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. : (
Tuesday, August 17, 2010
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.
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…
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.
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.
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.
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