Amber

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At 34 weeks pregnant with my fourth child, we were told we were having a baby born with a trachea oesophagael fistula and an oesophagael artesia. When she was born she would be taken from me and taken to Princess Margaret Hospital where she would have surgery to save her life. We researched as much as we could and quickly realized just how major this was, but nothing really prepared us for what we were about to go through, and how much our lives would change.

On the 28 March, 2008 at 37 weeks Amber came into the world. As expected she was taken to PMH, and had surgery to repair the TOF/OA. Seeing our baby for the first time following her surgery was devastating. In front of us was our tiny child, swollen, bruised, and lifeless. Her little head was tucked down to her chest and couldn't be moved so as not to tear the repair, which was apparently very tight. I remember asking a million questions, how long will she be like this? How long will she be in here? Why are you doing all these other tests? What does this all mean for her? and never getting an answers that I wanted, because the fact is no one knew the answers.

We sat by her while she was intubated and waited for the day she was taken off the machines. The day finally arrived when she was breathing by herself. It scared me as she sounded terrible, she was bubbling from her mouth and looked so not comfortable. Our nurse asked if we wanted to hold her and of course I jumped at the chance, as they placed her in my arms, tears rolled uncontrollably down my face. I looked down at her and she still looked so fragile. My partner sat down and I passed her over and all of a sudden alarms on the machines went crazy. They scooped her out of our arms and started CPR. The room started spinning I remember being so scared and not knowing what was happening. They stabilsed her and for the first time in this whole thing, I felt so utterly helpless. Everything was out of my control, there was nothing I could do but watch and wait, and pray.

Over the next week, things quickly improved, Amber got stronger, was tolerating feeds, tried Breastfeeding which took a lot of persistence but she got it. Things were looking up and I was looking forward to taking our baby home. Amber was three weeks old when we were told she had a PDA. The following day our little one failed her hearing tests on both ears and were told she was deaf as well. We knew we had to be strong for our little one and decided if she had come this far, she could get through anything. So with a fairly positive outlook we took our little girl home. Amber is now three and a half. She has had it pretty hard, TOF bubs have many issues, with the worst reflux, to the point it rotted her teeth and she needed them restored, constant vomiting due to stricturing of their oesophagus, the mechanics don't work to push the food along to their stomachs either and they need what is known as dilatations, requiring anaesthetics to stretch open the repair. Amber was on these fortnightly for 8 months. They have major respiratory problems which required Amber to be hospitalised more times than I can count. She has had to be intubated because she went into cardiac and respiratory arrest, because TOF bubs just don't cope with getting sick.

To look at her now amazes me when I think of all she has been through. She is a bright happy little girl who has made me a better person. These babies make us realize not to take anything for granted, and not to sweat the small stuff. She is having surgery soon to get a cochlear implant fitted. I hope this will be the last surgery she will have to have, but as I have learnt you have to take each day as it comes. A sick baby, is such a rollercoaster, but ours is also our gift.

 

 

 

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