Saturday, January 2, 2016

Letter to Family and Friends (secret post 12/5)

One of the organizations I have found (Mended Little Hearts) has some great resources.  And they have this letter for people to send out.  I have read it several times, and it really does speak to my heart. I have not changed it from its written form. 

Dear Friends & Family,
 I need to let you know that my child has been diagnosed with a congenital heart defect (CHD). It was very scary and very hard to find out my child has a heart defect. Right now, I could use your help and support.

There is no known cause of CHDs at this point, so there is nothing anyone did or did not do to cause my child’s heart defect. Parents can do everything right prenatally and still have a child with a CHD. CHDs affect people of every race, cultural background and socio-economic status—they do not discriminate.

I know you want to be helpful to me, so please don’t tell me that things could be worse, that I should be grateful for all we do have, compare my situation to anyone else’s, or give me advice. Please do listen when I need to talk to someone, help me even when I don’t ask for it, and send me emails, texts, letters and cards to let me know you are there for me and you are thinking about me. Please just be there for me, and let me grieve if I need to—even if it takes a long time.

Interestingly enough, CHDs are the most common birth defect in the United States, affecting about 1 in 110 babies (40,000) each year. Around 25% of children born with a CHD will need surgery or other interventions to survive. There are about 35 types of CHD, and some children have a combination of two or more. For some types of CHD, there were no surgeries or procedures to help them survive until fairly recently. Luckily, many children born with CHD are now living well into adulthood.

If you want to learn more about my child’s condition, please ask me the name of it and go to www.mendedlittlehearts.org under CHD Resources to learn more.

Don’t feel afraid to be around me or my child, but if you are sick or even think you are sick, please don’t visit or let anyone else visit us who may be sick. Don’t be afraid to hold or take care of my child; I will let you know everything you need to know. Please treat my child like a normal child and not like a sick or fragile child. My child is strong and brave.

If I become less social than I was, know it is not about you, but that I am trying to cope with changes in my life and my family’s life. Know that sometimes I feel like I don’t fit in with “normal” parents anymore, and I may be a little quieter for a while. I feel it’s not fair that my child was born with a CHD, but I am trying to accept it. I hope you will too. Sometimes, I need to talk to other parents of children with CHD because they have walked this path and truly understand it, but that doesn’t mean I don’t value your wisdom. Know that CHD changes people, but in many good ways too.

Thank you for being there for me during this time.

Reeling and Dealing (secret post 12/5)

What a week it has been, and not in the good way.  Although if I look closely, I can see some good things that happened during it.  

Tuesday night, Paul and I spent hours and hours talking, to each other, to family members, to the dogs. (yes we went there) My night ended about 1:30 am after an hour long conversation with my brother (good thing) My brother and I haven't always seen eye to eye, and we have very different views on the world.  But Tuesday night he said something to me that I have repeated numerous times this week.  He said something along the lines of the following: "The world pushes you to find strength when you most need it. You will be pushed to be stronger then you think you can be."  Now I have always known that my brother was smart, like genius smart. But now I can add wise to his list of qualities.  


Wednesday morning, okay really the whole day, was super tough.  I had maybe about 3-4 hours of non-restful sleep.  A classroom full of excited kiddos, who normally just make me laugh, smile and push me to teach them more and better, just couldn't get me out of my despair.  Now mind you when I was teaching, the mini-lessons, the small groups and one-on-one, I was still on my game.  But the "down times": indoor recess, individual work, and specials time...I was a #hotdamnmess.  At the beginning of the year, I had mentioned to the kiddos that I might start crying for no reason (medications/hormonal) and that it wasn't them at all.  They had two choices: ignore 'crazy' Mrs. Lyons, or give me a hug.  Even though I have been pretty 'normal' recently, I guess they picked up on the sadness and loved me through the day. (good thing)   Love my kiddos and so glad I have this group.  #oneblessedteacher.


