Skylar the Tree Frog

08.28.2017 Update

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We sent this email out earlier tonight.  If you want to be added, or you thought you were and didn’t get it – comment below or send us an email, text, or carrier pigeon.
08.28.2017
 
If it were not for my struggle, I would not know my strength.
Update on Skylar 💔 #1 – As you can imagine, with important things such as hearts, someone else with a more emergent issue has bumped Skylar’s surgery.  We will still be going to UVA on Thursday for her pre-op appointment, but we will be returning for the weekend.  Her new surgery date is Tuesday September 5th.
But….just kidding.  We’ve now been rescheduled…again.  The new surgery date is this Thursday, August 31 with our pre-op on Wednesday, August 30.  This date was offered to us when a cancellation came up and we decided to go ahead and take it to minimize the possibility of getting bumped to a later date.  This means we leave for C’Ville TOMORROW.  Maybe a blessing in disguise so we don’t sit around and fester in our budding anxieties.
A few things that we’ve been asked multiple times, and that maybe you too were wondering…
  • Where are we staying?
    • Initially we’ll be staying with my (Anne-Marie) aunt and uncle in Charlottesville.  Then we’ll be at the hospital with Skylar with no plans to leave except for a shower.  But we do have a home base, thanks to the family!!!  We are so grateful they are so close.
  • What is Skylar’s diagnosis?
    • Transitional AV Canal defect.  One of the most common congenital defects that people with Down Syndrome (Trisomy 21) are born with.  On the continuum of AV Canal defects from Complete to Partial, Transitional is smack in the middle.  The major pieces of Skylar’s heart puzzle that Dr G will be piecing together will be a hole in her septum between the two upper chambers (the atria) closed, reconstruction of the valve between the left two chambers (the mitral valve).  There’s a little more to it, but these are the biggest pieces.
  • How long is surgery?
    • The entire surgery process – prep through recovery – will take a few hours.  Honestly, Dr G can take as long as he needs to make Skylar’s heart as perfect as possible.  We aren’t sure if we are the first or the second case that day and won’t know until Wednesday at our pre-op.
  • Is she having open heart surgery?
    • Yes…and this part is really getting to Lisa and I.  Skylar will do great, us on the other hand?  We have some drugs to help hold us together…but really, we’re falling apart on the inside…and occasionally on the outside too.
  • Will Skylar need more surgeries?
    • There’s always that possibility.  A lot of people that have had their valves reconstructed will need a valve replacement at some point in adulthood.  However, Dr G feels very confident that this is a one and done.  Finger’s crossed!
  • How long will Skylar be in the hospital?
    • Average hospital stay is a week.
  • How long is recovery?
    • We’ve been told we’re going to have to slow Skylar down once we’re out of the hospital.  Recovery depends on her really.  6 weeks for the bone to heal, and other than that we have to pay attention to her needs to make sure she’s resting and not overdoing it as much as possible.  (How the hell do we do that with a toddler?)
Most of our updates will be through this email train.  However if you want or need out you can still follow the three of us on our blog Two Brute Yogis and on FaceBook.  If you send us a message, text, or phone call and we don’t answer, know that we are getting them and we definitely appreciate all of the love our village is sharing with us.  We really do feel all of you holding us up when we truly are crumbling at times.

There are almost 100…yes ONE HUNDRED…of you in this email thread and we are completely humbled.  (Skylar is a pretty awesome kid.)  If you do not want to be on this thread at any point, or you hear of someone that wants to be, please let us know.  We are going to be super honest and real in this thread and it could be a trigger to some.

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