Saturday, December 28, 2013

~*Ana's Surgery: The Long Version*~

Consider my mind blown! What a rapid and crazy two weeks this has been...and yet, at certain points it just drug by.

The short version was bit by bit on Facebook but I wanted to put everything together here...so we can go back and look at it again. 

We had so many {mercy sightings} it was KRAZY!

Our morning started at 3 a.m. but I slept from 9-11pm and was UP and could not go back to sleep. That was a near fatal mistake...whoa, was I feeling it later! We showed up at 6:30 and went back to Pre-Op. We hung out there for awhile until I went back to the O.R. with her. 

Why do we always get those resident Anesthesiologists that have NO experience with children? He held the mask on her face and she started SCREAMING bloody murder! The attending Doc. threw the mask off the table (across the room really) and yelled at the resident "We are NOT doing it like this! We are not going to do it this way today!"  The room went silent as Analina simply breathed in the gas that was held near her mouth for her to breath in. The wonderful attending Doc. whispered lovely things to my Ana as I left the room. Every person in there was looking at the resident, who held his head in shame. I hope he learns that gentleness is the key with children.

We waited in the main part of the hospital, made friends with the most amazing receptionist who kept us updated, whenever we wanted, on her surgery. Our wonderful Pastor met us at 8 a.m. and stayed the entire time with us. He prayed over us and our sweet girl and waited with us all those long hours. We did not get back to see her until after 3pm.

She did great during surgery and while she did throw up post surgery she recovered quickly from that and was eating/drinking within hours. She was feeling mighty good...too good...I'll explain that in a moment. She was in PICU (Pediatric Intensive Care Unit) and was the stablest child there and she was there as a precaution. She had amazing staff in the PICU and made many friends, including a sweet Doctor who was adopted from Korea many years ago. She called Analina her "Asian Sista"....Ana, honestly, was the talk of the unit! 
Trying to stick out her tongue and keep her popsicle from coming back up.

small smile before the real pain kicks in.

Our view from the PICU. A beautiful park heavily used even in the winter.


Ana was mad as a hornet at not being able to get up. She had to lie flat for 48 hours and it was tough! They require this to guard against cerebral spinal fluid leaking, also, it could cause severe headaches. She now has one spinal cord but two hemicords.  She was on pain meds every two hours and neuro checks every hour so she had very very little sleep. 
Analina's name banner.

Trying to keep her occupied while flat on her back for 48 hours.


She took a turn and began developing a fever, was increasingly uncomfortable and was very nauseous. After much consulting it was determined that the implanted pain control ran out earlier than expected. She had the benefit of a spinal block and an implanted pain control which gave her and all her caretakers a false sense of what her true pain level would be when it wore off....I had no idea about the implanted pain control or I would have been all over the Neurosurgeons learning about it. The morphine was upped in duration and that began to help her be more comfortable. She was released from PICU to the regular floor.
View of the cemetery...

Our view from the regular floor.

When we reached the regular floor we did not mesh very well with the nurse. We had another moment of mercy and she went home and the new nurse was a great fit! The new nurse was on top of the pain meds and only came every 4 hours for Neuro checks and vitals. We got some much needed sleep!
Seeing santa walk in the door.

Listening to santa tell about her bear.

Huggles.

Sweet donor who enjoys giving back by bringing gifts to the kiddos.

No more pictures mom.

Love this girl in blue/maize!

Analina hates...despises...cannot stand the student Neurosurgeon. Whenever he came into the room she broke down into tears...he belittled her level of pain and belittled her. He said the morphine was to stop that day. The amazing nurses told us they would give her morphine whenever she needed until literally the stroke of midnight!

When Analina was ready we got her up and in the wheelchair. She took an hour long nap on my lap in the rocking chair and it felt so wonderful to hold my girl! She explored our floor and the playroom from her wheelchair. Daddy stayed on Wed. and I went home to our 6 other blessings. 
Lots of pain and lots of nausea.

When I left she had gotten the catheter out but was unable to urinate on her own. One of the most concerning possibilities of her spinal cord repair was that she could lose her ability to control her bowels and bladder. An ultrasound revealed a very full bladder and under threat of re-cathing she was finally able to urinate.
Painting in the Child Life room.

My spunky monkey!

Love my girl

On Thursday her pain was controlled enough to consider letting her go home but she was still not up and walking. They were not sure if it was simply residual swelling and weakness due to surgery or if it is a true deficit that will need to be addressed with therapy or something permanent, time will tell. 

We were discharged on Thursday but getting her pain meds filled was a near disaster. We literally had to have the Neurosurgeon call Devin's cellphone to talk to the Pharmacist!  Craziest thing ever and we are so humbled by the kindness of her Physician's and Nurses! They were on the ball and would, literally, do anything for her and us. The staff at Mott Children's Hospital (U of M) are truly world class!

Matthew 11:28
Come to me, all you who are weary and burdened, and I will give you rest.

  

Wednesday, November 27, 2013

~*Walk With Joy*~

One year ago the pressure became too great for our sunshine and the fears of abandonment were too real. We saw our sweet sunshine rage and run, fight and then flee...It was heartbreaking to see him regress and slip away from us.


We needed another helper on our team to navigate these new waters. We spent six months seeking mental health assessments for our sweet boy and after all was said and done we were blessed with Kurt Ellis at Families Forever Counseling.

Kurt has been a Godsend to our family. He has given us tools and the confidence to parent our children in a new way. I truly wish that we could share him with everyone in the adoption world. What he has taught us has brought near miraculous changes in our children!  

Sunshine is sunshiny, again! He still has moments of intense fear and anxiety but they don't hold their grasp on him forever and we are able to help him through the darker moments. 

