Life after Transplant

Anniversaries – A new perspective

On the last day of 2015, we found out that we would be welcoming a baby into our little family. It was such a joyful occasion and we had nothing but hope and excitement when we thought about our baby and our soon-to-be family of three.

Then came the morning sickness…scratch that, the all-the-time sickness. Then, when I had finally come to terms with the fact that I was not going to get that wonderful second trimester relief from puking that I heard so much about, the pain kicked in. I have terrible joints – always have. My shoulders, hips, ankles and knees will simply dislocate at their own leisure. I’ve been dealing with it since I was a teenager so it honestly doesn’t bother me that much any more but when you approach your third trimester of pregnancy a hormone called relaxin kicks in. It relaxes and loosens your joints – awesome to prepare for a baby – unless you have loose and overly relaxed joints to begin with… fun times.

But then September came – the month we would meet our baby! We were excited and I was VERY ready not to be pregnant anymore. The last weeks of my pregnancy were probably the easiest on my body – the pain reduced a bit and I only threw up about once a week. My due date came and went and after 8 days, my doctor decided it was time to evict the little one.

On Saturday, September 10th, 2016, we headed into the hospital where I was to be induced. They started the drip at about 13:30 and Laura made her big arrival into the world at 02:54 on September 11th, 2016.

Everything was well with the world. I was allowed to eat which was amazing and we had the most beautiful little girl in the world. That is, of course, until a few hours later.

Laura was taken to the NICU for some tests after a low pulse-oximeter reading. Shortly after, we were hearing about the Congenital Heart Defect Transposition of the Great Arteries. We began planning our 2 week trip to Edmonton for Open Heart Surgery to correct Laura’s heart defect.

Fast forward to September 2017.

September 11th, 2017 we celebrated Laura’s first birthday. A day we were not sure we would be able to see. It was a big deal to us that Laura had reached a birthday and we were elated but we also thought back on our experiences – this was Laura’s birthday but it was also the first anniversary of our adventure in Congenital Heart Defects. It was the anniversary of Laura’s first poke, her first IV, her first NG tube, her first echo, her first x-ray and her first head and belly ultrasounds. So while we celebrated a birthday- a joyous occasion- we also realized that we were in for a few months of dates which would stir up many memories for us.

There were major anniversaries and minor anniversaries such as getting extubated, having lines inserted and removed and so on and so forth but the major ones so far have been:

September 13th

– Laura’s first airplane ride.

September 16th

– Laura’s first Open Heart Surgery

September 25th/26th

– Laura’s first (and most severe) cardiac arrest – 90 minutes of compressions

-Laura’s first time on ECMO

-Laura’s first cardiac catheterization

-Laura’s second Open Heart Surgery

-Laura’s umpteenth procedure (to clear out clots around her heart)

October 13th

First Diaphragm plication surgery

October 14h

-ECHO which showed left ventricular failure

October 15th

-First time diagnosed with chylothorax

October 16th

-Cardiac Catheterization which confirmed left sided heart failure and coronary artery anastamosis

October 18th

-Third Open heart surgery

-First LVAD

Which brings us to now. Yesterday was my 27th birthday. On this day last year I wanted nothing more than to be able to hold my baby and that wish was granted when on November 7th, 2016, Laura was extubated to CPAP. I held her all day on my birthday and I was so grateful for that. This year, I knew that my birthday would be excellent because we were home with family. We had dinner and spent the night at my parents’ house where we played games and had some time with other adults which is always much appreciated. It was perfect because we were home.

It is hard, however, not to dread the anniversaries to come. In 5 days, we will look back on the events of last year when we watched in horror as Laura went into cardiac arrest in front of our eyes. A year is not nearly enough time to erase the image of our little girl turning grey and limp in front of us.  It is not long enough to forget the chaos that is a code team busy at work and feeling in awe of it even in our fear. I think back to that day and it is so fresh. No details are missing. A year has not made me forget the sight of how very hard compressions are on such a tiny person – it’s hard not to wonder how their little bodies can possibly withstand that kind of trauma. We watched as the heart rate on the monitor read 0 and realized that, yes, the monitors are still attached – there’s just nothing there to pick up.

I remember vividly the feeling of anticipation as I waited for one of the intensivists that we had grown to trust completely and the feeling of relief when we saw Dr Paula’s face. I remember the rush of calm that enveloped my body when I heard her begin to bark out orders – “Push harder, faster, where is the epi? How long has she been down?”

I remember feeling my body shake as I stood there beside my husband knowing that in that moment, even though I was her mother, I was completely and utterly useless to Laura.

But then I remember what came next. The image of my precious baby girl turning pink and screaming at Dr Dominic seconds after he administered the epi and hearing her gasp for air. I remember how much relief I felt when I heard that the compressions had lasted only 7 minutes and that the elapsed time between bradycardia beginning and compressions beginning was less than 30 seconds.

After Laura got better she got worse again and she endured her third cardiac arrest, another 30 minutes of compressions and her second ECMO cannulation.

It was a rough day. One of the worst of my life. But even so, on November 14th, 2017 I won’t feel sad. I won’t feel angry. I do not blame anyone for what happened on that day – it simply happened. Instead, I will thank God a few extra times, I will hug Laura tighter, I will appreciate my husband a little more and I will probably watch her colour and breaths a little extra carefully at about 8:30pm.

Anniversaries are a celebration. Whether they are anniversaries of a marriage, a birthday, or something terrible like the day we endured on November 14th, 2017, anniversaries should be cherished because those events have brought us to where we are today and as far as I’m concerned, that’s reason enough to celebrate.

Laura and I – loving swimming lessons!

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