You take the good, you take the bad….

Today was the longest day of my short little life.  After bothering me late last night to have that silly bath, the mom’s woke me up at 5:30am this morning, so that I could have some water, change my diaper, put on clean sleepers and then they pulled my tube out.  It was all so fast that I barely even noticed most of it and before I could even really cry about the stupid tube, we were in the car and on our way to Sick Kids.

When we got there, we went straight up to the cardiac floor and got me all checked in and the super amazing nurse Cathy, showed us to my room, but not before I met one of my surgeons and he drew his initials on my chest (I’m not sure why, but I guess it was to make sure they didn’t operate on my head or my leg by mistake).  A lot of the nurses on the floor remember me from my first operation and were so impressed with how much I’ve grown and how long my hair is.  Once the oogling ended though, the mom’s made me suffer through another surgical bath, changed me into my hospital pajamas and then I promptly fell asleep while Mommy rocked me in a chair.

I woke up again when we were walking down the the waiting room and several more people told me how adorable I was before some new nurse lady made me say “see you later” to the mom’s and off I went.  I stop remembering what happened then because they gave me a whole lot of drugs, so I’m going to turn this blog post over to Mama C, who can tell you the rest of the story…….

Lily’s surgery was scheduled to last 5 – 6 hours, including preparation and closing.  Mommy and I had a very long morning and afternoon of waiting and waiting and waiting, getting more anxious with each hour, but luckily with some very kind guests – my mom with Jason and Theresa, who kept us from actually going insane.  Finally around 3pm, Lily’s surgeon came out and found us to give us an update on her.

The repair of the AVSD, which was supposed to be the main part of the surgery, was done without complications and they were really happy at this point with the results.  They were able to remove the bands that were helping the blood flow through her aortic valves and generally entire peice of the surgery was done very well – no need for a pacemaker and the heart was beating well.  Unfortunately, at this point, he did go on to tell us of a complication that they hadn’t been expecting.

Apparently, on one of the EKG’s that had been done, they noticed some narrowing of one of the pulmonary veins on her left side (the veins that bring blood from the lungs back to the heart).  They had thought at the time that it didn’t look very severe but they wanted to take a look at it and make sure.  When they saw the veins in person, the story was much different.  Each lung, the left and the right, have 2 pulmonary veins that all lead back to the heart (4 veins in total).  The veins on Lily’s left side have significant narrowing. , which means the heart has to work harder in order to get that blood to move.   Lily’s surgeon tried to get in to widen each of the veins, but there wasn’t a lot of success – one of the veins is blocked completely and the other one is narrowed quite significantly.   The surgeon didn’t give us a lot of information at the time because I’m sure we looked completely overwhelmed so we don’t have a full understanding of the long term implications of this yet, but we know that it’s not fantastic.

We had to wait for the surgery to finish and for Lily to get transferred to the Cardiac Critical Care Unit and get stabilized before we were allowed in see her.  Because the surgeon spent extra time working on her veins, her body was exhausted by the end of the surgery, that they didn’t want to put her through the extra stress of closing up her chest.  So, right now, her chest is still open and the surgeon is waiting for a couple of days to let her build back up her strength before they close her back up.  They can do it right at her CCCU beside, which means she won’t have to endure another surgery to have it closed.

It has been an incredibly long day and now Mommy and I are back at home, just having a quick dinner before we go to bed, try and get caught up on some much needed sleep before we head back to see her in time to see the doctor in the morning.

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3 thoughts on “You take the good, you take the bad….

  1. Thank you for the update…. you must have been so tired! Good luck today! Love to all! Prayers go out to you all especially Lily.

  2. Hi Mama C
    First of all, CONGRATULATIONS!!! Your daughter is absolutely beautiful. What a lucky little lady to have you in her life. Will keep you all in my heart and prayers as you continue on your journey with Lily.
    Love Janice Mc (you know me as Lapierre)

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