They finally came!

  I enrolled Mateo in a program a few months ago called Beads of Courage.  The purpose of this program is to support kids that are going through tough illnesses. It also gives them something tangible to show others the rough, and often, dangerous road they have travelled.  Basics of the program are this:  each procedure or "milestone" throughout each child's journey is represented by a certain bead.  There is something special about each bead, whether its the color, the shape or how it was made...one even glows in the dark!  A bead is presented to the child after each milestone.  These milestones can be anything from an overnight stay in the hospital, a blood draw, tests or scans, admission to the hospital, clinic visits or even "bigger" procedures like caths or surgeries. 
  I came across this program a few months ago and fell in love with it.  Many of our heart kids go through some tremendous pain and difficult procedures.  But so often, we are told that our kids don't "look sick" or "look normal".  And that's a great thing.  I want Mateo to look normal and to act like he's never seen the inside of a hospital.  But at the same time, I want what he goes through to be important.  And these beads give it meaning, validation...something tangible to show people "look what he's accomplished".  These are beads that he can take to school and show his friends or teachers or ANYone to say that he fought, he survived and he continues to thrive.  To LIVE.  Each bead IS a bead of courage.  Because truly our children are brave and many have looked in the face of death and beat the odds.  And this strand of beads recognizes that. 
  So when that USPS box arrived on our doorstep, I was excited to open it.  Mateo was too.  He was dancing in place as I cut across the tape that held it shut.  Once I opened it, I just let him go to town pulling out one envelope of beads after another. 
  Tonight we strung them together as a family.  While Mateo does a lot of the hard work, we're all in this journey together.  We grouped them all together by color and shape and let Mateo do the majority of the stringing.  He seemed to really enjoy it and had so much fun choosing which bead to use next.

We got to the end of one strand of string and had TONS of beads left to string.  That's when it dawned on me how many beads there actually were.  How many things Mateo had gone through and endured.  These beads only represented the first 3 years of his life and I started wondering how many more we were going to have to add. 

He has surgery coming up at the end of this month and that always tallys up quite a few.  And then there's the rest of his life.  Cardio appointments, tests, etc etc.  It made me a little sad looking at it all, but I didn't want to take away from what they really stood for....Mateo's bravery and what he fought for.  And he was SO happy to be doing this!  Aside from being very concentrated when he was actually putting a bead on the string, his smile was from ear to ear almost the entire time.  And for me, they represent that he is still here and still fighting.  We hope and pray for the best when it comes to our future, but he is here now and we are enjoying every minute.

Heart Bears and Updates

  I had my OB appointment today.  Things went well, aside from the waiting that goes with these appointments.  The doctor listened to all my concerns and addressed anything that might need to be taken care of.  He listened to the baby's heartbeat.  He seemed to listen to it forever and really be listening for...something....but he said everything sounded great when he was done.  He is a very optimistic doctor and left me feeling good and hopeful about everything that is to come. 
  I am supposed to be going in for a Level II Ultrasound within the next couple weeks.  That's when we'll take a closer look at the baby's heart and determine whether or not everything looks like it should.  I'm having mixed emotions about this because its right before Mateo's surgery.  If everything is good and healthy, then of course I want to know right away!  BUT....if there are problems, I'm not sure I want to know about it right before Mateo's surgery, when I need to be focusing on him and that procedure.  I guess we'll just deal with it how we always do....one step at a time.
  The doctor also said not to worry about the stress that is sure to come with Mateo's surgery, that the baby would be fine.  He really put my mind at ease about a lot of things, so I'm glad I went in to see him today.  I almost rescheduled the appointment this morning because I was not feeling very well and just wanted to stay home.
  When we got home, there was a package waiting for us at the door.  I ordered Mateo a Mended Heart Bear a week or so ago and it arrived today.

Its the cutest thing and SO soft.  It has a zipper on its chest (like Mateo's "zipper", which is what we call his scar from his last heart surgery).  When you unzip him there is a little, stitched up heart inside....just like Mateo's.

I plan to use this in a couple weeks to explain, in very simple and non-scary, terms what Mateo will be going through.  He already knows his heart has a "boo-boo" and needs to be fixed....so we'll see how well we can prepare him for this.  Now, I just need someone to prepare ME!

Long Update, sorry y'all!

