This is a blog for my daughter Scarlett. She was born with a complex congenital heart defect known as Tetralogy of Fallot with Pulmonary Atresia. She is my little hero.

Thursday, December 9, 2010

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.

Thursday, November 18, 2010

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.

Wednesday, October 20, 2010

"Off Road"


Todd took the girls to the zoo on Monday. Some of the paths are paved, and some aren't. When he took the stroller off the paved path, he would say "Off Road!", to which Scarlett would reply "Ahhf Roh", which sounded extremely smilar to Off Road.

Last week, I was taking her picture and I was saying "Cheese!" as I pointed the camera at her, and she said "Cheese!".  Also last week, my mom was at my house and kept telling her "say grandma, say grandma", and Scarlett said "Grah-mah...grah-mah"  She's definitely repeating words and sounding more and more like a talking little toddler everyday. She can also say please, or her version of please which sounds like "peez".

It is absolutely precious how she wants to mimic and repeat everything she hears. I had to post about it. Todd said when they were at the zoo, he was acting like a monkey and making monkey noises, and Scarlett was right there making monkey noises with him and Violet. (I was at work and didn't get to go to the zoo with them).

I swear if you didn't know better, one would never know that she has a complex congenital heart defect. She is just a happy little carefree 1 1/2 year old.  Her next cardiologist appointment is scheduled for early December, which means she gets a 6 week break from echocardiograms. She does however still have to go the pediatrician for synagist shots because RSV season starts next month and she is still vulnerable to dire consequences if she contracts this disease (because of her leaky valve and the pressure on her right ventricle), so she has to go in for monthly RSV vaccination shots starting in November.

We have started her on Digoxin too. So far she gets .4ml twice a day. I don't know how much it's helping, but I'm hoping for some good weight gain in December... maybe we'll be having that 20lb pizza party?? Here's to wishful thinking!



Tuesday, October 12, 2010

One Year Ago Today

Today is the one-year anniversary of Scarlett’s second surgery.


One year ago today I handed my 7-month old daughter over to the surgical team at St. Joseph’s Hospital for a grueling, complicated, risky, complex and difficult 8 hour open-heart surgery.

I can hardly believe it’s been one year already. For someone who has a complex Congenital Heart Defect, and who’s endured 2 open-heart surgeries before age 1, Scarlett is doing fantastic. She is a happy, thriving, affectionate toddler who is closer and closer to talking everyday. I think she learns new words all the time, but I don’t understand her well enough to recognize that she’s saying “car” or “cat” or “ball”. She definitely has “baby” and “momma” down crystal clear.

Everything about Scarlett is petite. Her weight, her height, her smile, her giggle, even her temper. As any mom does, I am constantly comparing my daughters to each other. By the time Violet (my first born) was Scarlett’s age, she was the same size [evidentially I make small babies, heart condition or not], but she was 100% different…personality wise. At 18 months old, Violet was hyperactive, not only was she ultra energetic, but she was also exceptionally volatile: hitting, pinching, biting, kicking, throwing toys, slamming doors, and at a moments notice would pitch completely unpredictable temper tantrums that would make anyone want to reach for Jim Beam.

At the other end of the spectrum there’s Scarlett. Scarlett is calm. Happy. Affectionate. She is just the most quiet, tranquil, introverted, and peaceful little toddler’s you would ever meet. She has a normal/average amount of energy for a 19 month old especially when compared to her sister who runs around the kitchen island and jumps on furniture like she’s on speed.

Don’t get me wrong, Scarlett is enormously clingy and screams her little head off if anyone other than mommy or daddy try to hold her. She's been that way ever since the events of one year ago today.

One year ago today she was ripped from her safe and comfortable home to be thrown into an environment that was scary, awful, foreign and life altering. She was hurt. She was poked, proded, cut open and scarred for life literally and figuratively. She was never the same.

Before surgery (10-12-09), Scarlett didn't like binkys. After surgery she is a pacifer junkie. Everytime gets fussy, I pop a binky in her mouth and she's happy as a clam. She can't fall asleep without her binky. Everyone in my house knows that Scarlett loves her binkys.



 
She is also a cuddle bug. She loves hugging stuffed animals. Teddy Bears, kitty cats, even dolls she loves hugging and giving love to her dolls, she's super affectionate.
 
Before surgery, she was rather independent. As far as a 7 month old baby goes, but after surgery she suffered from separation anxiety...big time. She would fall to pieces if she wasn't in arms reach of Todd or me. and it is unheard of for anyone else to hold her. She wants her mommy and daddy. Only. It's ben one year already, and she is still shy of strangers (unlike her social butterfly 3 yr old sister). She has finally [after one year], let certain special people hold her like grandma or uncle Kevin, but for the most part, she only wants mommy, daddy or Aimee [her babysitter].
 
Yes, today is a milestone in Scarlett's book. She is doing well and thriving one year later. Notwithstanding the fact that she still has a moderate leak (regurgitation) in her homograft and now moderate pressure in her RV, she is alive and doing well. And one year later, I am grateful to the hospital staff at St. Joseph's for saving my baby's life.  It saddens me to think that we have to do it all over again in less than a year, but when I think of today (one year post-surgery), it gives me hope that she's gonna be okay. I believe in the power of positive thinking. She still has a long road ahead of her, but she has come all this way already and she's gonna make it out on top.  I love you Scarlett. You are and will always be my hero.

Monday, October 11, 2010

Apology

I have to apologize for my last post. I was venting on a public forum, and I did not mean to offend any other heartmoms or other mothers of sick/ill children. I was merely trying to express my dislike concerning mother’s of healthy children who complain and grumble about trivial things such as household chores for the baby (cleaning high chairs, doing laundry, changing diapers etc), planning birthday parties, or taking your child to the doctor for regular checkups/vaccinations.

 If these mothers only knew what they had [if they appreciated the gift they had] they wouldn’t complain so much. Because there are mothers out there who wish their child was alive to change their diapers, or to fold their laundry, or take them for their shots. It infuriates me that they could gripe about something so pointless and petty when they don’t realize how happy and thankful they should be that they have a healthy child (colds, infections and normal childhood illnesses aside).

 

I, in no way, meant that any heartmom’s journey is easy. And if I implied that, then I apologize profusely. No heartmom’s journey is easy by any stretch of the imagination. CHD is a lifelong process. And requires lifelong follow-up and care with a cardiologist for something they (the child) had no control over.

 

As a heartmom, yes, I do get jealous of other heartmoms whose children are fully repaired, but my jealousy is immediately quashed when I think what that baby had to endure to become fully repaired. I only say that I’m jealous, because I wish I had what they have (the meaning of jealousy)… a quasi-sense of normalcy. In other words, I wish my child only had to go in for echocardiograms/cardiologist check-ups quarterly instead of monthly.

