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 !!