Merry Christmas and a Sophia Update

I know it's a day late...but Merry Christmas everyone! The girls had a great Christmas. Gabi woke Jason and I up at 7am and was full throttle the rest of the day! We had to force her to take a nap because she was so wound up! Christmas was so much fun this year because Gabi actually appreciated it and had fun!

On Christmas Eve I took Sophia in to Dr. Wellman's office to get her blood pressure taken. I think after seventeen months, I have finally found the key to helping us at his office...Gabi. She was such a wonderful big sister. She opted to get her blood pressure taken before Sophia, so that she wouldn't be scared and so that she saw that it didn't hurt. They also showed me how to us it so that the nurse could walk away and I could be the one to push the button! It actually didn't take us too long, even though we did learn that since Sophia is such a hard read we have to have it on the adult function rather then the pediatric function! Her blood pressure was still pretty high for her age and her repair, but it was lower then it was when we went on the 15th...such a relief! On the downside, but also an upside so I don't have to worry about it, on the way to Dr. Wellman's office I got a phone call from Seattle. I hesitated to answer, okay, I didn't answer it, I let it go to my voicemail, partly because I was working on getting the girls out of the door to get to Dr. Wellman's office and partly because when I saw that 206 area code I knew exactly what it was and I didn't want to deal with this on Christmas Eve, let alone when I was home alone with the girls. Anyway, Sophia's cath, but probably stent procedure is scheduled for January 21. We're looking at flying down to Seattle on January 20 and returning around the 24th. They want her to stay in the hospital overnight and then stay in Seattle for a day. I'm trying to find the silver lining in this situation, like we aren't being medivaced and there is great food there, and I may try and sneak a visit to my cousin Kim while I am down there and I am doing a pretty good job of it. It still sucks though! So if you are in the Washington area and want to see us...let me know :0)

Cardiology Appointment

Today has been a very long day! Sophia had a cardiology appointment today and it took almost two hours! If there are any other heart mommies that read my blog and have suggestions on getting a good blood pressure read, I would love to know. It always takes us 6-7 tries to get her blood pressure, which is one of the most important things we need to get, but today it was almost impossible. We tried about 7-8 times before her echo and we just weren't getting ANY readings. We tried her on the bed and we even tried me holding her for a little while and that didn't even work. She was so upset and worked up that we decided we would wait until after her echo to try and get a read. She did okay for the echo, after Dr. Wellman put in Baby Einstein. Dr. Wellman wasn't happy with the readings he was getting from the echo and wanted to try and get her blood pressure. Of course it STILL didn't work, after 2 or 3 more tries we finally got her blood pressure and it was horrible. It was 130/91! Unfortunately we got this reading twice, so these are the numbers we kept. Dr. Wellman wasn't happy with this either, obviously, so he also did an EKG. With all of these it confirmed that her stent is not doing well. Dr. Wellman thinks it is almost time to go back to Seattle and get the stent replaced. He is sending the information to Seattle to have Dr. Jones look over it and see if we need to go down soon or if we can wait until our appointment scheduled with Dr. Wellman in March, yes MARCH. This makes me VERY nervous and I am sure I will be calling the wonderful ladies at the Alaska Children's Heart Center constantly attempting to get reassurance.
Other then the fact that this obviously isn't good news, Dr. Wellman said Sophia looks good.

Birthday Photos

Big Birthday Girl

Gabi is becoming such a big girl, although I have also noticed that she has become more and more hyper! We had Gabi's birthday party today and it was so much fun! We painted Christmas ornaments, made arts and crafts and decorated Christmas cookies! Here are some photos of my big girl...I still can't comprehend that she is 4 by the way! :0)

Mended Little Hearts Christmas Party

Yesterday we went to the Mended Little Hearts of Alaska Christmas party. It was a lot of fun and it is always super heartwarming to see all of the other CHD kids. Here are a couple pictures of the girls from the party!

She's Not A Baby Anymore!

Now of course Gabi hasn't been the baby in the family since Sophia was born, but she will always be my baby girl! I didn't realize that I would be so emotional with Gabi turning 4, but I sure was!!! She reminded me several times today that she wasn't a baby anymore and she is a big girl! I will definitely post more pictures after her party on Sunday, but I wanted to post a couple pictures of the birthday girl today!

