Wednesday, March 30, 2011

Two mended hearts...

On February 28th I had to put my trust in a man I had only met once the day before. I had to trust him with the life of my daughter. He would be stopping her heart and I had to trust him to get it to beat again.

I held on to my daughter and tried to memorize every curve of her face, her smell, the way her skin felt under my hands...every single detail of my little angel. Because even though I should have been thinking positive thoughts, I was in a very dark place. A place no mother should ever have to be. A place of despair and broken hearts. Every outcome I thought of all ended with God taking my baby girl away from me. I was petrified. People were in and out of the room speaking to me but I had no clue who they were or what they were saying. I was busy praying like I have never prayed before. Praying with the desperation that only another mother in this situation can even begin to understand. They put Violet in an isolette and we made the long walk over to the surgery area.

 Before I really understood what was going on they were wheeling her through the double doors. Tears streamed down my face. I was numb. It was a silent cry because I just didn't have the energy to do anything more. After the double doors shut I glanced in the other direction. My dad had walked away and now I saw why...he was crying. My dad who NEVER cries was in tears watching his daughter have to say goodbye to her daughter. This was now the second time I had to say goodbye to her not knowing if I would get her back.

We waited, waited...and waited some more. We were updated when they started surgery and the blood transfusion. The next update was the hardest one, she was on bypass, they had stopped her heart. Now I prayed that they would be able to start it back with no problems and bring my baby back to me. She was so young, only 5 weeks old and not the weight they wanted her to be for the surgery. The waiting was agony.

We heard our names announced over the intercom letting us know we had a message at the desk. I jumped up from my chair and took off. They told us she was off of bypass! Oh thank you God! We would be able to talk to the surgeon in around an hour.

After a while they led us in to a room and the surgeon came in. He explained the entire procedure and all of the holes he fixed and said her VSD was the largest he had ever worked on. Scott and I went in first to see Violet. I knew what to expect because my friends had sent me pictures and videos of their children after open heart surgery. I was glad I prepared myself in advance. She was swollen, tubes and wires were everywhere. A wall of beeping machines surrounded her. It was so intimidating.

The worst part was now over. The surgery was complete and she had been brought back to us. We knew we had a long journey ahead of us but at least one of the scariest parts of the journey was over.

Two days later she had to have emergency surgery to insert a tube in to the area around her right lung because of severe fluid build up. Her lung was in a collapsed state and could not expand so she wasn't able to breathe properly.
Wow, two surgeries in less than a week. She was transferred back to the RNICU at UAB for the rest of her recovery. Each day there was a huge difference. She was so much more alert, her breathing was in a normal range, her heart rate was better and there wasn't anymore heart rate drops. She was going to make it.
Here are a few pictures from her birth, before surgery and now after surgery. She's come a long way!

(2 pictures above) were take right after birth.

 (above)  around 2 weeks before surgery.

(above two pictures) taken in the days following open heart surgery)

(above) these are all pictures of her now. She's alert and just a bundle of joy. She's my little heart warrior :D

Friday, March 25, 2011

In the Beginning

There are certain things that I have not shared through my journey. I did not share the story of the day Violet was born. I did not share the emotions nor some of the pictures from one of the scariest times in my life. Why? I really didn't know how to put it in to words at the time. I didn't want to say my fears out loud for fear they may come true.  I didn't want to put my full emotions out for the world to see because instead of staying positive and keeping my faith...I questioned God. My faith was rocked to the very core of me.

Hello World 1-21-11
We got to the hospital early that morning. I remember telling my husband I was going to drive because I had to keep my mind busy. My stomach was in knots. I was hungry and thirsty because I hadn't been able to have anything after midnight since I was having a c section.

They checked me in to my room and we waited the 2 or 3 hours until it was time for my c section. They wheeled me in to the operating room while my mother and husband scrubbed up. I remember the table was hard and it was freezing. They had me lean over while they did the spinal to numb my lower body. I was so afraid that since I could feel a tingle in my feet that I would feel the surgery. I was scared to death. I've had many many surgeries but I've never been awake for them. I didn't have any medicine in me to calm me (wish I did though!).

 I remember my mom and my husband walking in to the room and one of them saying "oh my God" (I guess they saw that the surgery had already began lol). They sat in a seat behind me and Scott held my hand. I kept seeing him glance over the curtain that blocked my view and I was hoping and praying he wouldn't pass out like everyone does on TV.

