Why Some Days are Harder Than Others

10 weeks ago we found out about Shea's congenital heart defect.  I think it's pretty safe to say that the days that are hardest for us, come out of nowhere! 

This week we met with the fetal/maternal doctor for our ultrasound.  Baby Shea is looking great. He loves his knees.  We have a great picture of him with his knee on his nose...it always seems be hanging around there. We met with a different doctor in the practice and really liked him.  He was funny and supportive.  We love to laugh and especially during the scary times its good to have a laugh or too.  

Last night we took our first baby class!  It was entitled Infant CPR/ Taking Care of Baby.  So really two classes in one.  Paul had already had the infant CPR, but its been about 10 years for me....I was very glad for the refresher and reminders.  I never knew how fast to do the chest compressions. Our instructor gave us a few songs to think about.  Paul and I were softly singing "Stayin' Alive" during the class.  It was a silly moment.  We also practiced swaddling and changing diapers.  Paul did great with the doll.  Lets hope Shea will be still enough for Daddy to practice some.  We also got a great bath how-to.  I love that she presented it as Daddy time.  It will be a great bonding time for Paul and Shea.

So where did today come from?!  I was fine all week!  But then I spent this morning sobbing. Tears gushing, body shaking, ugly sobbing!  I've been trying all day to figure out where today came from.  I have come up with several thoughts:

• I've been busy all week and have no time to "think"  I'm so blessed to have a job that keeps my mind and body very busy! So then the unplanned weekend comes and my brain starts to "think" again.
• There are several families in the community going through some very tough times right now.  And why I am so sad for them and praying for them, it's just a very serious reminder of how my world could be in a few short months.  It's terrifying. And being reminded of it constantly....well I am already a worry-wart, so it doesn't help the anxiety.  
• I also start to worry about my family and friends.  If you know me, you know I really do think about others before me.  I want to protect my loved ones, make them feel okay, no matter what I want.  So in efforts to keep them protected, I give up my wants...or try.  Let's be honest here...Paul and I have an amazing support system...and they won't go away even when we tell them they can.  We love you!!

Here is the good news...I was able to turn off the sobbing, collect myself and go support Paul!  He has become an avid volleyball player, again, in the last few years.  I have been so sick the past few months, that I haven't seen him play.  So today...I was determined to get there.   I got there finally and watched him play 4 and half games.  He finished the tournament 7-4....and went to the finals!  (at the time of this post he is still playing!)  I was glad to support my husband and he was so happy that I was there.  I made his day and that fact made mine:)

This morning was rough, but I made it through!  To my loved ones, please know that I love how you love us, and I know this is rough for you too. To people in my community, please know that your struggles are mine, but sometimes it's too much on my heart to take, but I won't stop praying for you.  

Sharing Stories is a Slippery Slope

I am super grateful for all my friends, family and readers!  I really can't say that enough. However sharing our story opens the door for everyone to tell us their stories.  Sometimes this is a great comfort and sometimes its really heartbreaking and annoying.  Yup I said it...sometimes you just don't want to hear anyone else's story.  So sharing our story is definitely a slippery slope, and I knew that before ever starting our blog.  Would I take back this blog...absolutely NOT!!  The pros more than outweigh the cons.  I am blessed to be able to share our story, I am blessed to have amazing friends, family members and readers who love us no matter!!, and I am blessed to be able to have the gift to write this all down. One day Shea will know how much we wanted him, fought for him and he will know how loved he is by all of you!

This journey has been so rough and so heartbreaking and so eye-opening.  I never knew how many people out there had gone through the IVF journey until I put my story out there. I never knew how many people had also suffered the heartbreak of finding out their unborn child was going to need lots of help!  I also had the eye-opening experience that people felt like my words were written to help them through their pain and grief.  The past week I have been on the receiving side of that.  Friends have shared some blog posts with me that not only reminded them of us and our situation, but when I read them, I truly felt like the words were written for me and that I was meant to read them when I saw them.  

Special Needs: Wrestling with Guilt was one shared with me by a neighbor.  While the blog spoke to me about the guilt of "doing something wrong" to cause our situation. It also reassured me that I know deep in my soul that I and Paul didn't do anything to cause this.  Not me getting my hair colored after my first trimester, not me sneaking 3 pigs in a blanket at our Gender reveal party (gasp!!!), nothing we did caused this.  Our son's CHD happened when his cells were duplicating and duplicating just to make him into an embryo, and most likely while he was in that petri-dish that he grew in for the first 6 days!  I had a great conversation with a co-worker about the guilt as a mom, watching a kiddo struggle through any special need.  I do have to say, even though I am not a mom yet, I know I will feel that guilt and pain when I see Shea struggling to breathe. Or when he is "behind" meeting his milestones of crawling, walking, and eating even.  So I guess this blog was meant to remind me that even though  I don't feel the guilt now, I will.  And I will be able to refer back to this post for support.  

