Our Busy Fall!

We have certainly had a busy fall filled with very special events which have focused around our precious Sophia.

Saturday, September 26, Dan and I and our loving and amazingly supportive siblings and friends attended a benefit called "Hope Rocks." The proceeds benefit Faith's Lodge, which is a beautiful lodge just north of Siren, Wisconsin where families of children who are seriously ill or who have lost children can retreat "to reflect on the past, renew strength for the present, and build hope for the future."

We went to Faith's Lodge the weekend after the benefit. Words simply cannot explain how comforting and healing it was to be able to spend 4 full days with other parents who understand just what we are going through. Although we all had different stories, we all could relate in our grief. We spent all four days talking about our journey with Sophia. We found that not only was it therapeutic to be able to talk about her for so many days, but it also felt so good to be able to support others who are dealing with this intense grief. In fact, we have stayed in contact with the 8 couples who were there, and a few have even joined our support group.

The benefit and our time at Faith's Lodge fell at a perfect time as we had been anticipating Sophia's due date, which was Saturday, October 10. Although Dan and I and our famlies continue to find some comfort and peace knowing what a blessing it was to be able to spend our precious day with baby Sophie, we couldn't help but feel a bit of sadness knowing that October 10 would have been her official due date. Our famlies came over for dinner and spent the evening together to celebrate the special day :) We had such a nice night talking about Sophia and sharing our experience at Faith's Lodge. We simply cannon say enough about how supportive, strong and loving our families have been throughout this journey.

Dan and I are just so grateful for all of the support we continue to receive from so many of you. Just when we think that we are so alone in our grief, we receive a heartfelt letter, email or phone call. This has been the toughest thing that either one of us have ever gone through and knowing we have such loving friends and family is just such a blessing :)

We are also thrilled to share that Angie (my twin) and her husband Kyle welcomed baby Bennett Theodore Vershey on October 27th. They are all doing well, and he is such a handsome and sweet addition to the Thompson clan of boy grandsons!

Two Months

Today was one of those days. A beautiful day, an accomplished day, a fun day with our son, Rufus received an A+ at the vet, and Sophia's 2 month birthday. It can catch you in an instant, and linger forever, and I honestly cherish that. Being able to be sad, able to remember, able to conjure up those emotions that were so heartbreaking, yet now bring a feeling of comfort as we remember out little girl. I fear as time continues to pass, her short time with the three of us will feel even shorter, a flash of a memory. Simply, that makes me cry. Alli and I are fortunate that we were blessed with so many gifts to remember her by, and as we continue to look back we can hold on to every moment of the short, precious, beautiful life of our baby girl Sophia.

We have also begun to take steps to help us through our grief. We have recently started attending an infant loss support group with parents who are also living with this great loss. It has been very helpful for us to be able to continue to share Sophia's story and also listen and support others as they share with us. In October we are heading to Faiths Lodge(www.faithslodge.org), a retreat for families who have children who are sick or those who have lost a child. It has been highly recommended and we are looking forward to it. FL is a non-profit organization, and their big event is approaching on the 26th which is "Hope Rocks" all proceeds benefit the lodge. Should be a great night for a great cause.

Keeping busy has been helpful for Alli and I and we can actually thank Jack mostly for that. However, on nights like this, and from time to time its nice to slow down and remember our little girl. It isn't always easy, of course sad, but its important to us. We miss her dearly. A day does not go by that I don't wish I was heading to the hospital or even home to see our little girl, in Mommy's arms, playing with Jack... Its hard to think about what could of been. But, as hard as that is, it keeps her in our thoughts and fills our hearts.

Happy 2 month Sophia, we love you and miss you dearly.

Family.

Dan and I are not sure how to go about writing this post. There are truly no words ever written to express how grateful we are to be a part of the two most loving families in the world.

Our family has been here for us through each step of the way and have given up so much of themselves in order to ease even the slightest bit of our pain.

Our parents have been such an astounding example of how amazing a parent's love for their child can be. When we thought that we could not ask anything more of them, they have been right around the corner with open arms, an ear to lend or kind words of support to offer us. Pride, admiraiton and love do not even come close to decsribe our love and gratitude toward our parents. Simply put, we cannot thank you enough for the amazing guidance you have given us and we only hope to be half the parents you have been to us.

And to our amazing siblings and their spouses...we have always known that we have awesome siblings, but over the past few months you have blown us away. You have all shown us the true meaning of family. Even in the scariest of moments during our brief time with Sophia you were able to make us laugh and take a bit of the pain away. The support that you all continue to show us even six weeks after losing our beautiful baby girl means so, so much and we will never know how to truly thank you.

Finally, if only Jack could understand how grateful we are for him. His darling smile and sparkling personality have lifted our hearts and have brought huge smiles to our faces, even on our darkest days. How sad we are to know how long it will be before Jack will get to hold his baby sister again. Until then, we will remind him daily about what an amazing big brother he was and continues to be. We will forever cherish his love for his new favorite nightly routine...which is saying his bedtime prayers and saying good night to baby "Phia" up in Heaven.

Thank You, Emily

It has been 4 weeks since our family met, fell in love with, and then said goodbye to our precious Baby Sophia. Words cannot explain the loss and sadness that we feel. We were told that our grieving process will not be day to day, but moment to moment. They were right.

One moment we are so, so sad that Jack never had the chance to grow up with his sweet baby sister. And that Sophia wasn't given the opportunity to play with all of her cousins or know what amazing aunts and uncles she has. Her brief time did not allow her to take a nap with Bapa Voigt or sing along while Grandpa Robert played Johnny Cash on his guitar. Grandma Joanne, Nana Mary Jean, and Great Grandma Lorraine were never given the chance to spoil their sweet grandaughter with adorable dresses or bows or books or cookies.

But then the next moment we try so hard to focus on how blessed we are to have been given the gift of meeting our beautiful baby girl...even if it was for one brief day.

One special gift that we were given that helps us smile each day is our photographer, Emily Griffith. Emily was referred to us by a friend when Jack was born and has taken Jack's pictures several times since then. She has always done a fabulous job of capturing how cute we think he is and also capturing his sweet little personality! We called Emily the night that Sophia died. Emily left her house in Rochester just minutes later and drove to Children's Hospital to photograph our family once again, but under very different circumstances.

Emily graciously volunteers her time and talent for an organization called "Now I Lay Me Down To Sleep." I remember reading about it when I was first looking at her photography blog and thinking how special it is that she volunteers for NILMDTS...but never, ever thought that I would personally use this service.

Emily is truly amazing. This was obviously a very special, sad and intimate time for Dan, Jack and I as it was the first time we were able to hold Sophia. It was also the time that we had to say good-bye. Emily was so unobtrusive, gentle, compassionate and professional. I cannot imagine anyone else being there with our family. Emily - you gave us a gift that we will forever cherish. I know as time goes by it will become more and more difficult to remember exactly what her sweet little fingers and toes looked like. Your work touched our hearts and although this is a very sad and difficult time, we find peace and comfort knowing that we will always remember her beautiful face, her darling button nose and her sweet little fingers and toes because of you and your beautiful photography. Thank you with all of our hearts :)

Emily posted several of her pictures on her blog, which is below:

http://lemonlimestudios.blogspot.com/search?q=sophia

She also put these pictures into a beautiful video slideshow:

http://animoto.com/play/zhpxq561H5UftPq0Zux5WQ?utm_campaign=share_email&utm_medium=email&utm_source=share_email

We are sincerely touched...

Dan, Jack and I are truly touched by the love and support that we have received over the past weeks, and even more so at Sophia's Memorial Service. What we anticipated as being the most emotionally difficult day turned out to be one of the most beautiful days of our lives.

We obviously never, ever would have wanted to plan a funeral for our sweet baby, Sophia. But, since it was our only and final tribute to everything that she meant to us we sat down with our families several times and put our heads together to plan the most lovely day for her. And lovely it was.

One of our favorite parts of the funeral was the music. I recently read a book about a family who was told that their child may not live long after birth due to heart disease. The mother explained that her biggest regret was not sharing a lullaby with her baby. I remember reading that section of the book to Dan and sadly said that if Sophie doesn't make it that I wanted someone to sing a lullaby at her funeral. Our soloist sang Brahm's Lullaby. It was absolutely breathtaking. I know after that there was not a dry eye in the church but it meant everything to Dan and I.

We could not have asked for a more wonderful Pastor to preside over Sophia's service. He spoke about Sophia and her short life in such a sweet and uplifting manner. One of the things that he said about her that has resonated with so many was that "You cannot measure a life by the amount of breaths that you take, but by the amount of breathtaking moments that you share." We will hold that statement in our hearts forever.

