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

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.

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!

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.

Anabelle at Hospital - Day 3

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, Anabelle

Wish 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!

One Tough Cookie

Click on the picture below to see some of the pictures we've taken since Thursday.

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.

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.

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.

Anabelle - Two Weeks Old