Well, I know its been forever since my last entry.  However, I'm confident that most of you understand why I haven't exactly felt like writing for the last 4 months!
  To explain, in April Mel went to Panama City for 6 weeks for "work stuff", leaving Mateo and me at home.  I decided I didn't want to spend 6 weeks by myself so I took Mateo up to Wisconsin with me for a month long vacation of good ol' family time. I was excited to be able to be 'home' again for a nice long stay.  I always enjoy going home.  Its one of the most comforting places I know of....my happy place!
  Mateo had a grand time wrestling with his cousin Dawson, playing in huge mud puddles, celebrating his 3rd birthday, eating fresh cheese and just getting some fresh country air into his lungs!  He had animals galore to gawk at....kitties, chickens, a horse and dog...of course the dog was his favorite.  He would play fetch with Turbo for hours!  My dad was able to take Mateo on several tractor rides and he even got to help my mom in the garden a little bit...at least, as much as a 3 year old can help!
  Unfortunately, my time there wasn't as fun as Mateo's, although it did happen to be eventful.  I was sick for almost the entire month we were there.  I ended up with a head cold the first week, nausea the 2nd week and full on vomiting for the rest of the time we were there.  I spent my time glued to the couch with a bucket always within arms reach. 
  I realized after the 3rd day of not being able to keep anything in my stomach, that this was feeling all too familiar and I had my mom pick up a pregnancy test for me.  Sure enough, the result was positive.  Talk about a huge surprise!  The phone call I made to Mel that night was....interesting....to say the least.  I ended up having to cancel my flight back to Florida because there was no way I could maneuver the airport and a 3 hour flight, with Mateo, by myself while throwing up every half hour.  Mel ended up driving up from Florida to come get us and take us home.  It was a very long 3 day trip in the car from Wisconsin to Florida.  But we made it.
  Once I got home, I found out I was only about 8 weeks along.  At my first OB appointment, the doctor had me admitted to the hospital right away.  I had already lost a considerable amount of weight and was severely dehydrated.  Oh the memories.  It was like deja'vue.  I had gone through all of this with Mateo.  I had been so worried about having to deal with this a second time that Mel and I almost decided we were happy being just a family of three.  But EVERYONE I talked to said that every pregnancy is different....I probably wouldn't be sick at all, or at least not AS sick......blah blah blah.  Well, I guess we took a leap of faith and it didn't pan out the way I was hoping!  So, anyway, now you know where I've been...glued to my couch and waste basket.  But, I am finally through the absolute worst of this crazy morning sickness.  I have a little more energy and the vomiting has almost all but gone away.  I'm still not feeling like myself though.  And maybe I never will.  Maybe I'll have to find a new version of 'myself' and be okay with it.  Time will tell.  Right now, I have more important things to think about.  Bigger issues looming in the not-so-very distant future.
  Within the next 1-4 weeks, I'll be seeing the OB again for a level II ultrasound.  I'm not sure how I feel about it.  Excited?  Nervous?  Scared?  All of the above I guess.  While I want to know whether I'm having a boy or girl.....I am scared to find out about this baby's heart.  We've been told it would be like getting struck by lightening twice to have a second child with HLHS.  BUT....that doesn't exactly comfort me since we live in the lightening capital of the world....or at least the country.  I push a lot of the overwhelming parts of life to the back of my brain and let it sit there until I absolutely have to face it...so I've just been focusing on feeling better.  One day at a time, right?
  Then there's all of Mateo's medical issues that we've had to deal with and face in the last few weeks.  On July 12th, Mateo had his pre-Fontan heart catheterization.  NOT fun stuff.  We have been hospital-free for 3 years, so this was a shock to him.  He did great during admitting.  Even did great with getting the IV placed, thanks to something called Ativan, a drug that makes him a little...."loopy"....and relaxed.  He also did great through the procedure itself.  Basically, they sedate him, intubate him and then place a catheter through the main artery in his leg to his heart/lungs and do some "information collecting".  Mateo did great.  But it was the recovery part that was a nightmare. 
  We had to stay in the recovery unit for 6 hours post-cath to make sure he clotted off correctly and didn't develop a hematoma or other complications.  Mateo screamed and cried the entire 6 hours.  I felt like they were traumatizing him and I KNOW he thought they were torturing him.  He had no idea what was going on.  His throat was raw from the tube that had been stuck down it during the procedure, his groin was bruised and in pain, his head was reeling from the anesthesia....it was a total nightmare and he was in melt-down mode the entire time.  He did not stop crying until I picked him up to take him away from it all.  As soon as we got in the car, the tears stopped.  It is torture on a mother to see their child in that much pain and fear and not be able to do anything about it.  I was sick the whole time...just sick.  And angry.  And it placed a lot of fear in my heart for the upcoming surgery.  But again, that will be buried in the back of my brain until I have to face it.
Overall, the results from the cath were okay.  His pressures are a little on the high side.  But that could have been due to a couple of things.  First, the cardiologist had to coil off several large collaterals that had grown over the last few years.  Those collaterals may have been contributing to those higher pressures.  Second, Mateo has a narrow ASD that we've known about since his Glenn surgery.  It will need to be carved out and widened during his next surgery.  That "narrowness" causes things to back up a little bit and adds to the pressure in his lungs.  So, these are fixable issues.  However, they may still lead to a longer recovery period after the next surgery, causing some excess fluid that will need to be drained out post-surgery.
  A few days after the cath, we got to meet with the surgeon that will actually be performing Mateo's Fontan surgery.  This is the same surgeon that did Mateo's first two open heart surgeries.  He is an amazing man.  Dr. Quintessenza is a wonderful surgeon with one of the best bed-side manners I have ever seen in a doctor.  We hadn't seen him in three years...since Mateo's last surgery....but I immediately felt at-ease when he walked into the room.  He said that Mateo looks healthy and big and in perfect shape for the surgery.  He complimented us as parents and had nothing but good things to say.  He is extremely optimistic for the surgery and for Mateo's future.  These are all the reasons we are following him to a different hospital than where the first procedures took place.  I can change locations, but not surgeons.  I trust this man and feel confident that he will do his best.  At Mateo's last surgery, Dr. Q hugged me and told me not to worry.  That he was going to take care of Mateo and do the best that he possibly could.  It was very comforting, and I felt that comfort again just talking to him about the upcoming procedure.  God be with him!
  So Mateo's surgery is scheduled for August 31st.  We have to keep him fit and healthy until then and we're trying to stay positive.  Right now we are mentally sticking to facts, only facts: Mateo needs this surgery, its already scheduled, we've known this day was coming, etc.  The emotional aspect of this will hit my like a brick wall the week, day or hour that it all happens, but until then, its staying buried (except for those times when I can't sleep at 3am and I am wide awake with fear of unanswered questions, worries and "what-ifs"!).  So say a prayer for us.  We have a lot coming up and need as much help as possible.  Thanks for sticking with this blog.  This is a long entry since its been so long since the last one and so much has happened.  I'll try to stick with it for updates as best as I can.  Heart hugs to all!

