5 1/2 Hour Heart Cath

We are home now. Thank God it was only an overnight hospital stay. I anticipate it to be a 24 hour stay, but you never now, so I also plan for a more than 2 day stay.

Well, the cath itself took a lot longer than I thought. A LOT longer than I thought. I was anticipating 4 hours. But secretly I was thinking it would take 3 or 3 1/2. So when it took 5 1/2 hours, I was starting to worry that something was wrong. The hospital kept calling me every hour to update me. But mostly it was an "Everything is okay, we're just checking her pressures".... then "Everything's okay, we're just sizing the stent".... then "Everything's okay, we're just running some tests".... So hour after hour after hour, I was thinking, ~everything's okay~, because that's what they kept assuring me.

Well.... little did I know that what *actually* happened was that the camera (that is permanently affixed to the floor in the room) that they use in the cath lab BROKE!.... and they had to call the repair man... and then they immediately called another hospital unit that has a mobile (portable) camera that does nearly the same thing as the "real" camera. It is a high-tech camera that they were able to use to complete Scarlett's cath. THANK GOD!

Because Dr. Pophal did not want to have her come out of anesthesia and cancel the procedure all together. So, (thank goodness), instead, he kept her sedated, with the camera/tube in her groin artery, and waited for the portable camera to arrive. Which took about an hour. I am actually G L A D they didn't tell me this, because I would have been flipping out with worry that my baby was under anesthesia for nothing!

In the end, Dr. P was able to do what he needed to do, and he had awesome results. Sometimes, it's almost child-like (in a good way), how Dr. P gets when he gets giddy/excited about great news in the cath lab. Well, this was one of those moments. When Dr. P saw the results of the echo that they did this morning, he was all but jumping up and down and said "This is exactly what I wanted to see!".

She looks miserable in this pic, but she was actually IV free and doing great.

So, before the cath, the pressure on her right ventricle was at 80%...this is bad. It should be around 20-25%. So, this was considered moderate to severe. After the cath it is now at 40% (HALF!!). Also, the left pulmonary artery was at about 2.5mm before the stent, and after the stent it is now at 7mm. Which means that the bloodflow to the left lung (which was at 28% before) has gone up too. We can't quantify/measure it yet, because that would require a lung perfusion study (which means more anesthesia)..., so that might be next on the horizon. But for right now, she's doing great and thank God we're home.

Thank you everyone for your well wishes, support and prayers. Especially Lou, Susan, Linda, Morrine, Mindy, Jolene, and Cherie. Thank you cousin Luke for watching Violet, auntie Melissa for taking Violet to school, and grandma Elva and Elsa for lighting candles and saying rosarys for my baby Scarlett.

Cardiac Catheterization No. 3

I write this post from the PCTICU of St. Joseph's Hospital and Medical Center in Phoenix Arizona. My not-quite-2-year-old daughter has been in the 'cath lab' for the past 3 1/2 hours. We held her hand while they put her under anesthesia around 9:20am this morning.  I was right there with her this time. Ususally it is just Todd, but this morning, I was there too.

This is the second time I've held her hand while they put her under and it never gets easier. Watching your baby struggle then slowly (or quickly) watching them fade away into a sleepy dreamland.  Todd and I both walked away choking back tears.

She is in the cath lab today because at her last cardiologist appointment, Dr. Pophal and Beth said that the blood flow to her left pulmonary artery was at 30% and the bloodflow to her right pulmonary artery is 70% (when it should be 50% and 50%). 

Last June Dr. Pophal took her to the cath lab to balloon angioplastly her LPA to help this exact same problem, and it temporarily helped, but over time it has shrunk right back down to where it was before the procedure. So, today, Dr. Popal is going to implant a stent into her LPA to keep it open. She's been in there for four hours now. I hope that everything is okay. I will post more when I know more.

CHD Awareness Week 2011

Today is February 7th, and that means it is the first day of "Congenital Heart Defect Awareness Week". Which  means that I will be doing my part to help spread awareness and be an advocate for my daughter, a CHD survivor. (more than I ordinarily do, of course!)

This past summer I bought some t-shirts online from cafepress.com, One says: "I'm a heart surgery survivor" and the other says: "My sister is a survivor". Scarlett also has another onesie that says "I'm beating Congenital Heart Disease". They were kinda pricey, but they worth every penny, because I love putting them in their CHD Awareness t-shirts. Last Saturday I took them to the zoo and they proudly wore their t-shirts.

