family picture

family picture
We "want our very serve as HIS signature to all mankind so that all may know His work," Job 37:7

Sunday, October 27, 2013

Scoliosis Repair day 3 and 4

Uuggghhhh! In case you every wonder a hospital is busier at night. I decided at 10 that I really needed to give "rest " a good college try.  I would start drifting off only to be aroused by someone coming in, Korinna uncomfortable, or by someone coming in, and someone coming in. 
Rin's pain manage plan was a lot better generally speaking but we were having trouble with her not wanting to take deep breaths and holding her breath. That in turn would send her oxamerter into a frenzy with her O2 saturation diving and her hear rate rising. With the help of a wonderful nursing staff we finally deduced that she has a soar side. Most kids who have this spinal fusion do. Usually the side they had to manipulate the most. Guess what side that is, Rin's right side. Guess what side she was crying in the PICU, the right side. Guess what side she was panting on? The right side! These little things that could have been so easily fixed if she could have just had the ability to say, "Mom, that side hurts more." makes me loco. Such a simple fix and yet for her she has to wait out the dodo bird parents until they can figure it out. 
We finally got a couple of hours of rest in somewhere between 3-5. Ethan came in to relieve me and I headed back to the hotel room. I really thought I would get a shower and take a nap but that didn't happen. I did get shower but then I ended upon the phone for a while. I cleaned up the room and got my things together and headed back over. 
I was mad when I got to the room and realized I had missed her doctor coming in and changing her dressing. The doctor had also given us some goals to reach. He wanted Korinna to sit in a chair, he wanted her to show us that her GI tract was moving. (Read betweens the line)  and then if she gets a fever we have to do chest therapy. 
She tolarAted the moving and sat in a chair for a long time. When I left to go home we were in high hopes that everyone would get some rest. I was wrong.
When I called back up to the hospital Sunday morning Ethan sounded exhausted. They had both had zero sleep. Korinna had cried all night long and was not resting. By the time I got to the room at 10:30 it was obvious Ethan was barely keeping his faculties due to the exhaustion and Korinna looked weepy and sad. I relieved Ethan and then settled in for a hard day. Lots of tears, lots of just being unhappy. At 5ish we saw the doctor again who reminded me that there is a phase of just extreme exhaustion and crankiness. Well, we are there! He was happy with all the progress especially from her GI "movement" and we started her back on foods. Yes, yes you are correct she hasn't eaten for real since midnight Thursday. 
She handled the feeding well and has rested soundly since then. I think we might have just turned a corner. I hope we have. I am ready to see her happy eyes and mischievous grin.

My set up. You can't see but there is a chocolate bar and sweet tea beside the chair.

Our view. This picture does not do it justice. We have a gorgeous view of Vulcan and the sun rises right over him. Spectacular though this morning it was lack luster due to the clouds.

My sweet patient. Her thoughts are, "just leave me alone and don't touch me. "

Friday, October 25, 2013

Scoliosis Repair Day 2

Waking up this morning I could barely move. I was still in the same position had fallen asleep in. So stiff but so rested. We had made the decision to have a room at the hotel next to the hospital. E had checked us in after we got to the PICU, gotten us dinner and returned to the PICU. I left him and headed to the hotel at 7 something and made a few phone calls took a bath and collapsed In the bed. It was still dark when I woke up the at 5:45. Even after over 8 hours of sleep I contemplated going back to sleep. I was all to aware though that E had not had the rest I had so I started getting dressed to head back to my baby girl.
When I walked out the door I grabbed my Starbuck's gift card. Last night when returning to the room E had left me a Starbucks gift card and note. 
-Back off ladies, I'm keeping him. - 
The cool air that greets me this morning seems more refreshing than yesterday. The walk was nice and the pumpkin spice latte was perfect for this mornings chill in the air. I walk into Rin's room with a very bleary eyed 11 year old and a sprawled out hubby who definitely didn't sleep well. The nurse brings me up to speed with the evenings activities. Rin had a low grade fever. Not uncommon but the sent off cultures to make sure. She has also started waking up more around 2. Those meds from the OR had if finally left her sweet body. This is good but that also means she is more aware of her pain and discomfort. I can tell just from her eyes and the way she glares at me she is already over this place. I relieve Ethan and give him his coffee. That room a short crosswalk away will welcome him soon and the he can rest (and do a little work )
I settle down to watch the sun rise over the Vulcan and wake up the city of Birmingham. 
The events from today were pretty low key. Rin was struggling with getting comfortable and as the morning melted away to the afternoon it was obvious we needed to up her pain management. She has started crying a little and when our nurse warned her they were going to roll her over to her other side she immediately started crying. We started her back on the Valium at that point and she seemed to settle down.
We wait again. I color and I am finally able to break Ethan down and get him to play Uno. We have orders for a room on a regular floor but a bed has not opened up for us yet. So we wait again.
I decided to return my pager from the OR just to have something to do. As I drop it on the counter I hear my name and see a familiar face. A  mom and friend from my daughters preschool class is here and waiting in her son who is in the OR.  We were so glad to see one another and we shared a sweet moment. We are both going to be on the same floor for recovery except they get to leave tomorrow and we won't. 
After returning to the room we were ready to transport to a regular room. Rin slept through the whole transport. After settling we were able to see her Dr. 
Everything is going as planned and then he reveals tomorrow's goals for her. He also gives us the consequences of any small complications. Tomorrow is going to be rough. It is time to start making her move a.k.a. Walk and sit up. It should be very hard for Rin tomorrow and I don't think any of us are looking forward to it. 
We have one last visitor from Ethan's cousin who works in the hospital. It was fun to see him. Dinner for us and then E heads to the hotel and I assume my shift on a functional but not comfortable couch in a room were disturbances are at least every hour. Less beeping, less emergency but that doesn't = more rest.

