Mia Marrone Heart Foundation Pendant

Monday, January 13, 2014

I finally broke and felt defeated by HLHS Aug 2011 (Then & Now)

August 26, 2011 was the most difficult day in 2011! We went to see the "highly respected" and "best cardiologist in the area" - according to Kaiser.
We were hopeful that we would hear some good news…maybe...the left side had grown significantly, it wasn't HLHS it was "just" one of her valves.

The cardiologist was completely silent during the fetal echo. I wanted to ask him a million questions, but I wanted him to concentrate and be thorough. When he was done he asked if we had any questions. I had done a ton of research so we asked a lot of questions about the first surgery, (the Norwood) and about interstage. We asked if we should be prepared to bring our baby home on oxygen or a feeding tube. He kind of laughed at me and said "We aren't going to send you home with a fragile NICU baby." When we were about done asking questions the doctor began adding additional problems…Restricted Atrial Septum, Aortic Atresia, Mitral Atresia… giving us measurements of Cemaia's heart. The one measurement that stuck with me was the size of her aorta (0.8mm). I knew that sounded extremely tiny. Based on my research, I knew that the typical size of an aorta is 4mm and the "typical" HLHS aorta was 2mm. This was scary…I asked if there was a chance it would grow by the time she was born. He said that it wouldn't grow and that she wasn't getting any flow through her aorta. The only flow he saw was going backwards. This meant (according to him) that her aorta wasn't being used so eventually it would shrivel up and her heart would stop. 

Did we hear that right??? And then he said "YOUR BABY WILL NOT MAKE IT THROUGH THE PREGNANCY."

We were completely crushed. We didn't have any words, we just looked at each other ready to just fall apart. We asked if he thought there was ANY chance whatsoever that she would survive and he kind of laughed and said "Huh, well, I guess anything can happen." Then added that this is the worst, most severe case of HLHS he's ever seen so we should think about our options and prepare ourselves to say goodbye. He left the room to give us a minute to talk. We could barely look at each other and just cried. As I was sitting there I felt so devastated and then I just thought, 'he's wrong…He has no idea what he's talking about…This just isn't going to happen.' I was in denial yet again!
I elected to do the driving home because I knew I had to keep it together to drive…I didn't want to loose it until I got home. That drive home seemed to take forever!

When we arrived home I went straight to bed and just cried. I finally let myself break. I'd been holding it together for the last 10 days…trying to stay positive and hope and prayed for the best. I felt completely defeated. As if I was given a death sentence myself. 
I stayed in bed ALL DAY. I became even more obsessed with research. This time, rather than researching heart structures and surgeries I was on a mission to find other families who have children with the same condition. I needed some hope to hold onto.

I didn't find anything until I came across a blog about a little boy name Bowen. Bowen has HLHS and Bowen is alive!! I saw that his dad is the lead singer of Sanctus Real and I found the song that filled me with more hope than I thought possible. 'All of Me' It made me cry, but it filled me with peace, I felt strangely calm. I knew that I already loved Cemaia so much and that my love for her would grow each day. She is definitely worth "every fallen tear" and "worth facing any fear." She would have "all my love, even if it's not enough." and I will give her "All of me."

We've had a great month! We were able to stop one of Cemaia's diuretics (Aldactone) and she has handled being weaned down from her Lasix. In April of 2013 Cemaia was maxed out on her Lasix dosing, but still wasn't peeing very well. So far she is maintaining on nearly half the dose she was on previously and is peeing better than ever!
We are so proud of her.
This month Cemaia was able to visit the beach for the first time! She loved seeing all of the birds fly around, but wasn't too fond of the sand.

Cemaia has also been preparing for football season. She is ready to cheer on her team :)

Friday, September 6, 2013

Two Year HLHS Diagnosis Anniversary

Wow! August 19th 2011 was the day we were officially diagnosed with Cemaia's HLHS and I didn't even remember all day (until bedtime) I was dreading the month of August because I've been worried about how I'd feel when thinking about each of these difficult days. This month has been pretty good to us this year though!

Then: Aug 19, 2011
We had our 20 week ultrasound on Aug 16th. It was then that we were told that they couldn't see the left side of Cemaia's heart. I asked the doctor "is that even possible" - to be born without half of your heart. She said it's very rare but it does happen. "BUT do they survive???" is what I really wanted to know. Our OB couldn't give me any specifics…I had to wait. I would say that was the hardest week of my life, but a more difficult week would await us very soon. Wes took the rest of the week off from work to be home with me. I received a call the next day (a Wed) and I remember making up every reason why this wasn't true…Cemaia was in a difficult position, the ultrasound tech was just new, the machine must've been old and not working properly…" But the doctor kept repeating "this is very real" 
She set us up with an appointment for that Friday (Aug 19)
We were very hopeful that we would hear good news…It can't be as bad as my research would indicate it is. Maybe these doctors could tell me about great advancements that were taking place??
When we first arrived, we were greeted by an ultrasound tech and 2 doctors. One had a lot of info on HLHS, surgeries, statistics…and was quick to discuss our "options" while the other doctor seemed afraid to give us the exact HLHS diagnosis. It was as if he just didn't want to be the one to give us such a devastating diagnosis.

While the first doctor continued to explain why termination would be "the best" option...For us, there was only ONE option…continue with the pregnancy and continue to show Cemaia just how LOVED she is and how much she is WANTED.

Now: Aug 19, 2013

Cemaia and I enjoyed the day together while daddy was at work. She played in her playroom and we worked on strength building exercises. She has been making a lot of progress and is gaining more confidence. When Wes got home we took Cemaia to see the neighborhood cows and horses. She asks to see them all day! It wasn't until bedtime that I realized that 2 years ago today was our official diagnosis day. I had thought about it all month in July, but we just lived life and had fun. I never thought that I'd be able to forget about these type of milestone days...at least not this soon.

