READER REPORT:

Time with baby Xavier

AMY VANDENBERG
Last updated 09:50 01/04/2014
Baby Xavier
FIGHTING HARD: Baby Xavier, after open heart surgery at four-weeks-old.

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Baby Xavier was born on November 2, 2013. I was induced at 37 weeks because the scan showed that Xavier was not putting on much weight anymore.

He was only 5.5 pounds when born and was rushed into NICU for low blood sugar and was subsequently diagnosed with heart problems.

I was meant to start working three months after Xavier was born. This is no longer possible as Xavier has been diagnosed with severe cardiac problems which saw him having his first open heart surgery at four weeks old and then another one at three months old.

He is not out of the woods yet. He will need further procedures.

On February 4, Xavier had his second major open heart surgery.

Prior to that, we were told the odds of coming out of this operation were not that great. We were sent home from Starship and told to spend some quality time with him before his surgery.

Xavier's heart stopped before the operation even began.

He had to go on life support for over a week. When the opportunity came to take him off the life support, we were told that this is his one and only chance of coming off the life support now but be very clear that if he has a cardiac arrest and we are not able to bring him back, we won't be able to put him back on the life support machine and you will have to let him go.

Xavier had a cardiac arrest two hours after coming off the life support but was resuscitated and shocked back to life.

He arrested again two hours later but they were able to bring him back.

Currently, Xavier is still recovering from this major surgery and it is a miracle that he survived it.

However, there is nothing that the surgeons can do for him anymore at this stage as his coronary arteries and his pulmonary arteries are too small for them to operate on.

He has to grow bigger and stronger before they can even look at surgery again.

We have been told, once again, if Xavier were to have a catastrophic event there will be no way of bringing him back.

He is our heart baby who we will never trade for anything.

But it does mean that we can only be on one income for the rest of his life as Xavier needs 24-hour care.

We are reaching out to anyone who is able to help us carry on with caring for Xavier without having to stress and worry about not being able to pay the bills and the rent.

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Please take some time to look at our fund raising page at www.givealittle.co.nz/cause/Xavier


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