The Latest News

Mateo saw the cardiologist today.  It was a scheduled appointment, nothing out of the ordinary for us.  He had the usual ECHO and EKG performed.  He is currently weighing in at 29 (almost 30) pounds and has grown to be nearly 39" (3 feet 3 inches!) tall!  He is going to be a very tall kid....definitely from MY side of the family (sorry Mel!).

Overall, the appointment went well.  His ECHO came out great.  His heart function is "great" and still has very minimal, nothing-to-worry-about, tricuspid valve leakage.  His blood pressure was beautiful.  BUT...if you know me, then you know that I am more of a "focus on the details" person, not so much a "big picture" person.  So, while the big picture is that he's doing great and fine.....there are a few smaller details that have drawn some concern.  There aren't any immediate dangers, but things to keep an eye on and, yes, things for me to stress over....because I'm a mom! 

So, the details.  Well, his O2 sats were running a little high.  They were at 88-90%.  I know that sounds good, but for his anatomy and his size, its a red flag.  What has happened, is that Mateo's body has developed something called "collaterals". 

Most in the heart world know what these are, but for those who do not know, I will explain (I was in the "don't know" category before Mateo was born!). 

Normal-heart people tend to have a blood oxygen saturation of 96%-100%.  Because of Mateo's anatomy, his blood oxygen sats have been running 78%-80%.  This means that his blood is not carrying as much oxygen to his body that a heart healthy person's blood does.  Some of his blood remains "un-oxygenated".  Still with me? 

 After a while, his body "realizes" its not getting the oxygen it thinks its needs, so its tries to "fix" the problem by growing extra blood vessels.  The body is thinking, "more blood vessels = more blood which SHOULD = more oxygen".  In theory, that would be correct.  But the body is too smart for its own good and has over thought and over-fixed the issue.  Now, because of collaterals, there is blood shunting to and from places that we don't want it to.  So the cardiologist has to go in, via heart catheterization, to close off (with coils) those extra blood vessels that the body decided to grow. 

This in and of itself isn't a huge issue because Mateo is in need of a pre-surgery heart cath anyway and she'll take care of all the extra collaterals then, if needed.

Also, Mateo's ASD continues to be a source of concern for Dr. Suh (Mateo's cardiologist).  ASD stands for "atrial-septum defect".  This is basically a hole in the wall that divides the left and right sides of his heart.  Right now, its "okay" because only part of his blood flows through that hole.  After his next surgery, ALL of his blood will flow through that hole, so it will need to be much bigger.  The plan is to have the surgeon carve out the ASD and make it bigger during his next surgery.

