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Maebh came into the world nearly 5 weeks early, weighing 3lb 11oz. She is our third baby but our first girl. After a traumatic entrance, Maebh was whisked away to neonatal. Unable to see her for 6 hours we were given constant updates of she was doing well, breathing on her own etc.
Finally 12pm came and we could go and see her…..

We weren't prepared for what we were walking into; this tiny little baby, hooked up to every machine in the hospital, very sleepy and swollen. We were told " have they told you about her ear?" "Have they told you about her hips?" Both answers to these questions were No!
After giving our tiny little girl the once over as you do, she had a very under developed right ear, and her hips didn't mobilise at all.  Coming to terms with that was bad enough, then through the night I'm sitting next to her holding her hand and her nurse says have they told you about her small mouth? They were going to do some genetic testing, nothing to worry about….they do it more often than not …may just be one of those things.
So days whirled by… just surviving, 2 boys 4 and 7 school runs, homework, hospital trips and everything that comes with it. 
Day 10… wants to see the Drs to ask a few questions, so he accompanies me up to the hospital that morning. Then carries on to work. Our nurse then calls me and asks where dad has gone and if he's coming back? They've got some test results back and thinks dad should be there to get the results. You automatically think the worst but my goodness we could never have been prepared for what we were about to hear.
Called into a side room, us, consultant, nurse, secretary, he then proceeded to give us that fatal blow- Edward's syndrome, life limiting- won't survive till she's 12months old…
If I'm honest the next days/ weeks passed by in a blur….getting her home was massive, anxiety, worry, stress that's just to touch on it. Readmitted After 5 days at home with apnea episodes, to be told they don't want to resuscitate her if it comes to it, why why why?

These were the arguments and battles we constantly face. Readmitted again at 8 weeks old with a severe apnea episode at home, when I had to suction her to bring her back. 
She’s gaining weight amazingly, smiling, chuckling, reaching out, starting to hold her head up, still NG tube fed, suffers with reflux quite bad.  But she's here and fighting her own battles. We are so blessed to have her in our lives. She will continue to grow and thrive like she has done these past 24 weeks, despite all the negative comments and feeling around her diagnosis. 
We will never give up hope and will continue to fight every breath for our little girl!

Created: 28/01/2019 18:12

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