I was of course on oxygen and felt like I was going to pass out. The smell of cauterizing turned my stomach in ways I had never imagined. The nurse then told me that I was going to feel a lot of pressure and tugging. Fear set in! Yet there was no pain, I was floating. I heard the faintest gurgle of a cry and I came back to reality...that was MY daughter! My daughter was crying! They lifted her above the curtain for me to see and I did not look at her face. I did not look at her hands...I looked straight at her feet. The Dr's had told me she would have pretty bad clubbed feet and I was left confused and dazed....Her feet looked perfectly normal to me. She was a big healthy beautiful little girl with or without clubbed feet. A big 8lb 3 ounce baby girl with a set of lungs that would make an opera singer proud!

They took her away to clean her up while the Dr finished the surgery. I was wheeled back in to my room and they brought her in to me.  I was smitten!  I held her, kissed her forehead and thanked God for giving me such a blessing.

The lactation consultant came in and we worked on breast feeding. Violet latched on but fell asleep after a few sucks. She was so tired. So I let her sleep and just stared at her. They came to take her for a bath but decided to do an echo cardiogram first. Time went by so slowly and the nurse kept coming back to my room to see if my family had returned yet. I knew something was up. After this point everything gets very blurry because of emotions and a constant drip of pain medicine.

The Neonatologist showed up in my room once my family had returned. Violet still wasn't back yet and I wanted my daughter in my arms. Something wasn't right...  As Dr.B. began to speak my heart sank in to my stomach. He was saying that Violet wasn't breathing properly and was going to be transported to the NICU at a different hospital. She was on a very high amount of oxygen and not doing so well. All I could think was this can't be right, I just saw her and she looked healthy. But then the vision of her laying in my arms started coming back to me. She was tinted blue around her mouth. How had I missed that before??? I asked them through my broken sobs if they would wheel her in before they transport so I could say goodbye to her and that I love her. Goodbye...would this be the last time I ever saw her? Would I ever get to hold her in my arms again. I couldn't remember what her skin felt like against mine. How she smelled... her face started blurring in my mind but then I realized it was my tears spilling over the rim.

Strangers...more strangers entering my room. I guessed it was the transport team as they wheeled Violet next to my bed in her isolette

They allowed me to open the small round window on her isolette to hold her hand for a  couple of minutes. Scott and I sat there, barely touching her hand and arm because she looked so fragile. But then it was time to go. I had never before felt such anguish and helplessness. I was stuck in a bed hooked to machines instead of going with my daughter. As they wheeled her out the tears took over and I don't remember much after that point.
Swollen and hurting with my world being ripped apart...I questioned God. Why me? Why MY baby? Why bring us through so much to get to this point to now have to go through this. What did I do wrong to be punished like this?

I still don't know the answer to all of my questions...and I may never know. All I do know is that Violet has shown so much strength in her life so far. The prayers we have received from all over the world has been astounding and has helped to get us through some of our darkest days. We still have a long road ahead of us. But hopefully the worst is behind us, I pray the worst is behind us...

Thursday, March 24, 2011

A Heavy Heart

My heart hurts. Not for me or my daughter but another mom that is longing for her son. For a mom that is fighting a battle that could forever change the face of adoption from a country where so many children with Down syndrome are hidden away in orphanages and mental institutions.

When Tesney got to court she was excited and hopeful that on that very day, St Patricks day, the judge would declare her and her husband the official parents of Kirill. Kirill is an adorable little boy, full of love and lots of smiles.

Here is her story...

Two years ago Greg and I began praying for God to do whatever he wanted with our lives. We handed him a “blank check” so to speak, and told him to cash it. He opened our eyes to children with disabilities wasting away across the ocean in Eastern Europe. We joined God and started our adoption journey.

Our family is more than equipped to handle a child with special needs. I have a degree in Early Childhood Education. I am a member of the Board of Directors of Best Buddies of Alabama. I have volunteered for RISE and Eagles’ Wings. All of these organizations serve individuals with special needs. My husband I have close friends and family who have special needs and we are a big part of each others lives. Our wedding party included some of these special people. Our involvement with individuals with special needs led us to adopt a child with special needs; specifically, we chose Down Syndrome.

As we prayed over the faces of thousands of orphaned children with Down Syndrome, we ultimately chose a little boy named Sergey from Russia. Eight months later, as we neared the finish line of our adoption, one of Sergey’s family members in Russia stepped forward to adopt him. We were heartbroken for our loss, but God showed us that we were following him, and his ways are perfect. We knew we still wanted to adopt, so the way we saw it, two children would find homes because of our journey…Sergey went to his family and now we would choose another child to come into our family. We took great comfort in knowing that God could see this when we first committed to Sergey! We were honored to be a part of his plan.