Wednesday afternoon and night were pretty much the same as the day.  I was able to come home and cry it out for awhile.  My parents flew back from their trip (good thing)  and I picked them up from the airport in the evening.  As I was driving to the airport and waiting for them to clear customs. I was able to talk to one of my best friends.  She, like my brother, talked about strength.  I do not view myself as strong, maybe determined, hard headed, and stubborn, but not someone who has strength.  Yes, we dealt with devastating news that having a child of our own would take testing, medications and IVF.  But that was not as rare as you might think. (remember this post? 1 in 8 women!) The news that your child has congenital heart defect is just heart breaking.  (about 1 in 110 babies in just the USA) The diagnosis that we have been learning all about. Tricuspid atresia,  occurs in two out of every 10,000 live births and it makes up 1 to 2 percent of all cases of congenital heart disease.  (I have reread that last statistic about 6 times since typing it and thinking "What can I even say after that?")


Thursday I feel like I was in a "better" place.  More sleep definitely helped!  Also coming across this on facebook before rolling out of bed, was the motivation I needed! I am not sure who had shared it, or how it came to be on my newsfeed, but let's just say God knew what I needed to hear. "When you come to a sudden bump in the road, never allow your life circumstances to define you. Instead, let them refine you. Hard things are like heavenly sandpaper on your life. God uses them to shape and mold you into a work of art. When you feel the pressure of trials, remember that God won't allow them to crush you. He intends for them to make you beautiful. 2 Corinthians 4:8-9 (NASB)"  This message has been read, shared, reread and shared some more this week.  The more I read it, the more I believe it, the more I rely on God, which is what I need to be doing regardless, but in times like this it's easy to forget.


I knew that I was going to have to share my news with some co-workers Thursday.  I had planned on telling my grade-level on Friday, but several of them needed individual conversations first so they weren't blindsided.  While it was super hard to lay my sadness on their hearts, I realized that not holding on to the 'burden' all by myself was making it easier for me to breath and process the information.  I work with some amazing people who even though they, and no one knows, what to say or how to act, they said and reacted with what I needed-understanding, love, supportive-ness and honest to goodness sadness.  That last one probably isn't what I mean.  Here is what I mean: they were truly sad that we were facing yet another trial, another piece of journey to become parents. Now am I "happy" they were sad? NO!  But knowing people DO care about you so much, that they take your news into their heart and feel it...well that makes you feel stronger and yeah I guess it does warm your heart.  (good thing)  



Friday was harder than Thursday.  I know telling grade-level was going to be on my mind all day and heavy on my heart. We had a great day of learning in the classroom and I only got teary at lunch...we call that progress in this house! At the end of the day my sweet, amazing, supportive principal called a grade-level meeting.  I was able to share my news with all the ladies I work with.  I won't try to speculate as what was going through their minds.  I so appreciate their kindness and concern that they did share with me.  (good thing) Last night I went to a dear friend's house to share the news.  I knew she would be upset, and that we both would cry...and I am pretty sure that's how I started the conversation. "I don't have good news and we both are going to cry."  We were able to cry and laugh (as the puppy went crazy licking my tears)  We had a great 3 and half hour long conversation about this, the future, her life, the kiddos, etc. I was glad to have been able to spend the time with her.


As I go into the weekend I am hoping for distraction, maybe a little bit of fun and of course more and more research.  Thank you dear friends for the support you have us thus far.  Being "brave" and "strong" are not my main goals in this new process, but I sure am trying!

Level 2 ultrasound... (secret post 12/1)

Before we go any further, I need to tell you to sit down in a room alone, grab the tissues and prepare yourself. This is not an easy post to write and I can't imagine reading it will be any easier.

We have just returned from our over-two hour appointment. I am sure no one was prepared for that long appointment. I know my bladder wasn't at all!  But I digress. Let me start from the beginning. If you haven't read our ultrasound for fun part 2 post, please read that before going any further.Read Now

Today, Paul and I drove up to Novant in uptown to meet with Dr. Shaver. We told our nurse that we had an ultrasound almost two weeks ago for fun to find out gender. We did not share that that nurse had concerns about the heart. However she came to the same conclusion.  I will tell you baby Shea was not being cooperative. He was in a terrible position and would not move very much to give her a great view. What a stinker!   We did however get a great shot of his arm and fingers. We also saw his spine and ribs....super cool. I will forever remember those moments of this appointment.

