It's the end of October and I can't help but think back on the last few weeks that we've had. So much happened this month, both good and bad. I keep seeing things around the house that are little reminders of our activities, so I thought I'd do a post reflecting back on the month.
NiteFlite VIP passes - Months of hard work for Matt paid off. He was the chairman of NiteFlite for Scottsdale 20/30 this year and the event raised $235,000. All of the money that the club raises goes directly to local children charities. He, and all of the guys in the club, did a great job and the event was a success! I just wish that both he and I could have been there to see it all.
Red wrist bands - I kept the last wrist band from the hospital and it sits in the jewelry box on my bathroom sink. I know I won't keep it there forever but when I see it I'm reminded that we are so lucky to be at home.
Radio Flyer wagon - The weather has finally gotten nicer here and we've been really enjoying our nightly family walks through the neighborhood.
Facebook and Email - The other day I was telling someone that I would NEVER wish on anyone, even my worst enemy, the feelings of fear, sadness, anger, and helplessness that Matt and I felt with Anabelle in the hospital. But, it would be amazing if everyone could feel the amount of love, support, and compassion that we felt from our family and friends. We got so many wonderful emails, messages, phone calls, and visits from so many people. I think that one of the reasons that we were able to stay strong was because we continued to get such positive messages from so many people.
Pumpkins - We carved our Halloween pumpkins last night. Uncle Ash came over and carved his pumpkin too. We got our pumpkins during a fun trip to MacDonald's Ranch with Grandma Sarah last weekend. She was here for a few days and it was really nice to see her and spend time with her.
Party Dress - The day before we took Anabelle to the hospital my mom and I went to the mall to find a party dress. I needed a dress to wear to NiteFlite and to Eric and Theresa's wedding and I found two that I really liked. Those two dresses are still hanging up in my closet in their protective plastic. I plan to take them back to the mall this week for a full refund because I hope that by the next time I need a party dress I will have lost a little of this baby weight and won't fit into those. (Yes, I'm trying to look at the bright side of having to return those beautiful dresses)
Anabelle's Blanket - Oma made a hand-sewn blanket for Anabelle. It's such a beautiful blanket and it's so cozy. She put so much time into it (working on it at night while we watched Glee, at the hospital while she was keeping me company, and late into the night). I plan to make sure that Anabelle knows how much time and LOVE went into that blanket.
PopTarts - I started back to work this week and I like to take a PopTart to work with me. It's been good to get back into a routine but hard to believe that it's already time to be working again. I feel like my time off with Ellie went by way too quickly and it makes me sad that so much of that time was spent at the hospital. But, we still got in some great bonding time which was the whole reason I took off those first 5 weeks. I get to work from home most of the time and I can take Ellie into the office with me so it's been a good transition back into it.
Medicine Syringes - We must have 50 syringes in our house. The hospital gave us a big bag of them and it's been helpful to have extras. But, because we have so many of them, I find them all over the house. Some in Anabelle's room, some in our room, in the kitchen sink, on top of the refrigerator, and as I type this there is one balancing on my phone that's sitting on the couch. It's been a little bit of an adjustment getting used to giving Anabelle medicine every eight hours but we have a pretty good system set up to make sure that we don't forget.
In a lot of ways October really was a great month in our family. We have a lot to be thankful for. We are so grateful that Anabelle's heart condition is treatable with medication (and that medication is the preferred method for WPW). We are surrounded by wonderful people that love us and love our kiddos. And, Matt and I are grateful for each other and we're so happy that we have each others support.
So November, we're ready for you! Bring it on...
Sunday, October 31, 2010
Wednesday, October 27, 2010
Matchy-Matchy
A few months ago I bought Hayden and Anabelle matching pajamas. I really (really, really) never thought I would be the type of mom that bought "matchy-matchy" stuff but I. SO. AM. And this is just the beginning folks.
Anabelle's pajamas are a little bit big but I just couldn't resist. And we, of course, had to take about 50 pictures of them. It could be that they're wearing matching pajamas, but I think that they are starting to look more alike.
What do you think? Click on the picture below to see some of our favorite shots.
Anabelle's pajamas are a little bit big but I just couldn't resist. And we, of course, had to take about 50 pictures of them. It could be that they're wearing matching pajamas, but I think that they are starting to look more alike.
What do you think? Click on the picture below to see some of our favorite shots.
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| Matching Jammies! |
Tuesday, October 26, 2010
Monday, October 25, 2010
Cardiologist Follow Up
Today we had a follow up appointment with Dr. Papez, Anabelle's cardiologist.
The check up went really well. They took her blood pressure, did an EKG, and did an ultrasound. She was really calm and content through everything and even fell asleep while they did the ultrasound. Dr. Papez said that everything looks good and that he won't need to see us again until next month (so long as she doesn't go into SVT between now and then).
So, I guess I can cut this thing off then? I'm not superstitious...why do you ask??
The check up went really well. They took her blood pressure, did an EKG, and did an ultrasound. She was really calm and content through everything and even fell asleep while they did the ultrasound. Dr. Papez said that everything looks good and that he won't need to see us again until next month (so long as she doesn't go into SVT between now and then).
So, I guess I can cut this thing off then? I'm not superstitious...why do you ask??
Sunday, October 24, 2010
A Great Weekend
We had a great weekend. A much different weekend than we expected but wonderful, nonetheless.
Months ago we booked a trip to Tampa for the wedding of Eric and Theresa. Matt went to college with Eric which meant we'd be getting together with some of our very best friends for the weekend. Plans were made to go to Burns (an amazing steakhouse in Tampa), we'd meet Stella (Vin and Sheila's daughter), and we'd celebrate Eric and Theresa's wedding. Matt and I would fly to Tampa with Anabelle while Hayden would have a weekend at home with Grandma Sarah. Needless to say, we were all very excited.
But, with Anabelle's recent health problems we decided to cancel the trip and stay close to home. We asked Grandma Sarah to come for the weekend anyway and stay with us. We've had a great time together and have gotten to do so many fun things.
- Anabelle, G. Sarah, and I met Matt at work and had lunch at Coach and Willy's (the BEST spinach artichoke dip in town, hands down)
- G. Sarah, Anabelle, and I drove to Chandler to check on her house. While we were there we ate at Floridino's (the BEST cookie dessert in town, hands down)
- We went to the Pumpkin Patch in North Scottsdale. Uncle Ash came with us and we had a blast! Hayden got to pet a bunch of animals, we took a hayride to pick out our pumpkins, and Hayden considered riding a horse.
- Matt and I had our first "date night" since Ellie was born. G. Sarah watched the girls and we got to celebrate a friend's birthday at Dave and Buster's. We bowled, had an adult beverage, and got to spend time with our friends. It was wonderful and much needed.
- G. Sarah fixed the following items in our house: our dryer exhaust, the lamp in our big screen tv, the towel rod in our guest bathroom, the garage door opener, the sensor on our outside lighting, the lamp in our bedroom, our blanket rack, our whiteboard, and the garbage disposal. She also put security locks on our front door and garage door (making them impossible for Hayden to open), filled up my gas tank, and had Matt's car washed and the oil changed. She's seriously amazing.
- On Sunday Matt made an amazing breakfast, complete with homemade waffles, bacon, and hash browns. We watched football, fixed stuff around the house, took a walk to the park, and ate chili for dinner.
So, while we didn't get to dress up and attend a wedding in Florida we still had a great weekend and we're so grateful that we got to spend it with Grandma Sarah. Click on the picture below to see all of the fun events from the weekend.