The other post that was shared was All of us, son, love all of you.  I read this one this morning, and I cried.  I cried for a few reasons: 1) I could totally feel the mother's pain in her words.  I just wanted to reach out to hug her. 2) I could picture myself, in a few short months, doing the exact same things she does in her post.  3) Her words are so real. She didn't hold back her true feelings. 4) Martha's, the nurse, words.  I can not stop reading her words.  "When you choose to have a child, you do not order-up a baby. You sign-up to parent the child you're entrusted with - the one you have, the one who is counting on you. If you only want to parent the perfect baby you want to have, you have no business becoming a parent."  I needed these words, I continue to need these words.  I never imagined us having a perfect baby. But I sure did think the "hard" part was us just getting pregnant.  

So here is what I am left with today on our snow day part 2.  Sharing our story is incredibly therapeutic. It helps me get out our story out,and share with our family and friends worldwide. But it is just like the roads in SC and NC today....a very slippery slope. Through years of teaching I have acquired a thick skin, and it sure has helped me through this process as well!  So please don't stop sharing your stories, or resources. Because sometimes they are just what I need! Just know that if I don't engage in the conversation, or become quiet, or just smile and nod, I am just overwhelmed and can't take anymore.  

Love you very much readers...I hope you know that!

New Dose of Reality

Last Thursday (1/14) Paul and I had a bunch of appointments at CMC-Main and Levine Children's Hospital. We would have a nurse coordinator with us the whole time. We knew we would be having three tours and meeting with two doctors, but we were not at all prepared for the dose of reality that we were about to experience. 

First up was our meeting Shea's heart surgeon, Dr. Maxey.  We were very anxious about this consultation, we knew it would really tell us whether staying in Charlotte was a real possibility for us or not.  I wont go into the whole appointment, but I will say, we both really liked him...and his statistics.  Since our diagnosis and treatment is a little bit more on the rare side, we wanted numbers, and good ones!  He was very honest and upfront with us.  When sharing the information with us, he and us got teary-eyed.  We know this doctor is a man who is not heartless and cold.  He fights for his patients and will do everything he can to save them.  We were lucky enough to be in a room next to a patient of his who has had the BT shunt and the Glenn (our first two surgeries) and was getting ready to schedule his Fontane (3rd surgery).  We met his parents and him....cutest little 2 and half year old ever!!!  I was able to quickly ask mom, was she pleased with the care Dr. Maxey had given them and had she known prior to giving birth would she have stayed here.  She answered yes to both of those questions immediately. There was no question in her mind that Dr. Maxey and Levine's was the place for her son.  Such relief.  And also another local heart momma I can reach out to. 

Next we toured Labor and Delivery.  Pretty standard, except two things. 1) One labors and delivers in one room and postpartum in another room.  I am not super excited about moving rooms, but I am glad I don't have to walk it!!! (it was a long walk!) 2) We will have a NICU team in the room with us.  Because of Shea needing immediate checking out and care. We will have a team of 3-4 people dedicated just to him.  He will be in the room with us while they do the initial checking out.  Praying now that he will be okay enough for Paul and I to hold him for a few short minutes before rushing him downstairs to the NICU.  I know that when they whisk that sweet child out of my room, I will lose it.  I apologize now to my husband, nurses, doctors and family members.  I will not be a nice person, I will be a #hotdamnmess,  I will be lady who just delivered a baby and dealing with all those emotions PLUS not knowing what  is going on with her child.  Paul will be able to go down and be with Shea, once he is settled.  Most likely a few hours after delivery.  I will be allowed to go down when the pain killers ease up and I am feeling up to it.  

While we couldn't tour the NICU due to admissions and our schedule, we will be going back to do that tour in February.  We did however meet with a neonatalogist who did a wonderful job describing not only what his job was and the NICU itself, but also how Shea's first few hours would be.  Our son will be receiving an echo from a cardiologist as soon as possible.  Hopefully he will be born during the daytime and can get that echo quickly...would help this nervous momma's nerves.  But if born in the middle of the night, he will probably get it the next morning.  Of course if the monitors are telling them he is not doing well, they will get the cardiologist on call to do it right them.  Some other things he prepared us for:  

• Shea's color will not be the pink that you see.  He will be dusk colored or even blue shaded.
• Skin to Skin time will be hard because of him being hooked up to everything.  They will try their best for some skin to skin and also some breastfeeding, but again at first they just want him to spend time in his little crib.
• Shea will probably have either a PICC line to help with meds and nutrition.  We need him strong enough for surgery!
• We will most likely be in the NICU for 3-7 days before we head to surgery 

