Tuesday, August 18, 2015

Back to School

The Burri have returned to school for the 2015-2016 year.  Everyone was excited going into the day.  Some feel more enthusiasm about having school again tomorrow than others.  All lived to tell about it...

This year we have Jacob in 2nd grade, the twins in Pre-K, and Hannah....keeping us on our toes.

Friday, August 14, 2015

R is for Resilient {Palate Repair Recovery}

I've had the blessing of receiving countless messages, texts, phone calls, and e-mails inquiring of how Miss H is recovering from her surgery.  The best word I have is resilient.  Hannah is an amazing, strong, brave, resilient little girl.  We are blown away with her recovery.  Our neighbor asked us the other day if we felt like we'd gotten away with something because it was going so well.  Truth?  We are so pleasantly surprised by how she is handling it!  She is doing remarkably well and much better than we anticipated.  That is not to say we haven't had our fair share of struggles, however.

Hannah had her surgery one week ago.  One week ago she was a mess of an overwhelmingly scary amount of bloody drool and misery.  She slept for nearly 24 hours.  Saturday she refused to swallow her own saliva, let alone food or drink.  We felt like we would never get out of the hospital.  And then something happened.  Either she just got hungry and thirsty enough or she really believed my firm tone about sitting in time in if she continued to refuse to drink, but she started to drink.  Pedialyte and grape juice mixed together (thank you, Nurse Cadie, for that recommendation!).  Once she realized she could drink and drink with minimal pain, she moved on to food.  It was slow, but slow and steady.  By Sunday morning she had perked up and was looking (and acting) a lot more like our Hannah!

Once home she needed a lot of holding and a lot of snuggling.  She is very nervous about Mama leaving her.  She spends quality time in the ergo each day.  She wants to keep close and keep an eye (or hand) on me at all times.  This is not surprising based upon her separation from me at the time of surgery and we will oblige her need for Mama right now with the hope that it should go back to where it was rather quickly.

Our greatest struggle at home was the night terrors.  All...the...time.  The pain medication we were giving her was making sleep all but nearly impossible.  She had to sleep on me, then have a night terror, then settle back down to sleep an hour, another night terror, and so on.  This was through both naps and during the night.  By Wednesday we decided to see if we could get her down to just over the counter pain management and it worked!  She slept sooooooooooo much better!  She cried about three or four times that night, but that's what it was.  Crying.  She was coherent and knew who I was.  I could settle her quickly.  Progress, people!  Progress!  We will take it!

She is eating well, but growing in her frustration on the limitations.  It is a guessing game to know what might strike her fancy at any given moment.  She wants her "usual" snacks and most of them are off limits. She wants to eat what we eat and so many things are no-no's right now. Favorites right now?  "China noodles" (chicken lo mein) and frozen go-gurts.  I'm running out of ideas and beginning to wonder exactly how long we have to carry on with this soft food limit?  We see the surgeon on Wednesday and that ought to give me a better idea.

She wants to suck her fingers.  So badly.  She struggles to get to sleep and needs some rocking and bouncing from Mama again to help her drift off to sleep.  She is so sad.  She will look at those fingers and then look at me and say, "Ow!  No, no!" 

She is incredibly difficult for me to understand and she is beyond annoyed by this.  I was fluent in Hannah prior to the surgery.  We could have full conversations.  No context needed.  I understood what she was saying about 99% of the time.  Now?  Not so much.  I know I'll become fluent again, but things are so new in her mouth and sounds aren't being formed in the same way and I just can't understand her as much as I once could.  I need lots of context, some grunting, and some pointing.  She is very sensitive to this and cannot stand that I cannot understand her.  This has been the greatest source of meltdowns since we got home from the hospital.  I don't blame her.  She's fluent in English and clearly speaking in English to me, yet I cannot understand.  How frustrating must that be?

We finally (finally!!!) got assigned her speech therapy session today and will being that once we get the all clear from the surgeon (probably in early September).  We've been waiting for this to line up since May and had really hoped to get in for some sessions prior to her surgery so she could begin getting used to it.  Obviously that didn't happen.....

Her voice has changed.  A lot.  It is so hard to describe and explain, but it is very different from what it once was.  Chris and I both heard it the instant she cried in the recovery room.  Just like her lip repair, I miss her old, raspy, alto, LOUD voice.  I will get used to her new higher pitched, more nasal, and quieter tone and I'll come to adore it, just like I did with her new smile.

Overall, we couldn't be happier with how she is doing.  She is amazing.  She is strong.  She is resilient!

Monday, August 10, 2015

B is for Brave

Bravery (noun)
Bravery is being the only one who knows you're afraid.
~Franklin P. Jones~ 
"I learned that courage
was not the absence of fear,
but the triumph
over it.
The brave man
is not he
who does not
 feel afraid,
but he
who conquers
that fear."

~Nelson Mandela~ 

This girl....she is and always will be, braver than I.

