Hope and Beauty in Broken Places...

Every two years we seem to face a moment of decision that changes our lives.  We met and chose to date, two years later we chose to get married, two years later we took in the boys, two years later we adopted Sophia, and two years later (this June) we chose again.  This time to take in and love a sweet girl named Morgan.  She is 13 and has really brought such joy to our home.  Her story is not one I feel is right to blog right now.  She lost her mom a few years ago, and through God's weaving, we were given the chance to be a part of another divine interruption in the life of a child.  Morgan has mild intellectual disabilities and some speech issues.  Most of the time she is smiling, hugging, helping, and just loving.  She has a great network of teachers and friends around her and we are blessed to be a part of them now too.  She has shown us again that there is Hope and Beauty in broken places. 


This summer is coming to a close and it is shocking to me all that has unfolded these past short months.  We had the gift of having my cousin Linsey be stay with us this summer.  She left last week and I cried more than I have in a long time.  She is heading back home to finish her senior year of high school and we have great expectations for all that will unfold in her life.  She loved the kids so well this summer and I wouldn't have made it through without her!  My brother Jimmy, has also relocated to Baltimore and is in the process of starting to work and find his spot in this crazy Mortenson world!  Last week we had our annual Capernaum Day Camp and all of our family including mom, aunt, and cousins, came to be a part of it.  What a gift to love our friends with disabilities, to be loved by them, and to do it with our whole family.


I said that every two years we are faced with a choice.  I take that back.  Every two years God gives us the gift of being a part of a bigger plan...the only choice is wanting to follow hard after Him and being faithful to His call on our lives.  Its our sixth anniversary this weekend.  Looking back, we might not have choosen exactly what we are living each day...but we are grateful HE chose it for us.  There really is Hope and Beauty found in broken places...there is Jesus.

The Days Fly By...

Amazing! It is 2010, almost officially spring, and two years since Sophia became officially ours!  How quickly the days fly by!  Let me catch you up on our "flying"...


Yesterday marked the two year anniversary (St. Patricks Day!) of our adoption court date in the Republic of Georgia that changed all of our lives.  Two years ago today, we nervously but excitedly met her and her foster sister at a park where we wandered around and then took her back to our home for our time in Georgia.  It was the day all of our lives really changed forever.  Sophia asks me to tell her the story of the "little girl" at night before bed.  I have told her that there was a little girl who was sad (she actually told me the girl was sad before I used that to describe her and now she makes me say it) because she was not with her mommy or daddy, but that her mom and dad flew all the way across the ocean to come and be with the little girl and that they became her mommy and daddy forever.  She loves the next part where I tell her how her mommy flew back with her to bring her to her brothers and that the little girl peed on her mommy on the plane...she laughs so hard and says "and then the little girl was happy!  The End!"  So, that is my report on Sophia...she is happy!  She is so full of life and personality.  It is hard to imagine her as the little shy and timid girl we met two years ago.  We have been facing some medical challenges with Sophia recently and as we are trying to work out what everything means, we are so amazed at the way she is so able to make things like CT scans and ultra sounds a joy to do with her! She is finishing her first year at a three year old program at school and is working her way out of speech and OT as she is just learning and growing up so much. 


