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  • Day of tears and reflection

    Today started out rough.  Not because of anything with baby boy.  He is doing great.  The appointment this morning was great.  Easter was great.  Even the weather decided to cooperate lately.  But today started off with sadness as we learned that another baby earned her angel wings.  The CHD community is so open and supportive even though we don’t know these people personally.  Olivia was born December 23rd with HLHS – different from Evan but similarly complicated.  You can read her story and blog here.  Warning – you will cry.  Never take a kick, cry, or sleepless night for granted!  Why God needs to take a tiny baby, I don’t know.   But He knows more than me and there must be some other reason I cannot understand.

    In reading the other CHD blogs, you  run across the same things.  I like this story in particular:

    It’s a beautiful day up in heaven. Jesus is rounding up his tiniest angels, to go live on earth, and be born.

    One of the sweetest angels says to Jesus “I don’t want to leave, I like it here, and I will miss you”.

    He reassures the scared little angel that everything will be okay, and that she is just going for a visit. She is still not swayed on this idea. So Jesus kneels down, and says, “How about if you leave half of your heart here with me and take the other half with you, will that be okay?”

    The angel smiles and says, “I guess that will work”. But the little angel is still a little scared. She asks, “Will I be okay with only half of my heart?” Jesus replies, “Of course you will, I have other angels there that will help out, and you will be fine.”

    Then Jesus gives the angel more details about his plan. He says, “When you are born, your mommy will be scared, so you have to be strong, and when you feel weak just remember that I have the other half of your heart. Enjoy your time with your family, play and laugh everyday. And when its time to come back to heaven, I will make your heart whole again. Always remember that you are not broken, just torn between two loves.”

    -Author Unknown

  • Goodbye Toes.

    Goodbye Toes.

    We took these pictures at 25 weeks but I forgot to post them. Tomorrow starts week 28, I will take some more and post them soon.

  • Appointments, Appointments, Appointments…

    Appointments, Appointments, Appointments…

    I am so very thankful that our medical professionals caught this when they did. I feel a sense of calm that we have the opportunity to be prepared for what is going to come. I have been doing a lot of reading and I have seen many stories where the family had no idea, even with the current technologies, that their child was suffering from a heart defect. After seeing an ultrasound of a normal heart and the one of Evan’s, I don’t know how this is possible, the differences are dramatic, but apparently it happens. A family takes their baby home with no idea that anything is wrong, the baby starts to exhibit symptoms like feeding problems, blue lips, lethargic, etc. What a terrible thing to go through. Not having all this worry would be nice, but I’ll take the worry gladly with the ability to plan.


    We’ve had about 4 ultrasounds, a fetal echocardiogram, appointments with doctor’s, cardiologists, high-risk OB’s, etc. The biggest appointment yet is coming up in a couple weeks. We’re meeting with the doctor’s at the University of Michigan for the first time. This is more than likely where Sarah will give birth and where Evan will have all of his surgeries. I am really looking forward to hearing what they have to say and to see the facility. They are the #4 hospital in the US for pediatric heart care so I know we will be in good hands. It’s going to be a loooong day though. 830AM until 4PM with back to back appointments. Cardiologist, pediatrician, genetic counselor, pediatric cardiothoracic surgeon, high risk OB, ultrasound…. It’s going to be a great day, honest. I think we both need someone to help put our minds at ease about this whole thing and I think they are just the people to do it. Don’t get me wrong, the people at Bronson hospital have been great, but they have not seen nearly as many of these things as U of M. Our cardiologist at Bronson has only ever had one other patient with exactly what Evan has (and he’s doing great and has completed all his surgeries). I really want to hear it from the experts in the field that see these all the time.

    Well, I should be getting to bed….Daddy boot camp in the morning. I can’t imagine that I am going to learn much, but that’s ok. 🙂

  • Boy oh boy

    Boy oh boy

    Dear Evan –

    Yesterday your Dad and I got to see you again during an ultrasound.  It’s amazing how much you have grown in a month.  You used to just take up a little bit of the screen and now your profile takes up the whole thing.  The tech estimated that you weighed 2 lbs 4 oz already at 26 weeks.  Holy cow.  You are going to be a big turkey.  I should have anticipated since I’ve already gained 30 lbs…  😐  As long as you promise to go on long walks with me and I’ll wear those get-your-butt-in-shape shoes, let Mommy know what you want to eat and I’ll get it for you.  I’m worried you are going to grow up too fast and you won’t be our sweet little boy for long.  But I also know that being bigger is good for you and your healing.