So Thankful

We woke up to seven to eight new inches of snow this morning, which started our Thanksgiving off great! The girls played and ate snow, while I shoveled the driveway! (My pre-Thanksgiving workout, maybe) Then we spent the day with Jason's family. The girls had a great time and were pretty well behaved...which if the morning was any indicator, Jason and I were REALLY scared.
Of course Thanksgiving has a whole new meaning to me since last year. I am so thankful for my family and great friends and our health and most importantly I am thankful Sophia is here. Her cardiology appointments have been pretty good since our infamous medivac last November. I have been listening to her heartbeat like Dr. Penman suggested and she actually is getting used to me listening to it. I am also thankful that finally tomorrow, I will be taking sweet Sophia in for her H1N1 vaccine, FINALLY. I have been so nervous about her catching it, but the pediatricians office put one aside for her and we are going in at 8am tomorrow to get it!


The girls playing Emo-Harmony's piano

My beautiful girls

The reason for giving Thanks!

Fun in the Snow?

We only have a little bit of snow fall right now, but at least it's something the girls can play in and boy have they been excited!

Lots of Shots

Things are going well here in chilly Alaska. Sophia had her second round of her synagis vaccine yesterday along with her fifteen month vaccines, so that made a grand total of five shots! Unfortunately or fortunately, depending on how you look at it she did very well. She obviously cried, but she didn't fight us at all. We held off on getting her fifteen month vaccines last month so that she could get the seasonal flu vaccine. We haven't gotten the H1N1 vaccine for her yet, still because Alaska hasn't received the infant doses. She is too young to do the nasal spray, so we have to wait for the shot form for the infants. The pediatricians office thinks that state should get our shipment within the next couple of weeks. It's just annoying...she really needs it, but it isn't available for her.
Developmentally Sophia is doing so well. She is starting to talk more and more. She is saying mama, daddy, Babi (Gabi), bebe (baby), joooo (juice) wa wa, mimi (blanket), billow (pillow), and yesterday when we were at the doctor's office she said docTor (emphasis on the T)! Dr. Penman is very happy with the way she has developed and how far she has come.
Dr. Penman also suggested that we do something pretty cool with Sophia here at home. I had mentioned at the appointment that we have a stethoscope at home, that we were given from Seattle before we came home last year so that we could check the location of her feeding tube. Dr. Penman suggested that I listen to Sophia's heartbeat every day. For all of those who have followed my blog know that a year ago, we were medivaced to Seattle because Sophia had an obstruction where her aortic arch had been repaired. When we got back, Dr. Penman listed to her heart and noticed that once the stent was placed, the sound of her murmur was much quieter. He said that by me listening to her heart everyday I will be able to know if there is a change in the sound of her murmur and then I can immediately call their office or Dr. Wellman and have Sophia come in and get checked out. I really wish I had mentioned this earlier...even though no one knew her murmur would sound different until AFTER her stent was placed, but still. There have been so many times that I have been so scared and I have almost picked up the phone to call Dr. Wellman's office, but I have stopped myself.
I don't have any pictures to post tonight..but I hope to get some soon!

Happy Halloween!

I hope everyone had a safe and happy Halloween. Gabi told me last night that it was her best Halloween ever! (The things that come out of her mouth sometimes are so cute) Jason bought some caramel a few days ago and we made caramel apples. We then took the girls trick or treating around the neighborhood. Then we went to Jason's mom's house and then my mom's neighborhood. Gabi and I walked around my mom's neighborhood while Sophia stayed at her house with Jason. It's been pretty cold and dark here because as of today, November 1, we still don't have any snow!

Gabi helping with unwrap the caramel


Caramel Apples


Sophia "helping"

Lion King

I wish I had pictures of the actual performance but I only have a picture of Gabi sitting in her chair. The Broadway prduction of the Lion King has been here for a couple of weeks and we took Gabi this Sunday and we had so much fun! It was the most beautiful performance I have ever seen. The show followed the movie almost exactly! If any of you that read my blog are lucky enough to have the Lion King come to your town, I would highly recommend seeing it!



Gabi and Zazu

Heart Sisters

Sitting down to write this blog is making me a little teary eyed already. 14 and a half months ago I gave birth to the most precious little girl and I knew that the road that lay ahead of her was going to be long and difficult. I knew that I would do anything in my power to change places with her if I could. Then I met Mimi and sweet Mia. Our roommates in the NICU. Mimi and I bonded over the buzz of our breast pumps, our chairs hitting each other as we rocked and spoke to our sweet girls, the buzz of the monitors (that literally would go off simultaniously) amoung several over things that I don't wish on anyone. These sweet girls have had almost all of the procedures at the same exact time, if not within one day of each other. We have watched sweet Mia grow up on her blog since we live so far apart, but we were so lucky to get a chance to see sweet Mia while we were in Seattle. We went to the fair with Mia and her family. Mia is incredibly beautiful. She has the greatest smile and was very friendly. I think Sophia must somewhere within her remembers the times she and Mia speant in the NICU because two days before we saw Mia and her famly we saw my cousin Kim and her family. Kim's son Grant is 4 months older than Sophia and she wouldn't interact with him much. When Sophia saw Mia, it was like they were good friends. They were talking and smiling with each other. It was so cute! I cannot wait until they are older and can play with each other and Mimi and I can tell them stories of the journey they have had together!