Months ago we booked a trip to Tampa for the wedding of Eric and Theresa. Matt went to college with Eric which meant we'd be getting together with some of our very best friends for the weekend. Plans were made to go to Burns (an amazing steakhouse in Tampa), we'd meet Stella (Vin and Sheila's daughter), and we'd celebrate Eric and Theresa's wedding. Matt and I would fly to Tampa with Anabelle while Hayden would have a weekend at home with Grandma Sarah. Needless to say, we were all very excited.
But, with Anabelle's recent health problems we decided to cancel the trip and stay close to home. We asked Grandma Sarah to come for the weekend anyway and stay with us. We've had a great time together and have gotten to do so many fun things.
- Anabelle, G. Sarah, and I met Matt at work and had lunch at Coach and Willy's (the BEST spinach artichoke dip in town, hands down)
- G. Sarah, Anabelle, and I drove to Chandler to check on her house. While we were there we ate at Floridino's (the BEST cookie dessert in town, hands down)
- We went to the Pumpkin Patch in North Scottsdale. Uncle Ash came with us and we had a blast! Hayden got to pet a bunch of animals, we took a hayride to pick out our pumpkins, and Hayden considered riding a horse.
- Matt and I had our first "date night" since Ellie was born. G. Sarah watched the girls and we got to celebrate a friend's birthday at Dave and Buster's. We bowled, had an adult beverage, and got to spend time with our friends. It was wonderful and much needed.
- G. Sarah fixed the following items in our house: our dryer exhaust, the lamp in our big screen tv, the towel rod in our guest bathroom, the garage door opener, the sensor on our outside lighting, the lamp in our bedroom, our blanket rack, our whiteboard, and the garbage disposal. She also put security locks on our front door and garage door (making them impossible for Hayden to open), filled up my gas tank, and had Matt's car washed and the oil changed. She's seriously amazing.
- On Sunday Matt made an amazing breakfast, complete with homemade waffles, bacon, and hash browns. We watched football, fixed stuff around the house, took a walk to the park, and ate chili for dinner.
So, while we didn't get to dress up and attend a wedding in Florida we still had a great weekend and we're so grateful that we got to spend it with Grandma Sarah. Click on the picture below to see all of the fun events from the weekend.
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| Weekend with Grandma Sarah |
Thursday, October 21, 2010
A Hail of a Day!
This is a post that I wrote a few weeks ago. I meant to post it and then got distracted and then we ended up in the hospital. So, here it is...
The weather here in Phoenix has been pretty unbearable lately. We've been having unseasonably high temperatures and we Phoenicians have been wondering just when our fall weather is going to appear. Well, we got our answer yesterday.
My mom, Anabelle and I were relaxing in the living room yesterday afternoon when we started hearing thunder. Then, it began to rain. Then, we had a hailstorm unlike any hailstorm I've ever seen in my entire life. Some of the hail was the size of golf balls and when it hit our pool it actually made it look like the pool was boiling. Wow, Mother Nature. Are you mad at Arizona or something??
Nonetheless, it was a pretty cool sight and we got plenty of video to document it. Matt thinks we should have sent it in to CNN. We also grabbed a few pieces of hail and stuck them in the freezer so Hayden could see it when she got home.
Watch the video below to see the storm.
The weather here in Phoenix has been pretty unbearable lately. We've been having unseasonably high temperatures and we Phoenicians have been wondering just when our fall weather is going to appear. Well, we got our answer yesterday.
My mom, Anabelle and I were relaxing in the living room yesterday afternoon when we started hearing thunder. Then, it began to rain. Then, we had a hailstorm unlike any hailstorm I've ever seen in my entire life. Some of the hail was the size of golf balls and when it hit our pool it actually made it look like the pool was boiling. Wow, Mother Nature. Are you mad at Arizona or something??
Nonetheless, it was a pretty cool sight and we got plenty of video to document it. Matt thinks we should have sent it in to CNN. We also grabbed a few pieces of hail and stuck them in the freezer so Hayden could see it when she got home.
Watch the video below to see the storm.
Wednesday, October 20, 2010
One Month
It's hard to believe that Anabelle is already one month old! The last month has flown by for us and her little face has already started changing so much. Here are some of Anabelle's changes and developments.
1. Her ears are no longer paper thin. When she was born her ears were so thin and flimsy. Matt and I laughed about it on several occasions and studied them because they didn't look real.
2. Her cheeks are starting to fill out which makes her look more like Hayden.
3. She is a very easy going baby and she rarely cries. Her biggest outbursts happen when she's hungry, we're in the car, and we're still 10 miles from our destination.
4. She likes napping and really enjoys napping curled up on the couch with Mommy or snuggled up on Daddy's chest.
5. Hayden adores her and is very (very) protective of her. Hayden refers to her as "My Ellie".
6. Anabelle smiles all the time. Melts our hearts.
7. She holds her head up pretty well. We haven't been giving her tummy time much (and didn't at all when we were in the hospital) so we'll be working on that more in the coming months.
8. She hasn't been gaining much weight lately. She lost some weight when she was at the hospital and is now at the same weight she was at 3 weeks ago. But, she's grown an inch and her head has grown so at least her brain is getting bigger. Ha!
9. She is the perfect addition to our family!
Here are some of our favorite pictures from the last month.
1. Her ears are no longer paper thin. When she was born her ears were so thin and flimsy. Matt and I laughed about it on several occasions and studied them because they didn't look real.
2. Her cheeks are starting to fill out which makes her look more like Hayden.
3. She is a very easy going baby and she rarely cries. Her biggest outbursts happen when she's hungry, we're in the car, and we're still 10 miles from our destination.
4. She likes napping and really enjoys napping curled up on the couch with Mommy or snuggled up on Daddy's chest.
5. Hayden adores her and is very (very) protective of her. Hayden refers to her as "My Ellie".
6. Anabelle smiles all the time. Melts our hearts.
7. She holds her head up pretty well. We haven't been giving her tummy time much (and didn't at all when we were in the hospital) so we'll be working on that more in the coming months.
8. She hasn't been gaining much weight lately. She lost some weight when she was at the hospital and is now at the same weight she was at 3 weeks ago. But, she's grown an inch and her head has grown so at least her brain is getting bigger. Ha!
9. She is the perfect addition to our family!
Here are some of our favorite pictures from the last month.
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| Month 1 |
Monday, October 18, 2010
Fall in Arizona
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| Cooler Weather |
Before the heat set in we got into a routine of going for nightly walks with Hayden. Well, with the cooler weather setting in we've been able to re-start that routine! We had our first fall walk on Oma's last night in town. Going for a walk after dinner makes Hayden so happy and it's a great excuse for us to get out for a little exercise after dinner. Click on the picture above to see pictures from our walk.
Sunday, October 17, 2010
Breaking Out!
Good morning! Yesterday was a hectic day so I didn't get the chance to let you know that we are back out of the hospital. Yay!
Anabelle was discharged yesterday morning at 11:30. We got the all-too-familiar discharge paperwork and were told not to come back. Believe me - we don't want to go back!
Upon our discharge we drove to Continental Golf Course and met Matt, Oma, and Hayden at Chip Drop. Chip Drop was the third and final event of Nite Flite 2010 and was put together as more of a family oriented event. (As a reminder, Matt was the chairman of Nite Flite, the fundraising event for the Scottsdale 20/30 club that Matt belongs to). The club had bouncy castles, a magician, a face painter, wonderful BBQ from Scottsdale BBQ company, and a 70-foot crane dropping thousands of poker chips for a chance to win 1 of 5 prizes.