The nurse had the Dr come in to look and see what he could find. He was very honest, caring, sympathetic, and  informative.  He explained what he was looking for in the heart and then continued to explain what he saw. While we have no official diagnosis at this point (we will be meeting with a pediatric cardiologist who specializes in fetal care) we do know that our sweet baby Shea does not have a right chamber of his heart. Technically he has one, but the ventricle that flows from the  right to left chamber is blocked and the right side is significantly smaller...almost to the point where we had a hard time seeing it on the screen. 

Our son has a congenital heart defect at 18 weeks old.  (In utero) 

I can't even describe our feelings, our heart and minds are spinning. The doctor continued to give us information and answer our questions as we tried to process this news. He did suggest an amniocentesis  because it would give us more information based on the genetics. He isn't thinking down syndrome based on everything else he saw, but something more rare.  He did tell us all tests could come back fine, but there might be something genetically going on and that we would have more information if that was the case.

I also have to share that he gently, brought up terminating. I am pro-choice, always have been and always will be. But I have never thought what will I do if put in the situation of having to decide. Currently I am not leaning that way at all. But I know as more information comes in, I and Paul will have to decide what to do. But looking at the pictures we brought home today, we love our baby boy and want nothing more to hold him in our arms.
The doctor honestly told us our baby would be delivered in either CMC main or out of state at another hospital. I'm not shocked by this, but a little sad. I really enjoyed our hospital tour of CMC-Pineville. And knowing we could be in another state, well, it made it clear this is serious.

This post has been written in stages so please forgive me readers for the clear change in tone of the post.

I left off with the word serious. Don't get me wrong, I knew this was serious...seeing that tiny chamber with no flow of blood, that's serious. But thinking about going to CHOP, Atlanta or another renowned hospital for Shea's birth and heart surgeries...yep sh*t just got real! 

I'm not going to lie when the Dr and nurse left the room, we both had a moment. We had to decide if we wanted to do an amniocentesis today or schedule for later. We did come to conclusion to have it, but my bladder was being super impatient with us. I did empty it on my way in to the exam room, but it filled up fast!  When I came back from the bathroom we went ahead and did the procedure. They said I did great, but I'm sure they say that to everyone. I stared at Paul the whole time. The actual procedure was not that bad, but I really wish I had read up on it more and been more prepared for the 'pain'.  We will get some results this week and the rest back in about 2 weeks.

Our paperwork was already sent to the cardiologist and they will be calling in the am to schedule an appointment. We have done lots of research of not only the preliminary diagnosis but also hospitals. I love Charlotte, I really do, but do I want the #46 hospital on the list?  CHOP and the hospital in Atlanta are ranked in top 10. So is Boston and LA, but I don't know that those are even an option for us.

In addition to the hospital research, I have been looking for organizations for support. Congenital heart disorders are the number 1 birth defect. How did I not know this? Maybe I knew it and it didn't sink in, but don't worry, it's sunk in now!  One of the organizations Fetal Health Organization got back to me immediately. I mean like I sent the "contact us" form and maybe 30 minutes later I received a personal message from a board member. He asked more questions and when I responded, he in turn offered his support, knowledge and three of the top hospitals and Dr's out there.  He even offered to set up a phone call with one of the Dr's in Cincinnati. Now that folks is a good support system.

Speaking of support systems...We were able to tell our parents tonight. Paul's parents were devastated, as are we, and gave us the support they could. We know they are praying for us and loving us from the North.  Getting a hold of mine was a bit trickier, them being on a cruise and at sea all day. We finally spoke about 11 pm and my dad had to be a dad and tell me they were coming home, even though I said there was nothing anyone could do for now.  I hate that they are cancelling their trip, but I love them so much for coming home to take care of us, love on us, support us and whatever else we are going to need in the next few weeks of waiting for more information. 

So my dear readers, friends, co-workers...how many tissues have you used?   I feel confident in saying that we have used a case over here in the past 9 hours. I am sure many of you are just heartbroken with us, some of you have been with us on our long journey that began last fall.  At this time, we ask for love and prayers. Lots and lots of prayers.

