Friday, 25 November 2011

Whooo Boy!

This is going to be a long one and is not easy to get it all down so bear with me, I'll try to break it all down.

Sorry to those of you checking daily, I've not been able to sit down and actually put thoughts together for the past few days.  To say that Michael and I got broadsided two days ago would be a gross understatement.  We were told on Weds that Braeden would need heart surgery and I've been just trying to process that.

I arrived at the hospital on Weds to find them just in the process of CPAP-ing Braeden.  He was struggling a bit too much on the nose prongs so they've switched him over to the CPAP.  The CPAP is an oxygen mask that fits snugly over the nose and forces a constant stream of oxygen into the nose.  The good news is that they've not had to reintubates, the CPAP seems to have stabilized his oxygen levels enough for now.  He was pretty exhausted while I was there due to the lack of oxygen and just that he's been breathing on his own for two days and was pooped out.  They had also done a chest xray that morning and discovered that he had an increase of fluid on his lungs (which is exhausting too).  They were concerned with infection but decided to do lasiks (a diuretic) instead of antibiotics to start
I grabbed the Neonatologist as he went by just to confirm my info on the CPAP.  He filled me in again on the uses/needs of it and then asked if I'd been talked to about the echo cardiogram from Monday.  When I said no he asked me to follow him into the quiet room.  For those of you that have been through any kind of experiences like this you KNOW that going into the 'quiet room' is NEVER good.  Dr.Ravi proceeded to tell me that they had in fact found a malformation in B's heart.  I know that when he was in utero that his Cardiologist had suspected there was one but she wasn't really all that concerned with it.  It took him growing and losing the fluid to allow them to 'see' closer to the area and sort out what the issue could be.  The malformation is in his Aorta (yep, the biggest damn artery in the body).  The aorta is the artery that takes the oxyengenated blood out of the heart and circulates it to the brain, lungs and then the rest of the body.  Braeden has what is called a coarctation or
Basically he has a narrowing of his aorta which compromises blood flow to the body.  Luckily (?) he has the narrowing occurring after the blood flows to the brain and lungs.  When babies are born, the ductus arteriosus (DA), normally slams shut when the umbilical cord is cut upon birth.  Braeden's has actually stayed open, which is actually a good thing in this scenario.  His DA is actually allowing some of that blood that should be flowing through the aorta to flow through the DA and take some of the pressure off.  Now, the immediate concern is that the DA is slowly closing more each day (which is why we are doing daily echo cardiograms and ecg's).  If/when that ductus closes several things can happen.  It can close and the aorta is able to sustain the increased pressure and blood flow until surgery, OR if the aorta can't handle to pressure they can use a medication to re-open the ductus and keep it open till surgery, OR (worst case scenario, and we are NOT going there) Braeden will need emergency surgery because his pressures drop so dramatically and the medication won't sustain the ductus opening.  Bottom line is that surgery is imminent, we just don't know when at this point, it could be months, weeks, or even hours.  Best case scenario is that it is controlled by medication and Braeden gets stronger and bigger therefore being able to tolerate the surgery.  As it stand now, Braeden is getting stronger each day, he is growing, eating up a storm and starting to be more alert.  There are two surgical options that they will look at, the first is that they will take a vein and 'patch' around the narrowing.  The second is that they cut out the narrowed part and re-attach the two aorta ends.  Both options have to be done as an open-heart, bypass surgery in Edmonton....yeah.  This was not the expected course we were on so Mike and I feel a bit blindsided by all of this.  I know Braeden will come through like a trouper but I'm not so sure about Mike and I, we might both be completely grey by next year.

So after absorbing this, the next logical question would be, "Is that what is causing the tachycardia???".  Unfortunately that answer is a NO.  We are still in search of an electrical issue with the heart on top of the malformation.  Yup.

I stumbled back to the bedside a bit numb to be greeted by another Dr.  She introduced herself as a genetic resident and "could we possibly speak a minute in the quiet room?".  Seriously?!  Back into the quiet room to speak with her and see what is next.  She informed me that they were doing a more formal genetics work-up due to the malformation that would go deeper than the amniocentesis did.  The good news (?) is that they aren't looking at Braeden's

I have many questions that are still unanswered at this point.

Ready for some good news?  We are good candidates to be transferred to Children's Hospital which
would give us a quieter, more calm atmosphere as they only have a few NICU beds and they generally only take surgery patients.  They won't transfer him while he is on the CPAP though, he either needs to be back down to nose prongs or back up to be intubated (not going there either).

My heart is full
The other fabulous news...hold for tears of joy...I FINALLY got to hold him yesterday on day 17.  I got to hold him for a solid TWO hours for some skin to skin contact.  PURE BLISS!!!  He and I both settled right in and he zonked right out as I just held him as close and as tight as I dared.  I kept making sure he was breathing (not like he isn't attached to a thousand machines that would tell me otherwise) but I don't know if I breathed.  We are hoping to do skin to skin each day now if he is able to...that should surely help my mental health and hopefully some sort of milk supply!  The hilarious thing is that he filled his drawers for me as I got him settled in the beginning but I did dare do anything about it for fear they would want to take him back and change him!!!  Michael unfortunately didn't get a snuggle as they recommend only one a day till Braeden is stronger and used to it.  I suppose that I will share though, he gets the next turn when he doesn't have to be at work.

I guess you have to just take the good with the bad, is it wrong to point out that I am done with the 'bad' for now??

Such a tiny little man!

Daddy transfering B back to bed (not a happy B)

Grandma's healing hands

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