You are now cured of Twin to Twin transfusion syndrome....

....and now we wait to see if the babies survived the surgery."

Those were the words  I heard one year ago today as the doctor finished up the in utero twin to twin transfusion syndrome surgery to save my babies lives.

One year ago today we were far away from family and friends, alone in a strange hospital preparing to undergo a risky life saving surgery for our unborn baby girls,

a surgery that would not have been possible even 5-10 years ago.

We were told on monday of that week at our check up that we needed to be in California by wed. and would have the surgery thursday, so it was a whirlwind of information and trying to cope with it all so quickly was hard. I remember Kris and I watching THIS video of the surgery that we would be undergoing (this was even our doctor in the video) and just weeping and telling eachother how scared we were.
I watched this video again today for the first time since before the surgery and wept as I saw exactly what I went through. Each step of the video brought back all the feelings of that day. Seeing Dr. Chmait again in this video made me cry tears of gratitude for him and the medical profession that made this surgery possible. Without this procedure, and without this doctor, my baby girls would have died.

The day before the surgery, we had arrived in LA and met with the doctors for our evaluation. As we sat in that waiting room looking at pictures of twins who had gone through this surgery, I couldn't help but worry and wonder if ours would be one of the survivors. As other patients ahead of us came out of the doctors office in tears because their prognosis was not good, I got even more scared. I had 3 miscarriages prior to this point and was so fearful of losing one or even both of these babies.

The night before we left for California we gathered our family around us for a family fast and priesthood blessing. It was one of the most incredible experiences to be able to tangibly feel our families faith and prayers in our living room that night. The spirit of the Lord was so very real and so very close that night as I received a blessing, and Kris received a blessing, to get us through this scary and uncertain trial.

We don’t know that we have ever felt the comforting spirit of the Lord in our life and the calming influence of the spirit as much as we did that night as our family met united in prayer and supplication to the Lord on behalf of these two little babies that we hadn’t even met at that time.

Today we know that the outcome was truly a miracle from the Lord and we are forever grateful for all those of you who excercised your faith on our behalf. I remember sitting in the hotel room the night before the surgery, with tears rolling down my cheeks as I read comments, prayers and well wishes from so many of you and once again being so thankful for all the good people in my life, both those who I know in person and those who I know via the internet. We truly felt of the many prayers sent out for our babies that day!

This was our baby announcement/thank you card that I realized I never posted online to thank all those of you who were a part in helping our babies arrive safely. Through prayers, meals, cards, packages, showers, errands, etc. We THANK YOU from the bottom of our hearts! It truly was because of your help that we were blessed with our double miracle! 

We walked into the hospital the morning of the surgery and were shown to a cold room where I got changed and waited to be prepped. I was put on a bed and wheeled down a long cold hallway. As we turned the corner, Kris was told this is where he would have to wait. He gave me a hug and a kiss and was trying really hard to put on a brave face for me as I looked over my shoulder one last time before entering the operating room. He had to wait all alone in the waiting room for the 2 hours wondering if his babies and wife were ok.

I was awake through the surgery and it felt like an eternity from the time the surgeon started until I heard him say "we are done, and you are now cured of TTTS".  As the surgery started, I was able to look at a monitor next to my head and I could see inside my uterus. I could see my babies at 20 weeks. I could see the dark water filled home my babies were growing in.  I could see the life that was inside of me and it was amazing!

 I could see the hands, and feet of my unborn baby girls, and I could hardly control my emotions as I prayed for those little lives. I watched as the doctor surveyed the situation inside my placenta and as he made note of all the blood vessels that were connecting that shouldn't be, and those were the ones he would laser to divide them. There were a lot of them that needed fixing!

Then the monitor was turned off and glasses were put over my eyes and all I heard for the next hour or so  (although it felt like days) was the blast of the laser and the doctors giving instruction to one another. I literally held my breath through each laser blast and prayed "please Heavenly Father bless my babies to survive this, please bless this to work"

 When I was laying all alone on an operating table in California, watching through a monitor as my unborn baby girls were holding on to life , I remember being more scared and feeling more alone than I have ever felt in my whole life. Kris was not allowed to be in the operating room with me and everything was out of my control at this point. All I could do was helplessly lay there and pray my heart out that the Lord would be with me to get us through this. At that moment when I had no one else, I had my Father in Heaven.  I have never felt more grateful to know that He was there for me, then I did that day on that operating table. Once again, I learned that whenever fears and challenges come into our lives…our Father in Heaven will not leave us comfortless.

