Post Op Day 5- We're Home

Last night ended up being the only night that I spent at the Hospital since she was moved out of ICU and needed someone to be at her bedside to operate her insulin pump. The accommodations were comfortable but, as with all hospital stays, there were lots of night-time interruptions.

First nap of the day, sharing a bed with Mommy for the first hour

This morning I had resigned myself to leaving tomorrow since Anellah's blood counts were down again. But, evidently all the prayers from our First Covenant Church Family gave the doctors confidence in Anellah's physical state because they discharged us this afternoon! Anellah has a few follow up appointments this week and a few new medications to take for awhile but according to her discharge paperwork she is "ok to return to daycare/school." She is still VERY easily exhausted meaning that she takes lots of naps, that's great for me because I can use the nap time too. She is still taking her pain medicine but it is down to every 6 hours instead of every 4 hours. Her head is continuing to become less and less swollen although I still call her, "my little black-eyed baby."

Finally getting to play with her babies again

We were both SO HAPPY to come home this afternoon. She just wanted to play with her familiar toys and make sure everything was the same as she had left it. And, of course, she was VERY happy Grandma was around to sing to her and read books.

Post Op: Day 4

When I arrived at the hospital around 8am this morning, Anellah was still asleep. Evidently she had slept all night! It was so good to see her sleeping in her usual position- bum in the air- rather than how she'd been sleeping- on her back propped up with pillows.

When she did wake up she was fussy but after some oatmeal, a diaper change, and some pain medicine she was a happy camper.

We went for a wagon ride and she was THRILLED that we found a playground and I let her gently go down the slide.

We moved to a room today out of the ICU. Now we have access to a bathroom, we can talk on our cell phones, eat/drink, and turn around without squeezing past something (even with a pregnant belly!) It's basically like sharing a hotel room with a stranger. :)

According to our surgeon's colleague who is checking his patients over the weekend- we might get to go home tomorrow! He also took off Anellah's "hat" to reveal some nasty matted hair! But the incision is healing well (see photo below if you dare!)

Thank you again for your prayers, support, and visits/food deliveries! It sure beats paying for cafeteria food all the time.

Post Op: Day 3

I think the postings are going to start slowing down again.

Anellah is still rapidly recovering.  She has about 60% of her left eye and 10% of her right eye back in use. She's much happier and much easier to console.  She's playful and active and although she still is in pain you can tell it is much less.

Today she was cleared to move from the I.C.U. to the regular floor, but we are awaiting room availability.  That will allow us a bit more privacy, space, a bathroom, and we can eat and drink.  It seems everything is on track for a timely departure.

We are looking forward to picking up Anne tomorrow evening and the delicious food that is guaranteed (or our money back) after her arrival!

Everyone has still been getting plenty of sleep too!

Thanks for you prayers and support!

P.S.  Anellah will be getting the dressing removed prior to departure, after which there will be no helmet, just a stripe shaved in her head.

Post-Op: Day 2

From our estimation today the worst of the swelling was yesterday!

She is a lot more lively, using her words, eating, playing, singing, dancing and asking for a lot of peanut butter.  To those of you who know her: she is no where near her regular levels at these things, but she's back to her usual making lemonade out of lemons again.

Just this evening her swelling has gone down enough that she's learned she can lift her eyelids (with her fingers) and see.  Nothing has made her happier and smile more than to look around.  Stand by for the update on her upcoming eye infection. :)

As you can see she's in a wagon, we've been making trips around the hospital (mainly to the cafeteria) to air her out.  She loves the wagon.

We are all getting plenty of sleep too!

New news:
-Discharge is more probable for Monday.
-Once she's off an I.V. we'll leave the I.C.U. and have a private room.
-She should be able to start opening her eyes tomorrow (which she has been politely ask for, "Open eyes, please.")