We were able to break for lunch, which while I didn't think I needed...I needed it.  Surprisingly CMC-Main's food was great!  I had a stromboli and Paul had the pizza.  We each had a dessert that was equally yummy!  We were also to take a break from the seriousness and enjoy some talking.  Of course we talked about what we had just experienced, but still talking to each other was nice

Next up we visited the CVICU.  There are several things about this unit that I absolutely loved.  One being that there are family rooms in which one can sleep on a real bed!  These are next to the unit. However there are only 5, and being their are 10 CVICU patient rooms, it means not everyone gets a room.  Another thing was that there is a couch/bed in the room.  So I can sleep in the room with Shea.  Also they do multidisciplinary rounds.  Which means not only will all the drs and nurses be there but also the social worker and anyone else we need.  We are also encouraged to listen at the door and write down our questions to ask at the end of all their reports.  Being a part of our son's care is super important and hopefully we will feel prepared as we can be.  The plan is to be moved to the CVICU a day before surgery.  After the surgery and once Shea is stable and not in need of an "ICU" room we will head to Progressive Care.

Progressive Care unit looked similar to CVICU.  Individual rooms, with couch to sleep on! The room my also be big enough to keep a regular bed in the room as well as Shea's crib.  Which means two adult sleeping areas.:)  Our whole experience will last us about 3-5 weeks in the hospital.  The majority probably being in this kind of room.  We are hanging out while Shea is eating and growing.  We want him to be a seriously hungry boy!  50% of babies have to go home with a feeding tube, and while I will do everything that Shea needs, I really don't want that added to our plate.  

Some things that we learned while walking through the hallways, sitting down with people and having conversations (and that I did not know where to put in this blog)

• The BT shunt would be our first surgery-It's a $1 million surgery and is about 3-4 hours long NOT including pre and post op. So Shea will be gone for 7-9 hours, talk about the need for distraction!
• Since Shea will be hooked up to lots of different things, breastfeeding is going to be one of those things thats going to be hard to even attempt in the first couple of weeks. We will be doing lots of pumping so they can measure what he is taking in.  They tell me hospital pumps are the best....guess I will find out soon!
• The new head heart surgeon, Dr. Kirshbaum, will be starting April 1st.  So it is possible that he could operate, if Dr. Maxey is sick or on vacation.  We will have a consultation with him as soon as he gets here.  This momma needs to know who is doing open heart surgery on her baby!

Thank you readers, friends and families for continuing on this journey with us.  It sure has been full of ups and downs and we know that trend will continue.  We so appreciate all your messages, texts, and calls.  Just knowing you are out there helps us move forward! :)

New OB and new friends!

On Tuesday, Paul and I went to uptown to the CharlotteOBGYN practice and met my new OB, Dr. Wicker. This new practice is huge compared to my old one. They sent me back for a urine sample and I got lost! I had to ask another patient for help...hahaha. Once we finally got back to the room we talked with the nurse, filled out some papers and then got to meet Dr. Wicker. Paul and I both really liked him and what he had to say. He took his time with us, answering questions and asking some of his own. He as well, said we would see him and another Dr in the practice...but anyone could deliver us. At this point I'm okay with that. (I just want the best Dr's for Shea once he arrives!) I was also able to cancel my glucose test for Friday!  He said even if I had it now, I will need to redo it at 28 weeks...we are just going to do it at 28 weeks!:) Dr Wicker says I am a totally 'normal' pregnant woman, but because of Shea they put me on their high risk list. Which is great because we have a nurse coordinator, Kathy!  I've had several conversations with her already and I really like her!

So this week I spent a lot of time with various Dr's offices. I had an appointment scheduled for 2/1 and 2/5 (but that's the hundredth day of school!!)  After lots of calling the OB coordinator and pedatric cardiologist office, I finally got them both scheduled for 2/9. Whew!  Going to be a long morning for me,  maybe I can nap before tutoring!

Last night we were able to speak with one of Paul's best friends' brother and sister-in-law.  6 years ago they went thru something very similar to our situation. (Their daughter was diagnosed with pulmonary atresia)  The little girl is doing wonderful know and is on her way to being a prima ballarina! The parents were just amazing. The support, knowledge, questions and answers they were able to give us in that short amount of time, really helped both Paul and I realize a few things.

One of them being that yes our lives will change immediately when Shea arrives (as do every first time parents) but the way our lives change will be even more different. We are going to need to live in a bubble for the first few months, only a few people will be able to physically meet Shea. That is going to be super hard for us.  We have so many people who love this little kiddo, want to meet him, hold him, etc. And we just are going to have to say no and not be social. (Y'all please, please don't take it personal when we say no in the future.  Please remember we are doing it to keep Shea safe and healthy and out of the hospital as much as we can. We love you and know that you love our family and hope that you can try to understand why this is so important.)