Seattle 2009

Right before we left for Seattle I realized that Jason, Gabi, and I haven't been to Seattle for something not medical related in exactly 2 years. The last time we went to Seattle for fun and entertainment was September 2007. I was definintely nervous about going to Seattle as the last time I went was in Seattle was by tiny plane Medivac. You can tell people I work with have PTSD from my Medivac as well, as every time I told them I was going to Seattle, they would ask me is Sophia is okay. To get this out of the way, Fia is fine, we don't see the cardiologist until December.
So for our 2009 trip...We went to two baseball games, the Children's Museum, Pikes Place Market, dinner with my cousin and the fair in Puyllap.

The baseball games were a ton of fun! The Mariners won both games that we saw!! But it true Robinson baseball game fashion, I missed Ken Griffey Jr's homerun! Jason and I have been going to games together since 2001 and I have yet to see a homerun.




We also went to the Children's Museum at the Seattle Center and the girls LOVED it. I was pretty bummed out that the Sesame Street Body tour wasn't there. It was supposed to be interactive and teach you how your body works, oh well.




We then went to dinner with my cousin Kim who I haven't seen since I was three years old. Sophia and her son Grant are only a couple of months apart (he is older) and I have always wanted to get them together.

Last but not least we went to the fair and saw our special heart sister....I will post about that tomorrow!!! Seattle was absolutely beautiful and every time I go there, I like to think I want to move there!

We 'Heart' Sophia

Sophia had her first cardiology appointment in three months today. Needless to say, mommy was SUPER nervous. Jason made a joke a couple months ago, that it didn't matter what happened today because we would be going to Seattle tomorrow anyway. He wasn't the one stuck on a Medivac with Sophia last year, so his anxiety wasn't as high as mine was. Anyway...Sophia did SO well today at her appointment. Not only did we get really good results, but she sat and hardly cried at all during her echo! We always go to her appointments with snacks, toys, and pictures of Gabi, along with the video that Dr. Wellman plays during the echo. Dr. Wellman said he was very pleased with the results of the echo and the flow in her aortic arch hadn't changed much from last time we were there. We don't go back to see Dr. Wellman until December 15, I am pretty happy/anxious about that!

Just Some Photos

I haven't posted many pictures of the girls recently, so here are some. The majority of are from Sophia because Gabi likes to be shy in front of the camera.


Cute Piggy Tails


Gabi made this her "bed"


Sophia has a fascination with getting stuff out of her toes.


Look at this multi-tasking...purse, stroller, and milk!

Allergy Testing and an Update

This picture of Gabi a little over a year old is one that you will never see Sophia in. I called our pediatrician to have him make an allergy appointment for Sophia because the poor thing has constantly been stuffy and has had red eyes. So, we took her in today and when Jason and I were talking to the allergist, we realized that we don't know Sophia without a stuffy nose and red eyes. So, they did their testing and she is slightly allergic to cats. The reason I say slightly is because if you score a zero you aren't allergic and if you score a 3 you are allergic and she was a 2. So we are doing some things around the house to see if it helps, if it doesn't...she has an appointment in November and we may need to get rid of the cat.

Other than that, the girls are doing great. They are complete hams, dancing together and making Jason and I laugh constantly. We are planning a long weekend trip to Seattle, which I am excited and nervous about. We haven't been back to Seattle, even for a vacation, since Sophia and I were Medivaced. I can't wait to see a Mariners game, my cousin Kim (who I haven't seen since I was three) and most of all, I can't wait to see sweet baby Mia and she her and Sophia play!

Our Trip to Washington DC/Maryland

We took a family vacation to Washington DC and Maryland to visit Jason's grandmother, aunts and uncle. It was incredibly hot, but the girls had a lot of fun and I was so happy that his grandmother got to see the girls. The girls are doing great. Sophia is walking more and more. She is also starting to babble a lot more. Gabi is an absolute hoot and is definitely an opinionated three year old, which she likes to remind us!