Saturday, April 14, 2012

Four years ago, our miracle happened.

I'm writing this post today because I've got some quiet time - a few days early but that's okay too.  I always like to reflect on David's journey on his birthday, so hope you don't mind reading about our miracle boy (will likely turn out to be longish).

Four years ago right now, I was very pregnant.  I didn't particularly love being pregnant - I was violently ill every single night for more than 8 weeks straight.  Not so fun.  Funniest memory (in hindsight only, not at the time)... the first few times, Kirk lovingly held my hair back, got me a drink of water, rubbed my back...  that got old quick I guess and one time it was "honey, can you shut the door, it's pretty loud and I'm watching TV!"  I understood though, it was like clockwork and pretty revolting :)  And we had tried for a long time to have him, so I didn't complain too loudly.

Other than that, I was healthy, we didn't find out the sex, but the 18 wk scan showed a possible hole in the heart, so a few days later I was back and was given the all clear for his heart.  I've learned so much about heart scans in the meantime...

I felt labour start around 9 pm, really noticed it at 11 pm, had a short nap, called the midwives, had a shower, got to the hospital around 1 am and David Jacob was born at 5.16 am on April 17.

My waters didn't break until he was born (they had to break them) and the doctor had to do a bit of a slippery football catch he came out with such force (and I tore 3 ways for the same reason!).

He had really purple fingers (hindsight clue #1), but his APGAR score was good after they cleared his lungs of the meconium (sp?) and so all was well.  Though even in this photo, he's not very pink, is he?!

We had the rest of that day where Kirk went home to make some calls and to sleep and I slept on and off.  Dad-in-law and nephews visited quickly that night and I tried to get some sleep, while learning about my new little boy.  He fed okay on one side but hated the other side. (hindsight clue #2)

The next day, he had his paed check up and she thought he looked a bit blue (#3), put him on the monitor and stats were perfect and his colour was fine again, so was deemed okay.  That evening though, he looked bluer and bluer but not all the time - was it just the light, he had been checked earlier and was fine, were we being paranoid first-time parents, was it because Michelle was holding him and she was wearing a blue shirt?

The visitors left and Kirk cuddled David on his chest while I had a shower, some Daddy/son bonding time.  I got back into bed, leant back and the midwive came (I had accidentally leaned on the call button which was on the pillow because of the TV volume).  'No, we didn't mean to call you but while you're here, is he looking a bit blue to you?'  He was wheeled away for a quick check and our normal newborn experience ended then and there.  The next time we saw him about 20 minutes later, he was in a box, with 100% oxygen and yet his stats were still so low, they weren't even registering on the monitor (I will never ever forget that stat alarm sound which went off constantly for days).  The Royal Flying Doctor Service was called and a baby call-out team was organised in Brisbane to fly him out, as our hospital is a smaller regional one.

Hanging out in NICU
Meanwhile, Dr. Apex Dede (LOVE that guy and love his name!), who was not supposed to be there that night at all, was just leaving town when they called him in to see David.  He knew it had to be a heart condition, knew the protocol and administered the drug needed to keep his duct valve open.  Then he proceeded to stay with him all night, with the two other paeds, to ensure David was fine until the extraction team showed up, meaning he wasn't getting to his son's out of town soccer game.  The other two paeds had never come across such a complex undiagnosed heart condition in a newborn before and they would've been lost without him.

The team arrived at 4 am with a fully contained mobile emergency crib and we were fully loaded into the ambulance and taking off in the plane by sunrise.  I sobbed the whole 45 min flight, but had calmed down somewhat by the time we landed.

By 6 am, he was being fully monitored, hooked up, drugged, etc by the neo-natal doctors and by 8 am, a specialist from the heart hospital was on site.  Within a few minutes of his heart ultrasound, we had the diagnosis.  Or I did, since Kirk was still driving south.  Poor guy, that drive was a nightmare for him, being exhausted and worried out of his mind.

David has (had?) Transposition of the Great Arteries - basically, his heart's plumbing was around the wrong way. This is from an email/fb note that I posted that Sat afternoon to fill everyone in:
Basically, a normal heart takes deoxygenated blood, pumps it to the lungs where it is gets full of oxygen again and then pumps out the oxygenated blood to the rest of the body, where the cells take the oxygen and the blood goes back to the heart, then back to the lungs and around and around. David's problem is that the deoxygenated blood goes into the lungs and then back into the side of the heart and back into the lungs and on the other side, the blood without oxygen is circulating continuously without getting any oxygen from the lungs. So two wrong cycles instead of one good cycle. There is a bit of crossover from a few small holes, but not enough. The reason it was not found out right away is because while in the womb, the lungs aren't used, so a special duct (?) valve passes the blood from one side to the other. Once you cry when you are born, this valve becomes unused and eventually closes over, but it can take up to 48 hours. So when this valve started closing for David on Friday sometime, the problem with his heart became obvious. The drugs are keeping that valve open but it is only a temporary measure.

The specialist informed me he and his colleague needed to operate right away to PUT a hole in his heart, before his belly button closed, since going through the bellybutton meant it was safer/quicker than through the groin.  The new hole would allow the blood to mix enough to wean him off the drug keeping the valve open, since that same drug would damage his heart muscle.  I had to sign papers before Kirk could even get there, David could die right then and I was terrified.