Jesse is almost 12 and almost through his sixth grade year at his middle school!  He has changed so much from the tiny, fearful boy who moved in with us three and a half years ago.  He has been spending time with our great friend David who runs the Athletes Serving Athletes (the group that shane did the marathon with) training one day a week with a group of foster kids in a program near us.  He has also started playing Lacrosse!  (I guess I need to work on learning the game!) He is still the smallest kid in most settings but is less upset at his size.  Jesse has still been struggling with school some and his behavior, but we are so thankful for a great counselor, and his youth group at church.  We pray daily for God to keep healing the broken and painful places inside of Jesse.  We can see so much change and pray as he keeps experiencing opportunities to grow and change, that there will be people (and friends) around him (other than us) to cheer him on this race he is in. 
 Shane is 18 years old!!!  It is funny to see people trying to understand when I tell them our oldest is 18!  Shane's year has been pretty stable so far.  In terms of his health, he has continued to lose movement in his arms and hands.  His contractures (his joints get "stuck") are getting worse too...especially in his finger and his neck.  He has been able to stay healthy this year and that is such an answer to prayer!  He actually has a strong immune system so that is a God-send.  Shane loves his new school he started late last year when we moved.  He has a wonderful Personal Assistant, Tony and is growing in his social and educational skills.  He is starting his adaptive Lacrosse this coming month.  It is something he loves.  We are working on getting him set up with some more assistive technology so he can have more independence.  My dream would be one day to have a door on a remote to open (expensive dream huh!!!) since it is so hard knowing how many things keep shane from being independent.  Those little things we take for granted, like the ability to go outside when we want to.  Keep praying for Shane to be open to making friends and for him to stay healthy this spring.
 Ben is coming into his second year of being the director for Young Life Capernaum.  It was a challenging and full year that has really helped him grow.  He still just shines when he is with kids and talking about ways to provide things for them that we again take for granted.  He has been working hard on being a great dad and husband.  The fact that we have three kids from 4 to 18 all with some sort of disability and have only been married 5 1/2 years really has felt like a crash course in parenting, medical things, marraige, and just life!  Ben has just started training for a triatholon (a half I think) with Shane. He still brings the fun to our family and there is not a day that goes by that he isn't being "crazy" (Sophia often says, "my dad is crazy!") and bringing laughter and joy into our home.  God knew to bring us together.  He is the fun one, I just make sure we dont miss our many doctors appointments!
 My life feels full...probably because it is!  I started the year praying for no hospital visits in 2010.  Well, within the first few weeks Ben had a trip to the emergency room (he was ok) and my father with a longer, more serious stay in the hospital with an aortic dissection and anurysm.  He is recovering still but it has been a miracle to see God spare his life and to bring our family together as it all unfolded.  We also began doing a lot of testing for Sophia to figure out the syndrome that has caused her challenges.  We are still working through her tests and results so please be praying for wisdom and clarity.  She was also diagnosed with moderate hearing loss in her left ear.  So, this paragraph was supposed to be catching you up on me!  I guess the medical stuff has felt like my life a bit!  I am still blessed in my job and am really grateful to be a part of a church who really wants to make an inpact in the community for the kingdom of God.  I wish I had more time to do more there but that will come.  I did get a huge gift of being able to go for five days away with my cousin Sarah.  It has been years since we have had time just the two of us and it was an huge blessing.  It was hard to come home after just taking care of myself for a handful of days!  I am so excited about spring coming and have turned into my mom as I am so thrilled to get into the yard and my garden and even mow the lawn!  It helps to live in a beautiful place!


So, there is our update on life as the Mortensons!  Everyday we are aware at the gift of another day of life, grateful for opportunites that are challenging us and growing us, thankful for our eclectic family, and working on seeing the beauty and joy in broken places.


The Mortensons

Many leaves falling....

Ok, so I am officially a terrible blogger! I realized recently that I only do a good job at keeping things like this up during crisis times! Isn't that opposite of what it should be? It is in the "normal", everyday moments that I can't seem to make time for things like laundry, cleaning out the cars, getting a haircut, and blogging! So, here is an attempt to catch everyone up as the leaves are falling in abundance and the house is getting chilly...

-We have been in Phoenix, MD over 6 months so far and love living here! Life has certainly not slowed down but the very act of driving home through fields and farms to our house among the trees just brings a sense of peace that we really needed. We see God's hand in bringing us here and getting the kids into schools that are meeting their needs. We are blessed. We just celebrated the boys coming to live with us. We are going on our fourth year with them! Amazing.

- Ben has been working hard as the Area Director for Young Life Capernaum Baltimore. It has been a challenging season for ministry as we have had many changes. It is new season for the ministry and he is the right person to lead and love it during this time. I have spent a lot of time putting my foot in my mouth, or trying hard to not open my mouth and let him run with this. I do feel like we are in a good place as I step out and he steps up (he was always in...). Please keep praying for finances for the area and for wisdom and strength as Ben leads this ministry ahead.