Post-Op: Day 1

A Daniel authored post: (Note from Lindsey- sorry about the weird formatting) Are you ready for an encouraged post?  You’re in luck! Just a warning- it's long. Things have really been going great since Anellah was admitted to the hospital.  As I’m sure you read in the timeline the surgery is completed and Anellah is in the Pediatric I.C.U. recovering. I’m sure you’ve also seen the pictures and they may strike some as being concerning.  We’ll give you some more information it put you at ease. The three surgeons that attended her surgery are top notch.  One from neurosurgery, one plastic surgeon and one for safety.  What more could you ask for?  Although it took almost an hour and a half longer than predicted we were assured that everything went normally and that they are all very pleased with the results.  Better yet we have been visited by at least one of the surgeons daily to check her progress and everything that is occurring is as expected (and normal).  She did receive a ton (not literally) of blood during the procedure and has had to have a little extra so far in her I.C.U. stay.  Not uncommon, but noteworthy. Right now her face is very swollen from such a traumatic event.  But this is expected.  We were previously warned that the worst of the swelling would be occurring approximately 48 hours after completion, that would be tomorrow afternoon. As it is she is sleeping a vast majority of the day and feeling very little, if any, discomfort.  She is awake for short periods, usually for medical procedures and tests, and is often very irate for that period.  She is difficult to console and a bit more violent than usual but she recognizes our voice, IS consolable eventually, is eating, drinking and using her words! Last night after meeting with the I.C.U. staff Lindsey and I felt comfortable enough to come home and sleep.  Early this morning Lindsey went to the hospital and I joined her around noon.  Tonight Lindsey planned to stay at the hospital but ended up deciding to come home. While at the hospital she’s getting a lot of good reading in and is close at hand to help the competent nursing staff. On the note of the nursing staff… We have been EXTREMELY encouraged by the competency and communications that have been occurring.  The doctor last night allowed Anellah to stay on her insulin pump and learned how to use it because he recognizes it as a superior form of diabetes control.  They have written orders that Anellah can have a normal (not “diabetic”) diet.  That may sound strange but the “diabetic” diet the hospital follows is poorly organized and understood and restricts many foods to being sugar-free (which isn’t something we/her endocrine team support).  She has had the same nurse both evenings who communicates amazingly, supports our thoughts/opinions and is truly working to make Anellah’s stay efficient.  Expected time of departure from the hospital: Sundayish. On to closing the loop on the administrative side of the hospital.  The hospital social worker paid us a visit today.  We let her know our frustrations with the hospital administrative side, including that Patient Relations hadn’t even returned our phone call.  She was sympathetic (although she has previously been part of the problem) and arranged for the Patient Relations employee to come visit with us.  Upon meeting her we are resting assured that our experience will be one that the hospital learns from and are expecting written explanation and apology for the ordeal.  We hope it helps others in the future. I’m reminded of the Israelites slavery in Egypt.  They must have seen each plague as the sure-fire exodus from slavery.  Yet pharaoh’s heart was hardened time after time.  We were so confused and upset time after time when we felt there was no reason for the surgery to be postponed.  But God has a plan and He succeeded as always.  It’s truly humbling to look back at the frustration I lived and know of the faith and peace, which I could have experienced instead. There ya go! An update, a life lesson and some entertainment, anywhere else you’d have to pay for this! Quick additional praise list: -Lindsey doesn’t have to go back to work until March (earliest) -Anne Royal is coming back to cook and clean for us on Saturday -Great friends stopping by to see us/bring snacks at the hospital

Lindsey and Anellah's first day of "bedrest"

4:45am- Parents wake up
5:45am- Leave Home
6:00am- Arrive at Hospital
6:15am- Anellah wakes up

6:30am- PreOp

7:30am- Taken to the Operating Room (in a drugged state)

9:00am- OR called to say surgery commenced (Mom and Dad bored)

4:45pm- Surgery Over!!
5:00pm- Recovery- the swelling has begun!

 5:05pm-But the baby sleeps

We'll be headed home "soon" (whatever that means in hospital terms) and back tomorrow morning. Thank you to everyone for your thoughts and prayers!

Excited for Surgery?

I never thought I would be excited for my child to have surgery. But I AM excited because there is only a LITTLE chance that surgery would be changed/cancelled/postponed at this point.

We are very much indebted to a family member who was able to get us in touch with our Congresswoman's office today. A representative from her office immediately contacted Children's Hospital and it's just amazing how everything else was able to work itself out!

The "correct" court consent was pushed through the courts and should be on file at Children's. I brought Anellah to have her thyroid levels re-drawn today and they had moved from "critical" to "high."

Thank you, everyone, for your thoughts and prayers. They have surely made a difference as things have come together today.

I was also anxious about taking time off work if the surgery was changed because my PTO was slowly being eaten away by all of this surgery preparation. Today my OB put me on disability so knowing I won't need to return to work until AFTER the baby is born is also a huge relief.