The hardest moment ever
But that surgery was over in 20 minutes (could've taken up to 6 hours) and Kirk arrived and soon we could see him.  The next week was a blur of sitting by his bedside (all the other babies in the ward were palm-sized premmies and he looked giant amongst them), crying, eating, sleeping and for me, pumping (I def had no supply issue).  We couldn't hold him and felt pretty helpless, though we could help with changing his diaper, giving his milk through his feeding tube, etc.  We were transferred to the specialist heart hospital the day before his surgery and met his surgeon the night before.

The surgery took place when he was exactly 7 days old.  We each got to hold him for the first time in 5 days for 5 minutes each before they took him away for surgery.  Neither of us voiced it, but we both were petrified this was the last time we'd ever hold him.

Letting them wheel him away was impossibly hard.
Only 20 minutes after open heart surgery

We knew we had about 5 or 6 hours to kill, so we went to the mall, wandered around aimlessly, got photos developed and then headed back.  Just wanted to get the time past and it actually did pass okay.  Not long after we got back, we got a call "The surgery was finished, come to the ICU and the surgeon will see you shortly".

The surgeon (Dr Jalali) told us it had been successful and that while it was more complicated than the scans had predicted, it was nothing he hadn't dealt with before.  Still he only did this surgery max twice a year and there were almost always complications either from being on bypass or from the drainage, infection or whatever.

A few minutes later, this photo here was our boy! We counted over 25 tubes or wires going either in or out of him, he was puffy and swollen, but he was PINK.  Not grey or blue like he'd been thus far in his very short life.  He had one nurse on him 24/7 and many hours later we went "home" (ronald mcdonald house) to sleep...

First cuddles for Daddy 2 days post-op
Every day, he healed a bit more, more tubes came out, different drugs were stopped every day and soon we were shifted from ICU to the children's heart ward, soon again we were feeding and soon thereafter, I was sleeping in his room.  In fact, those common, predicted complications never came.  Then, on my birthday (best birthday present EVER), he was back to birth weight, wounds were healing well and we were discharged and told to go home (only 9 days after open heart surgery)!  No drugs except some pain relief for him and the only restriction was not to pick him up under the arms (his chest could crack open again).

We had our first follow up the next week and then at 3 months and then yearly or 18 months ever since. He is a healthy, normal kid, that runs and jumps on the trampoline and drives me crazy just like every other kid.  He'll have ongoing monitoring for the rest of his life and while they don't really know long term prognosis (since the first kids to have this surgery are only now in their 30s), there is every indication that other than his "zipper" scar and funny sounding heart beat, he'll be fine.  He should never get obese (just puts unnecessary extra pressure on his heart) and he needs antibiotics if he has invasive dentist procedures or gets a tattoo or his ear pierced - though our plan is just to tell him he's not allowed to get either done ;) !  I try very hard not to be a paranoid mom, I try to "forget" and let him just be normal.  He is fully aware though, he knows that "his heart was broken when he was a baby and the doctor had to fix it and that's why I have a special zipper".

My husband kept a video diary throughout the journey and then spent ages mixing it together.  Watching that, I cry, but because I'm reliving it like it was yesterday and because I'm so thankful to God.  There is a slightly higher risk that a future pregnancy would also result in a heart defect, but we're not letting that get in our way (not that we're having any luck in that area).

His bypass machine
The other really cool thing?  A nurse, who's a photographer when not in theatre, had to take photos during the surgery, as the paediatric heart ward was being moved to the children's hospital a few days later.  So the theatre staff at the children's hospital needing training.  We agreed, though my husband had the foresight to say "as long as we get copies".  She even then did a painting of it and called it "The Gift of Life".  We're buying that before we move away (we only have a print at the moment and it so doesn't do the painting justice).  So here's a few photos, from his actual surgery.  Cool, huh?

Some of the things I've learnt since then:

- my dad's cousin had the same condition.  Back then, the surgery techniques were nowhere near as advanced as now and it was a different procedure of bypasses, tubes, valves, etc.  She spent her life struggling and died at 30 from heart failure.  It was from cases like hers that the surgeons learned more and strived to find a way to do the necessary microsurgey.  Now, success rate for the surgery survival is 95% worldwide and at David's hospital?  99%.

Dr Jalali and Dr Polner.  My heros.
- Scars are weird.  His "zipper" used to extend to his belly button.  Now, it is about halfway down his chest and as he gets bigger, it shrinks.  I sometimes think by the time he is 30, it will be so tiny people won't believe him....  His scar is also not very evident, except if he's exercising hard, so his skin goes red, but the scar stays white.  Yet whenever we go swimming, I see a lot of people do a double take.

- Heart surgery was way behind all other types of surgery as there was a fear of affecting the soul of someone.  It really only became more common in the 1950s.

- One in six children born will have some type of heart condition, though for many it is a resolved just after birth (small holes repair themselves, etc).

- many of these conditions are picked up in utero and some (like his) are not, depending on how many fetal ultrasounds the technician performs.  In our case, I know she was looking at bloodflow when she got worried (though I only knew that after watching multiple subsequent ultrasounds later).  However, you can't diagnose from pictures and that is what the doctor would've looked at and when I had to go back, the different tech and doctor were only looking for structural deformities (which you can't see TGA without looking at bloodflow), so they missed it.  But I'm okay with that, our journey went how it was meant to.
So Happy Fourth Birthday to our beautiful miracle boy, who thanks to the wonders of very smart doctors and modern medicine, is alive and healthy today.

Love you my beautiful boy!