Thursday, October 24, 2013

Scoliosis Repair Surgery day

I was so confused when the alarmed sounded. Once regaining my wits I knew the count down was on. Korinna could not eat past midnight so we set our alarms to go off so that we could turn the pump for her overnight feed off. I head to her room where she is sleeping so peacefully and power down the pump, clamp, flush and remove the extension tube. I'll finish cleaning up when I wake up to get ready.
The second alarm doesn't bring confusion but immediately brings knots to my stomach. It is time and I don't want to do this. Getting dressed, last minute packing, getting Rin ready are all emotional for me. I don't want to do this. We head out the door into a very cool morning. We ride in silence most of trip. Rin sleeps peacefully. I don't know why but the darkness, cold and fog seem so appropriate this morning. There is a battle raging in my mind and constant rambling.
I don't want to leave her. Yet, it will be nice to see her sit up straight. I can't believe she will bare another scar all because of the fight with Rett Syndrome. I used to think scars on guys were cool and mysterious and macho. Now I am sad that the sweet skin that I have watched grow will now be marred again. Stupid Rett Syndrome. She has the best surgeon. He is known for his ability in the OR. They better take care of her. I wish I could be with her. I wish could do this for her. I'm glad I brought extra socks. I think that these shoes might get old after 12 hours. 
We pull into the parking deck and my stomach is crazy. I'm disgusted at myself when I go to put on lipstick. I'm about to send part of my heart into surgery and I stop for lipstick. E already has her in her chair strapped in and walking off. He is moving faster than me. That is unusual he is a slow and steady wins the race kinda guy. I have got to pull it together. Entering the hospital creates in me a huge sigh. Melancholy. 
For 5:30 am the waiting room is packed with families and their little ones. Registration is quick and they warned me that it would be. We were told Spinal surgeries are first.  Rin sleeps peacefully. 
Back in triage we do vitals, answer a ton of questions, ask a ton of questions and meet with all of the people that will be her team in the OR. It starts, my eyes keep leaking. Hearing my husband pray over her brings peace. My partner, my friend speaks words of truth as he lifts up our sweet daughter to the great Physician. I can do this. I will live in His strength not my own. 
I  am thankful she wakes up enough to smile for us and reassure us that she is ok. She was scared last night when I prayed with her. 
As we walk her down the the hallway to the OR I am scrambling to control something, anything. I become obsessed with the blanket we brought with us. "Should I take the blanket we brought? Can it go back with her? I'm just worried about her being cold." I know that the lady thought I was crazy. She comforts me by offering to bring it out to me. Then it was time to say our goodbye's. I didn't even know if I could make an audible sound. With all the strength I could muster and with a shaky voice I squeek out "I love you" and kiss her on the cheek. E's voice never waivers " I love you princess". 
Now we wait.
1 hour later we receive our first update. She has been put to sleep, central line placed, intubated and positioned properly for the surgery. The nurse says it is all like the doctor wants it. She will call back in an hour.
2hours in and we get another
 update. All is well. And now we wait again.
I paint my nails. I color in my coloring book (don't judge me) and I beg E, to no avail, to play Uno. More waiting.
3 hours: we receive another update.  All instruments are in place. (A.k.a. Metal roads and screws) they will be another hour or hour and a half. Now we have E's parents here and Colby and Kathryn. We talk and I enlighten the Colby and Kathryn on old circa 1970 Saturday Night Live episodes. We have checked on the kids and they are all surviving. We wait.
By this point we are the only family still here from this morning. I have seen four different waves of patients coming in for surgery. We are all the same. They call out your last name from a door. And the parents are pointed to a phone on the wall to receive your update. Your lifeline to your child. 
 I get up and instead of pointing to a ringing phone we are told to go the conference room and the doctor will come see there. 
It is over! Yahoo! After seeing the surgeon we are confirmed that this was the right decision for us. Waiting would have been very bad and a lot more complicating. We can see her in 3 hours.
For the first time all day I can finally take a deep breath. So thankful and ready to move to the next step. E's parents leave and we eventually go grab something to eat. 
I can't tell you how beautiful that sounds. The lady behind the desk has a big booming voice that reminds me of my highschool cheerleading coach whose voice projecting was so loud and so strong it could penetrated concrete blocks and the lengths of basketball courts. No one could every say they didn't hear her and this lady is no different. 
I grab my bag and then yell behind me to grab the other stuff but then I get so excited knowing that I am seconds away from seeing her. I drop my purse in the floor and blurting out that Colby will have to get it. E never rushes. I see through the door is her bed and she is there peeking out from underneath a blanket. Her eyes are swollen her lips are so full from being intubated. Again the tears start streaming down my cheeks. E finally appears and we start the transport to the PICU. I am asked to leave her but this is so temporary. Only minutes till we can be reunited. 
Doctors, nurses, scrubs, monitors beeping, Rin sleeping, long coats, short coats, paperwork, orders, talking, mommy relaxing just a tad, tons of wires, IV lines, dried blood, trying to make her move, fielding developmental questions, alarms, draining tubes, trying to get her to wake up for just a seconds, stitches, rolling over on a schedule and general sensory overload. This is our home for the next 24 hours. 
 Thank you for all of the text and messages. We haven't been able to answer them all but we have read them. 
I am blogging on my phone so I have no idea how this will look when posted or how many typos, punctuation issues are here. Plus I have been up since 3 so grace and mercy would be appreciated.

