Deafness, Gigi

The Night Before Activation

Dear Gigi,

It’s the night before the activation of your Cochlear Implant.  This has been a LONG time coming, sweet pea.  A Facebook memory just popped up yesterday reminding me that it was a year ago now when you received your first hearing aids.  A year.  That is not normal.  Some kids have Cochlear Implants placed and activated within three months of arriving in the U.S. through adoption.

I’m glad we took our time to decide if this was right for you.  I’m so sorry that you had to go through so much pain to finally reach this point.

Before tomorrow, there are a couple of things I want to say to you.  I know that you won’t be able to read this for awhile, but this is a great way for me to journal for you for the future.

I want you to know that we aren’t doing this to change you.  We love you just the way you are.  We are going to continue to try to learn as much sign as we can.  We would never expect you to learn to speak just for us.  If you never say a word, we love you to bits still.

We’re doing this to give you more options, and more opportunities for bilingualism.  I want you to be able to read english, and not at just a 2nd grade level.  I want you to read at grade level.  This tool will make that easier.

If it doesn’t work, I will be sad, but only because you went through all of this only to have that be the outcome.  I will never, ever be sad about who you are.

You are my sweet girl, forever and for always, no matter what.  Thank you for letting me be a part of your journey.

–FullPlateMom, who can’t wait to see what tomorrow brings.

Adoption, Deafness, Gigi

Physical & Psychological

Before all the adoption paperwork updates, I think everyone might want a Gigi update.  She is doing so well!  We are out of the woods on any bleeding issues that might have occurred from the reinsertion of her implant.  The plan is to activate it on April 5th.  We are so excited at the new opportunities this might bring for her!  

This week was spent getting our psychological evaluation and our physical exams done.  On Monday, we met with a psychologist who is experienced in writing evaluations the way that Colombia needs them done.  The psychologist we chose lives in another state, so we used the wonders of technology to meet with her.  Our Skype conference took place during the time that the kids were filing in from school.  So, she got to see the ‘real’ us.  Cate wandered in and out showing me beautiful drawings she had made.  The older kids would come to the door randomly and shout ‘Who are you talking to mom?!?’ before they’d realize someone live was actually chatting with me.  Whoops.  But, if you wonder what it’s really like here, well, that’s it.

The purpose of these evaluations with a psychologist isn’t solely to decide if mental illness precludes us from being adoptive parents.  Honestly, the other fifty million forms we filled out would have raised that red flag.  This is a safety check, yes, but we also filled out a 567 personality index that assesses how well we deal with stress.  Yes, 567 questions.  It took me about 45 minutes each day for three days to finish it.  Joe was able to get it done in one day over the course of about 2 hours.  My mind kept wandering and I’m a nervous “test” taker, so I chose to break it into chunks.  We then scanned our answer sheets into the computer and sent them back to the psychologist.  She will now write the report and send it to both our placing agency and to us.

On Wednesday, I had my physical.  I see a Nurse Practitioner that I actually worked with when I was a floor nurse at the children’s hospital.  She took the six pages of documentation that is required from her in stride.  There is a three page form for the home study, another two page form for the Colombian government, and because I have a past surgical history, she will have to write a letter to the Colombian government saying that it in no way affects my ability to be a parent.  All the forms going to the Colombian government have to be notarized.  Luckily, we live in a large city where the medical practices are large and employ a notary within them.  If yours does not, sometimes you’ll meet resistance on this step.  You have a couple of choices.  You can offer to bring a traveling notary with you.  Those do exist, but they will add cost to your process.  Or, you can remind your medical provider that every bank has a notary, free for you, if you have an account there.  This is for an adoption.  They should be willing to do this for you.  If not, you might want to assess if this provider is really in this for you.

I set up all the forms with sticky notes so that Joe could just follow me in 24 hours later and see the same provider.  This isn’t his usual provider, but this always works well to see someone that I’ve already seen so I can guide them through the paperwork.  Since Joe doesn’t have a regular provider, this is possible as well.  This person can then become Joe’s provider and I kill two birds with one stone.  **Before we go all ‘this is what men do, never see the doctor, to be honest, I didn’t have one either.  We’re self-employed, and largely, healthy people.  We switch insurance policies, for us, as often as we can to get the best deal possible.  This means changing primary care providers.  I have had three in three years.  The only difference is, I know who mine is.  He always has to ask me.  Sigh.**

We both had to have HIV tests, Hepatitis screens and TB tests.  If your provider codes those as ‘screening’, they are considered ‘essential health benefits’ and, because of the ACA, MUST be covered by your insurance.  This applies to you even if you have employer-sponsored insurance.  Yes, this is a blatant plug for the Affordable Care Act.  These will be excluded from your deductible even if your employer, or spouse’s employer, provides your insurance, because federal law currently mandates it.  So, thanks Obama.  And, thank goodness the ACA is here to stay.

We will pick up our notarized paperwork from the doctor next week and then scan copies of it over to our social worker.