Aside from it being a little warm outside (about 92 degrees) the event was a success. The kiddos had a fun time and our big kiddo especially had a great time. She had a lion painted on her face and she bounced her little heart out in the bouncy castle. And I was the happiest mama there because I got to see her having fun and I got to push my little one around in the stroller.
When we got home everyone took a nap while Matt watched college football. Then, last night we went to Oggy's for dinner so Oma could see Uncle Ashley. Dinner was delicious and it was nice to eat out at some place other than the hospital cafeteria. And Hayden was cracking us up with funny faces and trying to show Uncle Ashley her lion. He'd rush by our table and she'd say fast and loudly, "Uncle Ashley! Look at my lion!" It was hilarious.
Ellie had a good night sleep last night. When she got up this morning I listened to her heart again. I thought it sounded fast. I gave it a couple of minutes and checked it again and it sounded normal. So, either I'm going crazy (which is absolutely a possibility) or her medicine is doing its job. I guess either way I'm happy that her heart sounds normal this morning, that she's happily playing in the living room and Matt is making breakfast burritos in the kitchen. Life is good.
Click on the picture below to see pictures from the last few days.
Anabelle was discharged yesterday morning at 11:30. We got the all-too-familiar discharge paperwork and were told not to come back. Believe me - we don't want to go back!
Upon our discharge we drove to Continental Golf Course and met Matt, Oma, and Hayden at Chip Drop. Chip Drop was the third and final event of Nite Flite 2010 and was put together as more of a family oriented event. (As a reminder, Matt was the chairman of Nite Flite, the fundraising event for the Scottsdale 20/30 club that Matt belongs to). The club had bouncy castles, a magician, a face painter, wonderful BBQ from Scottsdale BBQ company, and a 70-foot crane dropping thousands of poker chips for a chance to win 1 of 5 prizes.
Aside from it being a little warm outside (about 92 degrees) the event was a success. The kiddos had a fun time and our big kiddo especially had a great time. She had a lion painted on her face and she bounced her little heart out in the bouncy castle. And I was the happiest mama there because I got to see her having fun and I got to push my little one around in the stroller.
When we got home everyone took a nap while Matt watched college football. Then, last night we went to Oggy's for dinner so Oma could see Uncle Ashley. Dinner was delicious and it was nice to eat out at some place other than the hospital cafeteria. And Hayden was cracking us up with funny faces and trying to show Uncle Ashley her lion. He'd rush by our table and she'd say fast and loudly, "Uncle Ashley! Look at my lion!" It was hilarious.
Ellie had a good night sleep last night. When she got up this morning I listened to her heart again. I thought it sounded fast. I gave it a couple of minutes and checked it again and it sounded normal. So, either I'm going crazy (which is absolutely a possibility) or her medicine is doing its job. I guess either way I'm happy that her heart sounds normal this morning, that she's happily playing in the living room and Matt is making breakfast burritos in the kitchen. Life is good.
Click on the picture below to see pictures from the last few days.
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| Chip Drop 2010 |
Friday, October 15, 2010
Back to Hospital
We are back in the hospital today. Ellie is stable and we hope to only be here over night but we could still use your love, thoughts, and prayers.
After we got home yesterday she did really well. She was sleeping and eating normally and we had a great night as a family. She got in some good snuggles with Oma, Uncle Ashley, and Daddy and Mommy got to have a big glass of red wine and a hot shower. It was also wonderful to see Hayden and play with her. Although, at the beginning of the evening she didn't want to have anything to do with me. I think she might have been a little mad at me.
Anyway, Anabelle slept well last night and woke up this morning around 8:00. I was nursing her and put my hand on her chest, just to check. I could feel her heartbeat which has previously been a sign that it was beating too fast. So we grabbed the stethoscope and Oma and I decided that her heartbeat was definitely too fast to count again.
We got Hayden ready for daycare, packed up my bag, and we jumped in the car. We dropped Hayden off and then Oma, Ellie, and I drove back to the E.R. We were lead back into Room 8 (same ER room we had last Thursday) and they put in her I.V. Her heart rate was over 250 bpm and it took two doses of the Adenosine to get her heart rate back down.
One of Dr. Papez's partners met with us and said that they'd be comfortable with us going home but that we would also be welcome to stay. Matt was still finishing up at work so he and I texted back and forth trying to decide what to do. The doctors said that they would fully support either decision we made but it was so hard knowing what the right decision was. I worried that if we stayed at the hospital she wouldn't have another episode and that if we went home she would and we'd have to turn around and drive back.
The nurse brought in an extra little dosage of Flecainide and we chatted more with Dr. Ellsworth. Ellie was fussy so I told him that I would feed her and then we'd be ready to be discharged. Within one minute (literally) she went into SVT again. I guess the decision was made for us.
So we were checked back into the PICU and hope to be checked out tomorrow. We're here hopefully just overnight and she will continue to take the increased dosage of Flecainide. Dr. Papez assured us that we have a lot of additional options if this increased dosage doesn't get the SVTs under control. However, he also said that her condition was the second most robust that he's had this year. Haha - Matt and I thought that was funny because she is quite obviously our kiddo. We also agreed that this will be the one time that we don't want her to be in first place.
She is sleeping soundly now and she and I are settling in for the night. We'll keep you posted as we learn more.
After we got home yesterday she did really well. She was sleeping and eating normally and we had a great night as a family. She got in some good snuggles with Oma, Uncle Ashley, and Daddy and Mommy got to have a big glass of red wine and a hot shower. It was also wonderful to see Hayden and play with her. Although, at the beginning of the evening she didn't want to have anything to do with me. I think she might have been a little mad at me.
Anyway, Anabelle slept well last night and woke up this morning around 8:00. I was nursing her and put my hand on her chest, just to check. I could feel her heartbeat which has previously been a sign that it was beating too fast. So we grabbed the stethoscope and Oma and I decided that her heartbeat was definitely too fast to count again.
We got Hayden ready for daycare, packed up my bag, and we jumped in the car. We dropped Hayden off and then Oma, Ellie, and I drove back to the E.R. We were lead back into Room 8 (same ER room we had last Thursday) and they put in her I.V. Her heart rate was over 250 bpm and it took two doses of the Adenosine to get her heart rate back down.
One of Dr. Papez's partners met with us and said that they'd be comfortable with us going home but that we would also be welcome to stay. Matt was still finishing up at work so he and I texted back and forth trying to decide what to do. The doctors said that they would fully support either decision we made but it was so hard knowing what the right decision was. I worried that if we stayed at the hospital she wouldn't have another episode and that if we went home she would and we'd have to turn around and drive back.
The nurse brought in an extra little dosage of Flecainide and we chatted more with Dr. Ellsworth. Ellie was fussy so I told him that I would feed her and then we'd be ready to be discharged. Within one minute (literally) she went into SVT again. I guess the decision was made for us.
So we were checked back into the PICU and hope to be checked out tomorrow. We're here hopefully just overnight and she will continue to take the increased dosage of Flecainide. Dr. Papez assured us that we have a lot of additional options if this increased dosage doesn't get the SVTs under control. However, he also said that her condition was the second most robust that he's had this year. Haha - Matt and I thought that was funny because she is quite obviously our kiddo. We also agreed that this will be the one time that we don't want her to be in first place.
She is sleeping soundly now and she and I are settling in for the night. We'll keep you posted as we learn more.
Thursday, October 14, 2010
There's No Place Like...
HOME! We got the okay to come home today! Hooray! We met with Dr. Papez this morning and he said that we were SVT free for 72+ hours so it was okay to bring our sweet girl home. Again I say, hooray!!We had another really great night last night with Ellie going as much as 3 hours between eating. It was so nice to be able to get some good sleep and be ready to pack up and come home today. She had to get one more EKG before we left but it came back normal. Our next appointment with Dr. Papez is scheduled for October 25th so we're hopeful we won't see him before that.