Towards the end of the surgery I heard the doctors rushing around a bit calling out commands, and I panicked thinking, "oh no something is happening to one of the babies." But it turned out they were just removing the extra  liter of the amniotic fluid that had built up so high. The doctor then turned the monitor back on for me as he showed me the cotterized vessels in my placenta and told me it was over. When he came up by my head and said "Congratulations Kecia, you are now cured of twin to twin transfusion syndrome" I just wept and said "thank you".

When he met with Kris and I after the surgery he said " We have done what we can do and it went as well as we could have hoped, so now we wait. We all need to say a simple prayer tonight...that we find TWO heartbeats tomorrow morning when we do the ultrasound."

We were then moved up to a room where Kris was able to sleep in a bed next to mine, and we waited.
Probably the longest 24 hours of my life. Towards the evening I began to feel little movements in my stomach which gave me hope that things were ok, but I did not know if those little movements were just one or both of the babies. I was given some good meds for pain so I was able to sleep a little through the night, but Kris didn't. When we woke up, the nurse brought in a wheel chair and said it was time to go check on these babies. The moment of truth had arrived.

As I laid in the doctors office tightly holding Kris' hand watching the monitor as the doctor started the ultrasound, we held our breath.....

The room was silent as the doctor started surveying the babies and finally his voice said...

"There is one heartbeat....

and....


there is the second heartbeat.....

congratulations! Both babies survived the surgery."

Kris and I squeezed hands and cried!

The doctor told us that we were now to go home on full bed rest. We were not out of the woods completely because now we would have to wait and see how the babies learned to adjust to the new conditions and then hope they could make it as close to term as possible. We would also have to pray that my cervix continued to improve from the damage that the TTTS had caused it from all the extra pressure from the extra fluid, and hope that it would hold up for the rest of the pregnancy.

That day began our 5 months of bed rest. At the time it was hard, but we knew we could handle a few months of discomfort to have a lifetime with these girls.

4 days after the surgery we had a follow up appt with the perinatologist here and continued to see miracles. In just those few days, Baby A (Claire) fluid level had gone from .2 up to 3 and we could finally for the first time see her able to move freely in her sac! Before this point, she had always been as if she was suran wrapped and could not move so to watch her move easily, again brought us to tears! Her bladder had also started working again and showed up on the ultrasound. Baby B (Livvy) sac was also starting to lose fluid and rest closer to a normal level. The doctors could not believe what they were seeing. They new how things looked before the surgery and they could not believe how quickly things were looking up now. Another miracle!

Taken from my post a year ago "I can't even express in words my gratitude and the emotions we are feeling right now! we have truely witnessed a miracle and are so incredibly grateful for all the prayers, for this AMAZING Dr. Chmait, and for the Lord's hand in all of this! it is nothing short of a miracle...a huge one! As we thanked the doctor and his nurse it was hard because how do you adequately thank someone for saving your 2 babies lives??!!! There were really no words to use, just emotion and tears...lots of happy tears!!!"Dr. Chmait said we take one step at a time and now that we have this HUGE step behind us, we can focus on getting the babies to term...The babies are now cured of twin to twin transfusion syndrome and now we just need them to make it to term. We couldn't be more grateful."

Today, one year later, as I look at my little miracles, I often just cry. I am so grateful for the surgery that gave us a second chance with our babies.

As Livvy talks and coos to Claire, we can't help but think she was probably talking to her sister in utero as Claire was the one whose body started to shut down before the surgery, saying "its ok sis, they are going to fix us."

"Just hang on a little longer"

I am so grateful they fought together and were both able to be saved.

If you would have told me when I was growing up, or even when I was first married and starting to have children, that my family would have come to me the way it has, I would not have believed you.

I never imagined I would have a hard time bringing children to this earth, or that I would lose 3 pregnancies along the way. 




I never imagined, or planned, on having two children with special needs, 

I never imagined that one of my children would be brought into this world by someone else, but that I would travel around the globe to a 3^rd world country to bring her home to her family, 

I never imagined I would have identical twin girls, 

whose entrance into this world would teach me so much about love, service, compassion, and sacrifice. 

But it was all part of the plan for our family. 

"The road of life has many turns. Sometimes the road of life takes us to a place we had planned....sometimes it shows us a surprise around the bend we could never have anticipated.  but often we find it is only when we look back that we can see that what we had thought was a "wrong turn" has brought us to exactly the right place and every step was a right one after all!"