I know I've asked a lot from you in this journey, but my dear sweet co-workers, please no pity looks!  And no talking during school...seriously, I can only handle 7 year olds and younger at this time. Really...I have to be able to focus on them, love them and teach them and of course not let them know what's going on for now. I don't know what our future holds, but I do know that I love this class and want to make it the best year I can for them!!  I know some of you are shaking your heads at me right now...yup I can see you, but this is who I am. Teacher till the end, kiddos coming first.

I love you all sweet friends. Thank you for allowing me to share our journey with you and allowing me to just be me, judgment free.

Ultrasound for Fun...part 2

In the first part of the post I purposefully did not mention our entire experience.  There was some big reasons for this, but I also want to blog about it!  So I have Secret Blogged again!  

During our ultrasound, our nurse was looking at the brain, spine and heart.  Just to see how they were all developing.  She noticed something with Baby SH's heart.  She could not see/find all 4 chambers of the heart. She pointed this out to us and asked when we were seeing the OB next.  As it happens, my appointment was the next day.  I told her they said my next ultrasound from them would be 21 weeks.  She strongly encouraged us to not wait that long. The sooner the doctors know about a heart issue, the better the outcome.  

Was I freaking out?  Actually no, in the office I was very calm and collected.  My sweet hubby was for sure a bit nervous.  While talking about the heart in the car, that's when I started to get nervous.  We called a very dear friend, who unfortunately, had a daughter pass due to heart issues, in infancy.  She is such an amazing person and she had some great words of wisdom.  She basically also told us the same things the nurse had. They both had said to push for a Level 2 Ultrasound.  This is done in Uptown (Charlotte), different machine, more information, and a specialist nurse and doctor. 

Fast forward to the next day.  My OB was not very happy we went for an outside ultrasound. Basically told us the nurse had no right telling us about the heart.  (Side note: I disagree fully.  Our nurse operates a level 2 ultrasound  in one of the hospitals Uptown, she also trains the residents as they come in every year.  She also did not charge us for the session, which to me says she is more concerned with us and Baby SH then making a quick buck. It was not a scare tactic at all) The OB  said she wasn't concerned because 17 weeks is early.  

The rest of our OB appointment went okay.  We tried to listen to Baby SH's heart, but they were moving around so much, she couldn't get the heartbeat.  At this point she did tell us that she was glad that we had an ultrasound and heard the heartbeat. (score!)   She also did share with us that we are going to have a level 2 ultrasound, not because of the heart concern, but because of our journey through IVF. (I'm not really sure I believe her, but I am very glad we are going in for a Level 2 ultrasound on 12/1)

Thursday, November 26, 2015

Gender Reveal Time!!

Sunday, Sunday, Sunday!!!   So excited about our gender reveal party!!  I wish I had taken pictures prior to people arriving.  We have no pictures of the set-up.  But trust me it was cute!!  Our neighbor (and new friend!) helped me make bow and mustache pins.  When I was over at her house she offered us her decorations from her reveal party.  It was a perfect fit for what we had been planning! 


We had tons of food: pigs in a blanket( cooked by my dad!), meatballs(made by a friend), cookies in the shape of bows and mustaches (made by my momma), amazing cake (made by Publix), spinach and artichoke dip, corn dip (made by a friend), crack dip (made by a friend), veggie tray, and crackers and cheese.  Beverages consisted of pink punch, blue punch, beer, wine and water.


As people entered they picked a mustache or bow pin, tallied their vote, and guessed Baby SH's day of arrival.  I encouraged people to start eating...food was hot!  Paul helped get people in the door and started handing out drinks.  There was lots of mingling going on.  Panthers game was on...and let me tell you, I had no issues with the game on!  We ended up winning again, love our Panthers! !  


I had a little old wives tales trivia quiz for people to complete if they wanted. A bunch of people took part. My only rule was no use of technology :)  Believe it or not our close friend's 6th grade son won!! He got 9 out of 10 right. He was so excited for his prize of chocolate bars. 