Today is our first home study visit.  I will write all about what that entails in the next post.  The state we reside in recently changed its law regarding home studies for adoption.  This means that even though our social worker knows us VERY well, she has to start the home study process from square one.  No ‘update’ for us.  Such is life in adoption.  Laws change.  Costs are added.  This is what we do.

FullPlateMom, who is going to hashtag this one #ThisIsAdoption, just like on Facebook.  You can feel free to follow me there too.

 

Adoption, Deafness, Gigi, Isabel

Paperchasing from the Halls of the Hospital.

I do my best adoption prep from the ICU.  It’s where all of Gigi’s paperwork was done, while Tess had open heart surgery.  This time, Isabel’s paperwork is being done from Gigi’s bedside.  She is spending a couple of days in the ICU as we re-insert her Cochlear Implant and try to make sure her bleeding disorder stays in check afterward.

So far, so good.  There was a small amount of bleeding after surgery, so she’ll go home on a medication to help with that.  We have to be taught how to use that.  We’re waiting for the pharmacist to do that now.  She is getting stir crazy.  We were roaming the halls pretty late last night, with a hot dog, and Nemo on board.

This week in adoption involved filling out reams and reams of paper about Joe and I.  When you want to adopt, you have to have a social worker evaluate your home.  You have what is called a “home study.”  Part of this evaluation means writing autobiographies and parenting resource plans.  You write a self-reflective paper about yourself and then you discuss the child you hope to adopt and all the resources you’ve identified in your community to help your placement be successful.  School resources, medical resources, adoption support resources, they ask about ALL of them.  I’ve written these so many times.  I would love to say that I could just cut and paste my answers from last time, but sadly, the Social Workers are smart to this and the questions change ever so slightly each time we do this.  I understand that, and it is better that way.  These questions should be asked of me each and every time we do this.

46 pages.  Joe and I typed 46 pages of information about ourselves and our resources.  We sent that off mid-week.

Colombia requires that a psychologist evaluates us prior to adopting too.  Neither one of us has a history of mental health diagnoses.  If we did, it wouldn’t be a deal breaker.  But, we’re not established with a mental health professional, and the report Colombia asks for has to be written a very specific way.  We had to find someone who could do this and establish care with them.  We did.  That evaluation will happen on Monday.  Filling out the information she needed from us comprised another nine pages of writing.

55 pages of everything you could ever want to know about Joe and I.

-FullPlateMom, who is really sick of talking about herself.

Deafness, Gigi

Re-implanting, the Guilt that Comes with Another Try.

On Friday I made a call to the surgery scheduler for the Otolaryngology Clinic at our local children’s hospital.  We have made the decision to try to implant Gigi’s left cochlea again.  She called back today.  We are on the schedule for re-insertion of a left-sided cochlear implant on March 16th.

Yes, after everything Gigi went through, after nearly dying, we’re going to try again.

I understand what a controversial decision this is.  I know what it must look like to someone who is on the outside looking in.  I’ve typed this 18 times, some of the first drafts of this post were defensive and so angry, some were apologetic, others were just sad.

I’m all of those things.  I don’t know that I’m making a choice that honors what Gigi will want in the future. Our goal for Gigi has always been bilingual and bicultural, but that is OUR goal for Gigi.  I don’t know what she will want.  All I can do is study the research.  So much research.  Research about literacy.  Research about social isolation.  Research about family relationships between hearing and Deaf siblings.  I have found it and read it all.

I’ve made the best choice I can for a child who is caught between two worlds.

The hearing world has no idea why this is such a controversy.  You’d want to “fix” your kid if something was “wrong” with them wouldn’t you?  The Deaf community wonders why I adopted this child in the first place if I view her as someone who needs fixing?

These are valid questions.

My answer lies somewhere in the middle.  I don’t think of Gigi’s deafness as a disability.  Much like I don’t view Bowen’s Dwarfism as a disability in the broadest sense of the word.  Her deafness, his Dwarfism, neither will have an effect on either child’s life expectancy.  But, the world wasn’t made for either people who can’t hear, or people of short stature.  They struggle so badly.  Both of them have, and will continue to, be viewed as less than.  I am only looking to give them tools to help level the playing field.

A cochlear implant is to Gigi what rods in Bo’s legs are to him.  Bo has curving in his legs.  He will move easier in this world if we, when it is needed, straighten the bending in his legs.  I am not looking to lengthen Bowen’s limbs (yes, that is a thing).  I am merely looking to help him walk easier in the world.

If I can give Gigi some access to sound, this will help her walk easier in the world.

Isn’t that what every mom wants for her baby?

–FullPlateMom, who will delete all negative comments or references to “cultural genocide.”

Deafness, Gigi, Tess

Full Circle

One week ago, Gigi, our Deaf 4 year old, had a Cochlear Implant (CI) inserted on the left side of her head.  I didn’t write about it here because this decision comes with some controversy.  The Deaf community often feel this is an attempt to “cure” your child’s deafness.  It was not.  That is all I need to say about our choice.

Our Deaf daughter’s deafness needs no “cure” and a CI certainly isn’t one anyway.

