"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!

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.

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.

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.

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.

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. : (