Monday, October 11, 2010

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!

Sunday, October 10, 2010

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.

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.

Anabelle - Two Weeks Old

Friday, September 24, 2010

Five Alive

Today was Anabelle's fifth day of life and she is still doing great. Yes, you all cracked us for not posting sooner so we are sorry, we have been a bit busy.

Savannah was Miraculous Mom at the hospital and we checked out on Wednesday night - 2 days after Ellie was born. Not typical for a C-section but Savannah had taken such good care of herself prior to and had been so strong afterwards that she was ready to go home and the doctors and nursing staff agreed.

Click to See Slideshow


We just wanted to make sure we didn't have to deal with Hayden when we got home (not that we don't love her to pieces, but if you have a 2 year old, you know) so we checked out at her bedtime so that Oma and Pop (grandma and grandpa) could put her down and we could come home to a quiet house and relax. It worked out perfectly.

As far as sleeping, for her first 3 nights of life, Anabelle has been wanting to eat a lot - like every hour and a half. Good for her. Bad for Mommy and Daddy. However last night she decided to sleep a bit longer, and gave us a 5 hour stretch at one point which we will definitely take. In fact she mostly sleeps and eats right now, which is a welcome respite from the havoc of a toddler.

Speaking of Ellie's big sister, Hayden loves "Baby Anabelle" as she calls her. She loves to hold her, pet her, give her kisses, and put blankets on her when she's sleeping, even if she puts the blankets over her face. We were wondering how she would accept a new member of our family as we knew it could have gone either way. We are thrilled with her reaction to this point so major kudos to her.

Oma and Pop have been great as well. Mommy has needed rest and Daddy has been handling odd jobs, working, making food, and other items so having family here to help has been wonderful. Pop had to leave this morning but Oma is here for a month! We appreciate the help.

Thanks to all who have sent items, well wishes, and love our way. We really appreciate it knowing we have loved ones scattered about who care.

Below is a video montage of some clips of Ellie mushed together. Fans of cheesy 80's movies will love it.

Tuesday, September 21, 2010

Anabelle - Day 2

Click to See Pics


Anabelle is now over 24 hours old and she has been great. She is a wonderful eater (she must be her father's daughter) and only fusses when she is hungry. Unfortunately for her parents, she wanted to eat about 54 times last night. So Mommy and Daddy did not get much sleep.

Last night Hayden got out of school and came over to see her new little sister. She took the new addition to the family very well and 'pet' her for a few minutes. Then she wanted to hold her, which she was able to do with a little help. Then she gave her a little kiss on her forehead which was adorable.

Savannah is doing great and has moved from a clear liquid diet, to a full liquid diet, to soft foods, all the way to the cheeseburger diet! She is walking around and in plain clothes. She is experiencing minor pain but not as much as last time and nothing that some minor meds can't take care of. There is a chance we could go home tomorrow.

Enjoy the pics and the videos and thanks for the comments.



Monday, September 20, 2010

Anabelle is Here!!!

Anabelle Mae (Ellie) arrived this morning at 8:01am weighing 8 pounds 11 ounces and the tale of the tape was 20.5 inches. She did great, and Savannah was amazing.

One of the coolest moments happened shortly after she was born. Ellie hadn't yet opened her eyes and after the nurses cleaned her up and gave her to Daddy, she still hadn't opened up to see her new world. Daddy brought her over to Savannah who was still lying on the operating table and said, "Anabelle, meet your Mommy." She then opened her eyes and looked right at Savannah. It was fantastic.

Much of Ellie's family was here as both her Grandma's and Grandpa's as well as her Uncle and Aunt made it to the hospital for the event. It was great to have them here.

Overall she is a great baby. She has eaten a bunch including for 45 minutes right after she was born and she has rarely cried. Much of her time has been spent peering around the room wondering what new world she has come into.

Enjoy the pictures and thanks for the nice notes.

Click to See Pictures

Waiting for Anabelle

We are at the hospital and waiting for our scheduled time to go into the OR so that we can meet Anabelle!

Savannah is doing great, just trying to pass the time by resting a little. She is a trooper and we're super proud of her.



Monday, September 6, 2010

August Through Labor Day Weekend

We had a good last month of the summer with plenty of pool time and relaxing.

Daddy and Hayden went to a baseball game to see the Rockies versus the D-Backs. Hayden loved it and talks about it all the time. We had hot dogs, a pretzel, and some ice cream too. She even a month later she still remembers all the things we ate and she tells the story to people saying, "He threw it," referring to the pitcher.

Savannah attended her Heritage Makers conference which was held here in town. At the final dinner event, she was invited on stage as she won an award! We were so proud of her.

For labor day, we took a mini family trip up to Flagstaff. It was great to get out of the heat as the temperature up there was 80 degrees. We had a picnic in the park, toured an art fair, and Hayden got to play in some bouncy castles which she really enjoyed. Near our hotel was a line of train tracks and Hayden loved seeing the trains go by, "Chug-a Choo Choo!!!" We stayed at a cute little inn and though we thought we had reserved a suite, we only had one room. So when we put Hayden down to sleep, we had to go into the bathroom to watch a movie on the laptop. It was quite comical as we cramped into our little movie theater. The next morning we had a big breakfast and drove back down the mountain.

We also were able to finalize Anabelle's room. Thanks to Uncle Dan and Aunt Susie for the awesome tree that we were able to put on the wall (with Uncle Ashley's help). It looks awesome and makes the room look great.

Click to See Photos