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.

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 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.