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Cancelled!

Yep, so our Third attempt at going for her Sclerotherapy/Injection surgery (originally
scheduled for Sept 13th) has been canceled once again. While it appeared
her temp was going down and she’s not showing any other signs of being
sick- we thought for a moment she would still be going… but I
definitely believe God had other plans… here’s how it all went down…

Sunday- came down with fever of 102
Monday- Fever was between 99.4-100.2
Tuesday- Fever was 99.1 (close to normal)

…..until
moments before I was going to take her to the Dr and I felt her body
burning up…. Dr took it at the appointment and it was 102 again.
Obviously we’re not going to get cleared for surgery with that!
(if the fever is still up for 2 more days- they want her back in for
bloodwork/urine analysis etc- to see if there are any infections- otherwise everything looked fine – ears, lungs
clear, no secretions, no strep etc.)

Only an hour had passed til I got home and she didn’t feel very warm at all- temp was back down to about 100.

This surgery wasn’t meant to happen- at least not now,
obviously. Though we wish we knew why… we have to accept it for what it is.

As it stands now we are looking towards scheduling this for late January/early February–
to be sure that it does not interfere with labor and delivery of the
new baby and doesn’t happen in the midst of bringing the baby home to
get settled. We are waiting on a more definite date.

Nonetheless, as always- keep her in your prayers. 

I put Mary Elizabeth to bed last night and even went in to check her in the middle of the night and she was fine, sleeping soundly with no sign of any problem.

I walked in at 8:45am as she was awake lying in bed and upon first glance I knew something was wrong, she looked flushed and a little puffy. Low & Behold she had a temp. Came out of no where, she doesn’t appear to have a cold at all, her secretions are clear and not in abundance etc etc – she’s even acting if nothing is wrong.

Surgery is scheduled for Thursday. We are afraid of a 3rd cancellation. If you are a faith-filled friend/family member or even stranger- please pray that whatever is causing this ends right away.

We do know it’s not up to us, whatever happens is God’s Will but it is hard to swallow for us as the sclerotherapy did help her back in June and we want to keep her on track with her surgeries as it helps her physically and developmentally with many improvements seen. If she cannot have surgery Thursday, I’m afraid she may not have it til sometime in the new year because she needs her recovery time and we can’t chance having her recover in the midst of the baby coming.

Thank you in advance and I of course will post an update by Thursday.

So now Mary Elizabeth is feeling much better and hopefully it will stay that way so she can have surgery on the 25th. We’ve been keeping her busy as our little helper in preparing for the next baby. Although ME probably thinks we’re lying by now as we’ve been telling her for a long time that she has a new baby coming soon.

Andy & ME put together our new cradle that my mother purchased for us. The old bassinette that was passed down & redone for us to use for ME was great, adorable & special… But it was starting to give-out towards the end. The legs weren’t sturdy and the inside was warping a bit. So it was time to get something new. We thought we’d go with a bassinette again but Andy fell in love with the idea of a cradle and I liked it too.

The weekend that ME’s cousin Evan stayed over we started cleaning out the nursery and moving the crib mattress back up (which Evan got to test out!). So things are coming along in there and ME definitely knows it’s not her room because when you ask her she says no, and then when you ask her about her new room she says yes that it’s her room!

We also went shopping for homecoming outfits and though it was hard for me, being the picky person I can be… we ended up with two perfect outfis. Obviously couldn’t do a dress if it’s a girl like I did for ME, that was a bummer but came up with a very nice/soft outfit. And for the boy went with something cute, cozy and comfy as well.

Here are the pictures:

(Blue velour outfit for the boy with a blue/white stripe undershirt and matching hat, will be adding white booties)

(White fuzzy sweater top for the girl with pink bows & ruffly
edges, velour-like pink pants with ruffly edges, matching hat &
booties)

We’re all getting very excited!!!! Can’t wait to meet baby Natalie or baby Andrew 🙂
 

That’s right, surgery is cancelled again. And yes, it’s because she’s sick. She was hardly sick last time if you could even call it that. But this time it’s the real deal. Fever, congestion the whole nine yards. And she’s swollen too……

You see when she gets sick her malformation is affected as it’s a
lymphatic one. The lymphatic system kicks in to fight
sicknesses and for her, the extra fluid builds up as her lymphatic system
doesn’t drain properly. So anytime she’s pretty sick- she has these
flare ups, and is swollen. Her tongue & face are right now, so it
adds additional discomfort.

So due to that she’ll have a round of steroids/antibiotics prescribed by Dr. Waner so that it doesn’t get worse and so that there is no LM infection that becomes a problem. She should be feeling better in a few days.

She was however checked at the pediatrician’s office and is clear of anything like strep or ear infections etc.

So….. onto the new date- October 25th.
Prayers are that she can be free of any complications, sicknesses and get the surgery she needs and that surgery goes better than expected when it finally does happen.    

OK though today wasn’t a major surgery, I thought I’d post an update anyway.

We were late to the hospital due to a lot of traffic. But it all worked out. She ended up going in at 10:30 (instead of 9:30)… and we were in the car 50 minutes later. Fast I know, but this was minor compared to a lot of things she had done as it was a steroid injection to the tongue to help with swelling from the previous laser surgery.

After Andy left the Operating room to bring ME in, 15 minutes later the Dr. came to see us. He figured he’d examine her mouth a bit while he had her out since she’s not very cooperative when she is awake.

Here are the basics of the convo:

They are taking it easy on the tongue for a while to see how she grows into it. They don’t want to do too much as you can’t add to the tongue size- only decrease it, so they are treading with precaution in order to make sure it doesn’t become ‘too small’. And yes while it still appears quite thick, any surgery to it makes it smaller in length as well. This does not include laser procedures as they affect the surface only.

His next thoughts on working on the tongue is to make an incision to the floor of the mouth underneath the tongue and fix the current problem of it seeming to be tethered to the bottom of the mouth.

Basically this means she doesn’t have enough freedom or mobility because it’s stuck down a bit too much with all the cysts there.

An x-ray will be planned to make an online model of her jaw line in preparation for her future surgery- where they cut the jaw bones on either side, pull it back and lift it up, since it’s displaced. They need to determine the right timing on this surgery and be sure they don’t do it prematurely or too late- I guess it’s an age/growth thing.

This surgery could be a while away but they still need to make the necessary steps in determining not only when it should be, but precisely how it should be done.

So while talking to him about all this, we then noticed the person who recently joined his team and was standing by his side during the conversation was also one of the Doctors that was there in the room for my c-section/EXIT procedure the day ME was born and also aided in her first ever surgery at 7 days old with her old ENT Doctor (the same day she received her tracheostomy). Pretty cool to run into her as she remembered ME & all.

After talking, we went to see ME, and she was already awake and wanting us. We took her home and she napped in the car. She was absolutely fine today, just a bit tired from being up early, not napping that long and then of course having anesthesia today. So she went to bed quite early. And we’ll be headed there earlier too as it’s been a long day!