Another favorite song that the organist played at the recessional was Somewhere Over the Rainbow. We both have always loved that song and it seemed very fitting.

After the service we were able to spend a little bit of time thanking our friends and family for coming in support of Sophia. We were touched that so many people were able to attend. Our only regret was that we were only able to visit for a short amount of time.

Our families then went to the Internment at Lakewood Cemetery. Sophia is laid to rest with her great grandmother. Our families were all there and it was truly a beautiful setting, however a very difficult moment for Dan and I. It was the very first time that we both felt the finality of Sophia's passing. We were blessed to have our parents, Sophia's great-grandma, all of our siblings and their spouses, as well as Jack and Sophie's cousins at our side. One of the most comforting thing that we have learned throughout this is how truly blessed we are to have such loving families and that we are not alone in our grief. It is touching how much her life has impacted our entire family.

After the Internment we went to the Woman's Club for brunch. We gathered our families on the rooftop and, with a pink balloon in each of our hands, we said a short prayer for Sophia. After the prayer we released the balloons. Sophia's cousins loved it because they said that they think that Sophie will get to play with many balloons once they reach her up in heaven (and maybe even pop a few!) The adults thought it was amazing that, until the balloons were out of our sight high above the clouds, they all stayed together in a group. What a fitting sight to be seen. Jack also kept pointing up to the balloons saying "Wook it! Bawoons!" It was very sweet.

We couldn't have asked for a more beautiful day to celebrate our sweet baby's life. My good friend Clare said something very sweet to me today. She said that she has met many people in her life, but no one has ever made a greater impact on her life than Sophia. Dan and I couldn't agree more. A day will not pass that we do not think about Sophia and think about the impact she had on so many.

Finally...we thought that we would post the letter that we wrote to Sophia which Dan read at the funeral. I have never been more proud of my husband. He did a beautiful job.


Our Dear, Beautiful Sophia,

You took your mother and I on an amazing journey…from the moment we first heard your heart beat to the moment we were at your side as you took your last breath.
The doctors told us there was a good chance we would never meet you. We would not listen to this nor accept it, and neither would you. We searched across the country for the right answer and for someone to tell us there was something that they could do to help you while you were in your mommy’s tummy. All that we learned was that it was up to you.

You were feisty, a bit dramatic at times, and you surpassed the expectations of everyone. How you gathered the strength to meet us is amazing. You are our miracle, our blessing, our special gift.

Your mom and I fell in love the second we saw you. We will never forget the first time we gazed upon your sweet little eyes, or when you wrapped your precious little fingers around ours.

Although we only had a short time together, the time we had with you cannot begin to match the impact you had on our family. Your big brother Jack loved meeting you and was especially fond of your precious button nose. Your grandparents and your aunts and uncles were all there to meet you as well, and were so proud of your strength and your fight to give them that chance. You brought out the best in so many in a short amount of time.

It has been one week since we said goodbye. Your mommy and I have such heavy hearts. We did not know it was possible to shed so many tears. However, we find comfort in knowing that your next journey will be peaceful and your heart will be healthy. We know your heart is beating effortlessly at 160 beats per minute and is functioning beautifully.

Our dear, sweet, beautiful Sophia. Our baby girl. Although it may seem like a lifetime away that we will see you again, please know that a day will not go by that we do not dream of holding you. A light will shine for you forever. Dear sweet, Sophie. Thank you for our precious day. You will forever be our beautiful gift.

Love, Your Daddy and Mommy

We would also like to thank the following who took such great care of Sophia:
-Dr. Donna Block and her staff at Clinic Sophia
-Dr. Sivanandam and Dr. Williams at Maternal Fetal Medicine at the University of MN
-Dr. Straughsburger and Dr. Wakai at the University of WI in Madison
-Dr. Hanley from Standford University
-The Pedicatric Cardiologists from Children’s Hospital of Boston
-The entire team from The Children’s Heart Clinic of Minneapolis, specifically Dr. Rios, Sophia’s Cardiologist and Dr. Overman, Sophie’s Heart Surgeon
-The MN Perinatal Physicians, specifically Dr. Wothey and Dr. Calvin, and Dr. Fairbanks who delivered Sophia
-The Staff at Children’s Hospital Neonatal Intensive Care Unit
- We would especially like to thank the nurses in the NICU who cared for Sophie and helped make our day with her so amazing
-Finally, we will forever be indebted to our hero, Doctor Ronald Hoekstra . He gave her such special and extraordinary care. We know in our hearts that there is no one else who could have given our baby better care and attention. He will forever be in our hearts.

Information regarding memorial service and memorials

Lenmark, Sophia Rebbecca infant daughter of Allison(Thompson) and Daniel Lenmark, sister of Jack. Also survived by great-grandparents, grandparents, aunts, uncles and cousins. Service Wednesday July 29, 2009 9:00 am Mount Olivet Luthern Church, 5025 Knox Avenue S, Minneapolis MN. Private interment. Memorials preferred to Minneapolis Children’s Hospital NICU Unit or Minneapolis Children’s Hospital Heart Fund 2525 Chicago Avenue Minneapolis, MN 55404. Washburn-McReavy Edina chapel 952-920-3996.

Memorial Service For Sophia

A Memorial Service for Sophia Rebbecca Lenmark will be held at 9am Wednesday morning at Mount Olivet Lutheran Church in Minneapolis.

Mount Olivet Lutheran Church
5025 Knox Ave S Minneapolis, MN 55419

http://www.mtolivet.org/
612.926.7651

Our Dear, Sweet Baby Sophia. Thank You.

Our hearts hang heavy as we look to each other for the strength to compose this entry. We decided that the only way we can write this post is to curl up together in the hospital bed and reflect on the last 72 hours. The past four days have been an experience in life like no other. We have never felt more joy, fear, elation, sadness or sorrow.

Last night, a little bit after 10 pm, Dan and I were at Sophia's side, holding her precious little hands as she took her last breaths. Her poor little heart could not function the way it needed to, even with the help of her pacemaker. Sophia left this world as she came into it, surrounded by the most loving people in the world, her family. Sophia's big brother Jack, her grandparents and nearly all of her aunts and uncles were there to say goodbye to her. It was truly a beautiful moment as everyone was able to hold and kiss her for the first and last time.

We feel truly blessed that God gave us 1 day with her. We will forever treasure the first time that we looked in her beautiful eyes and held her sweet little hands. We are also truly grateful for all that Sophia taught us. Her life is a reminder that no matter how long or short it is, it is truly a gift.

Sophie, we miss you so much and cannot wait until we can see you and hold you again. A day will not go by that we will not think of you and how much we love you. You are forever in our hearts, you are our angel. We love you Sophia.


Love,
Alli, Dan, Jack and Rufus

Day 2

I first want to thank all of you for all of your kind words, prayers and well wishes for Baby Sophia. Yesterday was amazing in so many ways. Not only was it amazing to finally meet our beautiful baby girl and sleep comfortably knowing her first surgery was a success, but it was even more incredible to see my husband's strength through it all.

Dan was so awesome with me in surgery. I was scared for so many reasons; not knowing what to expect with a c-section, not knowing how Sophia would do right when they took her out, scared to death of what condition they would tell me she was in after doing their initial exam in the connecting room, etc. Dan just sat by my side and said everything would be ok. I couldn't see what was going on while they were finishing up with me, but Dan could. He just kept giving me the play by play of what he could see which was incredibly comforting.

Dan then helped the NICU team transfer her over to Children's Hospital and waited with her while they did another assessment which determined her need for surgery. Angie told me that Dan would not sit down and eat or even just to rest. He was by her side the entire day. I felt badly that I couldn't be there as I was in recovery myself, but each time Dan called to update me on her status I would hang up and feel such a sense of relief and also such pride in my husband. He did not leave Sophie's side for one second. My children are blessed with a truly fabulous father :)

Happy Birthday Sophia !

Alli and I are sitting in our hospital room talking about what we want to say to start this entry.  What can you say to describe this day.  A day that we thought would never come, that we thought could be overwhelming, sad, unnerving, joyful, and of course tearful.  Twelve hours ago it began and it has been all those things and more.  But now as Alli and I actually get to spend some time together and settle down, we can only express what a joy it is to be at the end of this day.  We have a long road ahead of us. However, as Sophia has proven in utero and as she so amazingly proved today, she is going to put up a great fight.

