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?

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.

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.

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.

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. :)

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.