I took this picture of her at our Murder Mystery NYE Party.

She looks fabulous, right?

Her left eye is a little swollen and red though.  By the next morning, it was totally red and bruised, like someone had punched her.  We called her doctor, he said he wasn’t too concerned.  A monitor goes over her eye in surgery.  He thought maybe that had bruised her?

Then she began to complain of a severe headache.

Hmmm…I was told this was okay?  But it didn’t seem that way?  So, I made the decision to make the 90 minute drive to the large children’s hospital we had chosen to put the CI in.  Tess had an appointment there the next say anyway.  FullPlateDad and I decided Tess, Gigi and I could get this bruising checked and then spend one of our last night’s of winter break in a hotel, go to her appointment the next day and come back after a fun girl’s night out.

They took one look at Gigi and rushed her to the Operating Room.

She was bleeding from her implant site into the space between her scalp and her skull.  The surgical team removed A LOT of blood.  Over 100cc, hence the headache.  We were told we would stay the night and then likely go home.  This wouldn’t occur again, she should be fine.  The implant seemed fine.

At about 2am, while we were sleeping with Gigi in her hospital room, Gigi woke me by banging her hand on the side rail of her bed.  She looked exceptionally pale, so I went to check on her.  She told me “Feel sick” and then “Want water.”  I turned to get it for her and when I turned back, her eyes were unfocused and her whole body was clenched.  I called her name, momentarily forgetting…Deaf.  Then I began to lightly apply pressure to her sternum to get her to focus on me.  Her eyes rolled back into her head.  I pushed the button for the nurse.  She stood there for a moment and simply watched Gigi seize.

Gigi has severe Congenital Heart Disease.  We can’t just watch her seize.  I knew a seizure was going to lead to larger issues.

So, I called the Rapid Response Team myself.

I explained the situation, and Gigi’s history, to the 18 people who now stood in her room.  “She’s either bleeding into her brain now or she has an overwhelming infection.  Either way, time is of the essence.”  I told them.  “You choose, CT or lab draw, but…let’s go!”

They seemed skeptical.

They moved though.  They moved with the skill of a group of people who have danced together before, but are learning new choreography.  They chose CT, so we rushed her there.  Turns out, that was a good choice.  Gigi was bleeding into her head again.

I looked at the little pull out bed where just 20 minutes ago I had been sleeping, not soundly, but well.  A little face peeked out at me from under the blanket we had brought from home, thinking we would use it at our girls night at the hotel.

“Mom, is my Gigi sick?”

“She is, love.”

“They’ll fix her.”

She said it with total conviction.  She wasn’t trying to convince herself.  She KNEW IT.

Faith like a child.

A nurse with a man bun came to get me from CT.  That’s all I remember about him, man bun.  He said his name, I’m sure, but it didn’t register.  There was a problem.  Gigi wouldn’t be coming back to this room.  Grab everything you can, we need you in the PICU.  I grabbed my shoes, and slung Tess onto my hip, leaving everything else behind, and we RAN.

I was greeted by one very crowded room and an ICU attending who was obviously running a code.

“Very concerned.”  “Blood pressure 40/20 in CT.”  “Cutting a central line.”  “Epinephrine drip.”  “Call your husband.”

I did.

I told FPD that, once again, there had been a change in the dance.

The nurses who weren’t busy with their own patients took Tess to the nurses station to color Gigi pictures.  As she walked down the hall, she turned back to me.

“I know my Gigi’s going to be okay, Mom. You found the BEST doctor and hospitals for me. Now they’re going to save Gigi. I know they will. Tell her to FIGHT, mom. Tell her like you told me.”

I didn’t even get to say anything.  I was ushered into the room and asked to help.  Gigi was awake and scared.  They needed me to explain to her that they were going to poke her now to give her medicine to make her feel better.

I didn’t though.  None of that was as important in that moment as what Tess had told me to tell her.  Tess, the one who had named her sister before we even knew who she was.  Tess, the one who insisted that this was HER Gigi and that we needed to go and get her from China.  Tess, the one who wouldn’t even consider the possibility of losing her now.

Tess, the one with faith like a child.

As I stood over Gigi, her blood pressure falling to almost nothing, people cutting lines into her, but her eyes still looking up me, I simply signed to her.

“Tess told me, FIGHT, you MUST!!!”

Swear to God, Gigi nodded.

They kicked me out then.

Gigi made it.

After another harrowing trip to the OR, some damage to her heart from the lack of blood flow, and a surprise diagnosis of a clotting disorder, they removed Gigi’s CI and she is in the Operating Room as I type having her first stage of heart repair.

Her heart just couldn’t wait any longer to be fixed.

Our hearts can’t wait to kiss her face again.

This is a dangerous surgery.  Not the repair in and of itself, that should be okay, but Gigi’s blood doesn’t clot normally, and she is going into this feeling fragile.

Again, we ask her to fight.  Fight, Gigi.  FIGHT.

–FullPlateMom, who needs her tiny precious Gigi to just keep swimming and warrior on.