Sunday, September 15, 2013

Rett Syndrome

I sit here this morning with Pandora blasting some of my most favorite songs. Ones that bring me to the feet of Jesus. They help prepare my heart and put me in a place in which I can worship and converse with God. I don't get to go to church this morning.  I don't get to worship with my fellow believers because of Rett Syndrome. This is the disorder that brings havoc on my oldest daughter. She fights with dignity, perserverance, grace and an amazing amount of will power. She inspires me, her ability to smile in the dark parts of the journey, light fires in my soul. She is a child created for great things. I want to help her do them and I want to give her an environment to succeed.
I also want to kick Rett Syndrome's BUTT. Actually that is a lie. I want to eradicate it, I want to be part of it's demise. So I am calling Rett Syndrome into battle. On February 23 I will run the Disney Princess 1/2 Marathon in honor of my daughter. I will run with Girl Power 2 Cure. I am not a runner but I have to do something that will serve a right punch to this horrible disease.  If you are asking how can running do that well here is how.  First, I needed to do something physical, something that made me feel like I was in physical combate with this disease.  Second, I will be raising funds during this training period.  All of the funds will go to Research for treatments/cure for Rett Syndrome.

This is Rett Syndrome
Beautifully and wonderfully made.

With eyes that peirce your soul

Living in a world that doesn't fit her

Trapped inside her body.

And some how she finds a reason to smile.

Even when she is forced to sleep off a "bad" day.

So I spend the morning here at home watching her sleep and thinking about all the things she is missing.  I will pray over her and pray for a day when here on this earth we get to hear her tell us the things she thinks about.  When I get to hear her say my name or hear her say "I Love You!"  Oh, to see her get to interact with friends the way she really wants to and not confined by the limitations of Rett Syndrome.  She is amazing now but I do want more for her.  I want more of her and less of Rett Syndrome. 

You will find an a link to a jewelry party I am having where some of the proceeds will go to Rett Syndrome.  You will need to put Kara as the party.  Noonday
For the next several months I will be posting on ways that you can help kick Rett Syndromes Butt.  October is Rett Syndrome Month so find some purple and get ready to be bombarded with ways to help, ways to make Rett Syndrome less and Rin more!

