after a while, so the remainder is given to her via the feeding tube. It’s a huge relief to see her awake and alert, after spending so long drugged out. Most of the tubes and probes are now out, as well.
The Easter Bunny came around this morning, with an egg and a stuffed rabbit for every child in the hospital. The Starlight Foundation handed out little backpacks full of pencils, textas and colouring books a couple of days ago, too. I’m amazed at how well they look after the kids in this hospital!
March 27th, 2002
Grace went into surgery this morning. The hospital gives waiting parents a pager, so that they can get out for a walk, do some shopping, or get some lunch, instead of sitting around in the waiting room until their child comes out of surgery. They page you about half an hour before the surgeon will be finished, so that you have plenty of time to return to the hospital to talk to him. We took the opportunity to return to the Micallefs’ for a coffee and lunch.
The pager went off just after we’d finished lunch. We dropped everything and rushed back over to the waiting room. It wasn’t long before Dr Nunn arrived and told us that the operation had gone very smoothly. After a short wait we were let into the Pediatric Intensive Care Unit to see Grace.
The nurses in the PICU were incredible. There is one per patient, and they were happy to explain to us what all the tubes and wires were for. Grace had 3 canulars (in her head, arm and thigh), a central line in the artery in her neck (used to administer drugs and measure blood pressure), a breathing tube up one nostril, a feeding tube up the other, a catheter (you know where that goes!), two chest drains (one for the heart and one for the kidneys), pacing wires (for connection to a pacemaker if needed), pressure probes inserted in the left atrium and pulmonary artery, a blood oxygen probe on her hand, and a collection of electrodes over her body for measuring pulse, temperature, etc.
During the operation, Dr Nunn removed a small piece of the pericardium (the membrane surrounding the heart) and used it to patch up the hole between the top two chambers of Grace’s heart. The hole between the bottom two chambers was closed by pulling the bottom edge of it up and stitching it to the centre of the heart. On the way out, Dr Nunn stitched Grace’s breastbone back together with nylon thread (he described it as similar to tying shoelaces). The nylon will remain in there permanently, and will gradually become part of the bone as Grace grows, much like how a tree growing through a wire fence eventually envelopes it.
The incision in Grace’s chest is only about 5cm long. I’ve no idea how Dr Nunn was able to do everything through such a small hole! He stitched it underneath the skin, so she’ll only have a thin line of scar tissue instead of the railroad tracks you normally see after stitches.
March 21st, 2002
Grace went into hospital today in preparation for her big operation tomorrow.
The Westmead Childrens’ Hospital is an incredible place. Everything is brightly-coloured and fun-looking, making it a happy place for kids to stay. They even have their own in-house TV and radio stations, which broadcast requests for kids, run competitions, and visit the wards.
Megan and I are staying just around the corner at Greystanes, with Grace’s godfather’s parents.
March 20th, 2002
Every Friday, we have a raffle at my work (Nortel Networks in Wollongong) to raise money for charities. Normally the proceeds go to Camp Quality, but one Friday a month the money goes to a different charity, to spread the benefit around.
Because the NSW Down Syndrome Association has given Megan and I so much help since the birth of Grace, I asked if they could be added to the rotating schedule. Today was their turn. Since it was my cause, I bought $10 worth of tickets (normally I just buy $1 or $2 worth). When the raffle was drawn, I won! First prize was a choice between two bottles of alcohol or a $50 gift voucher, so I took the $50 and donated it to the DSA.
March 8th, 2002