 But I don’t think anyone has it better or easier than I do.

 Going in for cardiologist check-ups and not knowing if they will require another surgery is agonizing. Being a heartmom is extremely difficult. The day they tell you that your child has a CHD is one of the worst days in your entire life. We all know the feeling, of helplessness, hopelessness, confusion, fear, guilt, and sorrow.

 

And I try to live with an attitude of gratitude.

 I am happy and thankful for each and every minute I get to spend with Scarlett. I know that every day with her is a gift... so even when the pressures of everyday life get to me, I remember that it could be so much worse… she could be taken away from me… she could be a CHD angel.

 

So again, if I made anyone upset or mad with my last post please accept my sincere apology. I didn’t mean to be negative, and I certainly didn’t mean to disrespect, insult, affront or slight in any way any heartmoms, or mothers of children with true medical afflictions.

Heartmom Snob

I think I'm a snob. Because when I meet new parents who have healthly children who ~complain~ about the trials and tribulations of parenthood, I think to myself... you weakling.  I look down my nose at them condescendingly as if to say: You have no right whatsoever to complain about your child. You have no idea what it is like to watch your child be poked countlessly for IV placement, You have no idea what a real 'sleepless night' is because your child is in the ICU, You have no idea what it's like to feed your child through a tube, You have no idea what it's like to have a heartbaby. Stop complaining about your healthy baby.

Sometimes it makes me so angry to hear other moms complain. HOW DARE YOU complain about what a pain your child is? Do you have any idea what a miracle you have? Do you have any idea that there are mother's out there who will never get to celebrate their child's birthday because their child died as a result of complications from their heart defect? Do you have any clue whatsoever? 

How can you sit there and complain about changing diapers, or losing sleep because of a newborn, or that breastfeeding is 'too much work'. Try walking one day in my shoes. Try pumping exclusively for 13 months. Try inserting a nasal-gastric tube down your baby's nose, Try lugging around an oxygen tank, and a pulse-ox machine with you everywhere you take your baby. Try not being able to hold your baby for 12 hours after she's born because she's whisked away to the NICU.

Yes, I most definitely would have to say I'm a snob. Because I am. I do think I'm better than those mothers. I do think I have more patience. I do think I treasure life a lot more. I do think I count my blessings more than my prbblems. I do think I am grateful for the little things. More than the 'normal' parent.

They say the grass is always greener on the other side. Well, my grass is green. To someone else, I have the perfect life.  I especially think this with my other heartmom friends. To some heartmoms, my grass is greener. My child is not on any medications. My child is developmentally on track. My child is not on a feeding tube or oxygen. And most importantly, my child is alive.

But to other heartmoms, their grass is greener. I talk to some heartmoms and ask "Is your child considered totally repaired?", which means, "Does your child have to have any more surgeries?", and when they answer yes... meaning, no more surgeries, just annual or semi-annual cardiologist visits... I get a little jealous... (I think.. god, you're lucky)... and I get a little snobby (I think...p'sh, that's it? you're done?..no more worries?), but mostly I get a little sad that it's not fair that Scarlett is not done, and her journey has only begun. 

So to me, Heartmoms of babies with CHDs who are repaired early in life (TGA, TOF, VSD etc.) they have the lawn with the beautiful, plush, green and perfectly mowed grass that I envy, because my lawn has weeds, crab grass and ants.... But to moms of other more critical babies (HLHS, DORV, PA, etc), especially moms whose children also have chromosome abnormalities such as DiGeorge Syndrome, Smith Magenis Syndrome, Shone's Syndrome, or Down Syndrome... I have the perfect green lawn that is to be envied.

My daughter is walking, running, climbing, eating on her own, sleeping on her own, babbling and acting "normal". What they wouldn't give for some normalcy. A life for their toddler free from g-tubes, oxygen, vomiting, infections, and hospitalization. What about those mothers of children who need[ed] whole new hearts? Imagine the torture, pain and anxiety of knowing your child is in heart failure and nothing will save them except a new heart? Just imagine that stress.

Makes you want to count your blessings. and stop bemoaning the small stuff. Which brings me to the title of my post. Snob. Yes, I'm a snob. I know it's probably not right, but Yes, I do think a little less of people who can whine about the stresses of being a mother... when they have no idea what real stress is.  Last week, I heard someone say something about being stressed (caused by their baby)... and I said "Why, are they in the hospital?  to which they replied "no", and I said "Is everything okay? Do they have to have surgery?"  again I heard "no"... so I said "Then what the h*ll is so stressful?", because to me, everything else is trivial. Having your 8-day-old's chest cut open to save their life... THAT's stressful.  Handing your 7 month old baby over to the surgical team for a 7-hour, complicated second open-heart surgery...THAT's stressful.  

Measuring out syringes and feeding your baby through a tube and worrying about them pulling out their feeding tube? THAT'S stressful.  Worrying that your child might pull out their oxygen nasal cannula overnight and their oxygen saturation levels will take a dip and jumping everytime the pulse-ox alarm goes off?  THAT's stressful.

So compared to THAT, What do these people consider stressful? Because to me, it's not. It's just spoiled, selfish people complaining that they didn't get enought beauty rest. It's just ungrateful people [who probably shouldn't have had children in the first place] acting immature. Do I think I'm better than these people? You bet your sweet patotie I do. I treasure my children. I don't sweat the small stuff. I don't allow minor things to stress me out. and I always count my blessings not my problems. Life is to fragile, precious and SHORT to be negative and complain and to be jealous that the grass is always greener. Live for today. Live in the now, and always have an attitude of gratitude.

Sunday, September 26, 2010

Crystal Ball

Sometimes I wish I had a crystal ball. Not because I'm selfish I want to forsee the winning lottery numbers (although that would be nice too),... Not because I want a fortune teller to tell me what happens in the future as far as riches, wealth, career, or to see my fortune.. but because, I wish I knew that Scarlett was going to be okay for the next 6 months.

It has been 4 months since Dr. Pophal told me that she has a leaky heart valve. I wish I had known 4 months ago that she will be okay and not to stress or worry or freak out about small things like sweating or blue fingers and lips.

Speaking of blue fingers and lips... The other day my mom and the babysitter fed Scarlett a blue popscicle. Which consequently turned Scarlett's lips and fingers blue. I came home from work and noticed that her hands were blue but I dismissed it because it was her palms and I figured she got ahold of a blue marker.   But then when I was changing her diaper I noticed a slight blue hue around her lips. A blue moustache haze. and I immediately freaked out and started panicking. Because I know that blue moustache means not nough oxygen to her blood.. which means something's wrong. So I grabbed her blue hands and flipped them over and analyzed her fingernail beds in fear and panic. They were pink...and normal.