After a restless night we were up early to get ready for the day.  Alli was prepped and ready to go to the OR at 8am.  There she met Dr. Hoekstra who was going to be our neonatal lead for the day.  I followed her in shortly after, and around 8:45 Sophia was here weighing in at 2 pounds, 9 ounces and is 14 1/2 inches long! In the OR we were only able to see her for a split second as she was taken to an adjacent room so the neonatal team could begin their work.  It was a little unnerving for us looking through the window not knowing what was happening. Was she ok? What are they doing?  Once they were done with the c-section Alli was taken to recovery and I went into the ante room where Sophia was.  Dr. Hoekstra and his team were working on her, and he assured me that she was doing well and we were ready to head to Childrens after a brief stop to see Mom.  What a relief Dr. Hoekstra was there.  Dr. Hoekstra is a family friend of my sister in law Krista, and we were put in touch with him a few weeks ago.  He was amazing to Alli, and the level of comfort she felt knowing he was on the other side of the door waiting for our baby is hard to describe. It brought tears to her eyes and helped put us at ease.

Once we arrived in the NICU at Childrens their team took over and began to work diligently to stabilize Sophia and make sure she was ready for her first surgery, an external pacemaker.  As we waited our family was able to come in and meet her, and Alli made it over to see her prior to heading to surgery, which was such a blessing.  At this time we were also able to have Sophia baptized, a beautiful moment with a lot of her family watching over her.  Alli needed to head back to Abbott as I waited with Sophia to prep for surgery.  After some scary conversations with the anesthesiologists and some reassurance from Dr Hoekstra, I was on my way down to the OR to meet with Dr Overman and say goodbye before surgery.  I had a great conversation with the surgeon, and we had a good laugh that we had hoped not to see each other again so soon.  I was blessed that my dad and brother found me in the waiting room and were able to sit with me during her surgery.  25 minutes later the room called to say that they had started and everything was fine. 15 minutes after that they called and were closing her back up and the surgery had gone very well!  What a relief. Every time the waiting room attendant handed me the phone, I was absolutely petrified.

I spoke with he surgeon after the case, he was very pleased with the result. This was also his first actual examination at her heart.  He was very reassuring to me. He said that if she could overcome the issues of the premature birth her heart has a very good chance.  That was exactly what my mentally anguished mind needed to hear. I could not wait to call Alli and meet Sophia in recovery.

160 beats per minute! It is surreal to say and now its a reality and my god does Sophie like it! Within an hour of this change her liver had decreased in size by 50% (a great thing), and her stats and labs improved wonderfully. Seriously. 160 beats per minute. That's 4 times as fast as yesterday. Truly the  best thing I heard all day.  It has been 12 hours and I cannot even find the words to describe this day. We feel so blessed to have finally met our beautiful baby girl and are so overjoyed that surgery went well and that she is safely resting and in the hands of the people at Children's.  We will try and rest well tonight knowing some great obstacles have been overcome.  This journey is just beginning and we know many bumps and turns lay ahead. But honestly, what a wonderful day.

Love,

Alli, Dan, Jack, & Rufus.

28 weeks, 2 Days

This particular entry has been a hard one to start.  For the past two months these updates have followed Sophias development, growth and her all around stability.  That began to change last Monday.  With incremental changes in her fluid levels through the course of the week, we again had to wait through the weekend until today to see how she was doing.  Simply put, the changes over the weekend brought the cardiologist and perinatal physicians to the decision that Sophia will be better off in their hands.

It has been quite the afternoon, this was the first appointment that I was unable to attend.  We cannot thank my mom enough for clearing her afternoon to be there with Alli.  As Alli was processing the information, she was so glad my mom was there to gather all the details and ask the pertinent questions for our arrival  at the hospital this evening.  I do not think I will ever forget the phone call from Alli at about 2:45.  She was still in the ultrasound suite and told me quickly that the fluid levels had increased and Sophia will be born tomorrow, then she had to go as the doctor came back into the room.  We were not able to reach each other for about 40 minutes after that, and I think those may have been the longest 40 minutes of my life.

We met at home, quickly packed what we would need, and tried to play a bit with the doof as we waited for Angie to arrive with Jack and take us to the hospital.  It has truly been a blessing to have such an amazing support network.  We were a bit unsettled with only seeing Jack for a bit this afternoon as he spent the day with Angie, then off to my parents house for the night.  Yet, he was all smiles from a fun day with his Auntie followed by a great night with Nana, Bapa, more aunts and a bunch of cousins.  We are so grateful for all the help and support from our family and friends, thank you.

We arrived at Abbott around 6pm, went straight to the maternal assessment center where Alli had another ultrasound.  Alli was admitted and we moved to a room right outside the OR, and here we are.  This day has brought on a lot of emotion, worry, anxiety, and happiness as we finally get to meet our baby girl in the morning and a new chapter of this journey begins.  Allis c-section is scheduled for 8am, so we are hoping to rest some before what is shaping to be an amazing and full day.  Please keep Alli and Sophia in your thoughts tomorrow, as an anxious and worried dad and husband I will take all the help I can get.  

Love,

Alli, Dan, soon to be big brother Jack & Rufus 

27 Weeks, 6 Days

It has been 4 days now since the doctors found a mild amount of fluid in her abdomen, but Sophia continues to remain stable. There was no sign of increased fluid in her abdomen today and she scored 8/8 on her BioPhysical Profile. They saw practice breathing today which is great but not necessary at her age - way to go Sophie! The only news that made us a bit worried today was that her heart rate was at 38 beats/minute. Dr. Shanti told us that she did not want to see it in the 30's. We of course panicked but the OB that we met with today, Dr. Calvin, said it is not a big deal since her heart rate has been about 40-42 for the past few visits. We talked, again, about the importance of her staying with me as long as she can. Dr. Calvin said that everyday she stays there the better. He said she will go through a major growth spurt in the next month. In fact, she will double her size. He said that at 28 weeks most babies are 2 pounds and by 32 weeks they are 4 pounds. Obviously,  surgically, that is a very big deal.

Angie (my twin) came along today to our appointments. We thought that another set of ears at our appointment with the Heart Surgeon, Dr. Overman, might be helpful. During the ultra sound, Angie saw Sophia wiggling her fingers and stretching and kicking her arms and legs. Sophie also kept opening and closing her mouth and it totally looked like she was talking. I couldn't help but think she was saying "Hi" to her Parents and her Auntie. Or maybe she was saying "Hey, Aunt Angie, watch out! I'm going to be an even chattier girl than you!" (Hee Hee!)

We met with Dr. Overman after our OB appointment. Before walking into our appointment I thought about an email that I received from a mom who has a child with a complex heart defect and has had several open heart surgeries. She explained that meeting your child's surgeon for the first time is truly an amazing experience, and it was. When Dr. Overman walked into the room I could hardly speak. It is an absolutely overwhelming feeling to meet the person who you know will save your baby's life...

I am teary as I write this...mostly because we are SO exhausted. It has been a long few days knowing that we were going to be meeting with him this afternoon. I was so nervous because I was afraid that he was going to tell us different info or more negative statistics. I will leave the actual procedure information for Dan to write after me, but the few main points that he made were comforting. Dr. Overman said that he is not worried about the procedures from a surgical standpoint. He said they are all very common procedures and are "easy to do." Dr. Overman said that, if she is born otherwise healthy, he predicts a very, very successful outcome. He said that there are obviously several potential complications, but from a psychological standpoint for parents he said that it is best to think positively and to know she will do fine with her surgeries. He said that we should plan for Sophia to go to Kindergarten, have lots of friends and a family who loves her. And, rather than becoming an Olympic Runner, she may become an Champion Chess player! Dr. Overman and Dr.  Rios have similar philosophies. (Dr. Rios once told us that most of these babies end up being typically developing kids who ride bikes and kick their dogs!) They are just so positive! Obviously Dan and I are grounded enough and realistic enough to know that there is a very long list of things that could go wrong, but we are going to go with their advice and remain positive for our Baby Sophia.

Here is more technical info...I am off to bed :) Oh, and ps. Thanks Ang for coming. Angie was a good little note taker and took her job very seriously. One funny note is that Dr. Overman kept referring to a baby's weight in grams. Finally, after about the 10th "kilogram" Angie said "Um...so what would that be in pounds?" We all kind of laughed because we truly had no idea!

As Alli mentioned this has been a rather stressful week. We were beginning to think that once-a-week appointments was a lot, but now going 3 times in a week the anxiety and pre-appointment stress builds even faster.  I honestly feel that the way Sophia was moving around today (opening her mouth, kicking, etc) was her way of letting  us know that we do NOT need to worry about her and that she is doing ok.  I hope she plans on continuing this trend well into her twenties!