While I finish this post this is the song that is playing and I weep.      

Tuesday, August 20, 2013

My sweet

Tonight as I watched you sleep I couldn't believe how big you were. Where did it all go. Tonight you didn't look like a baby anymore.
But it got me thinking about God's timing. The birth of you in this family was no different. I couldn't imagine my life without you. He placed you in our lives when we were struggling with Korinna's development and you blew through your developmental milestones. If you only knew the peace of mind this gave us and such joy to watch you.
Today you are 9! Wow. What happened? 
 Now I have this little girl who will
always help out. In fact, we have to remind you, a lot, pthat you do not need to bare such a heavy load. 
You are such an avid reader. You love your violin. You also love to put on shows for your family. 
You are my heart Elaina and I am so thankful I get to spend this day with you. Happy Birthday, I Love You and Thank You for being Mine! (And your Daddy's)

Saturday, June 1, 2013

The Little Things

"Enjoy the little things in life, for someday you realize they were the big things"

I saw that quote on a pillow on pinterest.  I don't know who it is from but it got me thinking how true that is when it comes to being a parent.  So that is what I thought I would post today, pictures of enjoying the little things. 

Like the smile on Korinna's face when she is riding.

Or that this little guy always asks me to make him a Chocolate Chip Pound Cake for his birthday cake.

That when Joel's sweet hands touch me I get all butterflies and still can't believe he is mine and he is here.  I remember how I ached to feel his touch while we waited on him to come home.

Watching the University of Alabama gymnist practice.
 How difficult it is to get a family picture for a holiday.  This was Easter and the closest we got to a family picture.  I think this is one of about 20 attempts.

I have a feeling these birds will be a story when the kids are older.  I can hear it now as we all sit around the table after sharing our Thanksgiving meal, " You remember that time we got chickens"
 and Josiah was obsessed with them." 
Or I will remember that after I spent all day planting ALL of my planters I found Leila "planting" by picking the flowers our of the yard and putting them in the planters.

 Trains, Trains and more Trains.
 Elaina learning how to do a cartwheel.  She does them everywhere and honestly it reminds me of me.  Ask a brother or one of my parents. 

 Splurging on trendy, cool, totally awesome perscription sunglasses for Rin. By the way totally worth it.

  I have to say that I have discovered that instagram lets me capture so much of our everyday life.  I enjoy being able to snap moments that happen sometimes only so I can remember them later.  I probably overgram but I have plans for those snap shots.  I have found several companies that will let you turn your Instragram photos into everything from pictures, postcards, books and magnets.  I plan on doing some of this for Christmas presents.  So if you follow me on Instagram and you think I post to much now you know why.

Tuesday, April 2, 2013

To the two I have never met.

I have never met the two of you but I love you and I grieve for you daily.  Especially today. 
 I try to imagine what must have gone through your minds and hearts this day and the days leading up to this desperate event. 

 I also can't imagine the heart ache you felt.  I weep just thinking about the sacrifice you made. He was so very sick with his heart taking up almost his entire chest cavity working so hard.  FIGHTING! And to think that was your only choice in giving him just a chance at hope. 

 I wish I could tell you that God was with him and protected him and provided for him in ways in which only a loving Heavenly Father can.  I wish I could tell you how your son's story crossed more than one country's borders trying to get him well and give him that chance.  I wish I could show you  two how he has blossomed, and grown.

  He is SO loved and we are so honored that God picked us to be his parents.  This God I mention, I pray that if you don't know him that you will learn about him, that someone will share His story with you and that your eyes will be opened to His redemption.  You are not forgotten,  your part in Joel's story has not been forgotten, and I pray that one day we will meet inside the gates of Heaven and I will finally get to embrace you two and tell you how much I love you and thank you for your sacrifice. Even though I have never met you.



Tuesday, January 15, 2013

I wanted to be a Nurse.