-I am working as the director of Disabilities Ministries at Grace Fellowship Church and am grateful to be there. I am finding my heart for families and desire to help the fabric of the church be changed from just including people with disabilities to infusing them into the church, have found a place to grow in this role. It is the first time since we got the kids that I am working part time rather than full and that has been harder than I thought! There is more to do when you have more time to do it!!

-Shane is turning 18 in three weeks!! He is doing well at his new school and loves his assistant, Toni! We are so grateful for the people who are working with him. Shane had an amazing chance to participate in the Baltimore marathon a few weeks ago and he is doing another one this weekend through the great work of Dave and his volunteers at Athletes Serving Athletes. I have never seen Shane so happy! As I think of the past year, I realize how much Shane has lost in mobility. He is no longer able to do much by himself, but he is trying and tells me all the time how he wants to do my housework for me!! I wish he could-for him and me!! Pray as he continues to wrestle with this terminal disability. God has used his Muscular Dystrophy, but we still wish it just didn't exist!

-Jesse started middle school this fall! He went through a bit of a bumpy summer as he is still struggling through his unique gifts and challenges that make him Jesse. He is getting involved in youth group and really wants to be a part of Wildfire (young life's middle school ministry) so we are grateful that he is seeking out places where he will be encouraged to grow. He is a strong boy who loves control and yet can be so soft. Pray as he continues to work through who he is and why he is here.

-Sophia started school in the fall at a three year old program where my friend is the speech pathologist. Her heart looks great and she is really just growing so much. She is getting in "trouble" at school for helping everyone too much! I am really starting to have flash aheads to her early teen years. Please start praying for our relationship now!!! Her and Jesse have been irritating each other a lot lately, but people keep telling me that is normal! She has been feeding Shane at dinner and that is so amazing to watch. Shane loves having her do it!

So, thank you again for your prayers, friendship and love. When we think of the 5 years it has been since we were married, we can hardly take in all that has happened. We can also see very clearly how God has used it to change us, draw us to HIM, and has given us eyes that see differently than before. We pray this might be true of us always....

The "Mortensons"!

What a year!

We are so amazed at the fact that it is already APRIL! I am reminded by a friend that we have not updated our blog (so this is for you Roxy!) since Christmas time and it is really amazing how quickly three months have passed. It has been a full and challenging few months as we have had job changes and challenges, surgeries (just a small one!) the passing away of the last of our grandparents, and now a move that took place in just under three weeks!

Amazingly though, we are still keeping our heads above water and even grateful for the many ways we have seen God's hand in the journey. Here is our quick update:

Ben has gone from part time Young Life Capernaum staff to full time area director for Capernaum in Baltimore. He is so gifted at loving people and it is the perfect time for his gifts in the area. He just got the blessing of a few days away to Jackson Hole to snowboard and hang with his good friend Trace and his brother Dan.

Carissa has been working with Grace Fellowship Church as the Disabilities Ministries Director and loves it. She is really experiencing in a new way what it means to parent children with multiple disabilities and sees the need of the church to step up and in! She is maintaining a role with Capernaum as a trainer/planner for the region.

Shane is doing pretty well. We are struggling with dealing with him being a teen and dealing with a terminal disability. He will be changing schools next week and we really hope it is a gift to him as he will be able start over and meet new people. We pray for wisdom on how to love him and keep him moving ahead. He has started lacrosse this last week with an amazing group that runs a program for kids with disabilities.

Jesse is Jesse!! He is growing up and still wresting his past. We are hopeful that this move will also help him! One thing I love is that he loves Sophia. You should see his face when she asks for him... Jesse and Ben are bonding more and it is a gift.

Sophia had surgery to take her adenoids out and put tubes in to help decrease her ear infections and increase her ability to hear. She has not stopped talking since!!! We celebrated her first adoption day on St. Patricks day and the first day home on April 4th! We really don't remember life without her!

