My daughter: My hero

This post was supposed to go up yesterday, the one week anniversary of baby Hailey’s surgery. As per the norm these days, I couldn’t get to it, and likely won’t finish writing this in the time I have allowed for it today either, as I have to run shortly to take baby Alexandra to her 2 week doctor’s appointment.

As I sit here in the ‘pod’ at CHEO, I can hear the not-so-coarse anymore cries of my little Hailey, who as of this morning is off oxygen and breathing room air for the first time since her birth. She is still being fed by a tube, but Mother’s milk at a higher and higher dosage every day. I found out today that it will be another 5 days or so of increasing this continuous feeding method before they will be looking at starting regular feedings (i.e. larger amounts all at once).

Alexandra is here in her bassinette stroller, sleeping, but increasingly restless – it will be again time for more boobage shortly, and so maybe this blog won’t be as detailed as I would like, and frankly, I want to hold my little girl one more time before I have to skip out.

So as this title says, my daughter is my hero. There is no other way to describe the fight she has in her, and her tolerance of all she has been through. The photos will show it all. What started as an initial cry and big deep breath at birth (great for Mom and Dad to hear, but VERY bad for Hailey and the nurses who then had to decompress the lungs and remove the air from her stomach and bowels) has progressed past a number of days of stabilization, surgery five days after birth on Monday, November 8, an initial feeding trial only two days after surgery (which was regurgitated several hours later), then continuous small feedings that Friday which have progressed from 1ml/hr at that point to now 5ml/hr with another 1ml/hr added every 12 hour period. Her ventilation tube was removed on Saturday, her medications were completely weaned down on Sunday, and all signs are very, very good.

Here are some shots before her surgery. The first was shot by Art in the OR right after she was intubated.

This shot is the first time Mommy got to see or touch her little hero. She was only there for what seemed like a moment, then carted off to CHEO. Daddy went with her. It was excruciating, but necessary.

Then came the first 72 hours after Mom’s surgery.  Trying to nurse. Trying to recover. Trying to make my way over somehow to CHEO without being allowed to bring big sister Alex.  And the little I did get there, this is what I saw…a damn cute little helpless, but tough baby girl, with tubes coming out of what seemed like every area on her tiny body.  Hard to look at, and yet we knew this was what was necessary to save her.  To stabilize her for just long enough to get ready for a crazy ‘work over’ to come.  We didn’t know how long she would need to be in this state, drugged and intubated, and waiting, but in the end it was only 5 days.  A small amount of time, a lifetime…

Then, surgery day.  What can I say about surgery day, November 8?  Hell on earth? We won’t get into the emotional roller coaster, but here, in a nutshell, is the overview of what ‘technically’ happened.

The Surgery

The surgery was scheduled for 11 am on November 8, just 5 days (albeit long days) after Hailey’s birth. She had been stable almost continuously and so everything was looking great in terms of her readiness for what was to be a major reworking of her organs. We hadn’t met until then with the surgeon, and so it was literally right before her surgery that we met with our exceptional surgeon. We were shocked to see that he was younger than we were. Very soft-spoken, and when we asked for him to draw out a diagram of what the situation was and what he was going to be doing, he obliged. One day I will scan that image and put up a post about it, but in the meantime, we have something even more incredible…an x-ray of the before and after.

In the before shot (above) you will see that essentially all the bowels, stomach, intestines, and even the spleen and part of her liver are all stuffed up in her left lung cavity (the black masses). The left lung, inside the cavity, is collapsed in behind all the other organs, and her heart, which is supposed to be kinda in the middle of her chest cavity, has been squished over to the right, displaced.

And here is the after shot. All her organs have been moved down and into place, and if you see the left lung cavity, you can see the faint outline of her left lung, partially expanded. Eventually her lung will fill this cavity as it grows and gets stronger, and the heart has already started to migrate over to its proper position.
One of the biggest concerns of the surgery was the discovery of how large the hernia/hole actually was, and whether or not there would be enough surrounding muscle tissue to close up the hole without introducing artificial prostheses. If they were able to patch the hole without the artificial patch, her likelihood of re-herniation and complications would be greatly limited. Turns out, although the hole was considered quite large, there was enough tissue there to patch it together, and so the prognosis was excellent. From there, the next question was going to be “Are all the organs fully developed and functioning as they should be?” Time would tell on that front.

Oh, and I should mention that while meeting with the surgeon, I did ask him directly if he had had a good sleep and confirmed that he had not gone out for drinks with his buds the night before. Although asked in a joking manner, I was dead serious. We all have bad days at work, right? The nurse afterward was flabbergasted that I actually came out and asked that question.

So here we are, 10 days after her surgery, and she is up to 9 ml/hr of Mommy’s breast milk. She is also being held by Mom, Dad and even Grandma and Grandpa these days, and as of this morning, I have been told I am allowed to put her to my breast to help her learn to breastfeed. I can’t say what this means to me, as I was so nervous that she would learn to feed through a bottle first and not know how to latch. I can’t wait.

So I guess that means I want to wrap this up. I have some feeding to do – both of Alex and of Hailey. Will try get another blog post done shortly, but given this took 4 days to finish (and I still have to format and upload pix), we’ll see.

Here are some more shots of Hailey at various stages after the surgery.

And then the ventilation tube came out, and stuff slowly got removed from her body.  Starting with the ventilation tube!

What a fighter. What a survivor.
My daughter: my hero.
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12 thoughts on “My daughter: My hero

  1. Totally agree with whoever said Hailey is not the only hero. Quite the experiences you are all going through. I'm in awe of you all. Best wishes for getting through the final stretch and bringing her *home*.

  2. Thanks everyone. Yes, it's incredible, this story, and while there is still no definitive word on when she can go home, it has been a remarkable recovery and it shouldn't be long now. It can't come soon enough!!!

  3. Wow, she is a little fighter. And a CUTE one at that! Both girls are looking lovely, and I bet their mum is too….though I bet you're tired, as well! Hope she continues to improve, you get to have the joy of tandem booby feeds, and everyone is home safe and sound soon.

  4. Just wanted to mention that although it is hard, it's ok if she doesn't learn to breastfeed. Sarah never did and I pump milk for her even now, almost 16 months later. Still best of luck on getting her on the boob!

  5. Pam, thanks so much for always sharing your family's journey. Both of your daughters are so precious. Hailey is such a fighter and she is so lucky to have such a loving and dedicated family to stand by her!!!!

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