Shortly after losing Sergey, we received a new referral with a grainy photo of a four-year-old blond-haired boy wearing pink glasses named Kirill. We were instantly in love with him. We had to re-file a lot of our paperwork because of the change in referrals and regions of Russia, but we were fast and we thought we were looking at three more months at the most until we would have Kirill home.

That was well over a year ago.

Since then so many things have happened. A tragic story of an adoptive mother sending her child back to his country alone on a plane with a note pinned to his shirt rocked our world…he was from Russia. Adoptions in Russia came to a screeching halt. Kirill’s region stopped processing adoptions for eight long months. The judge refused to accept any American adoption cases until an official treaty was signed between the United States and Russia.

Even though we wouldn’t be able to finalize the adoption in court until the treaty was signed, we were allowed to go visit Kirill and sign our official petition to adopt him in August 2010. We fell more deeply in love with him. This was our son. 

During that time, we found out that Kirill is the first child from his region EVER to be adopted with Down Syndrome. A birth mother keeping her child with Down Syndrome is unheard of in this area of the world. Adoptions of children with Down Syndrome just don’t happen there, these children are literally hidden away from society in orphanages and mental institutions. As our process continued, it became apparent that Kirill would be a pioneer. If our adoption was approved, it would pave the way for other children with special needs to be adopted from this region. 

Then, a miracle happened around Christmas and the judge in this region suddenly changed her mind and began processing American adoptions again. We were elated.  Could this be the light at the end of a very long tunnel? I was somewhat nervous about Kirill being the first child adopted with Down Syndrome from his region, but our agency was very confident that if we got a court date, our adoption would be approved. In seventeen years, they had never had a case rejected IF the family was issued a court date. We were told not to worry, so I didn’t. After meeting the judge’s requests for several supporting court documents, we were finally granted a court date-March 17, 2011. St. Patrick’s Day…I was thrilled. This would be our new favorite holiday! Our son was coming home! 

Our other son, Clayton, who had just turned three when we started this adoption process, has prayed fervently for his brother. He is now almost five. When we told him Kirill was coming home, oh my…we had an excited big brother on our hands! At one point he even went to his room, dumped out his toy cars and divided them into two stacks…one for him and one for Kirill.

Last week, as we sat in the courtroom and suffered through five agonizing hours of difficult questioning, we were not prepared for anything but an approval of our case. Two doctors, two social workers, and the Minister of Children’s Services all made very strong statements on our behalf. They fought for us. Hard.

Kirill was “not socially adaptable” due to his “medical condition” and he was better off in an institution than in a home with a family. As the judge read her ruling, she stated several times that we were a good family, that we met all the criteria to adopt a child, but that she would not approve our adoption because Kirill has Down Syndrome. She told us that we could adopt another child, because legally our application had no problems according to Russian adoption law. She said she would approve our adoption for a “typical” child, but not this child. Why? The only reason? Because he has Down Syndrome. Even though we were approved by our home study and by the USCIS to adopt a child with special needs. It makes no sense whatsoever. Denying a child a family because he has Down Syndrome is a violation of human rights at its most basic level!

It was like a terrible dream. We were so unprepared for this outcome. As we left the courthouse in a mental fog, the doctors and social workers that had testified came to us and said, “If you appeal, we will fight for you. Appeal. Fight this decision.” Of course we were going to appeal…I could no more walk away from our biological son, Clayton, at this point. Kirill is just as much my son.

So here we are, asking God to move the mountain that is standing between Kirill and us as we appeal to the Supreme Court in Moscow. There are also three other families who are in various stages of adopting children with Down Syndrome from Kirill’s region; one of the families has a court hearing set for next week. 


This is a video of Kirill meeting his mommy for the first tell me he is not able to love like any other child!
We ask that all comments stay positive as the family is still trying to fight a long and hard battle and any negativity might be used against them in court. Storm the Heavens with prayers!!!

Wednesday, March 23, 2011

First pictures

I think this is the first time I have done something since Violet was born that actually feels "normal"! I scheduled her to get her Easter pictures made with Four Seasons photography :)

Four Seasons Photography link

For many years I dreamt of having my child's pictures made at Four Seasons. (I'm a picture NUT!) They are a little pricey but the quality is top notch. I knew as soon as I got pregnant that I was finally going to get to have my child's pictures taken there the first chance I got. Can we afford But after coming so close to losing Violet I will not put it off. We will live for the day and baby girl will have the cutest Easter pictures ever...well of course they will be the cutest, how could they not be with her in the picture!

