CHD Awareness Week

If you follow me on Facebook, you have been seeing my posts about CHD.  This week is all about bringing awareness to CHD.  Here are some interesting facts for you:

You may have also seen me requesting you to support Paul and I in wearing purple on Friday.Last night I requested that not only you were purple, but also take a selfie/groupie and send the to us!  We would love to see you and feature you on our blog.  Please join this event on Facebook! https://www.facebook.com/events/172132513142048/

Updates from the Dr's appointments

On 2/9, Paul and I met with lots of doctors!  I know it seems like we do this every month. Well....we kinda do, I try to schedule them all on the same day so we are only missing one day or work.  Thinking smart, aren't I??

First up was the glucose test with a side of an OB appointment.  The glucose test went fine.  I mean I actually enjoyed that orange stuff, it made me feel better too.  I am not one who can wait very long to eat.  So once I had the sugar in my system, I felt much better.  We met with our OB for normal check up.  He wasn't too happy with my weight gain, but I am still less than where I was pre-pregnancy. I also got that annoying Tdap shot (whooping cough) I went to get bloodwork and finger prick for the glucose test......I FAILED the glucose test :(  I cried.  Yup, I cried!  I mean, REALLY?!?! I spend 20 weeks basically eating nothing, the last 8 weeks eating somethings and the last 3-4 actually enjoying food again.  And now I am going to  have to spend the next 10 weeks eating limited things? (aka nothing, because most of the things on that diet are making me gag!) UUUGGGGGGG, just let me eat food!!

I had to pull myself together as we left CMC and went to Novant for our cardiologist appointment.  The good news is...there is nothing new to report.  Shea was wonderful in letting us get good images of his heart. As he grows, so does his heart.  We(the laymen) were able to understand more about his heart as the image is bigger and they are able to point out the different sections and parts, even the missing ones.  As you can see in the picture below our Tricuspid valve doesn't open and the Atrial septal and ventricular septal are actually good things...it keeps the flow going.

 We were able to ask questions and get clarifications of things.  We also had them burn a dvd for us...we are sending it to Boston Children's Hospital.  We are covering all our bases and making sure that there is no doubt in our minds that Charlotte is a good fit.  Big thanks goes to my momma for forming a relationship with one of the best dr's in the country who is going to take a look and give us a second opinion! Since Shea was so well behaved we weren't there very long...and it was time for lunch!!!

We found this cute little place called Just Fresh...it was super yummy and healthish...def will be going back!  We had some time to kill before our appointment at the NICU, so we decided to go check out the Ronald McDonald House.  Our amazing nurse navigator had already called ahead.  We knew that the house had been recently built, 2011, but it was in amazing shape!!  I mean its gorgeous!  The guest rooms are like hotel rooms, the kitchen...well I would love to have that kitchen myself and the library....oh so many cozy chairs and books to choose from.  I was hesitant about staying there, and not next to Shea every minute of every day....but realistically, I know I am going to need to sleep in a real bed, eat a real meal and see people not in scrubs...at least some of the time.  It will be a new kind of balancing act for sure.  

We then went to meet our nurse navigator and do our NICU tour.  Nothing too shocking.  I mean it is the NICU, so it's not a happy sunshiney place.  But neither Paul or I were surprised by anything.  Well maybe one thing....there was only one set of parents in there.  The nurse told us that many parents are at work, or are sleeping.  They come by when they can.  She even said some stop by after a night of clubbing....  Um, I guess thats one good thing about being "older" parents...we dont club...I mean we went out for my birthday in July...but that was it.  

All in all a good day for appointments....except that glucose test :(  I will be going back next week for the three hour glucose test.  Hopefully I pass that one!

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!)