These pictures were taken by zoo photographers that are available to snap a shot as soon as you enter the zoo.

Several weeks ago, I wrote (emailed) Arizona's governor Jan Brewer and asked her to proclaim February 7-14 as CONGENITAL HEART DEFECT AWARENESS WEEK in the great state of Arizona. There is a proclamation form that you can fill out online. I did this at the suggestion of the Congenital Heart Information Network. and to my delight, it (the proclamation) was received and approved. Not only that, but I also heard that I am not the only heartmom to make such a request. I was told by the governor's staff that I was one of at least 6 other people who submitted this request.  I believe that it's been done for at least the last 4 years. Awesome!



Don't now if you watched the Superbowl yesterday, but if you did, then maybe you saw the commercial with the little kid Darth Vader. In case you missed it, here it is:

Well, I just learned today that the little boy that portrays Darth Vader was born with Tetralogy of Fallot and also has a pacemaker! He is 6-years-old and lives in California. His name is Max Page. Here is a news story they did about him on the Today show this morning:

How awesome is that to kick off CHD Awareness Week?? :  )



Well, tomorrow is Scarlett's cardiac catheterization. I'll be blogging from the pediatric cardiothorascic Intensive Care Unit of St. Joseph's Hospital (during CHD Awareness Week). I will post more about CHDs, and more about how Scarlett's heart cath goes tomorrow. Until then, please do you part and help me spread awareness about America's #1 birth defect. Thanks!

Jakey's Blankies

This is a picture of a "girl" version of Jakey's Blankies.

This is Scarlett holding her ultra soft minky "Jakey Blankie".

This is another picture of the blaket. One side has soft animal print, and the other side has plush pink flowers.

Jake Alan Dennison 1/21/2009 - 2/9/2011

Born with Hypoplastic Left Heart Syndrome [HLHS] 

(the most severe Congenital Heart Defect)

Yesterday was the 2 year anniversary of my heartmom friend Liz's son Jake's birthday. He was born January 21, 2009 (one month before Scarlett). He was also born with a severe congenital heart defect (just like Scarlett). Jake fought for his life for 19 days and lost his battle with HLHS on February 9, 2009  [eight days before Scarlett was born].

In Jake's honor and memory, Liz and her family started a heartfelt campaign to leave a legacy for Jake. She and her legion of supporters began to create and sew soft blankets to donate to the babies in the PCTICU of St. Joseph's Hospital in Phoenix suffering from congenital heart defects and undergoing open heart surgery (sometimes multiple heart surgeries).

Click on Jakey's Blankies link

I

Please, if you have a few extra dollars to donate to Liz in honor of Jake for Jakey's Blankies, you can connect to Liz's blog here: http://tylerelizabethdennison.blogspot.com/  you can also click on "Angel Jake" on the right side of this blog under Heart Friends. Or click on Jake's link under his picture above this paragraph. The campaign only for 19 days.... The 19 days of Jake's life (January 21 - February 9).

Also if you are another heartmom whose CHD baby was the recipient of a Jakey Blankey, please post a picture of your heartbaby with the blanket and post it on your blog and also on facebook. just like I did. Thank you. : )

CT Scan Results



Scarlett had a CT scan performed on January 5th. They did a cardiac CT scan that included a lung perfusion study to determine the bloodflow from each pulmonary artery to the lungs. She did extremely well. No vomiting, no oxygen, no adverse reaction, no emergency room visits that night. I say that because of the horrible experience we had with her MRI back in August 2010. And her last CT scan had her discharged on supplemental oxygen. But this time she was a champ. That's my girl!

She had a follow-up cardiologist appointment a week later with Beth and Dr. Pophal on January 13th, where we got the results from the CT scan. I was sitting at my desk at work that morning reading over a piece of paper I had scribbled some notes on back in August the day of her botched MRI. The paper said that the cardiologists will be checking her weight for steady (though gradual) growth, monthly echos, likely a CT scan in the next 6 months with lung perfusion study, and possible cath if no improvement.

It was kind of a coincidence that I found and read that note on that particular morning. Because when I re-read it, I realized that that team of docs really knows what they're talking about... meaning, so far everything they've told me has basically come to pass. So when we took Scarlett in for the echo and clinic appt last Thursday I was sort of expecting them to say that she needs another cardiac catheterization....  and my expectations were met.