We fell into an amazing gift of a home in the country just a few weeks ago and I am writing this blog in the living room of our sweet new home. It has acres of land, is accessible, and is surrounded by horse farms, kind neighbors, and good schools. We still can't believe the gift it is.
We are mostly moved in and will keep working on it as Easter comes. Right now, the kids are spending the week in Connecticut with "gigi" (grandma) and Papa...Carissa cried when she left (first time leaving sophia AND worried her parents would never talk to her again when this is over!) but we are so thankful since this move would be so hard for them emotionally and for us as we would not be able to set the house up for them in the way we are able to now. Thank you so much Zevetchins!!

All in all, when we think back and realize that a year ago we met our daughter and brought her home as a shy, quite little girl, and now she is grabbing microphones at partys and serenading her uncle at his birthday party, we are AMAZED, GRATEFUL, AWARE that there is a God who loves us and has a distinct plan for our lives...for all of our lives. We hope that we will be people who love each other and others better for having been loved so well by the God who made us!
We hope this spring is one of refreshing and beauty!

Blessings!
The Mortensons!

A picture is worth....

Ok, so this last month and a half has FLOWN by and the words have escaped me to describe the many ways God has blessed our family...as it has been busy, hard, rich, challenging, joyful, confusing, and full of life in the Mortenson home.

We are blessed and we are so thankful for a God who came and knew all that we experience...and knows how to love us in the journey.

Carissa

AMAZED

We are amazed by God's hand on our family...

Sophia went to the cardiologist...we were told to come back in SIX MONTHS! I asked if he were sure about that...and he smiled and said that we were the best thing that ever happened to Sophia. I told him no, She is the blessing and the doctors are the best thing that has happened to her...Then I asked about when she can snowboard for Ben...She has to wait:)

We had such a gift to meet Shane and Jesse's mom's family this weekend. It was a huge blessing for us all. They did not know where they were and they were in tears as they communicated their joy at how well they were doing. We know this is not only healing for them (they lost the boys mom through a really terrible accident two and a half years ago and the boys dad would never give us their information) but a blessing for the boys and us!!

We are so thankful that God has given us doors of hope in the midst of some challenging valleys!!

Blessings!!

The Mortensons!

**The picture above is of our kids and my brother Kenji. Jesse and Kenji are really great friends and so his visits are such a great gift!! My amazing parents came to see us and attend our fundraiser for Capernaum in October!

Two FULL years

Wow. Can you believe how much our lives have changed in two years!? Friday night, Halloween, marked the two year anniversary of Shane and Jesse moving in. I will never forget taking them through the neighborhood for candy and then tucking them into bed that night. They had never slept in their own beds or without the TV blaring in the room and so as you can imagine, it was hard at first, but Jesse became a blanket pack rat (like his "mom") and soon learned that the quiet and comfort of your own bed really is great! So, it is two years later, lots of tears, lots of frustration, but also lots of joy and the understanding that this is GOD'S thing. Tonight at dinner, Sophia reminded us to pray (she is obsessed with making us pray...make sure you look at the picture on our blog!) and then Jesse asked if he could pray...so he did, out loud and thanked God for the food and the great day....this is amazing for those of you who remember where he has come from, unable to even (verbally) express a feeling much less pray out loud! Sophia goes to the cardiologist this week to do a more in depth follow up to surgery. She is learning and just becoming her own person every minute!! She talks all the time as well as gives us a really hard time too! Shane is doing ok but we are praying much that God continue to meet him deeply as he grieves the changes happening in his body.

So, as we venture into the month of THANKS...of Shane's 17th birthday (the 25th!) and Sophia's third birthday and first ever birthday party....time with family, times with our friends with disabilities and the leaders we love, colder weather that lets us pile on our sweater and drink hot chocolate, and time to remember all that God has done....we are thankful for you...

MUCH LOVE!

*By the way...doesn't my husband make the best whoppie cushion ever!!:)

How fast the days go by...

I am not sure how it seems to you, but the days here in the Mortenson home seem to be quicker and shorter than ever! I guess it is getting darker earlier. But when we stop and realize that this weekend marked the month anniversary of Sophia's heart being fixed, we are very aware of how quickly the moments are passing.