My stress was alleviated. I rolled my eyes and deduced that SOMEONE gave her a blue popscicle or something like a blue popscicle. Sure enouch my mom fessed up. I posted on facebook that night "The fastest way to give this heartmom a panic attack is to feed my baby a blue popscicle and not tell me!"  I hereby decree that blue popscicles are banned from my home!! ; )

But seriously... I wish I had a crystal ball that I could look into and know that she will be okay until February 2011. Or even  April or May 2011..., so that I wouldn't freak out about every little thing that I think is a sign of heart failure. I guess that is still kind of selfish. It's not necessarily knowing the lottery numbers, but it is giving me peace of mind that she is going to be okay for the next 6 months, so that I can rest easy.  That's all I ask. Just to know when her next surgery will be so I can relax a little. Then again, of course I wish that she never had to have another surgery ever again.

To dream the impossible dream. That she will be okay. That she'll never have to be cut open again, that her heart will repair itself, that she won't need another surgery, CT scan, Heart Cath or MRI..To imagine and wish, and hope and pray and dream that she could be a healthy normal child. That she didn't have wires holding her chest shut. That she didn't have regular monthly cardiologist visits, regular echocardiograms. That she'll live to a ripe old age and never have to worry about her limitations and never have to worry, and wonder and fear "when is the next surgery?", "How long will this one last?"

So, yes, I truly wish I had a crystal ball that could tell me how long she has 'until the next one'. Because living in constant fear of the unknown is not a place for anyone to be. I don't wish this anxiety and fear on my worst enemy... okay... maybe my WORST enemy, but even then, why would I want anyone to live like this?  Even now, peole ask me "How's the baby doing" [obviously these people don't read my blog!], and I say, "Well, she's doing okay, but she has a leaky heart valve and might have to have surgery in the next 6-8 months", then my voice gets shaky, and tears well up in my eyes, and I say "I'm sorry, I get emotional when I start talking about it"... then sure enough I start crying. I'm such a pansy.

Well, of course, I don't have crystal ball, and last time I checked, they're not for sale on Craigslist. So, I'm left to just take each day as it comes and just treasure the time I have with Scarlett because she is my little miracle baby and heart warrior. She is a survivor, and she is my hero.

Saturday, September 4, 2010

Cardiologist Update


I took Scarlett to the cardiologist Thursday and had good news for a change. Either that, or I'm just looking on the bright side that it wasn't *bad* news again. Dr. Pophal said that her overall heart function is the same. Meaning, it is not better, but it is not worse either. Status quo. She still has the leak, and there is still pressure on her right ventricle, but for now, she is still gaining weight (although VERY GRADUALLY), and she is not in any immediate danger or threat of surgery in the near future. Dr. P said that she probably has at least 6 months..... Which believe it or not was a huge relief.

Because after that botched MRI, I wasn't sure if we were looking at surgery for Christmas or right after New Year's. Seeing as her heart went from no leak to 'moderate' leak in 5 months, I guess I figured it would go from moderate to severe in another 5 months. But as it looks, six months from now is end of February/beginning of March which means it would be at least 10 months from the day I heard "she has a leak".

At the same time, even though she probably won't need another surgery between now and March, they still want to see her every month for weight checks, and echos to check on the leak and pressure. I can handle that. Dr. Pophal said that we need to get her to gain some weight before her next surgery.  Which brings me to my next topic.



Scarlett weighed approximately 18 pounds 4 ounces. She only gained 4 ounces in a month, which is still progress, but very minimal progress. We talked about her nutritian, and about changing game plans to try to get her to eat. Dr. Pophal is going to put her on a heart medication called Degoxin, which will help strengthen her heart and make her feel better (& hopefully increase her appetite).

 I barely gave her her first dose on Friday night, so we'll see how it goes.

Monday, August 23, 2010

Eye Twitching






Needless to say, I've been under a little bit of stress lately. And by lately, I mean ever since Dr. Pophal told me that Scarlett has a moderately leaky heart valve. I was flipping out the day he told me, but I tried to play it cool, But within a week, I was losing focus at work, unable to concentrate, flaking on things I normally don't flake on... and according to my co-workers, I wasn't acting like myself.

Which lead me to write the email to Dr. Pophal and Beth. The email basically said that I'm uber stressed out about her leaky heart valve and I'm literally losing sleep over it.  That's when Dr. P said that he wanted to see her back in a month to check for an echocardiogram. If the echo was the same or worse, he wanted to do balloon angioplasty to try to help her LPA increase bloodflow and decrease the regurgitation (leak).

But as we all know, despite the heart cath (balloon angioplasty), the leak remains.  So, then it was stress wondering how much it's leaking, and how much pressure is on her right ventricle, which we were told we'd know after an MRI.  Well, if you've been following me, you know that her MRI did not give us the answers we had hoped. (Then of course to add insult to injury, she ended up in the Emergency Room as a result!).

Well, now, we have to rely on echo's and weight checks to determine when Scarlett is in heart failure. WHICH TOTALLY SUCKS! I was so hoping that the MRI would give us some sort of time frame. A time frame as to how much time she has until her next surgery. 3 months? 6 months? 9 months? one year?... But now, we have to take her to the cardiologist every 6 weeks for weight checks. Because when she starts to plateau (no weight gain at all), that means her heart is in distress. And we also have to take her for echocardiograms (which Scarlett hates!), to see the leak and the pressure. An echo can tell us whether the leak is mild, moderate or severe, but an MRI would have been so much better. An MRI would have told us HOW MUCH it's leaking and HOW MUCH pressure its causing on the right ventricle.

So, for the last month off-and-on, my left eye has been twitching. It's basically unnoticeable to anyone other than me, but it's there. I googled "eye twitching", and it said it's caused by severe fatigue, or STRESS.  Hmmm...really? I can't imagine why I'd be tired, or under stress? Can you?


This is Scarlett doing Itsy Bitsy Spider. It's her favorite song. : )


She loves Doritos.

The hospital gave her this shirt last November at the C.H.I.E.F. graduation. It says "St. Joseph's Fixed My Heart". It fits her kind of small, but it still fits her because she is kind of small... underweight that is. But she's still growing and still gaining, so I just have to pray that she continues to grow and gain, because when she stops gaining weight, then it's time for surgery number 3. : (

Wednesday, August 18, 2010

Better Today


I'm happy to report that she's feeling much better today than she was yesterday and last night. I was very worried about her last night. When her fever spiked to the point where even after I put her in the tub, she was still burning up I knew I had to take her to the ER.  Then after her bath, while she was wrapped in a towel, she started dry heaving again, but this time rust colored bile/mucus came out. You guessed it... blood.

I didn't know it until last night, but yes, she had gotten so to the point of puking blood, that's when I almost called 911, but I paged the cardiologist, an hour earlier and she said if she didn't improve in an hour, that she'd call St. Joe's and tell them that we were on our way. Laura said we didn't have to call 911, but that's how scared I was.

