Follow-Up

So we had every appointment under the sun today! It was nice to get it all done in one day and have Mike there to help, but it's been a long day.

First up, we met with the plastic surgeon. He said everything looks great and took off the steri-strips. We asked about the bump on top of her head, along her incision and he said it's bone that he grafted there that will eventually level out and blend in. They took some pictures, said see you in 6 months, and we were off to our next appointment across town.  

Last picture with the steri-strips. 

Next up was hematology. They did the usual height, weight, and paperwork. Upon review by the Hematologist, clinically she looks fine. The blood clot isn't affecting the coloring or temperature of her leg and foot. So the doctor wanted an ultrasound to review the clot's status. They managed to set one up with radiology over in St. Pete. Making it appointment number five of the day.

Hands are delicious even in the hematology office.

We then went next door to get an MRI. Abriana screamed for ten seconds and I thought that going in with her was going to be a terrible decision but then she fell asleep. I was seriously comforted when she was zonked.

After thinking we lost our blanket and finding it in the car, we were off to All Children's Hospital for our other appointments. A little snooze in the car for Abriana, and we were up to see Neurosurgery. They looked at her and said you look great! Get on outta here! :) We'll see ya in three months! They did show us her CT scan which we later wished we would have taken a picture of to explain to everyone else, but it was a great display to help is understand what her bone structure now looks like.

Nap time.

Next it was down to radiology for that ultrasound where they reviewed the thrombosis in her right femoral artery. And we learned they added an x-ray of her skull to the list. She was very good for the ultrasound but of course screamed for the x-ray. We won't know what hematology has to say about the thrombosis until at least tomorrow. We'll either see them in a week or six months.

Still a happy girl at ultrasound. 

Entranced by the cartoons.

Mike looking VERY pretty in his sparkly purple led x-ray vest.

We then drove around the corner to see my buddy Dwayne at USF St. Pete. He showed us around the new student union and got to snuggle with Abriana. (I swear I took a picture but it's no where on my phone - boo.)

All in all a long, but good, day.

Post-Op Day 5

Neurosurgery checked in this morning and after a half an hour phone call for follow-up appointments, we headed for the door!

Pausing only to say bye and thank you to some lovely folks and pick up some breast milk.

Glad to be headed home, but who do I call to deliver me free room service meals now?! Ha! :)

Post-Op Day 4

Today was pretty medically uneventful.

As far as plastics and neuro are concerned, surgically, she's cleared to go home. BUT with her blood clot, they want to watch her to make sure there aren't any bleeds that occur because of the aspirin. She just started to take it yesterday. So they may want to watch her up to 48 hours. So hopefully that means we're going home no later than Tuesday.

We had some lovely visitors today and a cute delivery!

Post-Op Day 3

Today has been another good day!

Early EARLY this morning they detached Abriana's IV line. She was only getting 10 cc's an hour and had begun to feed well. She has two IV's still I'm her arms but they're not attached to anything.

Early this morning she had an ultrasound on her femoral artery blood clot. It's still there so they're starting her on an aspirin regimen to keep platelets from sticking to the clot and making it bigger.

She had an MRI as well and the neurosurgeon said everything looks good.
We then got the word that she was being released to a regular recovery floor. So we moved rooms and she got rid of a lot of wires! Love having a wireless baby!

The plastic surgeon also said she's looking good!

We're starting to see more and more of our baby girl coming back. Little smiles. Raspberries. Looking around, checking everything out. It warms my heart to see her personality shine through.

Enjoyed some visits from family and friends today and two delicious deliveries too!

Post-Op Day 2

Today went much better than expected!

Instead of continued increased swelling, the swelling began to decrease beginning early this morning. She looked like a pirate for a little while.

Mike, his mom, and myself were all able to hold her today. (She was too uncomfortable being held yesterday. )

The hematologist stopped by and said if he hasn't seen the ultra sound he wouldn't know that she had a blood clot in her leg. The color and temperature of the legs are nearly identical.

By the end of the day she was nursing. Her swelling had gone down enough that she can open both eyes.

She has a little cough and is spitting up some mucus. Her temperature was rising but has been kept in check by the Tylenol. They're keeping her in the PCU because of her blood clot.
Hoping for another day of progress tomorrow!

Post-Op Day 1

We got a decent night's rest crashing on the pull-out chairs here in Abriana's PICU room.