Sunshine recently turned 9 and that day held much fear for him. We are so proud of him and how far he has come in using his words to voice his fears. Giving him a language to use has brought him so far! I can't wait to see what the next year brings!
Autumn 2012

Our sweet princess has made remarkable progress in her attachment and healing, as well. Recently, for the first time ever, she said, unprompted, "I love you, Mom".  Those words are scary for them to say, its commitment and that is frightening to them.
 
Autumn 2013

Its so sweet to see her trying it on for size. She cautiously tries them out during quiet moments. You would almost miss it if you weren't tuning in.  

We are so blessed with the best children and at some point they will actually start to believe that.

 Until then, we continue on and walk with joy!

3 John 1:4
I have no greater joy than to hear that my children are walking in the truth.   

   

Tuesday, November 12, 2013

~*Happy Birthday, Louis*~

Our sweet Ana-banana knew several children that are now home with their families but her one and only healthy attachment was with a sweet little boy with Albinism. 
 
Analina's 5th birthday in June



His name, now, is Louis and our sweet girl is missing him greatly, today. 

Happy Birthday, Louis!
Bao Mo (Baby Mo) as he is stilling lovingly referred to!

We pray health over his sweet Mama and wonderful new experiences for sweet Louis!

Psalm 128:5
May the Lord bless you from Zion;
    may you see the prosperity of Jerusalem
    all the days of your life. 

Tuesday, October 29, 2013

~*Plan of Attack for Analina*~

Analina had another trip to U of M for her Neuro follow-up and to see the Orthopedic Surgeon. What started off as a simple 10 second CT scan...yes, it only takes 10 seconds to take a CT scan, ended with her fully sedated and intubated.

Our plan was to simply give some Happy Juice to make her loopy and then do the quick scan....plans changed when the anesthesiologist refused to allow me to join her.  As a trauma Mama I know that things like sedation and medical procedures can cause panic attacks on one hand to full blown PTSD flashbacks on the other hand.  

No amount of persuading or digging in my Mama Bear heels would get the minds that be to change their plans...she fought for her life and had to be fully sedated. I was not allowed to be with her. She remembers it all, even though we were told she would not remember any of it.

I cried ugly tears. 

Finally, I was called back and was told by Nurse Meanie that I could not touch her....I told her that I was going to kiss my girl on her cheek.  I was read the riot act for touching her. She told me that her airway could close from the slightest movement or touch. I sat there crying ugly tears for 20 more minutes....Nurse Meanie never left her post...knowing I'd sneak in kisses and words of comfort to my sweet girl. 

When we had the sedated MRI done locally at Helen DeVoss they encouraged me to climb up in bed with her and comfort her well. I understand that every hospital has different procedures but one thing is clear, we were not heard. Concerns were not listened to and that is what I grieve. 

The plan for now is to schedule her spinal surgery for the next month or two.  We will need to be covered in prayer. Her type of Spina Bifida is extremely rare and the repair will be extensive. 

Her hip needs extensive surgical repair and her repaired club foot needs repair, again, as well. This will be scheduled when she is healed from her Spinal Surgery. We see the Orthopedic Surgeon in March to discuss when to schedule that surgery.

Jeremiah 8:18
You who are my Comforter[a] in sorrow,
    my heart is faint within me.

John 14:16
And I will ask the Father, and he will give you another advocate to help you and be with you forever— 

Tuesday, October 22, 2013

~*The Outtakes!*~

The outtakes of our portrait session!

The tongue....Check out Analina


The wiggler...Check out Donosaur
Let me GO!!!!!



What on earth is he doing?


Rolling her eyes!!!


Ohhhh Ohhh!!!!












We had some fun, can you tell?



Monday, October 21, 2013

~*To Care For Oneself*~

I had a dear sweet friend who shared more than just my love for PSL's, she shared my thick, sticky blood clotting disorder.  She saw to it that I knew what would be beneficial to treating our disorder and what would be detrimental.  Whenever she came across some new tidbit of information on treating it she would send me a message. Her persistence on keeping me updated showed her deep love for others.  She recently passed away possibly due to complications of having the tendency to clot.  

This morning I washed a sinkful of sharp knives and nicked my finger and as I applied pressure to stop the constant stream of red ooze my thoughts turned to my friend that I missed so dearly.  A new definition of what it means to take care of myself emerged from that moment. 

No more will there be those sweet reminders sent in love about what can be beneficial or detrimental in treating this disorder. No more will someone have my back on this.

I'm issuing a challenge. 

Redefine:

Your health
How you care for yourself
Your goals

Don't wait for a light bulb moment.
Don't wait for someone to be sick to be inspired.

Don't wait!!!

 My goals for this challenge

Consistently workout!
(HIIT, Cross Training, Yoga, Running)
Eat CLEAN!
Be active with my children!
Be present (limited online time)

This challenge will run from TODAY until December 31! That is 71 days of opportunity to redefine how I care for myself.

How are you going to redefine your health?

Psalm 73:4
They have no struggles;
    their bodies are healthy and strong. 
 

Sunday, October 20, 2013

~*Portraits*~

We did a spur of the moment portrait and family pic session today. The sky grew sunny after raining all weekend and we drove to our fave State Park.

I think they turned out pretty good for impromptu fun!

Here's the two best family pics...



The boys and then the girls. 



Now the portraits

Kitty





J.J.






Sunshine



Dalton




Analina




Peanut





Donosaur



Mom and Dad







  
(Outtakes coming tomorrow)

Isaiah 61:3

  and provide for those who grieve in Zion—
to bestow on them a crown of beauty
    instead of ashes,
the oil of joy
    instead of mourning,
and a garment of praise
    instead of a spirit of despair.
They will be called oaks of righteousness,
    a planting of the Lord
    for the display of his splendor.