My sister rushed me and Scarlett to the hospital and Todd met us there because he was at work. They made us wait in the lobby for a few minutes then took her back to peds ER. They said that the blood was probably from her throat from being intubated (breathing tube). 

I took her to the ER for 3 reasons. 1.) she needed a Tylenol suppository 2.) She needed IV fluids to rehydrate her 3.) she needed anti-nausea medicine.  By the time we got to the ER, around 8:00pm last night, she was so dehydrated that the nurses couldn't find a vein to put the IV in. They had to poke her 3 times and use a special vein finding light to find a vein. She was screaming her poor little head off everytime they poked her with the needle and searched for a vein, but NO TEARS WERE COMING OUT. They said that when you're dehydrated it makes your veins shrink and hide.... grrrrreat.  Poor little baby.

After they finally got an IV in and got the Tylenol in her, she immediately started doing better. She was so lethargic and listless, but after a little fluids and when the fever finally broke, she had a little bit more life in her. She looked absolutely pathetic and pitiful.

The ER doc called the cardiologist and the on-call cardiologist said because of her fever and her dehyration, he wanted her to stay the night for observation.  We're up in room 17. It was close to midnight by the time we got up here. She slept pretty well through the night, only woke up a few times, but settled down pretty good.

This morning they gave her 2oz of Pedialyte around 5am, and she's kept it down so far. Then around 7:30, she drank one more ounce of Pedialyte. and at 8 she took 1 ounce of whole milk.  Keeping it all down so far. They said that if she can keep the milk down, they'll let her go home today.  But, boy what a rough 24 hours it has been for my poor little baby.

Tuesday, August 17, 2010

Worthless MRI

As I write this post, Scarlett sits on a Emergency Room hospital room bed connected to an IV which is rehydrating her from the miserable morning, afternoon and evening she's had barfing all day. Then to make matters worse, if you read my previous post you know that Scarlett's MRI was completely worthless.

Right after the MRI nurse released her (even after she puked), we immediately walked over to the Scott and Laura Eller Congenital Heart Center to talk to Dr. Pophal. I was actually very upset that no one warned me that this might happen. I was mad because Dr. Pophal didn't say "we may or may not get the answers we need depending on whether or not they are able to take the pictures they need"... I'll be honest, I was livid. So I wanted to know what the heck we were gonna do now that we don't have the answers to the questions we went in for the MRI to begin with.

Dr. Pophal was very professional and talked to us and explained everything to us. What happened was like the movie "The Perfect Storm". Meaning, the reason they weren't able to finish the MRI and that all the pictures came out black (full of shadows) was because the wires holding her sternum shut combined with the clips on her ribs and the coils in her heart are just enough to cause the MRI machine to be unable to take quality pictures.

So basically there was absolutely to way for Dr. Pophal to know that an MRI would be completely worthless. Not only that, but it almost makes no sense. Dr. P said that they have MRI'd kids with more metal in them than Scarlett just fine...no problems. So it makes no sense why it wouldn't work for her. But like the movie The Perfect Storm, all the factors had to be aligned to cause a storm like that, well that's just like Scarlett's chest.

Unfortunately, an MRI isn't possible. So, the whole purpose of the MRI was to quantify how much is leaking and how much pressure on her right ventricle. Now, to get these answers, we have to rely on echocardiograms and CT scans. I talked to Laura (Beth's replacement while she on maternity leave) said they have a game plan. Which includes weight checks every 6 weeks and an echo every 3 months. Plus we need to be aware of heart failure symptoms.

It just really sucks that she's now super sick from a worthless MRI. They're admitting her because she's been barfing all day and now has a fever of 102.5 not only that, but she's so dehydrated she's not even producing real tears when she cries. The ER doc is going to admit her for observation. We'll be up on the 7th floor PCTICU. BTW: I'm typing all of this from my hand held Blackberry. Wish I had my laptop here!

Worst MRI Ever

So, we get to the MRI lab, check-in, wait, they take her back, we go out to the lobby to wait the one and a half to two hours it'll take them to get all the pictures they need. After about 15 minutes we leave and go get something to eat. We're back in 30 minutes from the hospital cafeteria. When we get back Todd asks the receptionist how she's doing. They tell us she's in recovery and we can go back in 15-20 minutes.

So, about 15 mins later they call us back. She's in a metal hospital crib waking up from the anesthesia. We're right there to greet her when she comes to. She has an IV in her right hand and a pulse-ox on her right foot. She immediately starts fussing. Todd picks her up. She continues to cry. She's clearly miserable and upset. This goes on for another 5 minutes, then the nurse gives her some clear Pedialyte. She drinks about an ounce of it. She's too upset to eat and she just continues to cry inconsolably. I get to hold her. She just continues to cry. She's upset and nothing is making her happu.

Todd takes her back and tries again to comfort her. Then she BARFS all over Todd's work uniform. (He was supposed to go straight to work right after the MRI....not anymore). Then we're all frantically trying to help her and clean up her vomit which is mostly pedialyte. We are barely able to calm her down when the nurse drops the bomb.

"We weren't able to take all the pictures we wanted to because of all the metal in her chest"... Astonished, we're both thinking outloud: WHAT?! She repeats: "the pictures we took were very shadowy and we couldn't even complete the scan". She goes on to say that the magnets were just refracting off the coils and the staples/clips in her heart so all the pictures they took were coming out black. She said they couldn't even see her heart because of all the shadows.


Which means all that crying, sore throat pain, barfing, intubation, poking for an IV and starving my baby since 3:15 this morning was for NOTHING! I will post more when I get home but this was definitely NOT the news we were expecting today. : (

MRI Today

The hospital called me on Sunday to go over her admitting instructions for Scarlett's MRI today. I didn't know that they had their own parking lot and their own admitting desk. The lady who caled me told me Scarlett couldn't hve anything to eat after 4:30am. But she could have clear liquids until 8:30am.

She said that she could wear her normal clothes during the procedure as long as it doesn't have metal (snaps in onesies), because metal would interfere with the scan. She said that they will put a anesthesia mask over her mouth/nose, she'll take 10-15 breaths then fall asleep. For some reason when she said this I started to cry softly to myself. Probably because I'm remembering the same senario from her last CAT scan and heart cath. Then the lady said that they will probably insert a breathing tube down her throat because they will have to take some "still shots".

She said that Scarlett will probably have a sore throat when they take the tube out. I had tears rolling down my cheeks. I feel so sorry for my baby. Its not fair. I don't know why it upset me so much to know that she'll be intubated, but it did. So with a lump in my throat I wrote down everything she said. And I answered all her questions. No, she doesn't have a pacemaker. No, she's not allergic to anything. Yes, she has metal in her body (wires holding her sternum closed). No, she doesn't have diabetes or high blood pressure. Yes, she's had surgery before. No, she's never had an adverse side effect from the anesthesia. And on and on and on.