Did you know that, I wanted to be a nurse.  It is true.  If you would have asked me what I wanted to be when I grew up in Junior High, High School or even 3 years of college I would have answered with, "A Nurse".  But of course that didn't happen.  Ethan and I felt that something else was in store for us so I changed my major and graduated from the Business School. 
But as I sit here tonight I wonder if that urge and craving of a life as a nurse wasn't really true.  Don't I have many of the same responsibilities of a nurse?  Don't I nurture my children?  I take care of boo boo's, and care for them when they are sick.  Now that God has charged me with the care of Rin, I know a lot about how the brain functions and the specifics that Rett Syndrome plays in the brain.  I educate myself on them as often as I can.  I advocate for my patients  kiddos.  I make sure they are taking their meds and follow all of the doctors orders as well as help bring to their attention things that I think they have not noticed.  I watch and sometimes have to chart their bowel movements and have even had to take many poop samples (yay adoption).  I worry about bone density, and muscle problems (are they to tight or to lose).  Because of the addition of Joel I am learning about the cardiovascular system and congenital heart conditions.  Which means I am learning about how they affect the lungs. 
And tomorrow I will wake up and start another educational journey, Gastroenterology.  It is a topic I have been working on for many years.  But tomorrow is the culmination of, well frankly, something that I have been fighting for a long time.  Rin has been battling reflux for years and starting this summer she started to lose weight due to the intensity of the reflux.  We have medicated her reflux, and shoved every protein shake, morsel of food and anything else we thought would put weight on her.  This was vain attempt.  I have watched the sparkle leave her eye as she lives in pain most of her days.  In my selfish nature I talked to Rin about having a fundoplication and a G-tube.  When I asked her in great disdain and sarcasm if she would even want something like this she immediately chose yes.  I stopped in my tracks and my mommy heart started breaking into pieces.  I held back my tears and got my nurse hat.  I explain what this meant and made sure she understood what she was saying.  When I asked her again if this is something she would like to do she again chose, "Yes".  Now we are in a different ball park.  I sat my feelings to the side and began advocating for the thing I had been fighting against. 
So tomorrow my patient, my heart, my love, my first born, the child who daily teaches me grace, dignity, love, perseverance, and what it means to love like Jesus will have a procedure on her perfectly unmarked belly.  This is for her health and I know that.  This is so that the twinkle will come back to her eyes and the pain will go away.  And while I know this isn't in the grand scheme of things this is not the worst thing that could happen it has been something that has been very hard for me.  This is one more time when Rett Syndrome has won and Rin has lost.
Of course I always wanted to be a nurse.  This is just not they way I thought is was going to be.   

Wednesday, January 2, 2013

Happy Birthday

Dear Joel,
On this day 2 years ago you started your journey on this earth.  A journey that was planned by God.   I pray you always know the great lengths that The Heavenly Father went to protect you, love you and move in the hearts of many to make sure you were loved and cared for. Oh my sweet boy He loves you, He has a purpose for your life and I look forward to being a part of it.  
Last year I celebrated your birthday, I was so full of emotions, I was excited at the promise of a child, I was anxious that it was not me with you, I was sad that I could not bake you your favorite sweet and lavish you with kisses on this very special day. 
Ahhh, but this year I did.  How I loved on you these past few days.  To see you trying to make the number 2 with your fingers and say, "five" and follow it with a giggle.  The happiness your smile brings me. To bake you your favorite goodie.  Which, by the way is, cookies.  You don't know what to do with cake and so cookies and milk was the way to go. 

We had family surrounding you on the first and celebrated you.  You on the other hand, did not know what to do with all of the attention.  You didn't cry but you weren't comfrotable.  Oh, how adorable you looked in your smocked John John.  I. COULD. GOBBLE. YOU. UP. 

As soon as you saw your present from me and Dad you ran across the room and sat in it while Daddy put it together.  You spent most of the night playing in it. 

Today was filled with playing, and singing the "Happy Birthday" song.  When I put you down for your nap I was a little overwhelmed with emotions.  How amazing that I love you so much.  I melted when you looked up and giggled at me.  You are talking up a storm and I love watching you jabber with hand movements and all.  A mere six months ago you didn't even know who I was and what a family was and today you call me "Momma" and come to find me to kiss your booboo's, you find safety in my arms. and know that I will provide all of your needs.  You love your Daddy, LahLah (Elaina) and Yigh Yah (Josiah) they are always great to play with or hold you and Min Min (Korinna) will always let you sit in her lap or hold her hand.  You and Leila are playing more than fighting and that is one of my most precious moments that I get to see. Joel you are loved. You have blossomed and I am speechless at how you grafted into our family.  
We always take the birthday child out to eat for their birthday and today we had take out from Mr. Chen's.  It is hasn't been opened very long in fact it opened while we were in China picking you up.  When we returned home we dined here several times giving you an oppurtunity to have something that you were used to.  It has a special place in our hearts and so to here we went.  I'm sure next year you will have a your own opinion of where you want to go.  That's fine because you are home, in my arms and are mine.

"Beat your plowshares into swords, and your pruning hooks into spears; let the weak say, “I am a warrior.”
Joel 3:10