When I got her out of the car at the house today I realized that this is the THIRD time that we've welcomed her home from the hospital. I'm really hoping that the third time is the charm.
We have some settling in to do but wanted to let everyone know that we're home. We'll write more soon. xoxo
Wednesday, October 13, 2010
Today is almost over and the possibility of heading home is on the horizon. Anabelle is taking a little snooze before her 9:00 sponge bath and I'm thinking about our day today. Here are some of the "highlights".
1. When I posted earlier today I was pretty upset about not getting to go home yet. It felt like another set back, even though it wasn't. I think that I'm just so ready to sleep in my own bed, tuck in my kiddos, and snuggle with my husband. Being in the hospital for a few days has definitely made me really (really) appreciate all of those little things that we all sometimes take for granted.
2. A dear friend of mine, Summer, came to the hospital today for a visit. It was so great to see her and to get to introduce her to Anabelle. They had some good quality time together snuggling and we caught up on each others lives. It was a wonderful visit and it was nice to feel a little bit normal. Plus, Anabelle adored Summer. She was awake the entire time she was here, gave her a bunch of little smiles, and got fussy when Summer said she had to leave. Thank you for visiting Sum!
3. Last night and tonight we have one of the sweetest nurses. Her name is Megan and she's the kind of gal that you want to have watching over your child. Last night she went through the monitor with me and explained everything (where was she on night #1?). At one point she also heard Ellie crying and came in to soothe her back to sleep so that I didn't have to get up with her. Turns out that Ellie was hungry and I did get up but I was so grateful for those extra five minutes on my couch. Then during the day today we also had a wonderful nurse, Shelley. She also thought that we were going home today and I could tell that she was disappointed for us. She gave us a huge bag full of medicine droppers to use when we're at home and took the time to explain the dosage amounts and how to ensure we'd be giving the proper amounts. It's been great to have compassionate, knowledgeable and loving nurses.
4. We had another scare today. Matt was here for his daily visit. Oma was holding Ellie and patting her back after she ate, trying to get her to burp. For some reason the patting set off the heart rate alarm. I immediately looked at the screen, jumped up and started yelling "no! no! no!" Her heart rate was over 250 which indicated that she was back in SVT. Matt was right behind me and within seconds the nurse was in our room. She said that she thought that it was just the patting on the back that caused the monitor to go off. She said she would go and check on the main monitor to confirm. Then she very sincerely said, "it'll be okay. I'll go and check it. It'll be okay mom." I could tell that she wanted to give me a big hug. Needless to say, I lost it and started crying. I just feel like we're so close and that this medicine seems to be working so to see that on our "last day" broke my heart. But when she came back she confirmed that it probably wasn't SVT and that everything was okay. Matt and Oma both gave me big hugs but it still shook me up.
5. On a much lighter note - Damn you hospital food! I have had THREE pieces of German chocolate cake in the past TWO days. So much for trying to take off some of the pregnancy weight. But, the nurses keep reminding me to eat so that Ellie will nurse well. So I guess that all of that cake is good for me then, right?! Hmmm, come to think of it, I guess that would be on a much heavier note...
6. I can't wait to get home to my DVR. I watched Two and a Half Men tonight on television. How is that show still on? I actually watched two episodes and didn't laugh one time. It's seriously bad television. Do other people like it? Is it just me??
7. We continue to receive emails, Facebook messages, texts, and phone calls. THANK YOU, THANK YOU, THANK YOU. You are all helping to keep me sane.
8. I had some free time today so I changed up our website a little bit. Hope you enjoy it! :) Click below to see some pictures from today.
1. When I posted earlier today I was pretty upset about not getting to go home yet. It felt like another set back, even though it wasn't. I think that I'm just so ready to sleep in my own bed, tuck in my kiddos, and snuggle with my husband. Being in the hospital for a few days has definitely made me really (really) appreciate all of those little things that we all sometimes take for granted.
2. A dear friend of mine, Summer, came to the hospital today for a visit. It was so great to see her and to get to introduce her to Anabelle. They had some good quality time together snuggling and we caught up on each others lives. It was a wonderful visit and it was nice to feel a little bit normal. Plus, Anabelle adored Summer. She was awake the entire time she was here, gave her a bunch of little smiles, and got fussy when Summer said she had to leave. Thank you for visiting Sum!
3. Last night and tonight we have one of the sweetest nurses. Her name is Megan and she's the kind of gal that you want to have watching over your child. Last night she went through the monitor with me and explained everything (where was she on night #1?). At one point she also heard Ellie crying and came in to soothe her back to sleep so that I didn't have to get up with her. Turns out that Ellie was hungry and I did get up but I was so grateful for those extra five minutes on my couch. Then during the day today we also had a wonderful nurse, Shelley. She also thought that we were going home today and I could tell that she was disappointed for us. She gave us a huge bag full of medicine droppers to use when we're at home and took the time to explain the dosage amounts and how to ensure we'd be giving the proper amounts. It's been great to have compassionate, knowledgeable and loving nurses.
4. We had another scare today. Matt was here for his daily visit. Oma was holding Ellie and patting her back after she ate, trying to get her to burp. For some reason the patting set off the heart rate alarm. I immediately looked at the screen, jumped up and started yelling "no! no! no!" Her heart rate was over 250 which indicated that she was back in SVT. Matt was right behind me and within seconds the nurse was in our room. She said that she thought that it was just the patting on the back that caused the monitor to go off. She said she would go and check on the main monitor to confirm. Then she very sincerely said, "it'll be okay. I'll go and check it. It'll be okay mom." I could tell that she wanted to give me a big hug. Needless to say, I lost it and started crying. I just feel like we're so close and that this medicine seems to be working so to see that on our "last day" broke my heart. But when she came back she confirmed that it probably wasn't SVT and that everything was okay. Matt and Oma both gave me big hugs but it still shook me up.
5. On a much lighter note - Damn you hospital food! I have had THREE pieces of German chocolate cake in the past TWO days. So much for trying to take off some of the pregnancy weight. But, the nurses keep reminding me to eat so that Ellie will nurse well. So I guess that all of that cake is good for me then, right?! Hmmm, come to think of it, I guess that would be on a much heavier note...
6. I can't wait to get home to my DVR. I watched Two and a Half Men tonight on television. How is that show still on? I actually watched two episodes and didn't laugh one time. It's seriously bad television. Do other people like it? Is it just me??
7. We continue to receive emails, Facebook messages, texts, and phone calls. THANK YOU, THANK YOU, THANK YOU. You are all helping to keep me sane.
8. I had some free time today so I changed up our website a little bit. Hope you enjoy it! :) Click below to see some pictures from today.
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| Anabelle at Hospital - Day 4 |
Day 4
Good morning everyone! We have some good news and some not as good news today.
The good news is that Anabelle had a great night last night. No SVT and she slept and ate really well. She even had a sleeping stretch of 3.5 hours. Hooray!
The not as good news is that we aren't going home today after all. The cardiologist wants to monitor her for 72 hours (following her last SVT) which won't be until the wee hours of tomorrow morning. So, as long as she has a good day today and an uneventful night tonight we can go home tomorrow.
I would be lying if I said I wasn't disappointed to hear this. The nurses have been telling us that it would be some time today. The doctor did say that we could go home today if we want to but that he likes to monitor little babies for 72 hours. At this point it would be silly for us to leave today when staying an extra day for monitoring could hopefully mean that we don't have to come back again any time soon.