    You’re doing a great job exercising lately.  And your saucy attitude while the tech was trying to look at you was priceless.  Hey man, if someone was invading my space I would tell them what’s what too.  Yet you’re so shy when we are trying to get a good look at you.  Hopefully we can be a touch more cooperative when we have our appointments at U of M.  They are the ones who are going to fix your heart and make you feel better.  I’m so looking forward to seeing you again.   In the meantime, keep letting me know you are here. 🙂

    Love,
    Mommy

  • Normal Heart vs. Evan’s Heart

    Normal Heart vs. Evan’s Heart

    I created a new page to describe the differences between a normal heart and one like Evan’s… you can see it under the menu item Evan’s Condition or by clicking here.

     

  • Finished the accent wall in Evan’s room

    Finished the accent wall in Evan’s room

     

    You don’t want to know how long this took…. but I love it.


     

     

     

  • Fetal Echocardiogram today…

    Fetal Echocardiogram today…

    We went to the cardiologist today and were officially diagnosed (previous was best guess by radiologist, OB, etc) Evan does indeed have a congenital heart defect but it’s not hypoplastic left heart syndrome. He has a much more rare (1 in 25,000) defect called Tricuspid Atresia with Left Transposition. It’s two parts, 1) There is no tricuspid valve and 2) His left and right ventricle are transposed, meaning on opposite sides.

    I’ll be updating the website with new information but it’s going to take a little while as this is much more rare and hard to find information about.

    Important to note… this still means lots of open heart surgery for our young one, but it sounds like although it’s more rare, it has a little less risk. Stay tuned.

  • Can’t sleep…

    The fetal echocardiogram is in the morning, I need to get some rest but I am too nervous. We have seen ultrasound after ultrasound of Evan’s heart but this is the day where we will hopefully learn something substantial about how well it’s working and perhaps get a glimpse into how the surgeries might go for him. HLHS is part of a family of heart defects and its severity can vary from child to child. The biggest issue is of course the substantially underdeveloped left ventricle but that is just one of many things that can be a problem. Size and flow through the aorta, pulmonary artery, and valves are also very important and play a significant role in the surgeries that are to come. I hope we come away with some good news tomorrow.

  • Baby Tricky

    When my sister was pregnant with her son, she nicknamed him Baby Tricky because anytime one went to touch her belly, he would stop moving completely.  Tricky indeed.  Well, Baby Tricky is strong in Evan too.  Our first ultrasound (the “normal” one) we were delighted to be able to learn he is a he.  During the following ultrasound (the let’s-check-on-this-maybe-it-was-an-angle-issue one), the tech tried to confirm that we were having a little boy.  Of course, Baby Tricky was tired of all the foolery looking at him and discretely tucked his little legs under his bottom and wouldn’t let anyone see anything.  Ok fine.  Our third ultrasound (the welcome-to-the-high-risk-club one) the tech changed wands (?) and took 4D ultrasound images of Baby Tricky.  We never had anyone offer to do so before nor anticipated getting one ever (personally I think they can kinda look crazy but hey it’s worth a shot.)  Baby T. was so over everything by now that he literally had his arms in front of his face, forming an X.  Like we were paparazzi and were invading his private space.  He had never done that before, so it was odd to see him in that type of position.  Needless to say we don’t have a proud 4D ultrasound pic of our little guy, and maybe he is just waiting to surprise us.

     Whatever the case may be, Baby Tricky, I hope we can get some good cooperation tomorrow.  We have our first Fetal Echocardiogram appointment, and we are under the assumption that we’ll be able to learn a lot more diagnostically about Evan’s heart and how well it has otherwise formed and functions.  Please be a brave little boy and let us all take a look at your tiny heart (I think it’s the size of a grape).  We all just want to make sure we are doing the right things for you, and we’ll leave you to your privacy when we are all done (by privacy I mean you can return to playing soccer with my colon, so long as I don’t squish you with my pants).

     I’ll also see if we can’t get take-home pictures for us to have so we can share with everyone.  I know for Will and I, we didn’t fully understand what things are supposed to look like until we could see the comparison of Evan’s heart to that of a fully-developed one.  Here’s to hoping for some good news!!

  • A little too tight

    Dear Evan –

    I promise I won’t wear those pants to work again.  I know they were a little short anyway, and I thought they still fit ok.  But I know that when I sat down at my desk, you disagreed with me every time.  I’m sorry the waistband was a little too tight and pushing into your little home.  Thank you for the gentle kicks to remind me to move a little so you could have your space.  I must still be holding onto some sort of “I’m not really that big” dream.  But at the rate you are growing, my son, pretty soon I’ll only be able to wear sweatpants and muumuu’s.  That’s ok tho – keep getting bigger and stronger every day.  Give me another kick-slap of reality whenever you think I need it.

    Love,
    Mommy