I am sorry I have not written on here for so long! We feel more tired after Sophia came out of the hospital than during the whole ordeal! I guess that is what happens when we get back to the "norms" of life and we have a toddler whose energy level and personality has tripled!! She really is doing well. We think her new energy level has led to her catching up on many things...mainly the terrible twos!! Our favorite thing we have noticed about Sophia since surgery is that she laughs!! Not just her old laugh but a big belly full laugh all the time. What a beautiful thing it is to hear her fill the house with laughter!

Another anniversary coming up is our two year mark of having Shane and Jesse with us. It feels like years and days all at the same time! Sometimes when the days are long and we don't have eyes to see, it feels like we will always be wrestling the pain in the boys and how it affects them. But when we stop and look at the truth, we see two boys who are truly healing and changing every day. Jesse is playing violin, getting good grades, and talking about his feelings which is such a change from where he was two years ago. Shane is very 16! He is such a smart kid who is really struggling through the fact that his disability is taking from him all the time. He is starting to lose the ability to feed himself and we realize that though we can try to make things ok for him, we cannot stop this terrible thing called Muscular Dystrophy. Please pray for Shane as he works through these days and for us as we need wisdom on how to love him in this. He had his spinal surgery one year ago next week! I cannot imagine what he would feel like or look like without having that surgery. He is such a handsome guy!

Ben is working hard and is an amazing dad and husband. He really is such a wonderful partner in ministry and life. I really did marry up! We are really hoping to get some time for just the two of us soon. Aunt Ellie's river house has never seemed so appealing!!

So, all in all we are blessed...and though at times we might feel consumed:) we are not crushed!!

We are so thankful His strength is made perfect in our weakness!

Much love,

The Mortensons

Grateful

Two full weeks...

Today we had our first follow up appointment for Sophia at her pediatrician's. Dr. Star was the one who initially told us we should let her cardiologist know he thought she was looking a bit worse. Today we got to thank him for getting us to where we are today...Sophia is healing!
He thanked us for our words and said that he doesn't get to do the bit life saving things but that he is always on the front line and it is encouraging to hear that he has made a difference. It made me think of how many people have surrounded Sophia and our family, in prayer, provision, and love to help us be where we are. You may not have done surgery, but you have been a part of holding us up as we have let God do His things with our lives, with Sophia's life. Thank you! We are amazed at those who choose to love the Lord by loving us during this time.

Well, it has been a few days and I am sorry about that! We have had quite a busy few days for many reasons. Our wonderful friends James and Kimmie were married Saturday and we were able to be a part of it thanks to my wonderful Mom and sister who came back down from Connecticut to love us. My cousin Sarah and her two girls(see the picture above (aubrey, sohia, and kaylee) were in town and we were able to spend a little time with them before they left today to move to California to work at a young life camp there. It is a bitter sweet thing...but we are really so happy for their new role there. Sophia also got to meet her aunt Abby who is Ben's twin's wife. She was in town for a funeral and was able to get a little bit of time to meet Sophia. Sophia loved her auntie!

It has been quite an interesting few days as we have seen Sophia be more joyful than we have in months, but also have had some bumps as she has still had a hard time sleeping. Sophia is dealing with a bit of Post Traumatic Stress. She is crying in her sleep and really having what seems to be bad dreams. She did sleep one or two good nights and a few good naps but last night was pretty bad. She got her stitches out of her stomach today where her drains were and seems to be doing well! Her doctor was just so amazed and it is so beautiful to have staff from your pediatricians office tell us how much they have been praying for our little girl! We are still praying for her lungs as she still is congested. As long as her fever stays down we are OK. She has been a bit clingy to mom but we know that it will just be a short time when I wish she would cling to me!! The boys are good. Shane will get his new aid this week and we are hoping it is a good fit. Jesse started playing the violin this week...YES, we are crazy.

We are amazed it has been two weeks tomorrow morning that we went into Hopkins!