So, we're going to try and make the most of the day today and look forward to hopefully being able to go home tomorrow morning!
Thanks to everyone for the comments and thoughts!
The good news is that Anabelle had a great night last night. No SVT and she slept and ate really well. She even had a sleeping stretch of 3.5 hours. Hooray!
The not as good news is that we aren't going home today after all. The cardiologist wants to monitor her for 72 hours (following her last SVT) which won't be until the wee hours of tomorrow morning. So, as long as she has a good day today and an uneventful night tonight we can go home tomorrow.
I would be lying if I said I wasn't disappointed to hear this. The nurses have been telling us that it would be some time today. The doctor did say that we could go home today if we want to but that he likes to monitor little babies for 72 hours. At this point it would be silly for us to leave today when staying an extra day for monitoring could hopefully mean that we don't have to come back again any time soon.
So, we're going to try and make the most of the day today and look forward to hopefully being able to go home tomorrow morning!
Thanks to everyone for the comments and thoughts!
Tuesday, October 12, 2010
Day 3
We had a really good night in the hospital last night. Both Anabelle and I got some sleep and she ate really well. We are hoping for a repeat performance tonight! We also had a good day today and are happy to report that Anabelle hasn't had any SVT episodes since Sunday night! Yay! For the time being it seems like the medicine is working well for our little lady.
At about 5:30 this morning we had a small scare. The nurse came in to weigh her and she came up as 7.14 pounds. I told her that the scale must be wrong because just two days ago she weighed 9.7 pounds (not to mention she weighed 8.11 when she was born). We tried a few more times with the same results so she said that she would mention it to the doctor. Later this morning when we met with Dr. Papez I asked him about her weight and told him that it seemed too low. I also mentioned that Anabelle has been spitting up more than usual as well. He looked concerned and said that she shouldn't be losing that much weight. He asked the nurse to weigh her again using a different scale. Glad that we did because the first scale was wrong. The second scale was much more accurate. It did show that she has lost some weight over the last few days but not 2 pounds. Whew! Afton reminded me that every time Anabelle had an SVT episode it was like Ellie was running a marathon so it makes sense that she's lost a little weight. As long as she's still eating (and having dirty diapers) a little weight loss is okay.
Dr. Papez also told us that as long as she doesn't have any more SVT episodes tonight or tomorrow we can go home. So, please keep your fingers crossed for us to have a good (quiet) night tonight so we can get the okay to leave the hospital tomorrow.
Oma (my mom) came in for another visit today and brought "Omar the Giraffe" for Ellie. She also hung out with Ellie so I could take a shower in the family center. PCH really does a great job making parents comfortable. The family center has two showers and a washer and dryer. The shower felt great and I was happy knowing that I was just right down the hall from Ellie. And, for those of you wondering, I DID keep my flip flops on in the shower. :)
Matt came by this afternoon to pick up Oma and to spend a little time with Ellie. Ellie was very alert and smiley while he was holding her. I know that he has such a hard time being away from her all day so it's great that he can spend some time with her before they have to leave to pick up Hayden at daycare.
Hayden seems to be doing okay but seems to be having a tougher time each day. This morning Matt went in her room to wake her up. Oma said something to Matt from the hallway and Hayden said, "Mommy?!" Oma answered her from the hallway, "No sweetie. It's not Mommy, it's Oma." Hayden said again, "Mommy?!" So, Oma walked into her room and upon seeing Oma, Hayden flopped herself down in her crib two-year old tantrum style. Oma said that her heart just broke. Mine did too when she told me the story. It's so hard being away from my big girl. But I am so glad that my mom is still in town and can spoil her with grandma love while I'm gone.
Ms. Anabelle is sound asleep for the time being but will get a nice warm sponge bath her soon. I'm going to rest for a bit until then so click on the picture below to see more pictures from today.
At about 5:30 this morning we had a small scare. The nurse came in to weigh her and she came up as 7.14 pounds. I told her that the scale must be wrong because just two days ago she weighed 9.7 pounds (not to mention she weighed 8.11 when she was born). We tried a few more times with the same results so she said that she would mention it to the doctor. Later this morning when we met with Dr. Papez I asked him about her weight and told him that it seemed too low. I also mentioned that Anabelle has been spitting up more than usual as well. He looked concerned and said that she shouldn't be losing that much weight. He asked the nurse to weigh her again using a different scale. Glad that we did because the first scale was wrong. The second scale was much more accurate. It did show that she has lost some weight over the last few days but not 2 pounds. Whew! Afton reminded me that every time Anabelle had an SVT episode it was like Ellie was running a marathon so it makes sense that she's lost a little weight. As long as she's still eating (and having dirty diapers) a little weight loss is okay.
Dr. Papez also told us that as long as she doesn't have any more SVT episodes tonight or tomorrow we can go home. So, please keep your fingers crossed for us to have a good (quiet) night tonight so we can get the okay to leave the hospital tomorrow.
Oma (my mom) came in for another visit today and brought "Omar the Giraffe" for Ellie. She also hung out with Ellie so I could take a shower in the family center. PCH really does a great job making parents comfortable. The family center has two showers and a washer and dryer. The shower felt great and I was happy knowing that I was just right down the hall from Ellie. And, for those of you wondering, I DID keep my flip flops on in the shower. :)
Matt came by this afternoon to pick up Oma and to spend a little time with Ellie. Ellie was very alert and smiley while he was holding her. I know that he has such a hard time being away from her all day so it's great that he can spend some time with her before they have to leave to pick up Hayden at daycare.
Hayden seems to be doing okay but seems to be having a tougher time each day. This morning Matt went in her room to wake her up. Oma said something to Matt from the hallway and Hayden said, "Mommy?!" Oma answered her from the hallway, "No sweetie. It's not Mommy, it's Oma." Hayden said again, "Mommy?!" So, Oma walked into her room and upon seeing Oma, Hayden flopped herself down in her crib two-year old tantrum style. Oma said that her heart just broke. Mine did too when she told me the story. It's so hard being away from my big girl. But I am so glad that my mom is still in town and can spoil her with grandma love while I'm gone.
Ms. Anabelle is sound asleep for the time being but will get a nice warm sponge bath her soon. I'm going to rest for a bit until then so click on the picture below to see more pictures from today.
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| Anabelle at Hospital - Day 3 |
Monday, October 11, 2010
Good night everyone! Thanks for all of the emails, texts, phone calls, Facebook messages, love, thoughts and prayers. I just had dinner, "played with mommy", and now it's time for bed! Love, AnabelleWish us luck tonight that we don't have any SVT episodes and that we wake up tomorrow refreshed. I had a nice night with Ellie tonight. After she ate we "played" and I sang her "You are my Sunshine". She gave me a couple of really big smiles. I refuse to think that it was just gas. :)
Day 2
We had a long night in the PICU last night. Anabelle didn't want to nurse for long so she woke up more than usual throughout the night. Therefore, she had one tired mama today. My mom came to the hospital today and hung out with Anabelle and let me sleep. I know I missed a few phone calls and texts today so if I did miss you and you want to try again tomorrow, please do.
Ellie had two SVT episodes in the middle of the night last night. They let the episodes go for 20 minutes with the hope that she'll come out of it. When she doesn't they administer the Adenosine and she usually comes out pretty quickly. Our hope with the medicine that she's on is that it will maintain control over the SVT and they will be less frequent and easier for her to come out of.
