A Season for Thanks

To say that I have a lot to be thankful for this holiday season would be an understatement. I never would have thought that at 26 I would feel like I had lived two lifetimes, but boy do I ever! Before July 7 I never knew true fear or true love until my baby girl was born. Now, I don't mean I don't love my husband or Gabi, I mean the love that I see between my two little girls. It melts my heart to everytime I see the light in either Gabi or Sophia's eyes when they see the other walk in the room. They are the best of friends and I cannot wait until Sophia is old enough to actually interact with Gabi.

Getting back to being thankful. I am so thankful for my little fighter. She is so strong and she has shown me more courage and fight then I would have ever thought possible. I am thankful for Mimi and Mia, Sophia's heart sister. If there is anyone I know that has fought harder then my little girl, it is Mia. She held on for her heart and she is doing so well! I am thankful for my family. Jason and I have had so much love and support from so many people from our families it is unimaginable. I cannot say enough thanks to my Aunt Linda, my cousin Claire, my grandma, and Tina for taking time out of their lives to come and be a support to Jason, Gabi, Sophia and me. I don't think I could ever find the right words to truly thank them for what they did for me especially, those few weeks they were there. I am most thankful for my mom. Three times she has dropped everything and hopped on an airplane to help Jason, Gabi, Sophia and me.

Here is a picture of Sophia and her great-grandma Robinson. She came up here for Thanksgiving to meet the girls and it is so nice to see how the girls interact with her. With all of her cooking I have told her that I want to keep her here so she can feed us!!

Doing Better

So we have settled back in to being home. Sophia saw her cardiologist on Tuesday when we got home and he could tell that she sounded better then she did when she came in the previous week. We aren't doing another echo until her next appointment (Dec. 11), but he assured me that I could call whenever I needed to and that I wouldn't be bothering the girls at the front desk!! We then took her to the pediatrician on Wednesday for her four month appointment. She didn't get her four month shots, just her synagis shots. The doctor didn't want to give her five shots at one time because he thought it would be too much for her with what she had gone through the last few days. She is up to 13 pounds 1 ounce; a little less then she was before we left, but she is eating much better. She did get her three four month shots on Friday and she did pretty well. She is on captopril, lasix and asprin. She HATES taking the captopril and it is like murder giving it to her. She isn't spitting the medicine out right now, but she is holding it in her mouth and not swallowing it. The nurse told Jason to blow on her face and that should make her swallow, but that worked the first two times and now she just sit's there and talks to us until we finally get it down. If anyone has ANY tips to getting her to take her meds, I am MORE then willing to hear about it! The one good thing in all of this is she has been sleeping through the night. (Great, since I did type this I am sure that I just jinxed myself)

Baby Mia

So many of you have heard me mention baby Mia on my page and the few of you that were in Seattle when Sophia was born now about baby Mia. A little background about Mia and Sophia. They were both born July 8, 2008 at UW Medical Center. They were both transported to Children's Hospital together and they were roommates in the NICU and they have had almost all of their procedures within days of each other. Both girls were discharged from Children's in July 31, but unfortunately Mia was life flighted back to Children's five short days later. Mia and her mother Mimi have been waiting at Children's since that day and they have been waiting for her heart. I visited Mimi while we were in Seattle and told her I would be sending her special heart prayers while we were there. Well, long story short, I was sitting in bed at the Ronald McDonald House last night checking Mimi's blog and to my surprise I learned that baby Mia received her gift! I rushed to the hospital and met Mimi and saw beautiful baby Mia. She looked so good and her SAT's were better then they have ever been. We think Mia needed her heart sister there with her and I was so happy to be there the day she got her heart. It would have been nice if the girls had told me this was there plan...we would have flown down earlier rather then be medivaced to Seattle! It made the end of a very stressful trip so worthwhile and I am so thankful that baby Mia finally got her heart!! Please continue to pray for her and a speedy recovery!

Greetings From Alaska

We arrived home this morning at 9am. The flight was a little bumpy, but we did okay. Sophia saw her cardiologist today things are doing okay. Her blood pressures have finally leveled out and I will continue to pray that they stay that way and her heart beat sounded good. Dr. Wellmen thinks she sounds much better then she did the last time he saw her. She has another appointment with him December 11, but I told the ladies at the front desk to expect lots of phone calls from me between now and then! Not sure how long I will be nervous, but I will take baby steps. We are going to see her prediatrician tomorrow for another synagis shot and her four month check up/shots. Fun Fun!!

