Wednesday 20 March 2013

Home and settled!

My last post was written two weeks ago (where has the time gone?!), and I finished off saying that I had hoped gracie would be home in time for Mother's Day....

Home in time for Mother's Day?

Being discharged from hospital on the Wednesday, and taking that first journey home without G, seemed very bizarre. I had imagined her first trip in the car seat, and Tim driving at 50mph instead of his usual fast pace, but that day wasn't going to be just yet.
That night, I slept well, but as soon as we woke on the Thursday morning, I was anxious to get straight back to the hospital.
Upon returning, we found that she had fed well throughout the night, her bloods were improving, and now she was allowed to come off the drip. It was so nice to see her not hooked up to machines, though she still had the nasty canulas in both hands. The doctors said that she was doing well, but needed a brain scan, which alarmed me. They also said that if all was well, G could potentially go home the next day (Friday), and that we should stay overnight with her in special care in one of the private rooms. So that evening, I returned to hospital with my overnight bag to spend my first night in almost a week, with her. We agreed that Tim would stay at home with the dog. It wasn't the most successful night, and G was awake for nearly 5 hours, leaving me distressed and helpless. At 4am one of the nurses offered to look after G for 2 hours to give me some sleep. Those 2 hours gave me just enough energy to see the next day through.

Tim returned to the hospital in time for the doctors rounds the next morning, and to our amazement, they felt the brain scan was no longer necessary, and they were happy to discharge her after lunch. Putting her in the car seat, and securing her in to the car, felt truly surreal. We had spent so much time at the hospital, both during and after the pregnancy, but finally we were on our way home, for good.
She would be home in time for Mother's Day....


Features of Turner Syndrome at birth

We have had many conversations with friends and family about whether G is displaying any of the potenial symptoms of Turner Syndrome.
Just to remind you, symptoms that can affect appearance and can be seen from birth, include:
  • a particularly short, wide neck (webbed neck)
  • swelling of the hands and/or feet
  • a broad chest and widely spaced nipples
  • arms that turn out slightly at the elbows
  • a low hairline
  • small, spoon-shaped nails
  • a short fourth finger or
  • eyes that slant downwards
  • droopy eyelids
  • low-set ears
  • low birth weight
At the moment, G only really displays two of these characteristics-her feet were swollen at birth, and still have some swelling, and she had a lower than average birth weight.
Gracie will develop other issues as she grows up, two of which are certain-a short stature, and ovaries that do not function. There are numerous lists of other potential problems, which can affect organs, development, learning etc, however she may not face any of these. So for now we will continue to be thankful that she is as healthy and happy as she can be.

Amazing support network

We have been truly blessed with support from family, friends (new and old), and even people that we barely know. People have cooked for us, sent us lovely messages and cards, continually been asking after Gracie's progress, and praying for her health. She is already well loved, and thoroughly spoilt!

What's next in terms of medical care?

We are waiting on an appointment for a heart scan, which should take place in the next 4 or 5 weeks, and we have just been sent an appointment to see our paediatrician in June. Those aside, we will carry on like any other family with a newborn baby, and take each day as it comes. For now though, we can enjoy the fact that we don't have an appointment every week :)

What a lovely little miracle she is. She is the 1-2% that did make it, though to us she's our little one in a million!













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