Her cardiologist, Dr. Papez, came by again today and answered a bunch of my questions. He's been wonderful and is really reassuring. Here are some of my questions and his answers:
1. Why does she continue to have the SVT episodes?
We are still looking for the right drug or drug combination to get them and the WPW under control. Plus, the WPW is more robust than we originally thought so we're having to try stronger and stronger medicines to keep it under control. Once we do find the right medicine we hope that the SVT will occur far less often. He also mentioned that he had a kiddo in PICU a few weeks ago that also had SVT and it took them two weeks to find the right combination.
2. How long will we be in the hospital?
Once new medication (or increased doses) begin they require that we stay in the hospital for three days for monitoring. Best case scenario is that her current dose of Flecainide is exactly what she needs, she doesn't have any more SVT and we can be discharged this Wednesday. If she continues to have episodes he will change the dosage of Flecainide and the three day time table starts over.
3. Why do we have to stay 3 days with new medicine?
The medicine that we are trying is more powerful and therefore has a risk of side effects. The side effects of Flecainide are arrhythmias that would be worse than what she currently has. However, they typically appear within the first three days of receiving the medicine so they want to monitor her closely to watch for those possible new arrhythmias.
4. Why can't we just do the surgical procedure that would remove the WPW?
Her heart is really small and the WPW is on the left side. This means that they would have to go through the right side and the chamber wall to get to it. The catheter that they use isn't much smaller than her valve and therefore makes it really risky. Dr. Papez said that we still have a LOT of options between where we are now and needing to do surgery and that surgery is typically the last option before needing a heart transplant.
Keep your fingers crossed for a restful and quiet night!
Ellie had two SVT episodes in the middle of the night last night. They let the episodes go for 20 minutes with the hope that she'll come out of it. When she doesn't they administer the Adenosine and she usually comes out pretty quickly. Our hope with the medicine that she's on is that it will maintain control over the SVT and they will be less frequent and easier for her to come out of.
Her cardiologist, Dr. Papez, came by again today and answered a bunch of my questions. He's been wonderful and is really reassuring. Here are some of my questions and his answers:
1. Why does she continue to have the SVT episodes?
We are still looking for the right drug or drug combination to get them and the WPW under control. Plus, the WPW is more robust than we originally thought so we're having to try stronger and stronger medicines to keep it under control. Once we do find the right medicine we hope that the SVT will occur far less often. He also mentioned that he had a kiddo in PICU a few weeks ago that also had SVT and it took them two weeks to find the right combination.
2. How long will we be in the hospital?
Once new medication (or increased doses) begin they require that we stay in the hospital for three days for monitoring. Best case scenario is that her current dose of Flecainide is exactly what she needs, she doesn't have any more SVT and we can be discharged this Wednesday. If she continues to have episodes he will change the dosage of Flecainide and the three day time table starts over.
3. Why do we have to stay 3 days with new medicine?
The medicine that we are trying is more powerful and therefore has a risk of side effects. The side effects of Flecainide are arrhythmias that would be worse than what she currently has. However, they typically appear within the first three days of receiving the medicine so they want to monitor her closely to watch for those possible new arrhythmias.
4. Why can't we just do the surgical procedure that would remove the WPW?
Her heart is really small and the WPW is on the left side. This means that they would have to go through the right side and the chamber wall to get to it. The catheter that they use isn't much smaller than her valve and therefore makes it really risky. Dr. Papez said that we still have a LOT of options between where we are now and needing to do surgery and that surgery is typically the last option before needing a heart transplant.
Keep your fingers crossed for a restful and quiet night!
Sunday, October 10, 2010
One Tough Cookie
Click on the picture below to see some of the pictures we've taken since Thursday.
One thing that we've noticed with Anabelle over the last couple of days is that even when she's in the middle of an SVT episode she still looks like a totally normal baby. She's typically very relaxed and usually sleeps through most of it, even though her heart is racing as though she's running in a marathon. She's still such a good baby. She cries when she's hungry but is otherwise very happy and mellow.
Matt brought Hayden in today for a visit. She did really well and was very well behaved (especially for a two year old). We've been really honest with her and trying to tell as much as we can about what's going on with Ellie. At one point Ellie started crying (while the nurse was examining her) and Hayden's voice and face were very panicked. She wanted to know what was going on! I picked her up and stood right next to Ellie. I told her that Ellie was sick and that the nurse was helping to make her feel better. She seemed to accept that explanation. She was also very sweet and wanted to give her kisses and hugs before she left.
The new medicine that Anabelle is on seems to be working pretty well so far (knock on wood). She hasn't had an episode since this afternoon so we'll see how she does through the night.
We will post more soon. Thanks to everyone for your love and support!
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| Anabelle at Hospital |
One thing that we've noticed with Anabelle over the last couple of days is that even when she's in the middle of an SVT episode she still looks like a totally normal baby. She's typically very relaxed and usually sleeps through most of it, even though her heart is racing as though she's running in a marathon. She's still such a good baby. She cries when she's hungry but is otherwise very happy and mellow.
Matt brought Hayden in today for a visit. She did really well and was very well behaved (especially for a two year old). We've been really honest with her and trying to tell as much as we can about what's going on with Ellie. At one point Ellie started crying (while the nurse was examining her) and Hayden's voice and face were very panicked. She wanted to know what was going on! I picked her up and stood right next to Ellie. I told her that Ellie was sick and that the nurse was helping to make her feel better. She seemed to accept that explanation. She was also very sweet and wanted to give her kisses and hugs before she left.
The new medicine that Anabelle is on seems to be working pretty well so far (knock on wood). She hasn't had an episode since this afternoon so we'll see how she does through the night.
We will post more soon. Thanks to everyone for your love and support!
Back at the Hospital
First - thank you all so much for the wonderful emails and phone calls that we've gotten over the last 24 hours. It means so much to us to know that we're in your thoughts and prayers.
Second, we are back in the hospital with Anabelle. She is still doing well but the cardiologist is working on finding the right combination of drugs for her to take to keep the SVT episodes under control.
For the past eight months Matt has been organizing an event that his charity event hosts every year called Nite Flite. This year he is chairman of the committee that organizes this event. The gala was last night and he was setting up for it all day. We decided that it would be good for me to get out of the house and attend the event so I packed a bag for me, Hayden, and Anabelle and my mom and I were ready to drive to the hotel near the event last night.
At about 5:30 we gave Hayden dinner before our "trip". I picked up Anabelle and I noticed that her feet were pretty cold again. I pulled out the stethoscope we got at the hospital and her heart beat seemed fast. I had my mom listen to it too and she also thought it sounded fast so we called Aunt Afton. She and my brother came over (dressed to attend the gala as well). Afton listened to Anabelle's heartbeat and also thought it was fast and we decided that she was probably in SVT.
With SVT we were told to try and bring her out of it before driving to the hospital. One way to bring her out is place a bag of ice over her face for 10-15 seconds. This causes her brain to think that she is drowning and will help slow down her heart rate. I held her little face and Afton administered the ice treatment. I know that Anabelle won't remember us doing that to her but both Afton and I will. It's an awful feeling. My mom and Ashley kept Hayden entertained in the other room as we did this and I felt so bad for her. She knew something was wrong. One minute we were going on a "trip" and the next minute she's being kept in the other room. She was worried about her little sister! We did the ice treatment about 5-6 times and then I called the cardiologist's on call nurse. She recommended we give her the next dose of medicine early, wait 30 minutes, and then do the ice treatment again if the medicine didn't work. We did that, tried the ice treatment three times, and then the nurse told us to drive back to Phoenix Children's Hospital.