As you can see by Cemaia's face...the cows were smelly :)


Cemaia was born in December of 2011 with Hypoplastic Left Heart Syndrome. She also had a Restricted Atrial Septum, Aortic Atresia and Mitral Atresia. Her aorta was severely hypoplasic, measuring at .8mm

Cemaia is now 20 months old!

I know how important it is for newly diagnosed HLHS families to find stories that give them hope for their new little baby. I searched the internet for hours when I was pregnant and first diagnosed with Cemaia's special heart. Our doctors were very negative about her diagnosis and encouraged termination. I found scary statistics online and reading about the Norwood procedure made me nauseated. I tried so hard to find other children with HLHS who were thriving. I needed some hope to hold on to. So I'm hoping by getting back to writing in our blog we can bring hope to some families.

I've been disappointed that I haven't kept up on the blog because I would really like for Cemaia to be able to read through it someday like a journal. So my goal is to write 'Then and Now' blogs. It has been 2 years since we learned that we would become Heart Parents. So I would like to take you all through our journey and blog about what was happening during the scariest time in our lives (pregnancy, surgeries, hospital admissions, interstage…) while also celebrating where we are today. 

Thank you for following our little girl's journey! 

Friday, December 14, 2012

It's been a LONG year, but is't been worth every second!

Hey!  We're back!  Sooo sorry that we haven't been updating this blog like I've said we would over and over again.  I'm lazy.....what else can I say?  ha ha.  As we sat here watching the horror on TV in disbelief of the evil of one man I look at my daughter and start to reflect on the incredible year we have gone through and how incredibly blessed we are to be spending our first Christmas and her first birthday with her.  It's hard to believe that a year ago this month we were going to the McDonald house awaiting a life that scared the hell out of us because we didn't know if we would get to enjoy or even experience it.  With a few bags packed, a computer, my wife at my side and my daughter in her belly we walked through those doors with no idea what was going to happen next. That Christmas was the most incredible I have ever experienced!  I have never been around such generosity and selflessness in my life.  The people we met and the staff that works there will always have a place in our hearts and we will NEVER forget the time we spent there.  From the moment my daughter was born until this very second she has consumed every aspect of our lives and we wouldn't have it any other way.  She has shown us how strong she can be through two open heart surgeries, how smart she is, learning EVERYTHING that momma challenges her with from body parts to sharing to animals and their sounds! (I'll post those videos too!)  and how loving she is to her parents.......she's sooo sweet!  I've also watched my beautiful wife struggle against stubborn cardiologists, rough nurses, hard headed family members, and watching her daughter deal with everything and after all of it she still has tons of smiles and love for her daughter and makes everyday wonderful for her!  You can see her wonderful dedicated work in our daughters smile...and she smiles ALL the time!  I can't say enough how much respect I have for my wife and how much more I love her each day!  She is the strongest woman I have ever met and I know in my heart I get my strength from her,  without her I know I would just fall apart!  Since our last post many things have happened and Cemaia just keeps getting bigger and stronger!  I just can't keep up with everything she can do and everything she has accomplished.  We are going to try and go through our notes and do a more specific year in review for you....I know I know......"you've said that before."  Can't say trust me we will, but trust me we will this time lol.  I guess the most recent things that have happened for our family started in November when we all got sick, that was horrible.  I never thought that we could have caught such a nasty virus at a pediatricians office,  what we took away from that little stunt was next time we don't like something SPEAK UP!  We can never be too careful when it comes to her health!  Although Cemaia got over it like the super warrior that she is, it never should have happened in the first place.  Since then momma has been working with her like you would not believe and Cemaia now knows a lot of her body parts,  she can pick up certain animals when you call them out, and just to show off she can pick them out by the sounds they make.  Yes  we have videos of her doing all these thing in case you might have some doubts, and yes, she's only 11 months old!  BOO YA!!  Also we have had a series of good cardio appointments and so far her heart seems to be doing well and getting stronger.  We have started the process of getting some second opinions from CHOP and Boston Children's Hospital.  We look forward to what they have to say, we'll keep you posted!  This year has been the longest, scariest, most wonderful year of my life! We can't wait to enjoy Christmas with our beautiful, strong, exceptionally smart heart warrior princess, and then just a few days later our special gift turns one!  Good times!

Sunday, July 29, 2012

Cemaia's Glenn

We made this video right after her Glenn.  I heard this song the night before her Glenn and I had to make a trip to target.  It seems that I was really stressing about everything and when I got back into the car as soon as I turned the key this was on the radio.  I only caught the end of the chorus but when I did it really spoke to me.  As soon as I got back to Lisa I found the song and played it for her, she loved it too.  It's true that when you need it most God will send you a message if you are open to hear it.

Saturday, July 28, 2012

Cemaia At Home!

Well I know it has been forever since we have given any attention to this page and we are very sorry. Since the last time Cemaia has had her Glenn and it's been about 4 months since.  She is doing well, although there have been a few scares along the way. I hope you enjoy the video and we will definitely make a stronger effort to keep this page updated.  Thanks again for all the support from those who have given it....you know who you are! We are also publishing this to YouTube so you can see it on your phone if you can't see it here!

Wednesday, May 30, 2012

Cemaia's Glenn Video Round 2

Sorry I have been lazy posting what is going on with our little warrior lately, well through the last 5 months to be exact. Here is a little video Lisa made to show how well Cemaia did through this round. To date our little one continues to amaze us and is doing quite well, although she is teething at the moment she is otherwise a very smart, strong, and extremely happy baby and we feel very blessed to have her in our lives!