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.

The Next Layer of Icing on the Cake

You're probably here because you're looking for an update. The update of the day is that the blood test (thyroid level) that was REALLY important to have done today, was forgotten. The lab technician drew blood for the other (less important) lab tests but didn't see the paper for the thyroid test and therefore never drew it. There were a few other issues that we found out about so at this point I'm pretty positive the surgery will not be happening on Tuesday.

Please pray that this prolonged wait (which is occurring due to multiple people making errors) will NOT permanently affect her brain development.

Thanks!

Surgery Probably Postponed...Again

I can't think of anything inspirational to say but I did just want to ask for prayer for a few things:

• It's looking like Anellah's surgery may actually NOT be happening on Tuesday, please pray that her thyroid level has improved so that the surgeons can proceed safely.
• Please pray for our family as we're worn out and discouraged, we could definitely use some peace!

Thanks!

Lindsey

Pumpkin Time!

We've been enjoying Daniel's Mom being here and the timing worked out well since our daycare provider decided to take a few days off.

Today I had a meeting which included Anellah's attorney regarding starting preschool and all the delays we've encountered. It's pretty crazy that we're still working on this considering she was accepted and verbally everyone agreed that there wouldn't be an issue back in July! But it sounds like since attorneys are involved things will begin moving rather quickly.

We do have a new surgery date, October 25th, I am told this is "tentative" but haven't been able to get a straight answer as to what may cause it to change. So we're planning on October 25th! Time to start scheduling/rescheduling!

Anellah is doing well, she's happy grandma is here to give extra attention (though probably not as happy as Buddy is!) She's been enjoying lots of reading and singing. We've all been enjoying lots of good food.

Next Steps

We don't have any updates so far on Anellah's surgery. Her endocrinologist wants to talk to the surgeon but they've been playing phone tag. The good news is that due to this whole fiasco, my mother in law has decided to come visit/help out TWICE! I'm super excited about that.

I'm still working on figuring out preschool. I'm learning that it is much more difficult than one would think. Unfortunately despite a lot of laws being present to protect people with disabilities (and diabetes is considered a disability) different organizations can squeeze around them and come to the conclusion that providing for this particular child is not necessarily their responsibility. I thought we had a solution to preschool (that the Head Start program had figured out a way to make things work so that Anellah could attend) but today, after a few phone calls, I am kind of back to square one. The good news- I sat down to do some praying, listening, and thinking, this afternoon with my Bible, my journal, and a cup of tea. I had an idea that I think just might work to get funding for some extra help to enable Anellah to attend preschool! Praying that it was a God-provided epiphany. :)

Regarding adoption- we have more good news and a timeline!! The first court date is set for February 1, 2012. This is just one step in a series so the soonest things would be completed would be six months after that date. August 2012 may been like a long time to wait but we're actually happy to have more time that Anellah is in foster care so we can utilize that to get her into big-kid Head Start for the 2012-2013 school year (pending the above issue getting resolved).

Thanks for reading!

The Rest of the Story

Isaiah 41:10 

So do not fear, for I am with you; 

do not be dismayed, for I am your God.

I will strengthen you and help you;

I will uphold you with my righteous right hand.

So most of you know bits and pieces of what has been going on lately via Facebook. Here's a more complete picture.

The past month has been filled with making scheduling modifications with our work schedules; juggling my work schedule by finding people to cover for me and changing meetings; postponing and rescheduling Anellah's speech therapy; physical therapy; early intervention sessions, and other appointments (she has about 4 per week); and making other arrangements around Anellah's schedule. I also struggled with coming to terms with the fact that Anellah needs to have surgery and just kept thinking, "She has gone through so much before the age of three, what's the rest of her life going to look like? Will she be able to live a 'normal' life? Will she ever be able to care for a family of her own?" After some much needed quiet time with God at a Women's Retreat I was able to come to terms with these questions. I was READY for the surgery and READY for it to be over!!

Yesterday Daniel took Anellah to her "last" appointment prior to surgery- an MRI under anesthesia and a pre-op appointment. They were expected to be done by 11:30am. Due to ANOTHER error by their scheduling coordinator (I'd given her feedback before about scheduling problems she had caused) Anellah and Daniel were stuck at the hospital for 9 hours and Anellah had to be poked for blood 10 times. Finally, however, they were allowed to leave and told, "see you Monday." That was our first time discovering the surgery had been changed to Monday rather than Tuesday. After they left her bloodwork was reviewed and one of her thyroid levels was abnormally elevated. We were asked to return to the hospital to have the blood drawn AGAIN and if the level was accurate rather than a lab error, the surgery would be postponed.

This morning Anellah and I returned to the hospital to have her blood drawn again. This afternoon I received a call that her thyroid level was at a dangerous place and the surgery would not be performed until further notice. Basically I was devastated and overwhelmed.

But God DOES give strength to the weary, right? And He doesn't give us more than we can handle? So many times I have felt like if He gives me one more trial it will be too much but it's amazing how much more we can stretch than we think we can!

We are so thankful that Anellah is a good sport. Through everything she is happy and smiley. She is still learning and growing despite the fact that she shouldn't be able to based on her thyroid levels being so off and her brain being out of room to grow. But maybe that's one of the miracles God is performing in her life.

Here's an example of Anellah's attitude.