You would think after 2 open heart surgeries, 2 cardiac catheterizations, and 2 CAT scans, this would be easy for me. But it's not. I'm still scared. I'm still worried. I'm still sad. I couldn't sleep last night. I woke up to feed Scarlett at 3:10 this morning and I couldn't fall back asleep until almost 5:00am. But I'm not even tired believevit or not.

Grandma spent the night last night so she can watch Violet today while we're at the hospital with Scarlett. So last night Scarlett was singing "Itsy Bitsy Spider" with mommy and grandma. Well, she doesn't sing of course, but she does the hand gestures during the song and she claps when its over. Then she immediaty starts the spider hand gesture again to signal to us to sing it again. It was precious.

Well, one more hour to go before we head out for the hospital. I'll post more when I'm there.

Sunday, August 15, 2010

New MRI Date (sort of)

I was driving home from work yesterday when I got a call from St. Joseph’s Hospital. They were calling to confirm Scarlett’s MRI for Tuesday, August 17th at 11:30am. I immediately said “You mean Monday, the 16th at 11:00am, right?”, and the lady on the other end said “No, it’s Tuesday the 17th at 11:30am, check-in is at 10:30. 

I was perplexed because I was sitting at my computer when the nurse called me to schedule it. I put it on my calendar, I wrote it on my leave slip for work, I even posted it on my blog. August 16. Don’t know why I was so certain it was that day…
Because this morning I looked at a notebook where I write everything down work/personal related and it says “August 17, 11:30am check in @ admitting”. Clear as the nose on my face. I guess I have a lot on my mind, because I pushed it up by 24 whole hours.  What a ding dong I am!
Well, my precious little Scarlett is doing very well. She was teething last week and was waking up intermittently with terrible screams of pain. But she’s calm down when I took her out of her crib and her run around the living room. Then she’d scream again when I tried to put her to bed again. But yesterday evening, she was giggling and smiling and I saw a tooth breaking through on the bottom. She has almost all of her teeth now, but is still missing 2 on the bottom and 2 on the top.
Oh, and her new favorite thing to do is climb up her Little Tykes slide and slide down all by herself. It is adorable. Sometimes she even says “weee!” when she’s going down the slide. Mommy taught her how to use the slide, and now she’s an old pro.  I’ll try to post some pictures later.

Monday, August 9, 2010

Emotional Wreck


Today one of my heartmom friends posted on Facebook that she was nervous about taking her baby to the cardiologist office.  She was apprehensive about something being potentially wrong with her daughter, who also has Tetralogy of Fallot (just like Scarlett). Fortunately for her, the cardiologist (Scarlett's cardiologist, Dr. Pophal) said that her baby looked and sounded great and that she doesn't have to go back until November.

Her post brought tears to my eyes. I was so happy to hear that her daughter is doing so well. Truly I was. But I can't help but think that I was also emotional that I wish Scarlett's cardiologist appointment back in May had the same outcome. I wished that Dr. Pophal was able to give me the same news about Scarlett. Instead, I was told she has a leaky valve. Not only that... but that it was leaking "a good amount".   Ever since that day, I've been an emotional wreck. Crying at the drop of a hat.  Living in fear that her heart is working overtime. Worried about every abnormal behavior. Praying for more time. Holding my breath during echos that the leak hasn't gotten worse.

All it takes is some unsuspecting person to say "How is the baby doing?" and I break into tears. But not always. Usually I'm okay. Usually, I can talk about Scarlett's heart condition with a poker face. I can fake it pretty well. I can pretend that I don't live with the thought that each day with my youngest daughter could be her last.

I read stories about heart parents who lose their children unexpectedly do to complications from their child's heart defect. Here one day, and gone the next day. It is every parent's greatest fear to lose their child, but for normal parents it is an unjustified fear. The risk of something happening to their healthy child is about 1%. But for a heart parent, especially for the parents of the babies with complex congenital heart disease who's children are never truly "fixed", that fear is more prevalent, justified and REAL.

I'm one of those parents. I was reminded again in May that Scarlett will *always* have something wrong with her heart. Scarlett will always be waiting for the next surgery. Waiting... not knowing... wondering.... how long will this one last me?...when will the next one be? How much time do I have?....  It makes me very, very sad when I think about it. Sometimes life isn't fair.

Geez, I didn't mean for this post to be such a downer, but I guess I'm just praying to God that next week's MRI tells us that she has at least another year before her next surgery. Hasn't she been through enough in this last year? Can't we just let her rest and be a "normal" happy kid for a little bit?

Wednesday, August 4, 2010

Sweating -- Imagining The Worst

There are certain things that “normal” babies do that cause little, mild or no concern in parents. Such as: sleeping too much, not eating enough, acting tired, acting irritable, fever, vomiting/spitting up, restless nights, or sweating. But to a heart parent, any one of these symptoms could be a sign of heart failure…

Heart babies are different. Much different. Worrying is second nature to any mother. However, when your child’s seemingly minor cold/flu/infection could mean the difference between life and death… you take every fever, every decrease in appetite, every vomiting and every lethargic episode as serious. There is no such thing as “we’ll just wait it out and see if it clears up on its own”.  Why? Because, 24 hours could mean the difference between mild vomiting caused by tummy upset and heart failure.

And this is for a “normal” heartbaby. Now, add another stress factor to the mix…. LEAKY HEART VALVE AND PRESSURE ON THE RIGHT VENTRICLE. Do you think any parent would take vomiting, racing heart, decreased appetite, or sweating mildly???

So, the other day Scarlett was sweating. Indoors. Under the fan. With the air conditioning on. Todd was home, Violet was home, heck, even my mom was there visiting. Yet, three other people were comfortable with the room temperature… and none of them were sweating. Only my little heartbaby was.  My little moderately-leaky-valve-and-mild-pressure-on-the-RV precious little Scarlett. Why was she sweating and no one else was?  

Immediately, your mind imagines the worst. Oh my god, she’s in heart failure.  Because sweating, along with labored breathing, vomiting and racing heartbeat are all signs of cardiac distress. So we page Beth (Scarlett’s cardiologist)…. Even tho she’s on maternity leave and technically not supposed to be answering pages, she calls back right away.

She said that sweating is actually normal for heart kids. Not quite sure why, but it is normal/expected. As long as she’s not vomiting, breathing hard, or excessively tired, then she’s probably just fine, and the house is a little warm for her. WHEW! What a relief. But how were we supposed to know? It’s like we’re constantly on-edge and worried that at any moment she could go into heart failure.  But since Scarlett was happy, playing, climbing, laughing, and acting like herself… then the sweating was probably because she was just warm.  