The CT scan revealed that the bloodflow to the LPA (left pulmonary artery) was at 27%, and anything below 30% is considered problematic (concerning). So what they want to do is take her to the "cath lab" and balloon angioplasty her LPA, just like they did 8 months ago, except this time they will also insert a stent to keep that artery open.

Normally, I probably would've started crying my little eyeballs off, but since I had just read that note I jotted down in August, I was anticipating this news. So instead of getting depressed and scared, I was very stoic and asked when they had to do this? Beth and Dr. Pophal said in the next month. And I said: as long as she's not in there for her birthday, I'm fine!

So, right now I'm waiting to hear back from Juanita (the surgery scheduler) to schedule her cath. I still haven't cried yet, but it will probably hit me later and I'll probably fall to pieces just like I always do whenever we have to put Scarlett under anesthesia.

Relief

19 pounds, 7 ounces, and no foreseeable surgeries for ~maybe~ up to a year!


I took Scarlett to the cardiologist today for an echocardiogram and a clinic appointment. It was such a great visit! I feel like the weight of the world has been lifted from my shoulders. For the last 7 months, I've been stressed, tearful off-and-on and practically in a depression regarding Scarlett's leaky heart valve (that Dr. Pophal told me was regurgitating after a mere 7 months after her last major open-heart surgery).

As you all know, I was told all along that Scarlett will need multiple open heart surgeries throughout her life to replace the pulmonary artery/valve that never formed in utero. I was also told that the way that they know that its time for her next surgery is that her valve will “spring a leak”. BUT TODAY I was told differently.

But allow me to digress about the constant fear, heartache, and stress I’ve been in ever since May this year. Ever since May, I've gone to bed with tears in my eyes thinking about Scarlett's future. I freak out at the slightest signs of illness thinking to myself "is she in heart failure??". We've gone through a heart cath (June) and a botched MRI (August) and at least 8 echos/clinic appointments just to keep a mindful watch on her Left Pulmonary Artery (LPA) and the pressure on her right ventricle (RV). So basically once a month, I have to take her in for echos and doc appts.

And let me tell you…. ECHOS SUCK!! Scarlett H A T E S them.

She cries, and cries, and cries. She struggles, and whimpers and just plain hates being prodded with the ultrasound probe. Plus, some ultrasound techs are better than others. I happen to LOVE Gary, and I won’t say anything *bad* about the other u/s techs, but let’s just say I make it a point to ask specifically for Gary.

Well, guess what-- Gary wasn’t there today… or the last time. Which makes my clinic appointments that much more stressful. Luckily today “Christopher” did a good job. And Scarlett did a great job as well. She was mostly accommodating and calm throughout the 40 minute procedure (ultrasound of her heart). [thank God!] She only got upset for the last 10 minutes or so.

I of course just have to look at the ultrasound screen of her tiny beating heart, and I get tears in my eyes. I hope and pray that it hasn’t gotten worse. I look at the red and blue blotches of bloodflow on the ultrasound monitor and I swallow the huge lump in my throat and wipe away the tears streaming down my cheeks as I wish that she didn’t have to go through this every single month. I just hope and hope that the leak hasn’t gotten worse and that she has more time before they cut her open again.

Well, my prayers worked. Everyone’s positive energy and thoughtful prayers worked. Beth (Scarlett’s cardiologist/nurse practitioner) said that the leak looks the same. Meaning: status quo. WOO HOO!. Yes! Thank God! Thank you, thank you, thank you!

Beth said that the leak is still moderate or even mild at this point and that the pressure on her right ventricle is the same. No change. (yessss!) This is so nice to hear. But she also said she wants to do a CT scan/lung perfusion study next month to get a better idea about the LPA regurgitation and the RV pressure. So we’re gonna schedule that procedure soon. Then came the best news of all…. (even though it is nothing “new”… it’s just new to me).

So Beth was patiently explaining Scarlett’s anatomy to Todd and me. She was showing us on the little plastic model of the human heart that they have in all their exam rooms. She was explaining what was happening (even tho we’ve heard it all before, it’s nice to hear again when our heads are clear), and what needs to be done about her leak, and what causes her leak and her pressure on her RV. Then she said it. “people with her defect will *always* have leaks and if anyone tells you differently they’re full of it”.