To God be the glory!!

Please continue to pray for Sophia to be able to sleep...that her dreams would become peaceful ones and that this ordeal will be less of a bad memory as she heals.

Please pray for Carissa in particular for sleep. She really is not functional with such little rest.

Pray for the boys and our family as we work to get back into a routine. It is a very important part of our family functioning!!

Much Love,
the Mortensons

"no rest for the weary??"

I think we spoke too soon about the peaceful sleeping happening at home! Our night was not peaceful or full of sleep! Sophia is doing ok but really was just uncomfortable and so she was up every hour. We know that this too is a transition time for her, but we do miss the additional help of a nursing staff! We commented this morning that we had more sleep at the hospital than home! Ben and I are really feeling exhausted but we are so thankful!

The kids are happy to be together again. It was great to see the boys more settled with us all at home. So, pray for sleep!! Pray for Sophia's lungs to clear...but as you can see from the picture on this post...she is really getting back to being typical sophia!

Peacefully sleeping...

Just a quick note to say that Sophia is peacefully sleeping in HER bed! We were discharged around 1 pm with such little fuss that it seems strange our daughter had a serious heart operation just a week ago today! She didn't even have a prescription to fill!I think I cried more driving away today that I have the whole time! She was so happy to be outside was thrilled to see Shane get off the bus. We are just so happy to have all five of us at home today. We are praising God for His goodness today and just grateful for His mercy to our family.Please keep praying that we can heal without infection (in her lungs and her wounds),
MUCH love! Ben, Carissa, Shane, Jesse, and Sophia!

Heading home...

It is amazing to me that the last time I wrote was when we were just coming out of ICU. I am sorry for not getting an update out before now. Life on the floor is very different than ICU. I realized tonight that I did not set foot outside of our little room for over nine hours! Unfortunately with the MRSA diagnosis, she is not able to go to the playroom or anything. BUT...the amazing child life staff have filled our time by bringing in paints and toys to help us push through this time. Sophia is doing wonderful. She is going on around 40 hours without any additional oxygen and has amazing stats. She is getting back to being herself, charming and feisty...
If all goes well tonight we may be taking our little girl home tomorrow! We can hardly believe it!
Tonight her surgeon stopped in on his way home. Sophia was coloring and it was a quiet moment. She looked up at him and said hello. I told her that this was the man who made her heart better and to say thank you. She said thank you and then blew him a kiss. He said she looked wonderful and made a comment about God blessing us and our kids we have chosen. It was a great moment to be able to say to this man who reformed my daughters heart, that Ben and I know that God brought her all the way here because she needed her heart fixed by him. We are still in awe of the skill God has given him.
We are so thankful again for all of you who have been on your knees for us. Pray that she is able to come home, that her lung still clears up, that the boys will be ok as we all transition, and that we can all get some real sleep. (we are getting a bit weary).

Out of ICU!!!!

Friends,

Sophia is out of ICU!! We are so amazed at her strength and that we are already on floor 6 at Hopkins. She was ready this morning and moved this afternoon. She is doing well and is resting in her Dora pj's, hair has been washed, and she is finally able to get her fingers in her mouth and nose! (We are not going to fix that right now!!) We are thrilled but cried when she left Megan, our amazing ICU nurse who is now a friend! Please keep praying that her left lung will clear up. It has some fluid on it still and we need it to leave! This is the first time in her life that her oxygen saturation is at 100!!

We are just amazed.

A Turn for the good!

We have much to be thankful for this morning as we get ready to join Sophia at Hopkins!

Yesterday was a day of steps forward and we are excited to see our little girl shining through more and more. We started the day with great stats and with no fever! She only slept a few hours through Friday night and so she was just exhausted. She would sleep for a hour or so and then get up and get mad about the many tubs and such stuck in her. We were able to give her water in small doses and it was if it tasted like icecream or the cake that our friend Tom introduced her to and she is obsessed about now! We had to make her cough after each drink and it is still really hard for her. She would make this pathetic little coughing sound and then shake her head up and down as if to say "I did it!". Ben, our nurse megan, and myself cheered for her so loud I am sure she thinks she is the best cougher in the world!