So, at last week’s cardiologist appointment she weighed 18 pounds! Yee Haw! She finally reached the 18 pound mark. Only two more pounds and she can go in a forward facing carseat and see something other than the backseat. We are still fortifying her milk with formula, calorie enhancers, and thickening it with oatmeal.She’s not a very good eater anymore. She likes to pick at her food, but leaves most of it on her high chair tray. But somehow someway, we’ll fatten her up.  Her MRI is still scheduled for August 16, we’ll have more answers about when the next surgical intervention might take place. Until then, we just watch her closely and pray that the homograft lasts her at least another year.

Wednesday, July 28, 2010

MRI Is Scheduled



Had a quick moment to post some pics.

Scarlett has a cardiologist appointment this Thursday, but the MRI is scheduled for August 16. Have to run, but will post more later.

Saturday, July 3, 2010

Not Out Of The Woods

Well, the echocardiogram results came back normal and she was released on Wednesday afternoon. But that doesn't mean she's out of the woods yet.

Beth (Sacrlett's other cardiologist) said the echo looked good but that the leak was still there. Because the leak is still there, the pressure on her right ventrivle (RV) is still there. Mind you, the overall heart function is better and the tightness in her left pulmonary artery (LPA) is not as bad, but it is not completely gone.

So the question now is HOW MUCH PRESSURE? And HOW MUCH LEAKING? In order to quantify "how much" and "how fast"? Beth wants to see her back on Tuesday for a follow-up appointment. They'll check her weight, listen to her heart and just assess her. Then in a month, they want to do an MRI to determine exactly how much blood is regurgitating back to the RV.

An MRI will give Dr. Cleveland the answers he needs to determine how much Scarlett's heart will be able to handle. But since the leak and the pressure are still there, then it is inevitable that her next open heart surgery to replace the homograft will be soner than the 2-4 years an originally estimated. : ( The MRI will give us a lot of answers.

Wednesday, June 30, 2010

Echocardiogram

Day 2 at St. Joseph's Hospital. Scarlett had a pretty restful night. She woke up a few times crying, but settled back down within minutes. Much better than I expected. This morning she woke up in such good spirits. She is such a tough little girl. She was standing up, playing with toys and wanting to he held by mommy and daddy (which we were obviously happy to oblige).

They removed her IV last night/this morning around 2:30am. Her chest x-ray at 5am came back normal, so we're just waiting on the echo results (which is being done at this very moment). If the echo yields good results, then we'll be able to go home today! yay!

She hasn't thrown up at all from the anesthesia, and as a matter of fact she had a ravenous appetite when she got up to her room. She drank 8 ounces of Pedialyte! (she usually only drinks 3-5 ounces at a time).  Then last night she drank her milk bottles like a champ and seemed much hungrier than usual. Probably because she had nothing to eat or drink from 2:30am Tuesday morning until 3:30pm Tuesday afternoon.

After her echo, we're gonna let her have a little breakfast. I ordered her some scrambled eggs and toast. The nurse just brought in a high chair for her. We're just waiting  for the ultrasound tech to finish up the echo. And believe it or not, she's not screaming right now (shocking!). She usually *hates* echo's. and fusses and fusses and cries through the entire thing. But right now, she's being a little saint. Good girl Scarlett! Ooooo, the echo guy just finished... anxious to know the results.

Well, I don't have internet access at home, but I will try my best to figure out a way to update the blog, maybe via my cellphone or perhaps going to a friends house to use their internet. :)

Tuesday, June 29, 2010

Successful Heart Cath


Little Scarlett is resting peacefully after a very busy day! We had to check into the hospital at 9:00am this morning for her 11:00am heart cath. I packed our bags last night and finished packing this morning. We actually got a late start but ended up being perfectly on-time. We did the usual...registration, walk up to Peds pre-op, hang out there, get weighed and measured, fill out more paperwork, sign consent forms, change into her tiger hospital gown, get blood drawn, etc.  Then it was off to the cath lab.

Daddy got to push Scarlett in this toy car that the hospital has (this pic was taken before she changed into her tiger gown).


We got to meet with Dr. Pophal (like I mentioned in my last post) right before handing her off to the nurse, and he let us know what he was going to do in the cath lab. Balloon angioplasty of her left pulmonary artery (LPA) and stent it if he had to (which he didn't want to).  He had mentioned that her homograft was leaking moderately (as opposed to mild or severe).  He said that he was hoping that the leaking was because of a narrowed LPA, and that if it wasn't then we might have to consider that it's just time for a new homograft [which is a major 7-10 hour open-heart surgery]. We were hoping and praying for good results, needless to say.

We handed Scarlett off to the nurse around 11:20am. She started screaming her head off when I handed her to the cath nurse. It broke my heart. The nurse said that one of us could go in there with her while they administer anesthesia and she falls asleep. I volunteered Todd.  and I'm glad I did. He came back very teary eyed because he said Scarlett went out fighting, but that she was out within a minute of struggling.

Then we headed up to the 7th floor PCTICU, to wait the 3 to 4 hours during her heart cath. Scarlett's auntie Dawn came to wait with us, and uncle Marc also came for a while too. Finally around 3:15pm we got the call that they were done and they were bringing her up to her room [where we were waiting]. We had to leave her room so they could get her settled in when she arrived. We went to the waiting room for about 10-15 minutes.

Finally we were able to see Scarlett. She was groggy and resting, because the nurse said she had woken up and became upset, so they gave her something to calm her down. So, when we walked in she was quasi-sedated. But that didn't last very long. because she woke up (again) and oh my golly! what a harrowing experience it was. She was super duper upset! Turning over, crying, fussing, kicking etc..

I kept asking: is she in pain?, is she hungry?, is she scared?, she was just so increibly upset and irritated.

Mind you, she's not supposed to move her leg for 6 hours [heart cath means they inserted a catheter into the artery in her groin/leg area], but she was kicking/screaming/crying/writhing and throwing a fit for the better part of 45 minutes. She would relax and settle down, but that would only last a minute or two before the crying and fussiness started again. They upped her pain meds, that didn't work... then they gave her some Morphine, and that helped for 10 minutes but after that she was right back to being very, very upset.  Finally a new nurse came in and gave her some more Morphine and she calmed down and has been sleeping ever since. 

So now onto Dr. Pophal's  cath report....

Dr. P said that he was able to balloon angioplasty Scarlett's LPA, and that should help with regurgitating bloodflow. Because remember, her right ventricle (RV) pumps blood up the homograft, to the pulmonary arteries to the lungs. But because her LPA is so narrow, the blood can't pass so it regurgitates it back down the homograft (called "leaking"), and over time this leads to right-sided heart failure because her RV is working overtime to try to pump twice the amount of blood through the homograft.