My mom stayed with Hayden at the house and Ellie and I packed up and drove downtown. I called Matt and he left the event to meet us at the hospital. The E.R. doctors were waiting for us and got an IV put in really quickly. They gave her one ice treatment and then gave her a dose of Adenosine (the same medicine they gave her on Thursday). It again took two doses of Adenosine and her heart rate came back down. Matt walked into the room in his black suit and looked out of place, but so handsome! :) They moved us into a recovery room and told us we could go home. About 20 minutes later she went back into SVT. They moved us back into the other room, gave her Adenosine and her heart rate came down. 15 minutes later she had another SVT episode which was fixed with Adenosine. 30 minutes later another SVT episode that was fixed with Adenosine. Each time her heart rate would lower to 95-100 and then jump up to 220.
They were finally able to move us back into the PICU and we got our "old room" back. It was harder to walk into the room this time than it was last time. Part of me wishes that we never went home because coming back here feels like a set back. Matt and I hung out until about 1:00 and then he drove home and I went to sleep for the night. She had two more SVT episodes overnight and has had 3 today so far. The cardiologist had started us out on the first tier of medicine a few days ago, moved her to the second tier last night and we're trying a third tier now. He said that it's a matter of finding the right medicine now to maintain her accessory pathway and to keep the SVT under control. She will continue to have SVT episodes but we'll hopefully find medicine that will help pull her back out of SVT (instead of requiring the Adenosine at the E.R.)
The medicine that she's on now is called Flecainide and it may actually cause additional arrhythmias. So we will be in the hospital for at least another three days while they monitor how she does on the Flecainide.
Second, we are back in the hospital with Anabelle. She is still doing well but the cardiologist is working on finding the right combination of drugs for her to take to keep the SVT episodes under control.
For the past eight months Matt has been organizing an event that his charity event hosts every year called Nite Flite. This year he is chairman of the committee that organizes this event. The gala was last night and he was setting up for it all day. We decided that it would be good for me to get out of the house and attend the event so I packed a bag for me, Hayden, and Anabelle and my mom and I were ready to drive to the hotel near the event last night.
At about 5:30 we gave Hayden dinner before our "trip". I picked up Anabelle and I noticed that her feet were pretty cold again. I pulled out the stethoscope we got at the hospital and her heart beat seemed fast. I had my mom listen to it too and she also thought it sounded fast so we called Aunt Afton. She and my brother came over (dressed to attend the gala as well). Afton listened to Anabelle's heartbeat and also thought it was fast and we decided that she was probably in SVT.
With SVT we were told to try and bring her out of it before driving to the hospital. One way to bring her out is place a bag of ice over her face for 10-15 seconds. This causes her brain to think that she is drowning and will help slow down her heart rate. I held her little face and Afton administered the ice treatment. I know that Anabelle won't remember us doing that to her but both Afton and I will. It's an awful feeling. My mom and Ashley kept Hayden entertained in the other room as we did this and I felt so bad for her. She knew something was wrong. One minute we were going on a "trip" and the next minute she's being kept in the other room. She was worried about her little sister! We did the ice treatment about 5-6 times and then I called the cardiologist's on call nurse. She recommended we give her the next dose of medicine early, wait 30 minutes, and then do the ice treatment again if the medicine didn't work. We did that, tried the ice treatment three times, and then the nurse told us to drive back to Phoenix Children's Hospital.
My mom stayed with Hayden at the house and Ellie and I packed up and drove downtown. I called Matt and he left the event to meet us at the hospital. The E.R. doctors were waiting for us and got an IV put in really quickly. They gave her one ice treatment and then gave her a dose of Adenosine (the same medicine they gave her on Thursday). It again took two doses of Adenosine and her heart rate came back down. Matt walked into the room in his black suit and looked out of place, but so handsome! :) They moved us into a recovery room and told us we could go home. About 20 minutes later she went back into SVT. They moved us back into the other room, gave her Adenosine and her heart rate came down. 15 minutes later she had another SVT episode which was fixed with Adenosine. 30 minutes later another SVT episode that was fixed with Adenosine. Each time her heart rate would lower to 95-100 and then jump up to 220.
They were finally able to move us back into the PICU and we got our "old room" back. It was harder to walk into the room this time than it was last time. Part of me wishes that we never went home because coming back here feels like a set back. Matt and I hung out until about 1:00 and then he drove home and I went to sleep for the night. She had two more SVT episodes overnight and has had 3 today so far. The cardiologist had started us out on the first tier of medicine a few days ago, moved her to the second tier last night and we're trying a third tier now. He said that it's a matter of finding the right medicine now to maintain her accessory pathway and to keep the SVT under control. She will continue to have SVT episodes but we'll hopefully find medicine that will help pull her back out of SVT (instead of requiring the Adenosine at the E.R.)
The medicine that she's on now is called Flecainide and it may actually cause additional arrhythmias. So we will be in the hospital for at least another three days while they monitor how she does on the Flecainide.
Anabelle's Heart
Earlier this week we found out that Anabelle has a heart condition. We sent out an email to friends and family to let them know what had happened:
On Thursday morning I got up at 5:00 because she was more fussy than normal. When I changed her diaper I noticed that her feet were ice cold. I put a pair of socks on under her jammies, bundled her back up, added a little hat, and put her back to bed. When she woke up later around 9:00 she was still fussy and didn't want to eat much. Her diaper was also dry. I checked her feet again and they were still ice cold. My mom suggested that we take her temperature and when we did it was only 93 degrees. We tried a different thermometer and got another low reading.
I called the pediatrician to get their opinion and left a message for someone to call us back. Then we called my wonderful sister-in-law Afton. She's in her fourth year of medical school. She decided to come over and take a look at her. When she arrived she listened to Anabelle's heart with her stethoscope and said that her heart was beating too fast to count. She said that we should take her to our pediatrician to have her looked at so she and I drove there together. My mom is in town so she was able to stay at the house with Hayden. The pediatrician also heard her fast heart rate and suggested I try and feed her to see if that would help calm her down. When that didn't work she immediately recommended that we take her downtown to Phoenix Children's Hospital. She called ahead and told the ER to expect us and we called Matt and asked him to meet us there.
When we arrived Afton dropped us off and I went inside with Anabelle. I expected to have to wait in the waiting room, but they put a heart rate monitor on Anabelle in the waiting room. Her heart rate was 250 bpm and the nurses said that they thought the reading was wrong. But then they immediately ushered us into a room. Within a few minutes the small room was crowded with 8 doctors and nurses (plus me and Afton) and they all had their hands on Anabelle. There were an additional 5-6 people crowded around the door outside of our room as well. The doctor told us that her heart was beating too fast and that they were trying to slow it down. They tried to get her heart rate down with an ice treatment and Matt walked into the room at that point. When that didn't work they used an IV to push medicine into her heart. The medicine made her heart stop for a couple of seconds and when it restarted it was slower. They had to do this twice before her heart returned to a more normal rate.
Once she was stabilized they took an x-ray, did an EKG, and then an ultrasound of her heart. We met with the cardiologist and he said that she had supraventricular tachycardia (SVT). After additional testing they determined that she has an accessory pathway in her heart and she has "Wolff-Parinson-White syndrome" (WPW). (About 30 minutes before we met with the cardiologist Afton said that she thought that Anabelle might have had SVT and that she may also have WPW. She did a great job of explaining what that meant and she also drew us pictures to help us better understand exactly what was going on in Anabelle's heart).
They decided to admit Anabelle into the ICU to continue to monitor her and to start her on medication. Walking into the ICU was so hard because it was full of other kiddos that also had heart problems. I stayed the night with her there and she did very well overnight. Her breathing became more normal and her heart rate stayed low. I was also able to nurse her again which was so nice. Granted, she was hooked up to a bunch of machines and wires but it was great to be able to snuggle with her.