The meeting with Dr Overman was great.  Finally, some words from the man who will be operating on Sophia's heart.  I especially liked his remark that from a surgeon's standpoint, these are no big deal.  Confidence...I like it. 

We asked a lot of questions and received a lot of information. I am there were several times during our meeting when Alli and I had blank stares on our faces and were simply nodding in agreement. We basically went through the two scenarios of Sophia's arrival (an early arrival versus making it closer to term). He made it clear that surgically, the closer to term the better. If Sophia were to arrive in the next few weeks, they would intervene as needed. He said that they would most likely start with an external pacemaker but wait to do the first procedure to address the structural defects of her heart until she was bigger. This path would entail quite a stay at the hospital.

If Sophia comes closer to term, things may happen a little faster depending on how healthy she is.  This will also entail a pacemaker (external/temporary most likely) and one "first-stage" procedure to help with the structural defects.  Once Sophia grows to about 6-8 pounds, the external pacemaker can be disconnected and a permanent pacemaker will be implanted. Assuming all prior interventions have gone well, and the pacemaker is in, it looks like we could then go home for awhile.  Once 6-8 weeks rolls around, Sophia's next procedure will be the Glenn and then the final procedure will be the Fontan, which will be done when Sophia is about 2-3 years old.  

Dr. Overman told us that this experience is going to be an odyssey, and in so many ways he is right.  We really have no idea what will be in store for her as she grows older.  However, the way they treat this disease will also change in the next 10 years, and that is pretty exciting to think about.

We head back in to the OB Monday afternoon, so if you have some extra good vibrations, send them to Sophia, she needs a few more weeks with mom.

Love,

Alli, Dan  & Jack (and Ruf)

27 weeks, 4 days

We learned at our appointment today that Sophia's fluid level has remained about the same, which was good to hear. The OB that we met with today, Dr. Block, said it looks like there is a slight increase of fluid in her abdomen but is still considered "mild ascites." 

Because there was a slight increase in only two days it seems that the reality of meeting our precious Sophia is not that far away. We asked Dr. Block to explain to us at what point they will take her. He said there are many factors. Dr. Block did say 1 thing that was bitter-sweet to hear. He said that  he would be surprised if I was still pregnant in a month (32 weeks).  Yikes. Of course we are dying to meet her and know she is safely in the hands of the amazing heart surgeons at Children's that we keep hearing about, but understand the importance of her staying with me to grow big and strong. One statistic he gave us was that 80% of babies born at 28 weeks survive and almost all babies born at 32 weeks survive. He also mentioned that weeks 28 and 32 are big milestones developmentally, so we are comforted by the fact that I will be 28 weeks on Saturday but are hoping and praying that she can hold on until at least 32 weeks.

We also had a Biophysical Profile done today and she scored 6/8 (2 points for an appropriate amount of amniotic fluid, 2 for fine motor movement and 2 points for gross motor movement.) She did not get the last 2 points because they didn't see any "pre-breathing" activity (lung tissue movement or the diaphragm moving). However, Dr. Calvin said he saw it last week AND they said that it's not necessary to see now (which was of course a relief to hear!)

Overall, it was not very comforting to hear that there was a slight increase in fluid, but we left feeling ok as her condition was still at the "mild" level. We also really liked the OB we met with today and feel so supported and continue to feel that we are in great hands. 

Friday we are going back to the OB for a hydrops check and biophysical profile and are meeting with our cardiologist and surgeon right afterwards.  We are eager to learn more about what her surgery will entail.

We were given the most beautiful pictures of Sophia today after our ultra sound. We are just dying to get our hands on her and hold her. She looks so precious and sweet.  We know that we are doing everything in our power for her now by researching and educating ourselves as much as possible about her condition, but it sometimes just does not seem like enough. If only we could fast forward time and know she has safely made it to 32 weeks....

We truly cannot thank you for all of your sweet messages. Like we have said a million times before we are so grateful to have you all in our lives. We do not know what the near future will bring, but knowing we are so supported and loved makes this experience that much easier.

Love,

Alli, Dan, Jack & Rufus

27 Weeks - Start of Third Trimester

After a fun-filled  weekend with the Rellers  in town (Dan's sister Missy and family) and a very exciting family birthday celebration last night for Jack (almost 2!) and his Lenmark cousins McLain (1) and Lily (4) we took a lot of positivity into our appointment this morning.

Unfortunately we learned that Baby Sophia has a "mild" degree of "ascites" which is fluid in her abdomen. We had been told this a few weeks ago (at 24 weeks) but after 2nd opinions they said it was only a very trace amount. So over the past three weeks this trace amount has increased. The good thing is that it is not yet technically"hydrops" but the High Risk OB said that he is concerned. 

They are now having us go in for OB appointments every other day to monitor the fluid in her abdomen and to do a Biophysical Profile which looks at the amniotic fluid level and provides information about the Sophia's muscle tone, activity and breathing movements.

We also have a Family Care Meeting scheduled with our Cardiologist (Dr. Rios) and the Surgeons from Children's Hospital this Friday afternoon to better understand what Sophia's surgeries will entail.

We are obviously very concerned but couldn't feel more confident and comfortable with our OB group.  Dr. Calvin (OB) sat with us and let us ask a million questions and kept asking us "Are you comfortable with this plan?" No one has asked us that question, so knowing they are taking care of us emotionally is very comforting.

So, with all of this new information, the plan is to go in for OB appointments every other day. Dr. Cavlin and Dr. Rios said that they will constantly be weighing the risks/benefits of her remaining in utero versus taking her early. Dr. Rios said today that we need to keep her in utero as long as possible in order for her to gain more weight so she is stronger for surgery. Dr. Calvin also mentioned giving me a "booster" lung shot but will wait to see how she does this week. At least this time I will have a heads up regarding possible contractions as a side effect :)

Thank you all so much for the messages. It means so much to know we have such an amazing support system. After appointments like today's, which can be a bit discouraging, it is so comforting to know that we have so many people rooting for us and that we are not in this alone. 

26 Weeks- Happy Fourth of July !

This past weekend was a lot of fun, a much needed diversion for our family. If we include today as part of the weekend, Alli and I learned a lot, to say the least.

Friday we took Jack to his second crawfish broil hosted by our friends, the Fursts. We had a lot of fun and learned somewhere along the line that Jack has picked up a pretty nice leg kick when he throws a ball. He was fully willing to ease into the pool on his own....scary. It was great to catch up with friends that night. Thanks again to the Bros. Furst for hosting a great kick off to the weekend.

My parents host a 4th of July party every year and have been doing it for as long as I can remember. It's something we truly look forward to every year. Its a great day as we get to spend time with great friends who have been close to our family for a long time. Alli and I sincerely appreciate all the nice thoughts and good wishes from them. It is hard to express how great having all of them in our life really is. For the second day in a row, we were blessed with the realization that Friday in the Fursts pool was no fluke. Jack is not concerned with that body of water by any means. The minute those little feet hit the ground he was headed straight for the deep end. He headed right to the diving board, where he stood with toes curled over the edge ready to jump to me. However, by the devious look on his face I feared he was going to jump right over me. Yet even with some encouragement from the sidelines, he didn't make the leap. I can't wait for more fun (unnerving) times with Jack in the water. Its all hands on deck when that little on dons the swim trunks!!!

Today we had our first follow up fetal echo with Dr Rios (our new cardiologist) at Abbott along with an ultrasound to measure how Sophia is doing. I feel like we have been to 100 ultrasounds, although its more like 7, so you would think they had become routine. I realized today, that is not the case. Alli has always mentioned to me that she gets pretty anxious right before they start and today I was in complete sync with her. We now know the few very important details that pertain to Sophia (heart rate and signs of fluid). I honestly don't think our wonderful sonographer had the image up for a minute before we each were firing questions pertaining to those issues. Lucky for us, she was wonderful and guided us through the whole scan. Sophia, as Dr Rios kept mentioning today, is "rock steady". Her heart beat remains in the 42-46 range, weighs in at 1 pound 14 oz, her bone growth is right on with her age, and most importantly, no signs of hydrops!!!

Today was a great appointment because we really got the chance to ask Dr Rios questions and get his feedback. We are always grounded to the severity of Sophia's condition, however, he let us know given all those things her heart is functioning really well. It is very nice to have a few positives painted on what seems to be quite a negative canvas. All in all we left this appointment feeling good and will carry this positivity to next week, and then the next. Sophia is truly showing us she is going to fight, so how could we do any less in return.