Mid-day we got a great surprise in that the doctors took all her drain tubes out! We were not prepared for all of them to come out but they thought she was ready! I stepped out of the room but I guess Ben brought some comic relief to the room as he was in there for the drain removal!

I walked in after to see a bare chested girl with just her scars that looked so good! Sophia continued to sleep most of the evening and seemed much happier without the many things taped to her! After dinner we got to give her a bit of a bath and so that we could change the sheets, I got to hold her for a few minutes. As soon as I had that sweet girl in my arms she nestled in and fell asleep in SECONDS! It was the moment I had been waiting for. She said "love you" to Ben and blew him a kiss...that is what he needed!

So...pray we continue to go forward! Her lungs have had a bit of a challenge and are not perfect so please pray that we see them clear up today. She is still on oxygen also.

Thank you again for your visits, food, and love! We feel so surrounded!

Carissa

Day 5...

Yesterday we spent the day in the ICU working to help Sophia stay calm and not pull our her many IV's and drains. She has the breathing tube out and has kept it out for 24 hours. She did not have a great day in terms of strides yesterday as she was put into seclusion due to being positive for MRSA. (She does not have the colonized kind) Her levels continue to be off some and she needed a blood transfusion. She did not sleep at all and only slept for a few hours last night. She was pretty agitated and very upset at her mom because she wanted water and due to the wetness in her lungs she was not able to have more than a spongeful. It was a gift to have her back in a way as she did the sign for water, and then stomped her feet on her bed when we said no. It was painful for me to say no to her for such a basic need when she really has no idea why we cannot give it to her! She did talk some and was responding appropriately. By late last night she was really done with me so I went home. I think she is exhausted and mad and unsure of why her mom is not making things better.

Right now we are waiting for her chest to clear up and drain tubes to be out of her chest. If we continue to move forward, she may be out of ICU on Monday or so. Pray for her to get stronger and for her stats to be stable. We are doing well considering but it feels like the more consistent sleep we get, the more tired we feel! I think the adrenaline has worn off! The boys are doing pretty well. It is a rough time for this family that needs structure! Thank you again for your love and care. We are so thankful for everyone. I have not been good about checking my cell phone messages so I am sorry!! Ben is better and Text messages are the best.

God is making it so clear to us that HE is in control, that we are in his hands, and that when Sophia came into this world, that He knew she would be here and part of this community of people who love her and pray for her...what a gift!

Day four...

On the morning of surgery, I called the boys to let them know Sophia was in and doing fine. Jesse seemed a bit concerned when I told him the name of the doctors working on her...he said"umm, carissa, are they professionals?" I said yes. He said, "are you sure??" I reassured him we would only let professionals give Sophia her newly formed heart!!

So, just to quickly update you...
This morning they took out Sophia's breathing tube! Two days early!!
They are going to get an x-ray soon to see if it can stay out. Pray it can!
She is doing well but has a fever still and they are checking for infection this morning. That is something we do not want to happen! Her blood pressure is still off.

We had a great treat that our nurse goes to our church and is excited to pray while she works with Sophia today! Ben's mom is leaving this morning and we are so sad! She has been an amazing comfort to us and the boys. What a gift to have moms who love us so well and are willing to drive down and jump in! Carissa's mom is here now with Kenji, and so Jesse is thrilled!

On a side note, please pray for Shane. His aid was fired this week and we still don't know why. He doesn't know yet so pray for this process. We are not sure what we will do but we think we really want to change his school.

We want to take a moment to say thank you so much for your letters, calls, and food!! We are so thankful for you all and have felts so surrounded by God as you have surrounded us.
We are sorry we have not gotten back to everyone but we will do the best we can to when we get a chance. Thank you for choosing to be on this journey with us.