SO...here's our plan.  I want to spend some time with my family in Wisconsin soon.  Instead of taking care of the collaterals (extra blood vessels) NOW, we will wait.  Dr. Suh's logic is that his O2 sats are currently almost 90% ....which really isn't an immediate danger thing.  But since we're flying, she worries about closing them before then.  If she closes those collaterals now, then that will cause his O2 sats to fall....probably closer to 75-80%. This makes Mateo more cyanotic and he will look "blue" because there won't be as much oxygen in his blood.  Then if we fly, even though the cabin is pressurized, the O2 in the airplane isn't the same as the O2 on the ground and that could make his O2 sats go even lower.  So she feels its best to wait til after our trip sometime to close off those collaterals.  Remember, lower O2 sats means the body isn't receiving optimal amount of oxygen....this includes the brain!  Too low of O2 sats for a too long period of time can cause brain damage.

She's also on vacation sometime coming up.  So factoring everything in, we have decided to see her again on June 6th.  This appointment will be a pre-catheteriztion work-up.  She is expecting it to be an out-patient procedure where Mateo can most likely go home the same night that the cath is performed.

After reviewing the results from the cath, she is going to present it to the "board of surgeons" or whatever they call themselves.  They will decide a surgery "plan" from there.  Mateo WILL be having his 3rd open heart surgery, called the extra-cardiac Fontan, in June.  No more pushing it back.  That's when it WILL be. 

So prayers are appreciated.  I know many of you are praying daily for Mateo already as well as for Mel and me.  We appreciate it so much.  There have been very difficult moments and extremely happy ones as well.  We have a hard summer ahead of us, but I have faith that we'll make it though.

Walking for a cause

On November 6th, we will be gathering with friends and family at Raymond James Stadium to raise funds for reasearch on heart disease and stroke.  Of course, our personal cause is to raise awareness for congenital heart defects.  1 out of 100 babies are born with a heart defect.....that means 10% of babies are born with a heart defect. Doesn't that seem like a lot?  Mateo was born with the most severe of all heart defects.  He has 1/2  a working heart.  I've heard that out of all heart defects, only 4% are HLHS.  What odds.  But it seems that the longer I am involved with our HLHS support group, more and more and more moms and dads are added to the group daily.  Why are so many babies being affected with this?

This will be our 3rd heartwalk.  It seems that every year we participate our team gets bigger.  I'm very thankful for that because it means more people are being made aware of what Hypoplastic Left Heart Syndrome is.  More people are aware that this is real and it severely affects lives.  And more people are aware that there is no cure for this and nothing we know of that can prevent it...because no one even knows what causes it! 

So, we'll walk again this year, raising money and awareness.  If you want to help us spread the word on awareness, your job is easy.  There's a lot of things you can do.  You can visit www.tampabayheartwalk.kintera.org/curechd and join our team.  Come out and walk with us.  We're meeting at Raymond James Stadium at 8am for the 3 mile walk.  If you let me know your shirt size, I'll have a tshirt made for you.  If walking isn't "your thing", than visit www.tampabayheartwalk.kintera.org/masher and support us with a small donation.  To spread more awareness, get educated yourself and let people know about congential heart defects.  You can visit http://www.mattersoftheheart-online.com and print out brochures to give to friends and family to let them know all about CHDs.  Mateo was 1 in 100. Help us prevent that for someone else.

A Poem by another Heart mom that describes it all...

I don't know who wrote this, but its beautiful to me because it describes EVERYTHING we have gone through. Its amazing that I can relate to each and every line of this poem and it speaks directly to my heart and for my heart. It describes everything perfectly...the trials we went through in the beginning of this journey: the worry, the uncertainty, the fear and the self doubt. All the physical things we go through on a daily basis like giving boat loads of meds, checking for blue fingers and lips, making sure they're breathing right while sleeping, CONSTANTLY calling the pediatrician's and cardiologist's office and that horrible feeding tube!!......and then the surgeries and hospitalizations and all the feelings that those bring out....and the positive things:  the friends we've made through this that share our thoughts and emotions.....and the hope and trust and confidence we have now. Its all exposed in this simple poem. It amazes me every time I read it, so I'm sure this won't be the last time I share it.


You passed me in the shopping mall,

(You read my faded tee)
You tapped me on the shoulder...
Then asked, "What's a CHD?"

I could quote terminology......
There's stats that I could give...
But I would rather share with you...
A mother's perspective.

What is it like to have a child with a CHD?