Now that her LPA is widened [post-cath], he is going to give her RV a chance to release some of the pressure that is building up from working overtime these past few months. HOW MUCH TIME? we don't know. He is going to discuss Scarlett's case with Dr. Cleveland (the surgeon). Depending on what Dr. Cleveland says, well.... we might have to replace the homograft sooner than the 2-4 years that I originally thought in October.

Meaning: 
1.) Blood is supposed to flow in a forward direction in your heart (with no backward "leakage")
2.) Because Scarlett's LPA is narrow, blood was regurgitating ["leaking"] back to her RV
3.) The leaking in her homograft is moderate or moderate-to-severe. This is bad.
4.) The leaking [backward bloodflow/regurgitation] is causing her RV to work overtime to pump it back to where it belongs
5.) Because her RV is working harder than it has to, it's causing pressure in her RV.
6.) The pressure in her RV is mild-to-moderate.

After today's heart catheterization, I am hoping and praying that the ballooned LPA will allow blood to flow through the homograft (one-way) and lessen the pressure in her RV. Because, if the pressure in her RV maintains or gets worse, she will need a new homograft [which I mentioned earlier is a 7 to 10 hour open-heart surgery!].  Unfortunately, I don't know how much time Dr. Cleveland is going to want to give Scarlett to allow her RV pressure to come down. 2 months? 4 months? 6 months?

The good news is that we did buy her some more time. Because if Dr. Pophal wasn't able to balloon angioplasty, then it would have meant immediate homograft replacement. So, at the very least, we have bought her some more time [how much time, I don't know yet]. Oh, and I almost forgot...most importantly, she is not on any supplemental oxygen after this heart cath! Woo Hoo! :)

Thanks for everyone's thoughts, well wishes and prayers today. I will post more when I know more.

Heart Cath

As I'm writing this Scarlett is in the 'cath lab'. Just as I expected, it was extremely difficult to hand her over to the nurse. She started bawling immediately, so Todd had to go into the cath room with her to hold her while they 'put her under'.  Talk about a grown-man crying...

I meant to blog several times since my last post, but I don't have internet access at home anymore, so it's been tough.  Since my last post, I had a quasi-nervous breakdown because of Scarlett's leaky valve.  The second I heard Dr. Pophal utter the words I was immediately panic stricken.  WHAT? NO!, Not yet!

I know that the words "leaky heart valve" means that she's that much closer to her next open heart surgery...and at the time (May 13) it had only been 7 months since her last major open heart surgery. I was anticipating that her homograft would last her at least 2 to 4 years as they had originally hoped.

But, Dr. Pophal was pretty calm about it when he told me. He said that she wasn't in immediate danger, and that if the leak got the same or worse at her next echocardiogram (a month later), he would just schedule her for the cath lab where he could balloon open her pulmonary arteries.

So, I was prepared at her next cardiologist visit that it was a very real possibility that she could be going in for a cardiac catheterization this summer. As expected, at the next visit (June 10), Dr. Pophal said that the leak was the same. so they scheduled her cath for today June 29.

Dr. P said that he planned to go in and stretch her pulmonary arteries so that the blood that is going in there and regurgitating back to her right ventricle will stop regurgitating. But this morning, he said that IF he's not able to stretch (balloon) her arteries, or IF that isn't the reason why the regurgitating is happening [which is a possibility], then it means that it's possibly time to replace the homograft. Which is a fear of mine. I hope and pray that this isn't the case, but I will blog more after she comes out of the cath lab.

Wednesday, May 19, 2010

Leaky Valve : (


Well, the cardiologist appointment last week had good news and bad news. But for me, it was more like bad news and more bad news. The “good” news is that she gained weight. She now weighs 17 pounds 2 ounces. According to the cardiologist office, she gained 1 lb 3oz since her last visit. She is still in the zero percentile for growth, so I was still disappointed. The cardiologist said she was pleased with her weight gain, because at least she is gaining.
She tried to make me feel better by saying Scarlett went from the negative 5th percentile to the negative 3rd percentile. I just wish she was on the growth chart again. I was not happy about her weight gain, because when I took her for her 1 year check up, she weighed 17 pounds. So, to me she only gained 2 ounces in 2 months. But maybe I’m mistaken. : (

The other bad news is that her echocardiogram showed she has a leaky valve. The homograft, (pulmonary valve from a cadaver that they implanted in October) is showing some regurgitation backward into the right ventricle. Thereby making her right ventricle work overtime to try to pump that blood back up the homograft.

Because this excess (leaky) blood makes the right ventricle work harder than normal, over time it adds extra pressure on the right ventricle, reducing its ability to pump blood (a condition called right-sided heart failure). Mind you, this is over time. But what we don't now is HOW MUCH TIME. Are we talking weeks? or are we talking months?  I was thinking since her surgery was in October, that I had at least 2-4 years before I heard the words 'leaky valve'. So, yes, I was a little surprised to hear those words this soon after surgery, it's only been 6 months.

I know leaky valves are normal and expected for someone with her heart condition, but it really threw me for a loop. : (  I'm not ready to send her back to the hospital yet.  Dr. Pophal said that he may be able to treat the leaky valve with medicine...but in the end, he did an EKG (in addition to the echocardiogram), and they want to see her back in another month for another echo.
I tried to act calm and cool about it when they told me. I asked if this was a new finding, or if it was leaky at her last echo. Unfortunately, they couldn’t find her last echocardiogram to compare it to, so I was secretly FREAKING OUT inside.

I'm not gonna lie. I'm very worried about it. I know I probably shouldn't be, but when you live with a child that skirts the fine line between life and death, it is very hard not to be worried. The fact that I'm a complete worry wart doesn't help the situation either. Today Scarlett wouldn't eat and she was unordinarily sleepy. I immediately got worried that it's her heart. It could be nothing, but now that I know she has a leaky valve, it's on my mind that any unusual behavior can be heart related.

I will feel better after our next cardiologist appointment. For now, Scarlett is still doing well. She's acting "normal", and she seems happy. Her appetite has decreased, but maybe it's just because she's teething. I still need to buy a new digital camera, and when I do, I'll post more current pics. Thanks for reading.

Wednesday, May 12, 2010

Growing Up




I can hardly believe that my little baby is already going to be 15 months old. She is doing so awesome. She's practically running now. She is drinking from a sippy cup, wearing size 9-months clothes, eating big people food, dancing when she hears music, and trying desperately to talk.



It's been almost two months since her last cardiologist visit. She is going for a routine echocardiogram and clinic appointment tomorrow. This will be our first 'official' visit with Dr. Pophal. Beth will be there too, but it will probably be the last time she sees Beth, because she has officially transitioned from the "high risk" category to "normal" category, and only needs to be monitored every 2 months. Maybe at tomorrow's visit they'll say that she can go longer in between visits?? Like 3 or 4 months?  She seems to be doing so fantastic. Such a blessing.