Surgery update #2

Just to update you...
We ended up in the OR again last night. Sophia did not stop bleeding last night and so they had to bring her back in to find the problem. They went in at 2 ish and Dr. Vrecela came out around 4:30 to say that they it looked like the heart clotted and stopped bleeding. He did say that the benefit was that he took a look at her heart and it looked great..it has already begun to heal and he is really glad he got to see how well it looks already. We made it home to sleep by 6am.
Sophia is really giving it to her ICU team! She is still fighting the sedation and so they had us stay away a little since she want to just get off the bed and go home!! We are heading to be with her now. Her blood pressure has been a bit off but that is what to expect from 6 hours on bypass! Please pray that she would relax! The same fighting spirit that has brought her this far needs to choose to let herself heal!! Please pray that her levels continue to be stable so they can start to work her off the respiration. She will be sedated much for the next two days to help her begin healing. We are going to make sure to come eat with our boys tonight since they are feeling a bit anxious. Pray that we can feel ok with leaving her when we know it is right but it is so hard to do!

Gratefully!

Carissa and Ben

Surgery update

well, true to who Sophia is, we have a resilient, strong children in the Pediatric ICU at Hopkins tonight. The last two days were long and eventful. Her cath showed what it needed too and showed the need to do this radical correction. Sophia was very upset last night and it was a very long night at the Hospital for her and mom. This morning we met the wonderful surgeon to talk through the procedure and discovered that Sophia's heart is amazing in that it has adapted to having missing veins, holes, and very small arteries. We brought her into the operating room at 7 am where she charmed the room, especially after getting some drugs to make her happy!!
The surgery began before 9 am and we got word after lunch that the 5 hour surgery would be taking a lot more time due to the incredible amount of scar tissue left behind. The 1-3 pm end time turned into a 6:30 finish! Dr. Vrecela met us looking exhausted and was not afraid to say that this was an incredibly hard procedure. He said it was like cement getting through the scar tissue and then it more than double the time to do the work he needed to do. He said he was pleased with the results though she was bleeding some and might require a trip back to the OR tonight. We were told we could see her in an hour which turned into THREE! We also were told they were shocked she already woke up and they had to put her out again.

At 9:30 we saw our little girl who looked so great considering! She was giving the PICU a hard time and they were working to find a stronger medicine since she was refusing to remain sedated. Her feisty side was already showing through! She turned to our voices when Ben and I came in and looked right at us. Sarah, my cousin who was with us today, commented on the fact that a year ago during her other heart surgery, she didn't have a mom and dad that she could look at as she came out of her surgery. What a gift we have that she was fighting to get into our arms tonight!

Sophia is still bleeding and they are giving her blood and watching her at this point as well as giving her a very strong sedative to keep her calm. Ben and I came home to sleep since we are really exhausted. We had great friends and family be with us today and many of you who called and prayed for us...we are blessed.

I will work to catch everyone up tomorrow!

Carissa

Sophia's Heart

Friends,

We are heading out soon to the beginning of the process to correct Sophia's heart!
Today we will have a cath procedure to diagnose which will last four hours and then four hours of recovery. During that time we will meet with the surgeons and find out what tomorrow will bring. Her surgery is scheduled to begin around 8 am (her prep at 6:30 am).
Please keep the doctors (today Dr.Ringle, tomorrow Dr. Vrecela, as well as Dr. Thompson her cardiologist) in your prayers. Please pray today for the boys. Jesse's anxiety over this is really showing. He doesn't want me staying at the hospital. Ben and I have gone through times of peace and times of feeling sick to our stomachs over this and so pray that we can rest in God's peace that surpasses ALL UNDERSTANDING!

Pray for Sophia...She is so joyful in the midst of this and so strong. Pray that she feels deeply God's arms around her and His protection. Early last evening the sky was beautiful with really unique clouds. Sophia pointed up excited and then leaned her head back and threw her arms out and just said "ahhhh!" as she deeply stared at the sky. I said God is up there and the angels are all around you huh...she waved her arms around looking up and said Angels!! We were in the Walmart parking lot and she got a lot of smiles!
We know we cannot control anything right now but we do know that God can and is and in that we are choosing to rest.

Thank you for your love for our family!

Carissa