Whoa…

Repeat that last part. Yes, people with TOF/PA will ~always~ have a leak… it just depends on how bad of a leak it is.

Really?

I said “Why the hell didn’t someone tell me that TWO YEARS AGO!?~!” I said 2 years ago (November 18, 2010) when Dr. Alboliras and Dr. Nigro told me about her heart defect, they said that her homograft will start to leak and that’s how we know when it’s time (or near time) for her next surgery. So for the last 24 months, that’s what I’ve understood. That’s why I’ve been so upset/depressed/stressed/anxious, etc…

When she said that “she will always have a leak”, I felt a huge sigh of RELIEF. I thought She’s gonna be okay, stop stressing. Then Todd said “So, looks like she won’t be having surgery in February?”, and Beth says “Who told you that?!”, and we both say in unison: “Dr. Pophal”.. and she says “When did he tell you that?”, and we say “in August, he said: ‘she has at least another 6 months before we consider surgery’” So it’s been burned in our brains that she will have her next surgery in the first quarter of 2011.

NOT ANYMORE!!

The angioplasty that Dr. Pophal performed in June is helping! The Digoxin is helping! The leak is still there, the pressure is still there, but it is manageable. She is not in immediate danger. Beth said that the CT scan in January will give them a better idea of what the echocardiograms can’t. She said the way she is going now, she doesn’t see surgery in Scarlett’s future for at least another year (up to a year).

Todd and I were sooooooo relieved. You should literally feel the stress lifting from our shoulders as we were finally able to relax and breathe for the first time since we heard the word “leak” in May of this year.

So, I am happy to report that Scarlett is doing fantastic.

She is gradually gaining weight, still on her growth curve of negative 3rd percentile (not quite on the growth charts yet). She’s comfortably wearing size 12 months clothes and size 5 shoe. She nibbles on everything, but isn’t a huge eater, but neither is her sister. Still in a backwards facing carseat, but she doesn't seem to mind it since she has this adorable pink doggie mirror she can look into, thanks to one of my co-workers (Thanks Roxanne!)

 She is a happy, -healthy-, toddler who is learning new words everyday. She can now say “Thank”, for “thank you”, and “shoe”, and ‘I-don’t-want-it”, but it sounds like “I-doh-wanna!!” Her new favorite word is “NO!”, and of course “MINE!” But through it all, she is still the calmest, quietest, nicest, happy little baby that there ever was. Even tho her older sister is rubbing off on her and sometimes she gets a little attitude, she is still for the most part, just happy to be alive.

Today was a good day. I am going to bed thankful and happy.

2 Years Ago Today

I was sitting at my desk at work this morning, when I glanced over at the calendar and saw the date. November 18. It doesn't matter that it is November 18, 2010, because November 18th is all that matters.  November 18th. A day that will live in infamy. A date forever scarred in my heart, mind, memory and the day that changed my life forever. November 18, I get a lump in my throat and tears in my eyes just thinking about that horrible awful day.

What happened on November 18th?

It was a chilly autumn morning in Phoenix Arizona. Those days are usually hard to come by even by November 18th. I woke up, got dressed and headed for a fetal echocardiogram appointment that unfortunately for me, did not end how I thought it would.   I was so unsuspecting. I was so oblivious. I was so vulnerable. and I was so confident that nothing was going to go wrong. So sure of myself, that I went to the appointment all alone.

I thought to myself, everything is gonna be fine, they're finally gonna tell me once and for all that I'm just a worry-wart and my baby is fine. They're gonna tell me to stop worrying and stressing that something's wrong with my baby. They're gonna put all my suspicions to rest and everything is gonna be fine.

Boy was I wrong.

I arrived at the Scott and Laura Eller Congenital Heart Center in Phoenix Arizona at about 8:00 in the morning. First appointment of the day. I was bright eyes and busy tailed not knowing what the future held. I was 6 months pregnant and I had been diagnosed with a single umbilical artery. I had been told for approximately 2 months that everything looked fine. I was having the fetal echocardiogram done just so they could "shut me up". They were willing to do the echo based solely on the Single Umbilical Artery.

