The Brilliance of NIKE

Home for the first time since 5:54 on Friday morning. Husband is back at CHEO spending a couple more hours at my little Hailey's bedside before heading back here to sleep in our own bed tonight, and Alex is up in the nursery sleeping alone for the first time in well over 6 months. It's been quite a 48-hour stretch.

I don't know how we (as in all people who go through ridiculously tough situations in life) all make it through, but we do.  We JUST DO IT. I don't know who it was that came up with NIKE's slogan, but it is simply a universal rule in life's challenging times, isn't it?

My little Hailey underwent yet another surgery on Friday morning, this time to repair a NEW kind of hernia, a Paraesophageal Hernia, and it took well over 3 hours.  We were the last of the 'early morning' parents left in the waiting room, and the 'afternoon' parents had been there an hour already when our surgeon (a sweet, youngish, vertically challenged but highly skilled Italian man - who has been Hailey's surgeon from the get go) came to give us the run-down on what he had had to do to repair our baby's issues.  It was fairly complicated and involved, he said, but ultimately he was very pleased and he was confident it was a great success.  PHEW. 

Unlike the first repair, he was unable to use the existing diaphragmatic tissue to sew up the hole, so the only hiccup was needing to introduce a prosthetic mesh to patch the area around the esophagus. This, I am to understand, can cause the body to react negatively to the foreign substance (which doesn't seem to be happening in this case), but it can also mean that there could be issues in the future with re-herniation, and so I THINK this means Hailey will have more future follow-up and be monitored more closely in the event that another hernia develops.  Boo.

It's amazing, I find, how resilient we all are, both physically and mentally.  I mean, yes, in a WAY, being back at CHEO is calling back to mind that living hell I went through for the 30 days after the twins were born; not knowing if Hailey was going to live, not sleeping, not farting (head back in time on my blog to read about that one), not being able to conjur up breastmilk to feed my babies, and carting a newborn baby back and forth to the hospital day in and day out in order to reunite with ANOTHER newborn baby, equally needy, who went without Mommy all night long.  Brutal.

But I can barely remember that month.  I mean, I REMEMBER it, but I don't remember how it truly felt. It's all a distant nightmarish dream.

Now, it's hard, yes, but we're old hands at this.  Once I see that she is okay, I am just settling into the temporary but new routine of juggling time with Alex at home with Hailey at the hospital. It's fun for Grandma and Grandpa to babysit and have fun time with my strong, healthy girl, while Mommy is tending to my spirited and sweet Hailey, and it seems natural for me to be home now with Alex while Daddy is with Hailey at the hospital. Ho Hum.

As I said, we just do it. 

(oh, and as for Hailey's immediate future, we were successful at introducing first water and then milk to her diet today and so we hope tomorrow will be solids and Monday will bring her release back to us.  And then?  Hopefully NO MORE SURGERY. Ever.  Please.  But if we have to do this again, we know we can, and so can she.)

Thanksgiving weekend it is then

Friday, October 7 is the date set for Hailey's surgery.  I hope we don't have any episodes before then forcing us to go in prematurely, but if all goes well, the Friday before Thanksgiving weekend it is.  My thinking? It's good timing.  Hubby has Monday off just in case, and with any luck (and lots of thanksgiving for the blessings we have been given), we will be in and out before the weekend is over.

Here's hoping.

Until then...one more month of playdates and fun times with the girls - who's in?

Well, Fark

My husband has had a hernia repaired.  I have a 'bellybutton' hernia. And my baby HAD a diaphragmatic hernia at birth.  Now?  It's a Paraesophageal hernia (hernia #2 for little Hailey). From what they can see (and it isn't all that much), it seems as though the exit of the stomach (the first part of the intestines), instead of heading downward, has snaked its way up, pushed through a little hole beside where the esophagus comes down through the diaphragm and some of it is trapped up there, causing occasional backup, and likely explaining ongoing 'noise' we hear insider her chest after feeding.  The section of the intestine is hidden, apparently, behind the liver, and tissue has likely attached the two together, making for delicate work to extracate it and bring the bowel down without damaging the bowel or the liver. 

Sigh.