I spoke with one of the ladies at the studio and she scheduled me for the first appointment of the day, the day they do the real bunny pictures. Because Violet's immune system is so low we cannot take the chance of being there in the middle of the day when there are a bunch of kids lined up to take pictures.

The real bunny pictures are a ten minute photo session for $10.00. So people are seriously running all around you and it is chaos. So to be able to get one hour alone without other people in the studio is amazing. I am so very thankful that they took my daughter's health in to consideration and allowed a one hour photo session (which they do NOT normally do). Yes the one hour will cost us more, but we can make sure we get the pictures we want and make sure they capture the true beauty of  "ma petite fleur".

Tuesday, March 22, 2011

Another surgery...another day

Violet is doing very well after her open heart surgery. We are a little over 3 weeks post op and she has more energy than I ever could have imagined. She is now back in the NICU here at USA. I love it here. Her nurses love her, her Dr's love her...I couldn't ask for more...well maybe to not have a shift change during visitation and have to leave but I can deal with that if it's my only complaint lol.

She will be having a PH Probe tomorrow to check the acidity of her reflux and then she will be having a G tube inserted next week along with a Fundoplication. I struggled with the decision on whether to have the Fundoplication or not and have decided to go ahead with it. I fear the damage caused by her NOT having the surgery would be much more severe than if she did have the surgery.

After the surgery, as long as there aren't any other complications, she should be able to finally come home and hopefully this time FOR GOOD!

This has been the longest two months of my life. A constant battle rages inside of me as I have to make decisions that could harm her or help her. I feel like I have had to get a medical degree in only two months and I am tired. I'm tired of medical terminology, tired of having to drive to see my daughter when all I want is her at home in my arms, tired of walking in to a nursery with no baby in it, tired of the nightmares I have each and every night dealing with Violet. I just want a little normalcy and hopefully that will happen soon. Yes, we won't be what society considers normal...but it will be our NEW normal, filled with feeding tubes, pumps, Dr appointments and therapy appointments. It's hard to adjust to the new "normal" but I am getting there...slowly.

Wednesday, March 16, 2011

Starting off...

We found out at 16 weeks gestation that our daughter might have Down syndrome. This is where our story begins...

The Day Our World Stood Still...
August 18, 2010
I  paced the floor all morning waiting on THE phone call. Would the nurse call and say everything was negative or would they say the dreaded words “you need to come in to the office”?  When the phone finally did ring I froze. Was I ready for this? Could I handle the news one way or the other? I answered and it was the nurse, she said, “Amber, we need you to come in to the office.” Tears sprang to my eyes and I told her I was getting in the vehicle as we spoke and would be there in less than an hour. I was in a daze. I remember it was raining terribly and the song “the River” by Garth Brooks came on the radio and then the hysterics hit. I called my mother at work to tell her that the Dr was having me come in to the office so she said for me to pick her up from work on my way there and she would go with me. We knew what the Dr was going to tell us but I was still hoping for a miracle. The entire way to the Dr I kept praying that maybe they found something wrong with me. Maybe I was sick but my baby would be fine. That she would be healthy and happy and I could deal with anything that God made ME go through, as long as my daughter was safe from harm. I knew this was far fetched because that is not what the amnio tested for…
 I got to the Drs office and started crying all over again as I walked in to the waiting room. The nurse brought me in to a room and hugged me as she handed me a piece of paper. I looked down at the paper and it was the web address for the National Down Syndrome Society. I cried as my heart sank in to my stomach and the nurse hugged me more. My life changed with that one little piece of paper.
 She left my mother and I alone and gave me time to grieve for the life I thought I would have had, that I had dreamt of having. Everything I had pictured for my life had been wiped clean. Where would I go from here? Who was I supposed to turn to for help? There were so many questions and for my own self preservation I went in to planning mode. It was the only thing I could do to keep myself from falling apart.
 Soon my Dr came in and started discussing the diagnosis with me. He did inform me that even though he knows I do not want to he has to let me know that I had the option of aborting the baby up until 19 weeks. I was horrified! There was no way on Earth I would abort my child. I had seen her heart beating and watched her move her little arms and legs. She was my daughter and she was perfect! In that realization I knew I would be ok, it would be a very hard and long road…but I would be ok.
 The rest of the appointment was a bit of a blur. I left the Dr’s office and headed back home, dropping my mom back off at work along the way. As soon as I got home I started researching our local Down syndrome resources and found that we had a Mobile County Down Syndrome Society. I jumped on the phone hoping and praying that someone on the other end would understand the turmoil that my heart was going through. I didn’t get to speak to someone immediately though. They gave me the name and number of a family in the society to call…
 ...and that my friends was the first day of the rest of my life.