Yer dad came to pick me up really early this morning in mullingar and we went straight to crumlin. Yer dad led me up to meet you, i had so many emotions goin round in my head, scared about what was facing us but excited to see, hold, cuddle, kiss and love you. Then came the moment i'd anxiously awaited i got to hold precious you in my arms and let you physically feel the oceans of love i had for you. Yer dad just kept clicking the camera to capture the moment because it was so special.At approx 10am i got to feed you your first bottle it was an indescribable feeling we were beaming with joy putting scared at the back of uor minds.
We met with your cardiologist Dr McMahon this morning and he explained in great detail your condition and further tests they'd be running over the next few days. I this short period i learnt more about the heart than i ever imagined i'd know. Rosaleen, luke, maggie and your big sister abigail came to see you this evening. Abigail kept hugging and kissing you and the others adored you.
We went out to liffey vally at lunchtime to pick up a breast pump and few bits in boots, i'd decided i was gonna give you the best start in life and express milk for as long as i felt able. Was i mad and i only outta hospital, thought i was able to get around, more fool i. A lady in boots advised me on the pumps and she asked if i'd a baby, i told her about you and she gave me a guardian angel pin and said she'd say a prayer for you, thought that was so nice of her. Yer dad and i came home later that night to get some much needed rest and we'd be back up in the morning as early as possible to you.
10th July
Up bright and early to ya this morning, i wasn't thinking bout your condition i wanted to savour the excitement of going up to see you. I often thought of this situation of not being able to bring home your newborn right away and how hard it would be to leave your baby in hospital. I have to say it was really hard but very comforting and reassuring to leave your newborn in the hands of the nurses in St Teresa's Ward. They went out of there way to support us and make us go for lunch and breaks, never once did i feel insecure about leaving you in their hand, they were all so kind and caring.
You came outta the incubator today and we got to bath you today for the very 1st time, it was so much fun, u didn't like the water and cold too much. We then got to dress you in a very cute i love my mummy sleepsuit. It wasn't long before you got up some wind and we had to change you into i love my daddy sleepsuit. Yer dad was delighted. Yer nanny & grandad kelly came to visit you today as did shirley, andrew and linda, they we're all delighted to be able to hold and cuddle you.
Kathleen our clinical nurse specialist came to talk to us today about your options and future. She was great support to us, a really nice lady. Each day is was getting harder to leave you in the evening time but we had abigail to think of.
11th July
We were back up bright and early again this morning. Paul, Trish, Sarah and yer nanny kate came to see you today. You were the busiest baby on the ward, loads coming to see ya.
12th July
Back up to you really early again this morning, it was really fulfilling opening the door each morning to see your beautiful blue eyes and you were growing a sence of awareness that we were present. Stan, sheila, maggie, rosaleen and luke came to visit you today. You were so popular lil man, the nurses were amazed at all your visitors. It was today we got an eyes wide open first smile including 2 adorable dimples from you and and at just 5 days old, smart lil man ;-)
10 days in crumlin
Your were in crumlin for 10days in total. In this time you had bloods taken every day and lots of tests done some of which included brain scan, kidney scan and cardio catherisation(angeogram). The brain scan came back clear, thank god but the kidney scan showed you'd just one kidney. Your kidney condition was left multicystic dysplastic kidney (non existing) and right PUJ abstruction. Your bloods were showing low calcium and combined with the kidney abnormalities docs decided to do a fish test to test for Digeorge Syndrome. Digeorge Syndrome is a deletion of chromosone 22q11. On 16th July '09 bloods test confirmed you had Digeorge Syndrome. Your dad and i needed to be tested now for the deletion. It was so upsetting, you had so much to deal with and now this, it seemed so unfair and cruel. You now had a 1 in 2 chance of passing this onto your children.
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