The Big first Day

 My "littles" started kindergarten yesterday....all day kindergarten.

They will be going to the special ed class all morning and then eat lunch and have a little quiet time and then go to the regular ed classroom in the afternoon accompanied by 2 aides. So although I know having them go all day will give them more opportunities, it is hard to let go.

It is hard with any of my children to send them off to school and into the world knowing they are now with someone else more of the day then they are with me, but with Bree and Mia it is especially hard. 

The night before the girls started school I went to tuck them into bed and was overcome with emotion. 

 As I looked at Bree's sweet face asleep on the pillow I thought...How can this day be here already?

 She is supposed to still be my tiny newborn baby who I can shelter and protect at all times. Ever since she was born I have dreaded the day when I would have to send her into "the real world" because I knew when that day came I could no longer be at her side to protect her and make sure people were kind to her...

 I would not be able to make sure people understood her and accepted and loved her as I loved her and I was scared to death. What makes it worse is that with the lack of typical communication, my 5 year old could not tell me if people were being mean to her or is she was unhappy at school.

 As I watched her sleeping and thinking how can I let her go into "the real world" I looked over at her sister sleeping next to her and a whole new set of emotions came.

Here was our little Mia who only a year and a half ago was all alone in the world and had no chance at life

and now she was going to get to go to school and learn and grow and do things that people in her culture never dreamed possible for someone like her.

I thought about how far this little girl has come in a year and a half and how brave she is to be willing to jump into new things every single day

Her ability to trust and learn is amazing to me

One of my favorite back to school traditions is the father's blessings they each receive (and I always ask for one too). The minute Bree's (and now Mia's) blessings start Kris and I are both a blubbering mess because they are so close to the spirit it is tangible. In Bree's back to school blessing this year Kris talked about how Bree has affected so many lives for good and how so many miracles have come about in our life and the lives of others because of Bree. Because without Bree we would never have found Mia. And without Mia, others would never have found their families. 

Bree is Mia's guardian angel...she paved the way for her and now they get to experience life together.

When I was struggling with all the emotions of what this day really means, my dear friend said " What you didn't know when Bree was born, was that she'd have a best friend to go out into the real world with!"


                                                  
 When we were considering adopting Mia, one of our concerns was how it would affect Bree...she would obviously not get as much of our attention if we had another child with down syndrome, and although there are moments when I think about that, I quickly feel an amazing gratitude that they have each other and that we have BOTH of them. They each have taught, and continue to teach me different things.

They are going to rock this school thing together I can already tell!

I cried all the way to the school...before we had even got out of the car I had tears

Sometimes as these new milestones arrive I am reminded again that down syndrome does affect our experiences and  I start to get caught up in all the "what ifs " of the future and the things that may or may not be.

Going into this year I am worried and unsure of how to juggle these "two worlds"....

                                                 (Bree got quiet and clingy for a few minutes which was hard, but then she was all smiles)

The special ed world

 and the regular ed world

will they fit in to both of them? 

will they fit in to neither of them? 

what is best for my girls? 

and as I started to worry and feel anxious about what kind of experiences Bree and Mia will have at school I found a comment from another friend that hit the spot 

                                                           (the girls with their regular ed teacher Miss Wright)

(Mia and her friend Ruthie from preschool)

She said "God has sent this daughter(s) to you just the way she is because he has many, many great plans! She is there to teach all those kids at school things they will NEVER learn from their teachers. How awesome is that?"

Pretty awesome I must say!

We may not share some of the same experiences with Bree and Mia that we share with our other girls but we will still have amazing experiences with Bree and Mia, and we will have some with them that our other girls won't have,

so in the end, yes, sometimes the what ifs?

come up but it seems like they are quickly replaced by the "look what I will do anyways"

and "its going to be better than you ever imagined"

This day was harder than I had anticipated....

Our little Breezy and our little Mia are growing up

 I cried the UGLY cry as I hugged my girls goodbye and walked out of their classroom. (good thing no picture of that ha ha)

Wondering and worrying if I had done enough with the time I had with them the last 5 / 1 years.
And if they were going to be loved and accepted and safe...if people would know how to meet their needs when they were trying to express them...
and most of all if they were going to be happy.

 And boy was I excited to see them at the end of the day and have them run to me with their huge contagious smiles that light up the room and hear that they had done well!

These two constantly teach me that "Different" is NOT Less and I sure Love them!!!!