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