It's Lasix,aspirin,Captopril....
It's wondering...Lord what's your will?...
It's monitors and oxygen tanks...
It's a constant reminder...to always give thanks...
It's feeding tubes, calories, needed weight gain...
It's the drama of eating...and yes it's insane!

It's the first time I held him...(I'd waited so long)
It's knowing that I need...to help him grow strong...
It's making a hospital...home for awhile...
It's seeing my reward...in every smile.

It's checking his sats...as the feeding pump's beeping...
It's knowing that there... is just no time for sleeping...
It's heart caths, x-rays and boo boos to kiss...
It's normalcy...I sometimes miss...

It's asking...do his nails look blue?
It's cringing inside... at what he's been through.
It's dozens of calls to his pediatrician...
(He knows me by name...I'm a mom on a mission)

It's winter's homebound...and hand sanitizer...
It's knowing this journey...has made me much wiser.
It's watching him sleeping...his breathing is steady...
It's surgery day...and I'll never be ready.
It's handing him over...( I'm still not prepared...)
It's knowing that his heart... must be repaired...
It's waiting for news...on that long stressful day...
It's ...praying...it's hoping...that he'll be okay.

It's the wonderful friends... with whom I've connected...
It's the bond that we share...it was so unexpected...
It's that long faded scar... down my child's small chest...
It's touching it gently...and knowing we're blessed...

It's watching him chasing...a small butterfly...
It's the moment I realized...I've stopped asking..."why?"
It's the snowflakes that fall...on a cold winter's day...
(They remind me of those...who aren't with us today)
It's a brave little boy...who loved Thomas the train...
Or a special heart bear...or a frog in the rain....
It's the need to remember...we are all in this plight....
It's their lives that remind us... we still need to fight!

It's in pushing ahead amidst every sorrow...
It is finding the strength to have hope for tomorrow.

And no...we'll never be the same...

It's changed our family...
This is what we face each day...
This is...a CHD

Fear is real

It has been a bad week. Too many losses in the heart community. It always seems to hit me so hard, rattling my teeth and shaking my bones. My heart breaks for each and every family that loses their loved one and I cling to Mateo even harder. There is so much deep-seated fear that comes out of its hiding place on days like this. All the worry and fear of losing Mateo too early comes bubbling to the top and is so crushing, I find it hard to breathe between the sobs. It takes time, but I finally get to a point where I can bury the fear again. But every time another CHD warrior loses their battle, the covers are ripped off my fear and it’s there…open, raw and naked….staring me in the face. And that seems to be happening a lot lately. Too often. I wish people didn’t have to face such tremendous pain. I wish there was no such thing as tears of sadness. That only happy tears existed. I know someday that will be true, but for now, it’s just very hard. I resent HLHS. I HATE HLHS and the extreme sadness and shambles that it leaves families in. The heart wrenching pain it causes people and those close to them.


Mateo is doing so well right now. In fact, we just saw his cardiologist for a check-up a few days ago. He got a glowing report and I basked in it all week. Every single person I have met that has been affected by a CHD…whether it’s a CHD warrior, a CHD warrior parent or the parent of a CHD angel…..has described this journey with HLHS as a rollercoaster. Every single one. And it’s true. The day we saw Mateo’s doctor was an absolute high. Mateo has great heart function. No valve leaking. Great O2 sats (for a heart baby) and good blood pressure. Then the days that the CHD community loses another warrior is an absolute low. And the difference from high to low is so swift, so fast, it catches me off-guard. And again I am forced to face Mateo’s real situation. The reality is, he has a heart defect and he could be gone at any moment. That thought numbs me to my bones. I know that none of us have any guarantees of making it until we’re 80 years old, but that fact is glaringly real when I think of our heart survivors. God tells us that our lives are nothing but a vapor…that we’re here for a short time and then we’re gone. But these babies, children and young adults are gone too soon. 20 years is not a vapor. It’s barely a whisper. A candle blown out too soon. I know these babies and children may be better off in heaven, than on earth struggling through life. I know that Mateo would be happy and whole in the lap of Jesus, but I would not be better off. So maybe this fear of loss is really selfishness in disguise. Or maybe its just part of being a mother. For now, all I can do is try to trust. Trust in God that He will do what is best for everyone. Trust that modern medicine will come up with something to save these precious loved ones. Trust that we will someday have long-term statistics for HLHS and know that our kids can have a future. And for now, I will try to cover up the fear with feel-good memories of Mateo’s last appointment. Stuff it down deep so its not staring me down. It’ll be there, whispering in my ear, but at least its just whispering and not screaming. With love comes fear. Because if you have fear, it means you have something to lose.