Instead it is still 3 months left of daily trips to the hospital, the constant stress of never having enough time to do everything each day, 2 and 3 hour free parking spots that are ten minute walks away which gives you 20 minutes less each day to visit plus the time it takes to check Bailey into the creche and walk back around to the other side of the hospital. 3 more months of convincing Bailey that he does want to go to the hospital creche, asking favours of friends to look after our little boy, let alone the ups and downs of Niamhs health. The bigger she gets and the more she needs me to look after her, the harder it will be to leave her there. Once I can pick her up and cuddle her, how am I supposed to put her down again and walk away?
Phoned for an update this morning, Niamh has been quite unstable all night and this morning. Anthony was hoping for a cuddle with her today, but they want to keep her as still as possible so that her ventilation tube isn't disturbed. She is tolerating her feeds well though so thats a positive.
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Just got back from our visit, our little wonder has been really stable. She has a cute new dummy and was trying to open her eyes to see us when we spoke. She has been sedated to keep her still and help to keep her calm. Depending how she goes, she may be off the ventilation next week to try her on CPAP. There is no guarantee it will work for her so she may be retubed, but will be interesting to see how she goes. She will be provided with oxygen and pressure through CPAP, but she will basically have to breathe herself.
5 comments:
Bonnie,
Its a long tough road ahead for you guys.
Unfortunately, there really is nothing we can say that will change that, I guess you will just have to keep putting one foot in front of the other and taking it day by day (as Niahms blog is so eloquently called)
There is so much that you are grieving for, a normal pregnancy, a normal birth and 'baby moon' and all those other things that have been taken from you so suddenly but the early arrival of your little girl.
You don't have to pretend you are happy to be in this situation, it sucks. We all KNOW you love your daughter and cherish her, but it would be so different if she was still inside of you though.
Nevertheless, it is what it is now. She is here. Allow yourself time to grieve what you are missing. Allow yourself moments of joy in the little things each day that might come your way. And don't feel guilty for it. It does not mean that you love her any less.
Know that this experience has changed you, and others for ever, good and bad.
And that we are all here to support you (if not physically, but emotionally) EVERY day, good and bad.
Sas xxx
Ditto to what Sas said Bon,
I have everything crossed that Niamh will be stable again soon and home in a couple of months to lay down on those girly sheet.
big hugs to you sweetie
xoxox
Oh Siobhan, all this really is a daily struggle for you guys right now. Ditto to everything Sas said, she was spot on.
Thinking of you and your precious little Niamh.
Lisa xxxxx
Hi there, I hope you do not mind but I have been reading your Blog after someone I know mentioned it to me (she is due on the same day that you were). Its now 10.30 in the evening and I just couldn't go to bed until I read the whole thing.
I just wanted to say how amazing I think you are your family are, and how absolutely stunning your little daughter is. What a wonderful thing you are doing for her so that one day she can read about this time in her life.
My very best wishes and prayers to you and your family. Especially to your bright and shining star Niahm.
Michelle
Wise words there from Sas. Won't add anything more, but will offer a HUGE cyber *hug* to you my friend. Hang in there - we're all here for you, every step of the way - just sux it isn't physical support.
xoxo
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