I broke my camera somehow on Easter Sunday. These are some of the last pictures I took. As soon as funds are available, I'll buy a new one, so that I can start snapping  and posting new pics of my little princess.

Other exciting news to date: We moved!! If you've been reading my posts since July of last year, you'll know that I was house hunting for 8 months. I finally found our dream home in Glendale, AZ very close to Cardinal Stadium also known as Westgate.  We moved in April 5th and I love it! The neighborhood is pristine and beautiful. Very family friendly. Beautifully landscaped and maintained front yards, nearby parks, and best of all, Scarlett's aunt and cousins are within walking distance (6 houses down the sidewalk!).  I will post more pictures later this week, and definitely more when I get a new camera.




Tuesday, March 9, 2010

Look Who's Walking!




Well, I'd have to say it's official. Scarlett is walking! The babysitter said that all day today, she's been walking from the couch to the playhouse, from the chair to the table, and all over the house in little 6-7 step spurts. She immediately falls to her little bum after 6-7 steps, but she gets right back up and trys again. She's doing great walking along the walls, couches, tables. My little trooper. I can't believe after all she's been through, she can still pull herself up and let go and walk.










She's such a big girl. She now has 5 teeth on the top and 4 teeth on the bottom. I'm introducing new foods everyday. Last week, she tried spaghetti for the first time.







Scarlett is a "big girl" now. She's eating big girl food. Her first time eating spaghetti, she mostly played with her food, but I think she got one or two bites in after all was said and done. She eats taquitos, crackers, yogurt, grilled cheese, chicken nuggets, french fries, green beans, peas, Cheez-Its, Nutragrain bars, and of course mommy's potatoes. I gave her apple for the first time last week too. She's still underweight, and needs extra calories, but she's a GREAT eater (unlike her sister). My little Scarlett will try anything.  Soft, crunchy, wet, dry,...finger foods... or being spoon fed... she loves to eat. : )  Such a blessing. Now if only I could get her to gain some weight!

Beth (Scarlett's cardiologist) sent us some BeneCalorie and Kids Essentials. I need to introduce these supplements to her diet.  I guess we'll see how it works. So far, she's taking pretty nicely to the whole milk (from breastmill). It's been about 2 weeks already. She has a pediatrician appointment next week for her 1-year check-up and monthly synagist shot. I'm keeping my fingers crossed that she gains some weight. I'll keep you posted!

Tuesday, March 2, 2010

Mommy's Paranoid and No More Pumping!


Today I took Scarlett to the cardiologist for her routine follow-up appointment. I also took Violet for an echocardiogram. Yes, you read right, Violet. Ever since Dr. Alboliras told me that my baby (Scarlett) would be born with a complex congenital heart defect, I've been paranoid that Violet (my 3 year old) might have an undiagnosed CHD too. So for the past year, it's always worried me.

At Violet's 3 year check up last month, I told the pediatrician to listen extra carefully to her heart for any murmurs. Which got us talking about why, which lead to the pediatrician referring Violet for an echo based on family history.  On the car ride to the clinic today I taught Violet a new word "paranoid". I told her mommy's paranoid. Because the truth is, mommy IS paranoid that something might be wrong with her heart, and I'd rather be safe than sorry.

I already had an appointment scheduled for Scarlett today (can you believe it's been 8 weeks since her last appointment?), to check her heart [and weight], but since I was going to be there anyway, I had them schedule an echocardiogram on Violet too. So while daddy and Scarlett were in one exam room, mommy and Violet were in another getting the echo (ultrasound of her heart) done. 



And I'm happy to say that it came back 100% normal. Yay! :) Violet's heart is great.



Scarlett's cardiologist said that her heart looks great too! We don't have to go back for another 2 months! Which is so great because last year we were at the cardiologist's office every 2 weeks, so to be able to wait 2 months is fantastic.

As for Scarlett's weight, she's still small for her age. She weighs 16 pounds, but she's still holding steady on her own growth curve which is slightly under the 0 (zero) percentile. So although she's not on a "normal" growth curve, she is still growing which is a good sign. I have to continue to add butter to her diet and add carbohydrate powder to her milk, but she's doing great.

Speaking of milk.... I'm happy to announce that I have officially STOPPED PUMPING! Yee Haw!  Any mother can breastfeed (no biggie), but it takes an extra dedicated (a.k.a. ~crazy~) mom to exclusively pump for 365 days. (or 372 days in my case). Yes, because of Scarlett's heart condition, she was unable to nurse. She was on a feeding tube for the first 6-8 weeks of her life, I also had to fortify my milk to increase her calorie intake, and in addition to all of that, she aspirated her food and I have to thicken it with a thickening packet. So to this day, Scarlett has never actually 'breastfed' (nursed).

But since it was so important to me to feed Scarlett breastmilk, I'd been pumping, pumping, pumping since day one. Never being able to feel the bond that accompanied nursing her. Instead, I had a special relationship with my breastpump. It's no wonder... since I pumped day and night round the clock... At work, at home, in the car, at my mom's house, my sister's house, my aunt's house, my cousin's house, my friend's house, at baby showers, at bridal showers, in parking lots, in bathrooms, in offices, at the hospital, on the toilet, on the bed, on the couch, on the floor, on the chair, in a moving vehicle (while someone else was driving of course!), in the front seat, in the back seat, in a parking garage, ...yes, I was a regular "Dr. Seuss" (Green Eggs and Ham reference).  I even pumped and dumped when I ate spicy foods or during the 2 times that I consumed an alcoholic beverage in the last year.

At any point in time for the last year you could ask me "What are you doing", and I'd answer "Pumping"... or sometimes I'd just say "What do you think I'm doing?"... Or I'd be talking on the phone while pumping and friends would say "What's that noise", and I'd say "I'm pumping"....or people at work would ask "Where are you going".. and I'd pat my breastpump bag and say "Where do you think I'm going?". Even my Violet knew what mommy was doing. I'd ask her "What's mommy doing?" and she'd say "You're pumping your boobies!".. and I'd say that's right..I'm making milk for Scarlett!!

You may ask..'Aren't you going to miss it?', and I will quickly answer "NO!". Oh, and a note to all my breastfeeding/pumping mom friends out there... Don't Stop Cold Turkey!! Evidentially, you're supposed to stop  g r a d u a l l y.   Uh... duh... why didn't I think of that?  In fact, my body is still sending messages to my boobs to make more milk. Apparently they still haven't gotten the hint that I stopped pumping a week and a half ago!  Hello boobs, this is your brains talking... you can stop now.. thanks.

So, my little Scarlett is officially on whole milk, and mommy is officially done pumping  (or pumping and dumping)!  Yay! Plus, her heart looks and sounds great, Violet's heart is great and there is lots to celebrate.