My mom and Afton came back to the hospital on Friday morning and then Matt joined us at 1:00. We met with another cardiologist that afternoon and he further explained WPW to us. He said that Anabelle will have to be on medication for at least a year and we will meet with him for check ups. He said that the accessory pathway could go away by the time that she's two and if it does then she shouldn't have any additional issues. In the meantime though she could go back into SVT. If she does go back into SVT we have a few methods that we can try to get her out of it before we would have to take her back to the hospital.
What does this all mean? Well, he said that if she goes back into SVT it's more of annoyance than an emergency. He gave us a list of things to watch for and also gave us a stethoscope so we can check her heart rate if we're worried that she's having another episode. She is now taking Propranolol three times a day and will continue that until she's one.
So, we came home last night (Friday) and have been trying to settle back into our regular routine (well, our NEW regular routine). We feel so fortunate that this heart condition is treatable and that it's something that she could even possibly grow out of. We are also so fortunate to have such wonderful family and friends that were sending us love, thoughts and prayers. It all happened so quickly that we didn't have a lot of time to let everyone know what was going on so we appreciate your love, thoughts and prayers even now. :)
We wanted you all to know what's going on and because it's such a long story thought that it might be easier to email everyone. But, please don't hesitate to call or email us if you have questions or want to know more. We would love to hear from you.
On Thursday morning I got up at 5:00 because she was more fussy than normal. When I changed her diaper I noticed that her feet were ice cold. I put a pair of socks on under her jammies, bundled her back up, added a little hat, and put her back to bed. When she woke up later around 9:00 she was still fussy and didn't want to eat much. Her diaper was also dry. I checked her feet again and they were still ice cold. My mom suggested that we take her temperature and when we did it was only 93 degrees. We tried a different thermometer and got another low reading.
I called the pediatrician to get their opinion and left a message for someone to call us back. Then we called my wonderful sister-in-law Afton. She's in her fourth year of medical school. She decided to come over and take a look at her. When she arrived she listened to Anabelle's heart with her stethoscope and said that her heart was beating too fast to count. She said that we should take her to our pediatrician to have her looked at so she and I drove there together. My mom is in town so she was able to stay at the house with Hayden. The pediatrician also heard her fast heart rate and suggested I try and feed her to see if that would help calm her down. When that didn't work she immediately recommended that we take her downtown to Phoenix Children's Hospital. She called ahead and told the ER to expect us and we called Matt and asked him to meet us there.
When we arrived Afton dropped us off and I went inside with Anabelle. I expected to have to wait in the waiting room, but they put a heart rate monitor on Anabelle in the waiting room. Her heart rate was 250 bpm and the nurses said that they thought the reading was wrong. But then they immediately ushered us into a room. Within a few minutes the small room was crowded with 8 doctors and nurses (plus me and Afton) and they all had their hands on Anabelle. There were an additional 5-6 people crowded around the door outside of our room as well. The doctor told us that her heart was beating too fast and that they were trying to slow it down. They tried to get her heart rate down with an ice treatment and Matt walked into the room at that point. When that didn't work they used an IV to push medicine into her heart. The medicine made her heart stop for a couple of seconds and when it restarted it was slower. They had to do this twice before her heart returned to a more normal rate.
Once she was stabilized they took an x-ray, did an EKG, and then an ultrasound of her heart. We met with the cardiologist and he said that she had supraventricular tachycardia (SVT). After additional testing they determined that she has an accessory pathway in her heart and she has "Wolff-Parinson-White syndrome" (WPW). (About 30 minutes before we met with the cardiologist Afton said that she thought that Anabelle might have had SVT and that she may also have WPW. She did a great job of explaining what that meant and she also drew us pictures to help us better understand exactly what was going on in Anabelle's heart).
They decided to admit Anabelle into the ICU to continue to monitor her and to start her on medication. Walking into the ICU was so hard because it was full of other kiddos that also had heart problems. I stayed the night with her there and she did very well overnight. Her breathing became more normal and her heart rate stayed low. I was also able to nurse her again which was so nice. Granted, she was hooked up to a bunch of machines and wires but it was great to be able to snuggle with her.
My mom and Afton came back to the hospital on Friday morning and then Matt joined us at 1:00. We met with another cardiologist that afternoon and he further explained WPW to us. He said that Anabelle will have to be on medication for at least a year and we will meet with him for check ups. He said that the accessory pathway could go away by the time that she's two and if it does then she shouldn't have any additional issues. In the meantime though she could go back into SVT. If she does go back into SVT we have a few methods that we can try to get her out of it before we would have to take her back to the hospital.
What does this all mean? Well, he said that if she goes back into SVT it's more of annoyance than an emergency. He gave us a list of things to watch for and also gave us a stethoscope so we can check her heart rate if we're worried that she's having another episode. She is now taking Propranolol three times a day and will continue that until she's one.
So, we came home last night (Friday) and have been trying to settle back into our regular routine (well, our NEW regular routine). We feel so fortunate that this heart condition is treatable and that it's something that she could even possibly grow out of. We are also so fortunate to have such wonderful family and friends that were sending us love, thoughts and prayers. It all happened so quickly that we didn't have a lot of time to let everyone know what was going on so we appreciate your love, thoughts and prayers even now. :)
We wanted you all to know what's going on and because it's such a long story thought that it might be easier to email everyone. But, please don't hesitate to call or email us if you have questions or want to know more. We would love to hear from you.
Monday, October 4, 2010
A Fortnight
Anabelle is two weeks old today. It's hard to believe that it's only been two weeks since we welcomed her into our family. In a way it feels like she's always been a part of our family.
She is such a good baby. She hardly ever cries but prefers to grunt. It's ridiculously cute and hard to resist. She has given us a few really great stretches of sleep at night (sometimes as many as 4 or 5 hours) and has also really started waking up more during the day. She isn't awake for long during the day but she seems very interested in stuff when she is.
Her right eye had a plugged tear duct that was causing her to have some serious eye boogies. When she woke up on Saturday morning it looked like she had been hit in the eye because it was so swollen and red. I took her to the pediatrician and he massaged her eye, which really seemed to help. We're keeping an eye on it (haha) but it's starting to look a lot better already.
Hayden has been really great with her. She always wants to know where Anabelle is and what she's doing. She loves to kiss her and hug her and has even shared her toys with her. She goes through moments where she acts out and wants "my mommy, my daddy" but overall she has really welcomed Anabelle into our world.
Thank you to everyone that has called, emailed, stopped by with food, and sent gifts. We are so appreciative of the love and support! Click on the picture below to view recent pictures.
She is such a good baby. She hardly ever cries but prefers to grunt. It's ridiculously cute and hard to resist. She has given us a few really great stretches of sleep at night (sometimes as many as 4 or 5 hours) and has also really started waking up more during the day. She isn't awake for long during the day but she seems very interested in stuff when she is.
Her right eye had a plugged tear duct that was causing her to have some serious eye boogies. When she woke up on Saturday morning it looked like she had been hit in the eye because it was so swollen and red. I took her to the pediatrician and he massaged her eye, which really seemed to help. We're keeping an eye on it (haha) but it's starting to look a lot better already.
Hayden has been really great with her. She always wants to know where Anabelle is and what she's doing. She loves to kiss her and hug her and has even shared her toys with her. She goes through moments where she acts out and wants "my mommy, my daddy" but overall she has really welcomed Anabelle into our world.
Thank you to everyone that has called, emailed, stopped by with food, and sent gifts. We are so appreciative of the love and support! Click on the picture below to view recent pictures.
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| Anabelle - Two Weeks Old |
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