Love,

Dan, Alli, & Jack

25 Weeks - 15 To Go !

Sophia continues to remain stable - for the 5th week in a row! This was such a relief considering such a turbulent week last week! We saw another new High Risk OB at Abbott today and really liked her. She did a quick scan to look for hydrops and said there was NO fluid anywhere. My heart was beating out of my chest as she was scanning. It was definitely the most anxious I have been yet but was thrilled to hear that she is stable and that there are still no signs of hydrops.

Dan and I had the opportunity to tour Children's Hospital with the Care Coordinator between Abbott and Children's. It is truly an outstanding facility, not only because of the medical care they provide for children but also because of the amenities they provide families to make things more comfortable and accommodating. They have a cute little play area for siblings and a darling little area where they put on plays for kids/siblings. We could already see Jack loving his visits to see his sister.

Jean also showed us around both the NICU (Neonatal ICU) and the PICU (Pediatric ICU) and mentioned that all "heart kids" go to the PICU after surgery. She said some parents choose not to go see the PICU as it is quite emotional and can cause more anxiety. What an understatement. After learning from Jean what the day will be like when I deliver Sophia, the events that will follow her birth, and after visiting the PICU, we were very overwhelmed and to be honest, very frightened. This was the first time that we were truly able comprehend how serious Sophia's heart condition is and what the first few moments and days will bring for Sophia and our family.

Despite the overwhelming feelings we have today, we can't help but also feel more hopeful as each week continues to bring small victories for Sophia. I turn 32 tomorrow and hearing today that she is stable for another week is the best birthday gift I could ever ask for !

Speaking of gifts....Jack has been very sweet and interested in my "tummy" lately. He is definitely loving his little sister more and more everyday. His new favorite thing to do when reading books before bed is to sing her songs. It's very sweet. The "ABC's" and "Take Me Out to the Ball Game" are at the top of his list :)

Our Walk for Sophia

Dan and I sent out emails to our friends early this morning saying that were not going to do the walk due to strong thunderstorms (we were just going to drive down with Jack to see the event, but not walk). However, despite the rain and thunder and after encouragement from our friends the McKays, we decided to tough out the walk for our baby girl this morning.

My parents, sisters and the McKays all met for the race at St. Anthony main. We couldn't believe the turn out and the amount of "teams" in matching t-shirts supporting other children with heart conditions.

It was a beautiful walk along the river through areas of Minneapolis that we had never seen before. Along the way we met many families with amazing and inspiring stories. Some families were there to support their children with heart conditions and some to remember the children they had lost to heart disease. (These stories were the hardest but it was comforting to see how many people have traveled down a similar path to ours.) One couple that we talked to said that they were in our same position 2 years ago and then introduced us to their darling son, Andrew, who has had several surgeries at Children's and is doing very well. I can't help but think that it was a sign meeting them because they were the "Thompson" family.

It turned out to be a great day. We are so happy that the McKays rallied the group and that we made it. What an amazing day! We cannot wait to do it again next year in support of our baby girl, Sophia!

Early Morning Drama !

We are already learning the difference between raising boys and girls. My pregnancy with Jack was so "unremarkable" and my delivery with Jack was a breeze. This little girl has kept us on our toes every single day! I guess I shouldn't blame today's activities on her, but, it has kept us laughing all day that this is just a foreshadowing of how different raising our little boy and girl will be :)

I woke up at 4:30 this am with a pain in my tummy and by 5:15 realized that I was having contractions. After timing them and honestly almost having a nervous breakdown, I called the hospital and they told me to come in as soon as possible. 

After a few calls to close girlfriends (Clare & Kathy) in the neighborhood at 6 am, we had someone here to watch Jack in less than 10 minutes (Thank you girls!). Dan and I jumped in the car and had no idea where we were going. Yesterday we talked with the people at Children's and decided that, after 5 weeks of research and after getting the results of our latest echo and ultra sound, the best facility to care for our baby girl as well as for our family is Minnesota Perinatal Physicians at Abbott and Children's Hospital of Minneapolis. However, since we just made this decision at about 2pm yesterday, we thought we'd have a few days to change over and deal with the paperwork - we had no idea that I would potentially be in labor this am. We didn't know if we could even go to Abbott this morning without our records there! Our main concern was, if she is born today, the surgeons would not have her records at Children's and it was 6 am and the Pediatric Cardiologist from Children's that we met with two-weeks ago was not going to be there, etc. UGH! Anyway - after a hundred "What should we do? I don't know, what do you think" and a million phone calls (at least 5 to my dear friend Betsy who went through a very similar experience last year and knows the ins and outs of Abbott/Children's) we learned we could go to Abbott and get the paperwork settled immediately. 

After being hooked up to all of the monitors and trying to summarize our file while completely frantic and scared, the nurse looked at me and said, wait,  "You had the lung shot yesterday? That's why you are having contractions!!" We calmed down after she said that betamethasone can sometimes cause contractions and to not be worried. They did many more tests and determined that I was only having "preterm contractions" NOT "preterm labor" which was obviously a huge relief.  They said that the contractions wear off once the medication wears off  so they didn't have to give me any medication to slow or stop the contractions.

We also met with a fabulous High Risk OB. He scanned her and said he was not concerned with her fluid levels and that they are so close to normal they could even be considered to be in the normal range. He said he also wasn't too worried about the dilating of her ventricle as this is what they anticipate to happen. He was not only wonderful bc he told me what I wanted to hear (ha!) but because he sat down next to Dan and I and so thoroughly explained everything that was going on.  He also contacted Dr. Rios (Cardiologist) about the dexamethasone (to treat the fluid) that I was planning to start Friday. Dr. Rios consulted with his team and advised me NOT to take it because a) it is not proven to work and b) steroids are very strong and if you don't need them you shouldn't take them.  (I am so glad to be done with 2nd opinions!!! I can't take it!) :)

Betsy, being an amazing friend and also knowing everything about Children's Hospital and Abbott, paged the Children's Care Coordinator and pulled her out of a meeting to come meet with Dan and I. Betsy adores her and said she helped her family through SO much. She was right, she was so sweet and comforting! She helped explain what the process will be now and when she is delivered and also what it will be like having our daughter in the Pediatric Intensive Care Unit (PICU). We are scheduled to meet her for a tour of Children's next Tuesday.

While I was at the hospital this morning my sister-in-law Krista called me and told me that their family friend, Dr. Hoekstra, who is a Neonatolgist at Children's, would be willing to talk with me and that I could call him today. He was the nicest man! He made me feel so at ease and was so positive. He definitely made me feel like we made the right decision :) He also gave me 4 different numbers to contact him if I had any other questions. 

Finally after waiting at Abbott to get my 2nd "lung shot"...we are home. I am so lucky that my mom and sister Alissa are in town. They came to watch Jack this morning when Kathy left  and when I walked in the house I noticed that my house was sparkling clean! Thank you so much!

So, we went from thinking our baby girl was going to arrive this morning to a much better prognosis than we were given yesterday! I am also on no restrictions and have an appointment scheduled at Abbott for an ultra sound/echo next week!

Thank you all so much for the sweet messages, prayers and support. We are truly, truly so grateful for all of you and there is just no way we could get through this  alone. We are so blessed to have you all in our lives!!

Love,

Alli, Dan, Jack & Rufus

Beautiful, Yawning Baby Girl (24 Weeks)

This is my first entry, I have to say, my wife has explained this experience very thoroughly and is going to be tough to follow.  She has been so amazing through this, I can attest that this has been the hardest thing I could imagine going through, then to try and imagine it for her, is almost too much.   Yet, each week she continues to exemplify amazing strength and tenacity, so amazing, I feel I could fuel hope with that alone. Luckily, we have been blessed with such amazing support from family and friends. We can't thank all of you enough for the support you have shown.  As we have said before, our little girl has mountain to climb and if you find yourself with any extra positive energy to send out, she can only benefit.

This brings me to our appointment today.  We went back to the University, today at the Riverside campus, where we received her initial diagnosis (at the High Risk OB).  Alli had a level 2 ultrasound and another fetal echo.  Dr. Williams, the OB who was at our 20 week ultra sound/initial diagnosis, was with us during the ultrasound. We learned that our baby girl is growing well and is about 5 ounces short of 2 lbs.  They took a lot of good pictures and we got a few glimpses of her face in 3-d. She is adorable, and we even saw her "yawn" while resting her hand on her brow.  Seems she has grown a little tired of all the attention.  I think Alli and I both agree, these weekly appointments are straining, but without knowing what lays ahead, its a little bit of time to see our little girl, resting, kicking, spinning, and yawning.....my favorite part of these appointments!!