Discharge Date

Sophia is going to be discharged from the hospital tomorrow. We aren't leaving Seattle until Tuesday, to get cheaper tickets, but I am happy to be finally going home. (Although this weather is SO much better then what is happening in AK) This is sort of a catch 22 for me. Don't get me wrong, I am so excited to be leaving the hospital and going home, but on the other hand, my baby girl was very sick and I didn't know it. This has always been the fear for me with Sophia's heart condition. It's not a bruise or a injury on her skin. It's her heart. It's inside of her and I can't see it. I can't see when it is healthy and I can't see when it is sick. As a mother, this terrifies me. I know this baby girl. I know her personality, I know her smell, I know the way she feels in my arms; but I will never know when her heart is sick until it's really sick. How do I do that? How do I go through a day loving this baby and in the back of my mind wondering if she is sick or when she will be sick. I know that I have to put faith in God and I will continue to. He is the only person that can help her and He has protected her so well.

Photos from our trip

Sophia being taken to the ambulence.

Our chariot to the airport

The tiny, scary plane we went to Seattle in.


Chunky Sophia waiting for her procedure.

Gabi and Sophia sleeping.

Four Months

It's amazing what a four month old can teach you about life and about yourself. My baby girl has lived more in four months then most people have in their entire lives and she has come through like a champ. She has shown me strength that most grown men don't possess. With this recent trip to Seattle I have begun to realize that she is going to be a little spit fire and will keep Jason and I on our toes for the rest of our lives. The post four months have been the hardest, but the most rewarding at the same time. I have seen myself go through one of the hardest things and make it out okay. As I stare at her sleeping right now, I have even more faith that everything happens for a reason and I am comforted by the strength of everyone around me. I will not lie, this time around was a lot harder, I was much more terrifed, but I made it through it. I realize how lucky I am to have a "healthy" baby and I pray for our special friend to finally get her heart. Again, thank you to everyone who has prayed and sent your well wishes to me and my family; it is beyond words what it means to us.

On the Floor

Sophia had a good night last night. This morning they did an echo and they said that her left heart chamber is still working pretty hard, so they are going to keep us here at least through the weekend. She will have another echo on Sunday to see if everything is doing better and then the cardiologists will confer on Monday about what to do. They have her on laskis, captopril and asprin. She is having a little trouble eating. She just isn't really interested and will only eat about 2-3 ounces at a time. This is even harder since my milk has almost completely gone. Everyone here says it's because I am so stressed and it should come back soon. I am trying to stay calm so that it will increase, but it is a little upsetting. Hopefully this will increase and she will eat more!

Baby Mia Quilts

Many of you may know a little about Baby Mia. Mia and Sophia were born on the same day at UWMC and they were transported in style to Children's together. They were roommates in the NICU and we even were discharged on the same day. Unfortunately Miss Mia was back in the hospital shortly after returning home. She is still in the hospital awaiting a heart transplant. Her mother Mimi is always at the hospital and I was relieved to see a familiar face when we came back. On the side of my page is a link for a way to help donate to the ever expanding costs that this family is enduring. Please at least take the time to look at the site and pray Mia gets her heart soon!

Cath/Stint Procedure

So now that things are a little more calm I think I can finally let everyone know what has been going on. When we went to the cardiologist yesterday they said that Sophia's repaired aortic arch was obstructed. It should have been 8mm long and it was only 1.7mm long. (I have pictures and will scan then when we get home) So they were going to take her in this morning and do a cath procedure. Since they were going to bring her in this morning they decided they weren't going to let her eat. So the last time Sophia ate was 10pm last night. Fast forward to today and they didn't take her in until 1pm. That means she went 15 hours without eating!! Needless to say, neither her or I were happy about that! They brought her in at 1pm to put in her cath and the nurse came out and told us that they couldn't get the cath to widen the narrowing so they were going to try a stint. They were able to get the stint in and her aorta now opens to 6mm. They think she can have this for a few years and then we are going to have to come back and get a new one put in so that it grows with her. I can already tell that it is helping her a little bit because I was sitting with her and hands and feet are so warm. BEfore this procedure you would have to sit with her on your lap with a blanket. Thank you for all of the prayers and wishes everyone has sent our way, we hope to be on our way home soon!

Greetings From Seattle

Yes, the heading is true. We are back in Seattle. Yesterday we went in for one of Sophia's regular cardiology appointment and when Dr. Wellman was doing her echo he noticed that her repaired aortic arch is obstructed. He had to confer with the doctor's in Seattle and they Medivaced (sp?) Sophia and I to Seattle last night. Jason, my mom and Gabi were able to get on another flight and get in 4am. They are looking to do a cathetar procedure where they are going to inflate a balloon where the narrowing is. This is just preliminary until they really get in there and see what is going on. I will post some pictures later of the snazzy rides Sophia and I rode in, but I just wanted to update everyone on where we were.