Wednesday, August 5, 2015

Hitting the Sweet Spot {Six Months Home}

Six months.  Hannah has been home, forever home, for the past six months.  I wish I could somehow adequately verbalize the transformation she has undergone.  Had you met the child we met in January 2015, you would not believe her to be the same child we present to you now.  From blank stares, stoic faces, fighting with all her might, and the inability to laugh to bright smiles, deep belly laughs, and free, unprompted hugs and kisses.  From fighting to hold onto strict routine with all her might, to slowly learning to accept the free flowing way of life with a little give and take (as long as we don't mess too much with planned snacks and meals!).  From refusing to go near Baba to begging him to hold her up high on his shoulders and flip her around like a gymnast.  From despising her siblings and the work and challenge they presented her with to intentionally seeking them out and preferring to be with them than alone.  From screaming outside the bathroom door when I had to use the potty to happily asking if she might shut the door for me and patiently waiting outside.  From sleeping in our bed to sleeping in a pack 'n play in our room (yeah, we still have a long way to go in the sleep department, but we're heading in the right direction).  From eating all that was on her plate for fear the food might run out, to trusting there is enough food to express her likes and dislikes and not eating all that is there.  From not knowing who we were and feeling fear each time she laid eyes on us to losing sight of us at the playground and intentionally shouting for Mama until she can be found with an urgent and extra tight hug once she sees that she is not alone.  From truly believing we were kidnapping her to desiring to be held near and a part of it all.  From tantrums and biting and hitting and cussing to finding new ways to regain self control in record breaking time and expressing herself with true words rather than the ugliness of cussing.  Really.  I wish you could be here.  To see what God has accomplished in her--what your prayers have helped us accomplish--in just six months time.  We loved her then because we made the commitment to do so and our hearts broke at all the trauma she was experiencing.  We love her now because God has planted seeds of true, deep, passionate parental love in our hearts and allowed it to take root into a firm attachment and begin to blossom into the love that only a mother and child can experience.  She may not be of my flesh, but she is still very much one of my babies--and no longer out of duty or commitment, but only what can be born from time, effort, and much focus.

Only God's love and His love poured out through a loving (yet totally imperfect and blemished) family can accomplish this.  She is a different child.  And she brings so much to us.  We simply couldn't imagine our lives without her in it.
It has been six months since Hannah joined our family.  So much has happened in the months since she came home.  So many things have changed--many of them in barely perceptible ways.  Hannah's trust and confidence in us has grown dramatically.  She looks to us for comfort easily, with no hesitation.  She calls us by name, "Mama" and "Daddy."  She voices her likes and dislikes and pleasure or displeasure with complete freedom and comfort now.  She has no fear of telling us she "no like it" at meal time because she now sees that food will be provided and she trusts us to do so.  She's discovered what it means to have something, for your very own.  Just this past week she figured out the use of the words "me, my, mine, and Hannah's."  She now needs to state ownership of all things.  "That Gracie's!"  "My dee-dee!"  "Hannah lovie!"  She sees that these things are hers, for her to keep and take care of.  No one will take them from her.  She loves to proudly declare they are hers.  She has no fear in asking for what she wants and needs.  My current favorite is her daily request for "Mama rock you" at nap or bedtime (rocking has kind of drifted off and I had accepted that independence from her, but I am also very happy to oblige these recent unprompted requests).  She laughs...freely now.  When we first got home she held back any hint of giggle.  No belly laughs or shrieks of delight.  Now?  She has this deep alto chortle that comes from way down in her throat and I know when she lets that one fly she is really having fun. She has come so far.  So, so far.

She is a Burris!  She acts just like the big kids.  She laughs at their silly jokes and asks for them to clown with her again and again.  She needs a book with her everywhere we go (to nap, in the car, to the bathroom, to a diaper change).  She loves to look and read and tell you about the pictures.  If you know our family "in real life" then you know that this by far is one of the greatest indicators that she is indeed God designed to fit into our family.  Love of books is mandatory.  She loves to help.  Each day I get out the sweeper to work at cleaning the kitchen floor and she rushes to get her own toy sweeper to help me.  When I fold laundry, I will never fold for long without quickly hearing, "Hannah help you!"  She is comfortable and at peace.  She sees where she is fitting into this picture of family.

She still has moments of doubt and insecurity that creep in.  Often her only way to communicate her frustration and dissatisfaction with things is through tantrums and screaming, but oh, how I have to tell you how much this has improved!  She is learning how to cope, how to take two deep breaths to regain self control, and how to ask for what she needs rather than shouting about it.  She still feels unsettled when the environment changes abruptly or if I do a poor job of preparing her for what is going to happen.  She still thrives on the routine and safe and familiar.  We eat at regular intervals.  We sleep at the same time.  The routine is always the same and there is so much security for her in that.  She still almost daily asks me to carry her in the Ergo and I do enjoy giving her this closeness she desires.