Dr. Williams said the baby looked great growth wise, and  her heart rate is still stable at 46 beats per minute. However, he noticed that she has begun to develop "ascites" which is fluid around the abdomen and "pericardial effusion" which is fluid around the heart.   It was a slight amount in each of the areas, but, because fluid was found in two areas, Dr. Shanti said that"hydrops" is evolving.  Also, with the baby growing, her heart has had to work harder.  As a result of the this, her single ventricle has become dilated.  Additionally, Dr. Shanti finally received the results from our trip to Madison, and they believe the baby has Long QT Syndrome, but will not be able to confirm this until they can do an EKG on her when she is born. 

What does all of this mean for her? The Long QT Syndrome, which may be associated with her heart block will be treated with pacing once the baby comes. So, they are looking at the Long QT as more of a "secondary" issue. What we are more concerned with at this point is the evolving "hydrops" and the "dilated" ventricle.  If these symptoms worsened  it could lead to heart failure.  So we have a new possible game plan beyond waiting...

Today they gave Alli a shot of betamethasone, which can pass through the placenta and will help with Baby's lung development so they are that much stronger if she comes early.  On Friday she is going to begin taking dexamethasone, which we hope may decrease the fluid build up (in her heart and tummy) and let the baby stay in utero in order to grow big and strong for surgery.  If the dexamethasone does not work  and the doctors feel the dilation and the fluid are getting worse they plan to take her through cesarean as early as next week (our next appointment is next Wednesday, July 1st and baby will be 25 weeks, 4 days). There are a ton of variables if this happens, the one thing we know, is an external pacemaker will be placed as soon as possible to get her heart rate to a normal level (FASTER!) and then everything else that goes along with bringing a 25 week old baby into the world.  Her first heart surgery, The Glenn, would not be until she was 2-3 months old.

I think it goes hand in hand with going to Riverside...things change.  Our first 3 weekly check ups at the University were all very stable.  But here we are, we are doing a lot today to process all this information and trying to ground ourselves with what is forthcoming.  Quite possibly, our baby girl, in a week.  There is a huge part of me that can't wait for her to get here and let the surgeons fix her heart that is working so hard, and there is also the realist that knows how well she is doing with Alli and wants her there as long as possible.  Quite the conundrum. I guess we have to put faith in our little girl and what the doctors think is best for her when that time comes.

I can see that this post is rather long winded, but, I can be that way.  Again, we can't thank everyone enough for all the messages, calls, and good thoughts for our little girl.

Reminder! Heart Beat 5000: Race for Children's Health (5K)

Tomorrow we will have a comprehensive evaluation; they will be doing another Level 2 Ultra Sound (which looks at all of her structures/organs) as well as a fetal echo. We will be saying many prayers tonight that everything else is developing well and that her heart function continues to remain stable. 

I also wanted to send out a reminder for the Heart Beat 5000 (3 mile Walk) this Saturday @ 9am. We are signing up online today!  If anyone is free and interested in joining us we would LOVE it!  The cost is $25 for adults and $15 for kids under 9. If you go to the website there is a map of the race and it also indicates where to park. I spoke with the race coordinator and she said that you can register online until tomorrow night at 5 pm or you can wait until Saturday morning and register at the race. She also mentioned that there will be fun things for kids to do (sack races, face painting, etc).  I haven't walked/exercised for at least a month, so Jack may end up having to push ME in the stroller :)

Fun-Filled "Girly" Weekend

We had SUCH a fun weekend! 

Angie and I hosted a Bridal Shower for Alissa this weekend which our Grandma Lorraine & Aunt Renae came for. It was SO fun to see them. Jack LOVES his Great Grandma Lorraine (especially since she brought him 2 big jars of Jelly!). Jack had a blast playing baseball with my dad's sister, Renae. It was especially great to get to chat with Renae as she was diagnosed with Long QT Syndrome and has had a pacemaker for many years. After talking with her we learned that the technology behind a pacemaker is truly amazing. Renae will be a GREAT resource for us as she has been through so much since her diagnosis. Thanks Renae and thank you for the jelly Grandma. Jack has already polished off 1 jar!  

Saturday night we had a fun night at the W Hotel, Bar Lurcat & Chambers for Alissa's Bachelorette Party! I think all of the girls had a great time and Angie and I were very proud of ourselves that we made it out until 12:30 (since we are both pg!) 

I think Lissa had fun getting to see all of her girlfriends as well as her mother-in-law and her future sister in law Jen. (It was so fun to meet you, Jen!) Alissa decided to stay for the week to do more wedding planning so it will be fun to get to spend extra time with her, especially since Jack LOVES her :)  

Sunday we celebrated Father's day with my dad in the morning and then we went out to the Lenmark's house for dinner to celebrate Father's Day. Dan was super excited to get to golf Sunday afternoon with Voigt and his dad (even if Bapa beat them both! ha!!)

We hope everyone had a great weekend. Thank you for all of the sweet messages. So far our baby girl continues to remain stable. We are hoping for the same news tomorrow morning!!

Happy Father's Day !

I wanted to wish Dan a Happy Father's Day! Jack is a lucky little boy to have such a great daddy.  They have become "best buds." Dan has already taught him how to swing a golf club and, I have to say that the cutest part of the day is watching them do their morning dance!  Our baby girl is fortunate, too, to have such a patient and strong daddy. Dan has been my rock since her initial diagnosis. We have obviously had so many ups and downs throughout this experience but somehow, in my saddest and most stressful of moments, Dan is able to make me laugh and make things better :) He is an amazing Dad and an even better husband. Love you! Happy Father's Day!

Also - we want to wish Jack's Grandpas a very Happy Father's Day. Jack LOVES his Bapa Voigt and Grandpa Robert. His eyes light up when he sees them walk up to our house. He's a very lucky boy to have two loving Grandpas. Happy Father's Day :)

The Adventures of Jack Robert

I feel badly that Jack has been left out of the majority of the blog so I thought it would be fun to document some of his latest adventures !

His latest obsession came out of nowhere. Dan and I took him down to Lake Harriet to play at the park and to get lunch. With a big hot dog in his hand he pointed and said, "Daddy, look, a Wee-Hah!" We had no idea what he was saying but after a few "wee-has" we realized he was pointing to a man in a Tommy Bahama-ish straw hat and saying "Yee-Ha!" He thought the man was a Cowboy! We were laughing so hard! I can only imagine where he picked this up!  Angie also taught him how to gallop so he is a full-on cowboy running around the house saying "weee-hah!!"

Jack has also become super interested in "dressing." Dressing himself AND Rufus. Last weekend he chased poor Rufus around the house trying to put diapers and socks on him. Rufus is a saint for putting up with this harassment :)

Jack has now become a big-time "climber." I peaked into his room yesterday while he was supposed to be napping and he looked at me with a big toothy smile and said "HI!" while his little toes were tipped over the top of the crib. I'm afraid our days of "caging" him in for the night are coming to an end.

Info from Stanford Surgeon

This is probably going to be boring information for everyone to read but it is exciting for us! 

Dr. Frank Hanley comes very highly recommended by families all over the country. He is known for his work with newborns with complex heart defects. He called me today and we had a great conversation. I know I said was going to be done with asking for statistics but I couldn't help myself! (I only asked him because he is a "guru" in this field.) He said he thinks her chances of making it are much higher than what Dr. Shanti said. He didn't give me number but it definitely gave me more hope and the strength to keep fighting :) 

I also couldn't help myself and asked him the question that keeps lingering in my mind...if it's something that I might have done to have caused this (aka "Mother's Guilt.") Dr. Hanley said absolutely not. He said there is no research to indicate anything and also said that is why we always hear the cliche statement "The Miracle of a Healthy Birth." He said the fact that there are so many millions of cells dividing when a baby is developing, it is truly, truly amazing that so many babies are born healthy. That eased my mind :)

Dr. Hanley said that he has seen very similar cases but not our baby's combination of defects. (UGH! It never gets easier to hear how rare her heart condition is!)  I told him the plans that we have received so far from the University and Children's.

The University wants to see me every week and then do a c-section at 34 weeks. Children's wants to see me every 4 weeks and wait as long as possible to deliver and NOT do a c-section. I also told him that the University brought up steroids and asked for his thoughts. 

Dr. Hanley said we should definitely continue to be seen often to monitor how the baby is doing. He agrees with Children's with regard to letting her develop as long as she can in utero so that she is as big and strong as possible in order to tolerate surgeries (vs delivering early at 34 wks). He also said to definitely hold off on the steroids until we get closer to delivery.

Dr. Hanley said that some families fly out to meet with him. I told him that we would like to do that but maybe when we get a little bit closer. He also said that if we chose to go with him/Stanford that he would want us to come out there as early as a month before hand so their high risk OB team could monitor the baby and get to know her better. 

