So it's the eve of another hurdle...

We checked in at pre-op at 7:30 this morning, and they proceeded to shuffle us around from room to room, poking at prodding at her till about 4.. She endured fasting, restrained X-rays and at one point today, no less than 7 technicians tried to take blood from our poor screaming Alex, resulting in just enough to coat the tube.. Our little fighter, exhausted and unable to stay awake as she sat on her daddy's lap at the end of the day, is not even nearly done with her battle.. Tomorrow at 7 am we will be forced to bring her back and hand her over to a team of surgeons who will preform the next stage in the surgery, known as the Glen, in which they will redirect some of her blood flow to the lungs in order to lessen the load of her heart. This will, of course, be for the better, as she would not survive another couple months without it, but it will still be very difficult, now that she has been home with us, and as her cardiologist at Children's said, "she's no longer hypothetical,", she is our baby. 

Our very real child who we have grown even more dangerously attached to, making it a heartbreak to give her up to something so scary with only hope to guide us till we see her again. We know she will be okay, we cannot believe any differently than that, and we look forward to bringing her whiny butt home again so that we can trade our exhaustion from traveling, being at the hospital, and watching Alexandra be basically tortured in the name of her health, for a different kind of exhaustion. The kind that comes from round the clock feedings for fussy babies who won't take more than an ounce at a time. That's what we want.. Our picky little princess back at home with her boisterous brother, who between the two of them have Jason and I ready for bed at 10 (only to be up again at 2, of course). Here, on the eve of her second surgery, Jason and I, although terrified for her all the same, have grown to consider our little girl lucky.

Lucky, that she was born into a world with such amazing medical technology and knowledge. Lucky, that she has something somewhat fixable, as opposed to something with no recourse. And lucky, that she was created and put on this earth so vivacious, so determined to live, that no heart condition could ever get her down.

Thanks and Happy Easter!

I'm so grateful that we live as close as we do to a hospital as wonderful as Boston Childrens' Hospital, but it sure doesn't feel close once you make the 2 hour+ drive over and over. I can't even begin to imagine what the families from other states and countries that are in need of the same medical attention deal with on a regular basis. This whole experience has opened my eyes to the community of people who practically live at Childrens', that know the hospital by the back of their hand and can identify all the staff by name. I truly am glad, as I'm sure those people are, that there is such a great hospital that saves so many lives and makes it possible for so many children to take a breath every morning and fall asleep holding their mother or father's hand at night. That said, when Alexandra goes through her Fontan surgery and is given the opportunity of a break from that hospital, I will not miss the doctors and nurses that have taken such good care of her, I will not miss the familiar faces in the cafeteria, and I will not miss walking through the halls knowing exactly where I am going without thinking. I will leave the hospital with our baby girl happy for her successes, and I will continue to pray from afar for all the little ones who remain there. This is not to say that she will not need more surgeries or that I think nothing could ever go wrong, but our little girl is strong, and I believe in her and know that in the end she will be alright. That belief keeps me from planning for more trips to Boston, even as she suffers setbacks and health scares, because for every setback, she gains a milestone and shows me that she isn't going to let her heart problem stop her from where her heart wants to go.

*Just as an update* Alexandra's next surgery is scheduled for the 25th of this month and she will be admitted the 22nd. Either Jason or I will be updating the blog before then but I wanted to give everyone a heads up since we initially thought and told everyone it would be the end of May. Thanks for your support and prayers!

It's been awhile..

So it's been a whirlwind of a two months (+ some) since Alexandra's surgery. We were pleased to be able to take her home so early, even if we did have to rush order everything because we didn't know she would come home so quickly. But we were (and are) happy to be able to finally have her come home with us. Since then, it's been a dizzying array of appointments, medications, fortified formula recipes, pulse oximetry measurements, and it's pretty much all we can do to keep our heads on straight. But we're getting used to it, as is she (she still hates the taste of her Zantac something fierce) and the routine has become part of our life. We now know what to watch for, which helped us to realize that there was a little something off with her when her oxygen saturations, still above the danger zone, were low for what we knew of her. Which brings me to my next point: The cardiologist confirmed what we had suspected about Alexandra's sats being too low for comfort which he said was a result of the shunt in her heart shrinking. Because of this, she will be in

Boston on Tuesday where she will be catheterized and they will use a balloon to expand the shunt and buy her some more time till her surgery to grow and get strong. We are confident that she will be fine and are grateful for the support you all have given us thus far. Thanks!

Surgery..

Alexandra's surgery will be Tuesday around 3 o'clock. We've been and continue to be very optimistic but as anyone can guess it doesn't quash the nervousness that we feel going into this. We appreciate all your prayers and support through this difficult time and are eager to take our little girl home healthy and strong like we know she will be. Thanks again!

She's here and oh so healthy!

Alexandra Monroe Holt was born on January 4th at 9:56 pm. She weighed 7 pounds, 6 ounces and has a cry so loud you'd never be able to call her fragile :) She is doing so well right now that they have tentatively scheduled her surgery for Monday or Tuesday as opposed to some babies who must get the surgery within the first 2 days of life. We feel really blessed right now that she is so strong and in such capable hands. Thank you everyone for your thoughts and prayers and happy new year!

Danielle