I should have known something was wrong when 4 differnt techs/docs/students came to assess the monitor on the ultrasound machine. Yet, I was still convinced that everything was okay with my baby. That I just needed to get this over with.  I was told the ultrasound would take an hour and a half. So I wasn't the least bit concerned when they popped in the DVD "Pirate's of the Carribbean". I watched 3/4ths of the movie before Dr. Alboliras walked in to complete the ultrasound.

I thought it was all routine. I thought nothing of the doctor being in the room. He asked me if anyone had told me that there was something wrong with my baby, and I answered him...no. He said "then why are you here today?", and I answered, "because I want to make doubly, triply sure that my baby's heart is okay because I have a single unbilical artery". He than asked "Are you alone today?", and I thought ~why the heck is he asking that question?~... and I answered "yes". I even breifly thought "WHY?... DO YOU HAVE BAD NEWS TO GIVE ME?", but I didn't voice that concern. I just said "Yeah", when he said "so there's no one  waiting for you in the lobby?"...so knowing I was all by myself, he just said "okay, we're done here, let's go into another room to go over the results"

I wiped the ultrasound goo off my pregnant belly. I grabbed my purse and coat, and walked into a consultation room around the corner. Then began the absolute worst experience ever. and I tear up just thinking about it and reliving it in my memory.

I took a seat. Dr. Alboliras told me "It's a good thing you came in today... because your baby has a complex congenital heart defect and will probably be born blue and will require surgery to allow blood to flow from her heart to her lungs".  I just sat there dumbfounded. Complete disbelief.  Huh? What did you just say?

Then he says how far along are you? and I say 26 weeks, and he says "yes, that's a little bit to far long to consider terminating the pregnancy"... and I'm a complete trainwreck. I was bawling my eyes out. Then I asked him to explain again what was wrong. I heard "big hole in her heart"... (in between Pulmonary Atresia, Tetralogy of Fallot, unoxygenated blood, blah, blah, blah...)... and I just fixated on "hole in the heart"... so between my tears, I said "This is common, right? This happens all the time?". and that's when my world came crashing down around me.  He says "No"...  

"This is extremely rare..."


and the rest is a black cloud blur of heartache, headache, and uncontrollable sobbing. All. Day. Long.

I couldn't even talk on the phone to tell Todd that something was wrong. I couldn't even get the words out I was crying so hard. I was absolutely devastated. I didn't even know that my nightmare was just beginning, and that it actually gets worse from here. I was just absolutely blown away by the news.... and I was all alone. No husband, no sister, no mother there to hug or console me. I was crazed with greif. I was hyperventilating. I was just so taken off guard. I never expected this to happen. I was unprepared.


Yes, November 18 is not a good day for me. It is a day that I look back on with sorrow. It was the day that mourned the loss of a healthy child. It was the day that I fantasized about a little baby, a little toddler, a little girl, a little teenager lying helpless in a hospital bed connected to tubes and wires fighting for her life. Alone and scared. Without her mommy. In pain. Suffering. Praying for survival. Praying for her heart.

I don't even know how I drove home that day. I cried for hours and hours. I don't think I ever stopped crying that day. It was just a complete blubber-fest.  I remember my best friend Kristy came over that night and hugged me and tried to make me feel better. I remember showing her the pictures that Dr. Alboliras drew for me. The picture of a normal heart, then the picture of Scarlett's heart.  I still have those pictures.

November 18. The day I guess I un-officially became a heartmom. A label I never thought I would embrace 2 years later. Yes, this is a day I will never forget as long as I live. I can't even go into that echocardiogram room without getting teary eyed. That's where my world came apart at the seams. That's where a team of 4 cardiologists diagnosed my baby in utero with a severe CHD. The sickest of the sick. The "high risk" CHDs.

 I can't belive how fast the time has flown. It's been two years already. But the pain associated with THAT DAY are still fresh in my mind as if it happened last week. I'm sure all heartmoms have similar stories and they may they also know the exact day that they found out about their child's heart defect. and the feeling of complete helplessness and hopelessness they felt at that precise moment. It is awful. You never forget.  Never.

So today I'm remembering 2 years ago. and I am thankful and grateful that I found out that day. I'm glad I knew what to expect. I'm glad I knew what I was in for. I'm glad that there was a team of doctors ready to care for Scarlett the moment she was born. I am humbled that modern medicine has allowed me to have that knowledge on November 18, 2008. Even tho I still consider it the worst day of my life. I am still grateful that I knew before she was born.