We are still waiting to hear from Michigan and Mayo. Once we hear from them, Dan and I will have a lot to decide. I initially thought, sure, we'll do it somewhere else but didn't even consider the fact that I would have to go there early and deliver. So, we have a lot to consider but we will do ANYTHING that gives her the best shot at successful surgeries!!

3rd Weekly Echo: 23 weeks

We had a new experience at the cardiologist today....we brought Jack. They were very accommodating and even had toys and a Dora DVD for Jack to watch while they did the echo. At one point Jack even laid down beside me to watch Dora while they scanned the baby. It was pretty funny!

Dr. Shanti was out today so we met with a new cardiologist, Dr. Chip Martin who we thought was great. He was super up beat and nicknamed Jack "Mr. Activity." Very fitting :)  He is a Cardiologist and a Neonatologist so he has more insight regarding her lung function when she is born. He recommended that if she is stable next week that both the baby and I receive a dose of betamethasone (steroid) which is used to stimulate lung maturation.  This was new information for us so it feels good to be doing something proactive for her.  He said her heart rate was at 43 today and that there were no signs of hydrops.

On a lighter, sweeter note, Jack is definitely beginning to understand that there is a baby in my tummy. Last night while we were reading books he leaned in and gave my tummy a kiss and said "My Baby." So sweet!

 

Heart Beat 5000: Race for Children's Heath (5K)

A few friends of ours have sent us this link and asked if wanted to do it. Dan and I think it sounds like a fun and exciting way to start giving to our new found cause :)  

The seventh annual HeartBeat 5000 (formerly PaceMaker 5000) will be held Saturday, June 27, 2009. This event is a 5K Walk/Run and Kids Fun Run. The proceeds from this event will benefit cardiac care at Children’s.

Here is the website if you are interested in joining us! 

http://www.childrensmn.org/Giving/HeartBeat.asp

PS- we are probably just "strolling" with Jack and maybe Rufus (not running)

Ready for the weekend....

Because we have such loving and caring family and friends who have left messages this week to check in, we thought that we would update again before the weekend.

Overall, we think this week went well as far as appointments go. Our appointment in Madison was very interesting (they had me go into a special room that seriously looked and felt like a spaceship). I could not tell you exactly what they were doing except that they were trying to get a more in depth look at her arrhythmia. We are still waiting on the results.

Our 2nd "weekly" fetal echo with Dr. Shanti on Tuesday went well. Our baby girl is still fighting and her heart/heart rate continues to be stable at 40-ish beats/minute.

We had our "official" second opinion with Dr. Rios on Wednesday (he did an echo). He agrees with Dr. Shanti's diagnosis. We really appreciate his honesty and optimism. He said to us that he understands we want another "percentage" of her chances of making it and he said he doesn't like to do that. He said "We are not worried about how other babies have done compared to your baby. We care about your baby girl and how she is doing. I'm an optimistic guy and more often than not these kids to well. Before you know it she will be riding a bike and kicking the dog." We loved that  (mostly because it sounds so much like Jack and poor Rufus!) We explained that we do understand the complexity and severity of her heart defects but really, truly appreciate his optimism and positivity :)  

So at this point we are not sure where we will have her surgery. We just mailed our records to Michigan and Stanford and are waiting to hear back. We heard back from the Children's Hospital in Boston and they said that they have not yet seen this combination of defects and that the mortality rate with this combination of defects is high, but agree with Dr. Shanti, that, if she makes it they are able to operate.  

After talking to Dr. Rios on Wednesday, we realized that we can be done now with getting opinions/statistics on the current state of her heart. We know it's not good and it is a very rare defect. Now we just want to be sure that find a surgeon who has a a lot of experience with working with babies with this complex of a heart condition. We will hopefully have all of the information we need in the next few weeks to make an informed decision. I feel like the last big decision Dan and I made together was what style of fence we wanted or a particular paint color. I would never have imagined the two of us making such a big and important decision. This is especially hard for me since making decisions is not really my strong suit :)

Thank you again for all of your sweet messages. Dan and I cannot express how much we truly appreciate your prayers and support :)

xoxo

Alli, Dan, Jack and Rufus, too!

Madison Biomagnetic Echo (6/8/09)

Here is yet another update :) The official results will take a few days but we got some good info from the Pediatric Cardiologist that we worked with.  Baby's heart continues to stay stable and overall function of her heart was impressive :) We asked her about the ventricle wall getting thicker and she was not concerned (so no need for all of the tears it caused me last week. Ugh!). She is not yet ruling out Long QT and will know more after compiling all the data. She also said that increasing my Calcium, Vit D and Magnesium can help with the Heart Block. So we took action with that bit of info and headed straight to a mexican restaurant for a big bowl of queso and a huge glass of milk! I think i might be sick! :)

We are headed home now and are excited to see Jack !

First "Weekly" Check Up with OB (6/5/09)

I met with one of the PA's at Clinic Sofia today and it was actually a great appointment. She explained to me that she lost a baby at 19 weeks and was very sweet and took a lot of time to just sit and talk. She gave me a lot of suggestions on how to go through this emotionally, etc.  We heard her heartbeat and she said it was in the 40's and that it was a very consistent beat (which is good).

We are going to Madison on Sun/Mon and then have a follow-up echo with Dr. Shanti on Tuesday and an echo with Dr. Rios on Wed.

Also - the families from my yahoo group strongly suggested sending her file and copies of her echo to the top pediatric (cardio) facilities. Missy has been so awesome with helping us get in touch with the people at Stanford (she even called and pretended to be me to get more info! Thank you SO much Missy!!!) And - she has given us great questions to ask our heart groups on how to go about doing this all.  We truly appreciate it :)

So, getting everything copied and researching where to send her records has kept us busy the past 2 days and has helped us feel that we are "doing something."

Thanks again for all of your your sweet msgs, prayers, and positive thoughts :)

xoxo
Alli and Dan

ps-I know these emails are frequent and long...but it feels good to document everything and keep everyone in the loop-even if it means flooding your inboxes :)

First "Weekly" Echo with Dr. Shanti (6/2/09)

We went to the first of our weekly fetal echos with Dr. Shanti today. Our main hope for these appts is that she remain stable and that we see no sign of fluid building anywhere (which she didn't). She did not see any major changes today (HR was at 51 and we got excited, but she said it isn't significant and means the same as 47).  She did mention that the wall around the ventricle is getting thicker which indicates that the single ventricle is doing a lot of work (which is not a great sign.) Ugh.

Dr. Shanti is trying to get us scheduled in Madison for a more thorough examine of her arrhythmia this week or next and we are hoping to get scheduled with Dr. Rios this week or next for an official 2nd opinion (Fetal Echo).

I also have a friend that I met through ECFE who does PR for an Association for Cardiologists. She sent the president an email regarding our situation and he said he would have someone from his group look at her file (he is at Rush in Chicago). He also highly recommended Dr. Charles Kleinman from Columbia which is so interesting bc he is Dr. Shanti's mentor and has already reviewed/consulted our her file. We are sending our info today to Children's Hosp in Boston where they will also take a look at her file.

I can't help but feel a bit discouraged bc of the bit of information regarding the ventrical wall thickening but Dan reminded me that this is what these appts are for and that we have to continue to stay positive and remember that every week that she continues to stay stable is a small victory :)


Love,
Alli, Dan & Jack

ps-Thank you, Nana for watching Jack today. He loved it (and cried when you left which I thought was very sweet!)

Second Opinion (6/1/09)

...turns out to be a very DIFFERENT opinion and one that was fabulous to hear :)

We met with Dr. Rios from Children's Hospital today. We absolutely LOVED him, and not just bc he gave us better news,  but because he was so friendly and easy to talk to. He explained each problem of her heart in a way that was so clear to us. We laughed bc he kept referring to her valves as "canteen" doors. It was references like that which were not only funny but so easy for us to understand. (I told Angie yesterday that I was considering going out to get the book "Anatomy & Physiology of the Heart for Dummies." It is so confusing and we so badly want to understand every single thing about it!)

Anyway - After explaining each problem, he would say "no big deal...we see "boatloads" of these. And would continue on with the next explanation. I laughed at the term "boatloads" but he said that about each defect and it was very comforting to hear :) 

He then explained that her first surgery would be within the first few  days of life, the next at 4 months, and then the last at 3 years.  He also explained these procedures cleary and, again, said they do "tons" of these procedures and made them seem like they were "no big deal."