When we first got home, those early days were hard....for all of us.  The adjustment was difficult, overcoming the trauma seemed impossible, and we were sleep deprived and jet lagged.  It was hard.  We sought out counsel from adoptive families that had walked the road before us and asked them for their insight and encouragement.  We contacted our post adoption department at our agency and worked through strategies to help things improve.  We prayed.  A lot.  The common thing we heard?  Just wait until you are 3 months home.  Things will be better then.  Just hang on until you get there and realize that you can make it.  Three months and things will improve, but then....then comes six months home.  At six months you will look back and not recognize the child in your home because she is nothing like the child you brought home.  Six months and she will begin to emerge from the darkness and you will see that life without her would be impossible.  At six months you'll have a new groove to your routine and you'll really begin to start finding the sweet spot.  You know what?  They were right.  Six months home and yes, we still have our struggles.  I still lament over things we have yet to overcome or get frustrated at issues I thought we had conquered, but overall, they were all right.  We are finding our stride.  Our sense of "normal" is returning.  We're beginning to hit the sweet spot.

Hannah, we couldn't imagine this life without you here.  We are so thankful you are part of our family.  You blow us away each day with how you change, grow, learn, and explode with new knowledge.  You are one of the greatest blessings in our family.  We simply cannot wait to see what lies beyond this so called sweet spot and see you grow for another six months to come.

Monday, August 3, 2015

Getting Real {Pre-Op Palate Repair}

I've tried to remain as much in denial as I possibly could, for as long as I possibly could, about the rapid rate at which we are arriving to the date set for Hannah's palate repair.  I hate this for her.  The pain, the drugs, the night terrors, the recovery, the trauma, the fear....all of it.  I hate that she is facing this.  But, I am also so glad.  I am eager to put it behind us, get on with recovery, and have surgery in our rear view mirror for some time (until the next one in a few years....).  This is likely going to be by far the worst of all the surgeries she will face in her lifetime related to her cleft.  We want to protect her from it, but we know the benefit far outweighs the period of misery we will all face.  We cannot wait to get rolling with speech therapy and hear all her current language start to burst forth with more clarity and less frustration from being misunderstood.

Today things got real.  My denial ended.  I got my first of two pre-op telephone calls from the hospital.  It is really happening.  We are really moving forward.  Today's call was the pre-operative anesthesia telephone call and review of her previous surgical experience and planning ahead for this one.  We feel confident we have advocated for her needs and made every effort possible to reduce the chances for new trauma to emerge.

I've had a lot of people recently ask me for details about this particular surgery and what it will accomplish.  This surgery, like her previous one in April, is going to work at closing her cleft.  Last time we addressed the cleft in her lip.  This time we will address the cleft in her palate (both hard and soft palate).  We are hopeful there will be no complications and the cleft will be successfully closed.  This will not close the opening in her gum line.  This opening will be closed at a later date with an additional surgery and will involve bone grafting.
As you can see inside her mouth, her cleft is wide and there is very little palate.  At the end of the procedure on Friday, this should be closed completely.

We are told to prepare for this to be a challenging recovery.  She will be on a restricted diet for several weeks until the palate has time to heal and the risk of fistula (a hole that can form in the newly repaired palate) has diminished.  Most families who have walked this road before us have told us to be prepared for about 3 weeks before she really begins to come around to acting and feeling more like herself.

Some things for you to pray about for us in the coming days:
  • Pray for Dr. L to be well rested, full of energy and focus, and for his skilled hands to be able to have a fistula free complete closure.
  • Pray for the anesthesia team to be understanding of Hannah's needs and allow us back to see her prior to her waking.  We have requested the same team from her lip repair, but we won't know for certain if that is going to happen until we get there Friday morning.
  • Pray for Hannah to be calm, feel peaceful, and rest easily as she recovers.  Pray she experiences little trauma and few setbacks in her attachment to us.  Pray she is ready (and eager) to eat or drink when the time comes.
  • Pray for Chris and I to understand all that the doctors and nurses tell us, that we are able to be strong advocates for her, and that we will have the stamina we need to get through this with Hannah.
  • Pray for all the nurses we will interact with--we are again asking to be able to boldly share the gospel with them through Hannah's adoption story.  Pray that they are attentive, helpful, loving, and kind with our baby girl.
  • Pray for our big kids, as they will be away from us during this time--for a safe visit at Grandmama's house and for the grandparents to have the energy they need to keep up with all three of them.
  • Pray for a smooth and hopefully short hospital stay.  We know we will stay at least one night, but a large part of our release will depend on Hannah's ability (and willingness) to eat and take fluids with her brand new mouth.  We know she will recover better at home.
  • Pray that pain management is successful and that we are perhaps able to locate a drug that will minimize the night terrors she experienced earlier this spring.
How is Hannah handling all this?  She's a brave girl.  She mentions it almost daily now and tells us the story of how it will all go.  She says we will go to the hospital and she will bring her lovie with her.  She'll take a big, wonderful sleep at the hospital and when she wakes up, she is able to point and tell us what will be different in her mouth.  She tells us that Mama and Daddy will be there with her the whole time.  She is a smart girl and braver than anyone I've ever met.  I'm so glad I get to be her Mama.

We thank you for praying us through on Friday.  Chris and I will be celebrating our 11th wedding anniversary that day.  I am certain that when we said "I do" eleven years ago, we never could have imagined we'd be spending our anniversary in the hospital with our fourth child undergoing a rather significant surgery.  God has been so gracious to us these past 11 years and we are so thankful we are honored to be there by her side that day.  We hope to update as we are able once we are post-op!