We tried to wait until half time to cut the cake, but we went ahead and cut before the end of the 2nd quarter. 

I think I know based on the icing color I see on the knife!!!




We are completely in shock!  Laughing, excited but so not what we thought!!








We are in complete shock, awe and keep saying "it's a boy?!"  We both were sure baby SH was a girl....but oh no...boy it is!  We are looking forward to meeting our Shea Robert in April. :)  Thank you to all that were there to celebrate and those who wished us well from afar :)

Ultrasound for Fun

At 17 weeks, most dr's offices wont tell you the gender of the baby....but I really just couldn't wait any longer!!  Plus our gender reveal party was supposed to be happening on 11/22 and we needed to know!

We had be given several recommendations, all to 3D Dreams in Fort Mill, SC.  Even though we weren't going to be finding out the gender till Sunday with our guests, we were still really excited to see Baby SH!!  We had about a 30 minute session.  Our nurse was just wonderful!  She made it such a pleasurable experience, I asked about a frequent flier discount! We left with many photos in hand, an envelope for the bakery with the gender and another envelope with come more gender pictures and a video of about 15 minutes!  I wouldn't hesitate for a minute to have that experience again, or to recommend it to someone!  Totally worth the money :)  

Now we are just waiting until Sunday to find out our gender reveal party!! 

Wednesday, November 11, 2015

Week 12-15 update

Wondering where I have been?!  Well...the picture says it all!



The b girls and my husband have been taking really good care of me. I have to say the cheeze-its are new to my diet, typically it's goldfish in bed!  So let me get you all caught up with what's been going on since my last blog.

Week 12: The first time I actually threw up from the nausea.  Both times were right after 
being in the car, so I was worried that I had acquired car sickness. But I seemed to move past that quickly.

Week 13:  We had our first ultrasound in the regular Dr office. We were both looking forward to it!  However, Baby SH then decided I need to focus more on her/him. So instead of being excited all day, I was sick. Like really sick. 10 minutes before the kiddos walked into my classroom, I puked over 10 times. I really should have gone home and rested, but the teacher can't be sick!  So I somehow pushed through the rest of the day. Luckily I have amazeball kiddos and they knew I needed extra support.

Paul met me at the Dr's office for our ultrasound.  While waiting in the little exam room, I had to run to the bathroom twice. I know I wasn't the first person to get sick at the ob office, but still super embarrassing. After coming out the second time I asked for a cup of water. I knew I was going to have to give blood and nothing had stayed in my body all day:(  The sweet lab tech brought me water and laid down the chair/table so I could rest some.
The actual ultrasound went fine. Baby SH is measuring at 6 cm and heart rate is 157...he/she is so big!! Seeing this little one grow every few weeks is just crazy!  He/she is taking up so much room and yet I know will be taking up so much more!

Week 14: I ate a cheeseburger!  Lol I know that may not seem big, but I think it was the first meat I had in a month. I was so scared it would make me sick I didn't tell anyone till the next day.  I made it through the whole week with no sickness either!  No actual sickness,  but the nausea comes and goes.

I also decided to get on the scale.  Mostly because I was curious. I haven't been on the scale since maybe February. With all the meds, depression, and eating in the past 8 months I knew it was not a pretty number. Well in past 8 months (though I'm sure it's closer to the past 14 weeks) I've lost 20 lbs. Between not eating and Baby SH sucking up from my fat cells, I'm not going to lie I was pretty excited. But then also really worried. I don't want to put the baby at risk. I'm going to try to eat more and better.

Week 15: As I begin this week of pregnancy I can say I have eaten two ribs! And am really trying to eat breakfast, lunch and dinner. Or course I'm snacking too. I'm learning the difference between the nausea  (I'm going to be sick ) and the nausea  (I'm need to eat)  My saving grace has been these individually wrapped snacks from Graze. It's this company that ships me 8 healthy snacks every two weeks. They are great to throw in lunchbox or purse!  And they are really yummy too! But I am down another 6 lbs.  I'm not worried yet....plenty of fat cells still remaining!