Another thing the four of us talked about was how people can help. It's human nature to want to help someone they care about, trust me Paul and I know all about that.  Just take a look at our jobs :)  So while our bubble may be closed around Shea, I know for sure we will need our villages' help. How? Well I'm not sure yet. But I'm open to suggestions. Sign-up genius works great at school. So we could put the needs up there and people could sign up for it if they wanted too. But again what needs will we have...of course the normal first time parents ones: meals!! But other than that I am stumped. We have both been focusing so much on what we need to do right now for Shea, that we haven't looked into the coming home part. We need to start looking into that too because before we know it little man will be here!!

Thank you readers for all your sweet messages, notes and words of love. We know it was our choice to put our story out here, but it's been all of you who kept us going, giving your support and loving us through all of our ups and downs. And man there have been a lot haven't there?!?! I will continue to keep this blog posted as we continue our journey. And hopefully there will be no more secret posts!

December Doctor Appointments

December was filled with more appointments than I thought it would.

On Dec 8th I met with my regular ob for my monthly check up. Paul couldn't be there with me so I had my mom join me. (I've decided from now on, no appointment will be easy breezy)  My OB is wonderful and we talked about the diagnosis and what this meant from here on out. We also talked about the travel plans Paul and I had up to the north. She was really against me being in the car that long and then stress it would put on me and therefore Shea.  We went ahead and made an appointment for January for my glucose test, but with the knowledge that I would have to go to another OB at some point since she doesn't haven't privileges at CMC-Main  (which could be a possibility)

Dec 18th Paul and I met with the pediatric cardiologist with fetal specialty. We had an echo cardiogram that lasted forever!  Little man was so not cooperative! We were probably in there for an hour and half. About half way thru the tech took a break to talk to the doctor. I drank some water, relieved my bladder, and literally jiggled my tummy around trying to get Shea to change positions so we could get some images of his heart. When the tech came back, Shea had moved some and we got better images of his heart.

We officially do have the diagnosis of Tricuspid Atresia with VSD.  Here are some links you can follow if you want to learn more about this defect:

Mayo Clinic

CHOP

The VSD is actually a really good thing.  It means there is a hole in the heart between the right and left chambers of the heart. Without that hole the heart would be less than functional. And our hole is large, which is also good. It could mean that we will not need the first surgery at birth (BT shunt)  As the hole gets smaller and starts to close, that's when we will need surgery. No one can predict when that will be. It could be a few weeks after birth or we may not even need it at all. Shea may be old enough to have the Glenn.  It's safe to say, we have no idea when he will need surgery, and won't know until he arrives!

We met with cardiologist after the echo cardiogram. He was very impressed with the research we had done and the questions we had.  He also thought staying here in Charlotte was a very good possibility for us.  CMC-Main is where I would deliver and Levine's Children Hospital would be where Shea would chill out and have surgeries.  The head surgeon is leaving but the 2nd in command and the new one coming in apparently are amazing.  So much that our cardiologist said he would be 100% confident if it were his wife and son facing what we are.  What does that mean?  Now it means that Charlotte is back in the running for us.  We haven't made a decision yet, but we are willing to consider Charlotte now.  

(Side note: I have a college friend, who even though I haven't spoken with in years, that I reached out to immediately after our appointment. She is a child life specialist, has worked at CHOP and now works at Levine's.  After lots of conversation with her, we agreed that Charlotte could be a serious possibility for us. )

On December 28th Paul and I went back to the fetal/maternal doctor. We love this doctor and were looking forward to seeing sweet Shea on the ultrasound.  This was by far the best behaved Shea has been! The tech was able to get some great measurements.  We have some sweet pictures of his foot too! Paul said that the feet were the best he had ever seen. (this from the man who hates feet!)  We asked about a new OB and he recommended a practice that had been recommended to me by that college friend I mentioned earlier.  I shared my concerns about having to meet with all the doctors (its a large practice) and he said I would meet with just one doctor because our situation is special.  That definitely calmed my nerves some.  We will continue to see the fetal/maternal doctor every month.

Looking ahead to January we have a bunch of things happening!  We meet with my new OB this week. (I have come to the realization that I no longer care about who delivers my baby, just as long as Shea is taken care of right away.) I may or may not meet with my old OB to have my glucose test as well.  That will be up to our new OB.  (My guess is that he will have me cancel that appointment)  On January 14th we will get to go to Levine's and have a tour.  We also will be able to meet with some of the NICU team, neonatalogist and some other people too.  We also meet with the fetal/maternal doctor close to the end of the month.  (Whew!  Busy month ahead of us!)

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)