Abriana's temperature came down and hasn't been an issue all day. :)

Her right leg and foot was inexplicably cold. They did an ultrasound and found out that there's a small clot in a part of her femoral artery where her arterial line was for surgery. They don't want to give her any blood thinners for 72 hours. So for now they have some cream on her foot that will dilate the vessels to allow more blood flow to the foot.

She was extubated around noon. She's slowly gaining her voice back.

She had a CT scan shortly after extubation. Doc later said that all the bones look good.

Neurosurgeon feels good about how she looks.

She drank some milk tonight. Nothing like a normal feed and I'm still pumping, but it's a start.

We spent a little time outside of the hospital and got some lunch. It was nice to get out and the food way really good!

It's nice to see her little mouth and nose now that she's extubated and has been cleaned up. She looks like herself. And that makes me happy.

 Abriana has a question.... 'Can I please get this tube out?!'

 Intubation free!

 Midday

 Gifts from friends

This evening. Her left eye is completely swollen shut. She can open her right eye just a sliver.

She'll probably continue to to swell, which is tough to see her hurt, but hopefully she begins to improve after tomorrow.

Surgery Day Updates

2:18am - Last feeding before surgery, Abriana went back to bed.

3am - shower, pack the car

4:17am - one last diaper change and we're on the road to All Children's

5:44am - Checked in at surgery registration

6:20am - IV in and screaming

7am - X-rays (shunt series)

7:40am - in MRI - put under for short series

8:17am - Headed to the OR
10am - All her lines are in, getting ready to check out the shunt
10:45am - spoke with the plastic surgeon who is currently watching from the sidelines as they work on the shunt. Arterial line took a long time to put in.
11am - met with the neurosurgeon. Shunt was blocked and was replaced. Now they'll start on the encephalocele repair.
Noon - Plastic surgeon has just begun the repair
1pm - neurosurgeon is almost done with his part and is going to close the dura matter and then the bone reconstruction can start.
1:40pm - talked with the neurosurgeon - he's closed removed the protruding brain matter and closed the dura matter. He's happy with the thickness of the dura. She's had minimal blood loss.
2pm - plastic surgeon is working to reconstruct her nose
3pm - neurosurgeon is done. Plastic surgeon has been able to move her eyes a little closer together and reshape the nose. Multiple people have said what an amazing plastic surgeon he is.
4pm - all the plates and screws are in place. The plastic surgeon is deciding what skin to remove and how to close her up. Estimated surgery completion 5:30pm.
5:10pm - talked with the plastic surgeon, they're still stitching her up but he showed us pictures and she looks great! Waiting to go see her!
6:20pm - she's up in the PICU and we're headed up to see her.

Overall it was a long day but it was made bearable by those who sent messages and prayers and came to visit and cheered us on. The doctors say she did very well. They were able to do a little more in depth reconstruction than they thought they would be able to. So that's great! We expect lots of swelling and crabbiness in the next few days.

She's currently spiking a fever which is normal after brain surgery but needs to come down so they can extibate her.
Abriana 2.0:

Thank you

So I thought I was ready. I took Abriana to her pre-op appointment today. She did really well and didn't even cry when they drew her blood. We had to wait for a written approval from cardiology because of her arterial septal defect (ASD).

I called later in the afternoon to confirm that she'd been cleared for surgery by cardiology and got the all clear. ::phew!:: I was feeling pretty good and prepared. And then I received a call from neurosurgery....

Her CT scan from last Friday revealed that her ventricles had inexplicably grown. So the neurosurgeon needs her to come in and get an X-ray and an MRI tomorrow before surgery. This rattled me.  I had a plan.  Now I'm juggling to get answers and making new plans. <insert panic attack here> So now we'll be venturing to the hospital even earlier than our previous 6am call. And they'll be searching to figure out whether her shunt isn't working or if it's having some sort of problem or why her ventricles are growing.

I suppose I'd rather them find out what's wrong and fix it now when they're already having to go in there, but the uncertainty of not knowing why it's happening or how they can fix it gives me anxiety.

On a separate note, what this post was originally intended to say was: Thank you. Thank you to all the wonderful people thinking of us and praying for us and supporting us. We really appreciate it, more than words could possibly say.

As my niece said during a conversation about how tomorrow is Abriana's big day:

 "no it's not her big day tomorrow, it will be a bad day for her because she has to have brain surgery, it will be her little day. The rest of her days will be her big days because she will be all better".

Yes, indeed, little one.  Tomorrow is a little day.  All the days after will be big days. Cheers to those big days ahead.