So, what this means is that the FIRST thing they want to do is microscopic camerawork to determine what is going on and how severe it is, and if it is what they think it is.  At that same time, once they determine the nature of the condition, they will do whatever it is they have to do to fix it.  This could be quick and not too difficult, or it could, because of the fact that it is hidden behind the liver, require a nice, big incision up the middle of her chest.  Time will tell.

So now I sit here waiting for CHEO to call back and let me know when we can get her in for the surgery.  In a sense, it is 'elective', meaning that unless or until Hailey has more episodes, we don't NEED to have the surgery, but the condition, pending another episode, can get more severe and cause complications if not dealt with.  So here we go again.

She's strong and we're strong, but this still really bites the big one. 

My poor little fighter...

More to come later.

What's the word on the beach, you ask?

Oh, how I miss my blog!  As I sit here at my parents' dining room table, I have one baby not sleeping and starting to fuss in her playpen, another being fed with dual effort of Dad and Grandpa, and Grandma trying to get dinner going.  What am I doing?  Well, I am trying to cluster-pump to try get ahead of the game, as each 3 hour period, I try to fit in feeds to little Alex, as well as pump enough for Hailey's feeds.  I have been playing catch-up ever since they used all my frozen stores at CHEO for her overnight feeds.  It's stressful, since I absolutely HAVE to pump a minimum of a certain amount each 3 hours, and the stress has sometimes limited my supply (not to mention lack of sleep, lack of food and not always hydrating enough).

I will say this about that...breastfeeding is by far the hardest thing I have ever done.  Bar none.  It's worth it, but boy...with twins, it's a crazy, crazy never-ending job.

On Friday, December 3, exactly one month after the twins' birth, Hailey was released from the CHEO hospital. It was a long day, as the night before was a bad night for babies in the Ottawa area, and what was a relatively calm NICU became over-booked with new admissions.  This meant that morning 'rounds', where all the amazing medical staff (dieticians, resperatory technicians, nurses, pediatricians, neonatologists, etc.) review each case and discuss the treatment plans for the next 24 hours took an incredibly long time.  It also meant that the pediatrician who had to go through our Hailey's files for her release could not get to it until late in the day.  It was a long, chaotic day.  In fact...a long chaotic month, which I do believe has heavily affected Alex. More on Alex to come.


So yes.  Hailey was released, and by all accounts her recovery was remarkable.  The previous post that outlined her surgery reveals how extensive the abdominal reconfiguration was, and the fact that our only challenge in the end was to get her to gain weight through feeds is incredible.  One of these days I will chart the timeline and put it down to see the whole picture, but it is all testament to the incredible work of Hailey herself, but the incredible CHEO staff.  On our departure, we left behind a big gift basket filled with sweets and chocolates to make their shifts a bit better over the next few days, but nothing can truly compensate for what they did to save my little one's life.  Such an incredible team of selfless and loving people I have never met.  What they do is so hard, yet it makes such a massive difference.

Now, for the first time ever, we are back at Grandma and Grandpa's house, and I haven't had to go ANYWHERE for the last two days.  It feels GREAT to just be here, in the moment.  Later this week we begin the move back to our home in Kanata and by the weekend, we will finally be in our home.  It will still be really hard, but it will be normal.  Gawd I love the sound of that. 

And who knows?  Maybe I will be able to blog once in a blue moon, if all the stars align and I have a free moment.

Thanks to everyone for all their support, love, prayers and congratulations.  What a ride!

Here are a few shots from our last day:

New socks for both Hailey and for Alex (outfits came later, but ultimately, Hailey ended up in a fresh sleeper.  There was, uh, an incident, let's call it, with Grandpa on the scale which we were using as a change table...) Can you tell who is who?

Dylan the dragon and some friends all packed up and ready to go.

Grandma in the isolation room (our 'hotel' room over the final three days where this Mom was trying to ensure Hailey got enough nourishment to grow and gain weight in order to go home).

Mommy holding Hailey just before her release.

Hailey loaded into her car seat for her first trip out of the hospital - the air is good there, but fresh is best!!!

Daddy ready to roll with both his little girls. 

What all parents of CHEO babies pray for...

And when we got home, Mommy gave Hailey her first bath, then wrapped her in her duckie blanket.  The heart melts...

Ahhh....