We then, after waiting and waiting for him to say something negative, asked him what he thought her chances are for making it to birth. He said that since she is now already 21 weeks, he would be surprised if she did not make it. I think the blank stares from us signaled to him that Dr. Shanti gave us much different information.  We told Dr. Rios that Dr. Shanti's statistics were much lower (10-15% ) and he said they truly do not know because our baby's problems are so rare, but most babies with major heart defects who do not make it to birth die much earlier than 20 weeks.  He did say that, yes, her heart is in "bad" condition, but they are not recommending termination because if she does make it, it is fixable. He also said that yes, it's bad, but we have a lot of things going for us (one thing is that it is good that it is the right ventricle that is underdeveloped...but we cannot remember "why.") I think his point was that her heard could actually be even worse which was oddly enough good to hear :)

Despite the great news we heard today, we now feel like we are in such a difficult position and feel like we need a third opinion since these two are so different.  Dan asked Dr. Rios what he would do and we all started laughing! He said that he obviously feels that Children's Hospital is phenomenal...but that the University is wonderful, too. A few things that Dr. Rios said that sets them apart is the volume of pediatric heart cases at Children's, the long term staff members at Children's, and the fact that they are there just to care if kids (vs. research, etc).

So I think for now we are going to go see Dr. Shanti for our echo tomorrow but also schedule a diagnositc echo with Dr. Rios for an "official" 2nd opinion (with the understanding that yes, he did read the full report, but he may find something different after his echo that may trigger him to be less positive..which we are obviously hoping against!)

I was in contact with Mayo today and we are considering going there for a 3rd opinion. We also have good friends (The Smyths) who are helping us get in contact with Pediatric Cardiologists at Children's Hospital in Boston (thank you!!). Hopefully by tomorrow we will have a copy (CD) of our echo from Dr. Shanti and we have an electronic copy of our record from the U so hopefully it will be easy to get a 100th opinion from other Cardiologists :)

We also joined a yahoo group for congenital heart conditions and we have received SO much information and guidance from families who have been in similar situations and have also met with an amazing psychologist who we really liked and found to be very helpful. She not only has gone through what we are going through, but she is very great to talk to and happens to be super funny....so we loved her, too :)

I have to say, after ending our 5th day in our fight for our precious little girl...we are finally exhausted. With the good news we received today, I think we will both sleep soundly tonight. I am not sure what tomorrow brings, but am going to hold on to every positive word we heard this afternoon and will go to bed with a little bit more HOPE tonight.  We cannot thank you all enough for the heartfelt voicemails and emails  that you have sent us. I am actually in tears as I write this because I feel so blessed to have you all in our lives and cannot imagine going through this without each of you.

Love,
Alli, Dan, Jack and Rufus

ps - Again, I am sure this is far more information that you care to read...but we are just too tired tonight to cut/paste/retype :) 

Follow Up with Pediatric Cardiologist (5/29/09)

We wanted to update you on our appointment today with Dr. Shanti Sivanandam (our Pediatric Cardiologist).

We found today's appointment to be much more informative, mostly because we are past the initial shock of the news and because we went with a list of questions and clear heads (and a great note-taker: Angie).

We learned that our baby's official diagnosis is a "Single Ventricle Defect". More specifically, her condition is known as "Ventricular Inversion with a Hypoplastic (underdeveloped) Right Ventricle" along with "Left Transposition of the Great Arteries" and "Complete Heart Block."

Here are the definitions of her heart conditions:
-Ventricular Inversion: Refers to a specific congenital heart defect in which the ventricles are exchanged in position so that the left atrium enters the right ventricle and the right atrium enters the left ventricle (She said that they are "twisted")

-Left Transposition of the Great Arteries:  These vessels (Great Arteries) arise from the wrong ventricle. They are "transposed" from their normal position so that the aorta arises from the right ventricle and the pulmonary artery from the left ventricle.

-Complete Heart Block: This means that the heart's electrical signal doesn't pass from the upper to the lower chambers. When this occurs, an independent pacemaker in the lower chambers takes over. The ventricles can contract and pump blood, but at a slower rate than that of the atrial pacemaker.

Here is the prognosis if each condition stood alone:
-Complete heart block: 50% of babies make it to birth
-Ventricle Inversion: 100% of babies make it to birth

If she had only both of the above (Heart Block + V Inversion) the prognosis would be 20% chance of making it to birth  **But - since our baby has a Hypoplastic Right Ventricle (underdeveloped ventricle) as well as Heart Block and V Inversion - her chances of making it to birth is 10-15%
We know that this statistic sounds very grim - but when we initially heard this news on Wednesday, we thought that the prognosis was less than 5%. The fact that she has a 10-15% chance to make it to birth has ignited us with even more hope in our fight for our baby girl.

As the weeks go by we will know more and more. I will go in to see Dr. Shanti 1x/week to have a fetal echo done and see our regular OB (Dr. Block) 1x/week to check the heartbeat. Dr. Shanti clarified that her heart condition willl not improve. What we are hoping for is that her heart remains stable (which is a heart beat of 47 beats/minute and that it continues to function well.)  She said she does not want it to go below 40 beats/minute. She said the way it was functioning on Wednesday was a good sign. They will be keeping a close eye on the myocardium to make sure it functions well. Indicators that it is not functioning well is fluid building up in different parts of her body.

Dr. Shanti has had one patient who's baby had similar defects. She said her baby made it to 29 weeks, but the baby's heart was not functioning as well as our baby's heart.

After meeting with Dr. Shanti today we feel like we are in the best hands possible. Since Wednesday she had talked to all of her colleagues in her group at the U of M, as well as her mentor who has had 40 years of experience at Columbia University in this specific area, and she mentioned she had been on the phone with her contacts all over the country who seem to be the most knowledgeable people in this field (we were so impressed and comforted by this!!)  We have a 2nd opinion meeting scheduled for Monday. We do not feel like we need it but are going to go anyway...even if it means gaining more information or understanding about her heart condition.

We asked if there are any procedures that we could do now (in utero) and she said there are things we could do (steroids, etc) for heart block to increase the heart rate but w/ her other conditions this would be lethal.

We only talked briefly about what steps would be taken if she continues to stay stable.  The plan would be to do a C-Section at 34 weeks (which is about the first week in September) at Riverside and all of the surgical procedures for the baby would be at the University. (We initially were thinking we would prefer to be at Children's Hosp, but because of the expertise of the U of M in cardio - we feel very comfortable there).  Then, once she is born and they are confident that every other body system is functioning well (lungs, suck/swallow, kindeys, neuro, pee, etc) the first step would be to implant a pacemaker (to correct the Heart Block). After that there would be only a few, simple procedures for the Single Vent, Ventricular Inversion & LTGA.  (She said Dr. James St. Louis at the U would be the surgeon for the pacemaker). 

Because Alli's side of the family has a heart condition called "Long QT Syndrome" which has unfortunately affected 2 of her dad's sisters, Dr. Shanti said she may send us to the U in Madison for further testing. Madison and Italy are the only two facilities which have the technology to thoroughly examine and diagnose arrythmias in utero.  Long QT syndrome has never been detected before birth but this could be a possibility now with their technology. Dr. Shanti has already contacted them and is waiting to hear if they can/will do it.  This would maybe help explain the Heart Block issue and be good information for Dr. Shanti's team's plan as well as information for our subsequent pregnancies.

We also asked her what Alli can be doing to help her stay stable and she said to be as healthy as possible and to "HOPE." She said there is a chance she will make it and we need everyone in our lives to pray and surround this baby with all of the positive energy we have.

We feel SO lucky and so blessed to have had so much support from our wonderful families and friends since our initial test result at 11 weeks. We know you have all been praying and sending all of your positive thoughts since then and ask that you please, please, please continue to pray for our little girl.  Thank you SO much for all of your love and support :) 

Love,
Dan, Alli, Jack & Rufus

ps- We know this is definitely WAY more info than I'm sure you would like but we want to document what happens at each appt :)

20 week Ultra Sound - Initial Diagnosis (5.27.09)

We had our 20 week ultra sound yesterday and unfortunately, even after going in with very positive thoughts we received the news that our baby has a major heart defect along with an electrical problem of the heart. As you can imagine we are so completely devastated. We met with our cardiologist after the appointment and because we were in such shock we didn't full comprehend all of the results so we are meeting with her again tomorrow to better understand what is wrong.  From what we do understand, the likelihood of our baby making it to birth is very unlikely.

I think the initial "shock" of the news is finally going away. Dan and I have both found that sharing the news with our families and now our friends has helped us to continue to move forward. We also decided to find out what we are having.....we are having a girl !!