Five Years Old and Super Heroes

My how time has flown. Sophia turned five this summer and it was bittersweet to say the least. Of course my spunky little girls would chose a Super Hero birthday party...my little Hulk lover! The day turned out beautiful, blue skies and no rain (we had a little bit of rain leading up to today) Sophia received a bunch of great birthday gifts and the best gift of all was a Mariners win on her actual birthday, that was pitched by Felix Hernandez...who could have predicted?! We also paid honor to Sophia's sweet heart sister on her birthday. My baby girls sent balloons to heaven and sang happy birthday to sweet Mia. I wish I could have given her sweet mommy a huge hug on that day...we love you Mimi!

Make A Wish

For some obvious and some not so obvious reasons I have toyed a) with putting in a make a wish request for Sophia and b) sharing it. It's more known now that Sophia had a wish granted,so I will do some updates. Back in February after we found out we were going to Seattle not only once, but twice for surgery I kind of lost it. Mostly I lost it silently, or to people who were kind enough to let me cry or share my fears, but I had had enough. Sophia was set to have a rough year on top of what we were already dealing with and I thought my daughter needed a break. She deserved to be happy and smile and not be defined by her heart condition. So before I sent in the request, I asked her what she wanted to do and she said that she wanted to meet Felix Hernandez. I was sure this was a long shot or at least it would be a whole before we heard anything, but the next thing we knew, we were told see if a week in June would work for us. So, here we are, I'm sitting in bed at our hotel still trying to wrap my head around what my daughter got to experience today. I will update more about our trip whence get back home, but I will finish by saying to things, the Seattle Mariners organization is the best group of people's have ever had the pleasure of meeting and I promise not to take this week for granted. This ha been amazing, but I am thinking of my friend everyday I am on this journey.

6 weeks post op and a new family member!

It's funny to think that Sophia had her surgery six weeks ago. Some times I think it was a long time ago, sometimes I think it was just the other day. It's weird to get back into the swing of things when something so major happened in your life. I think it might be a little different if Sophia wasn't doing so well. I mean, this is the kid that was discharged from the hospital four days post op and was on an airplane back to Alaska one week after her surgery. Things have been going pretty well. She is doing very well physically, her scar is healing beautifully and she hasn't had a lot of tenderness around any of the sites. She still is on blood pressure medication twice a day and we can finally monitor her pressures from home since she is getting big enough for an adult cuff! Behaviorally, is a different story. The nurses told us to expect some regression, but I had thought we would see it a little closer to her surgery date and not five weeks later! And the way she is regressing is not even how she was when she was younger. Hopefully now that she can be more active and run and play things will level out...we'll see. If there are any heart mom's out there that have seen a drastic change in their kiddos personality after surgery...let me know how you did it, it's been very trying to say the least. Today Sophia had her first "real" post op appointment. I say real because it was here in Anchorage, with Dr. Wellman. Sophia's b['s are still doing okay. Her arm pressures are still higher than her leg, but at least we are getting them in normalish range. The best part of today's appointment was the echo. She did great! Dr. Wellman was very happy about her repair and how everything is looking. We don't go back to see him until October, which is great and hopefully we can keep up the good work. Sophia asked Dr. Wellman today if she could play tennis and soccer over the summer and Dr. Wellman told her that she could, which is great...something to get the energy out of the rascal! Now on to our new family member. While we were in Seattle, Jason had our beloved Ginger put down. She was getting very old and it was hard for her to get around. The girls took it pretty well, but last week Jason got her paw print and Sophia got really sad. Sophia had really bonded with Ginger those last few months and would lay on her and hug and love on her. We drove up to Wasilla this weekend and got the girls a new puppy! Oliver is a chocolate lab puppy and he is fitting in to our family perfectly. He is 3.5 months old and he and Sophia are BFF's. I keep telling Jason that I think that he knows something is special about Sophia, because he is constantly glued to her side, even when we went to pick out a dog, and is very loving with her. The girls are in heaven with him and it is so much fun seeing them play with a puppy again!

My Hero

Boy had it been a whirlwind three days. i have been trying to keep facebook as updated as I could, but I will do my best to fill in any blanks I may have left off! I know last month I posted about Sophia being my strength and seeing all the things she has gone through has been where I have pulled my strength from, well that wasn't and isn't the right word for her, Sophiamis my hero. What I have seen this little girl do in three days wild cause most adults to crumble. We'll start on Friday and I'll apologize now for a long blog minus pictures...I don't have a laptops with me and I haven't figured out how to upload pics to the blogger on my iPad. If someone else knows, please let me know! Anyway, even though we were supposed to be here at 6:45 on Friday, I was up at 4:39, pre surgery jitters and I couldn't sleep. Sophia was just a trooper though. She did great coming in and only got a little teary eyed when the doctor's came to take her back. Then came the longest five hours in my entire life. It was horrible. Every time the pager goes off, your heart stops for a second.you literally feel fifty pounds lighter when the surgeon comes out to talk to yo and tells you everything went as planned. The repair went really well, he isn't 100% sure this won't happen again, because the membrane that formed was actually scar tissue that formed, so we'll just have to wait and see. Going back to see her for the first time was both scary and relieving at the same time. She looked really good and her numbers looked amazing. It's funny, a lot of the same doctors and nurses that worked on Sophia almost five years ago not only are still here, but were her doctors and nurses this time! Sophia had a really good first night, we were able to get her extubated that evening. She was very scared, but she did great. Let me tell you something though, there is nothing harder in this entire world, then not only knowing your child is in excruciating pain, but witnessing it and having to swallow your sadness and fear to calm them down. I can't tell you the magic recipe or how I did it because I honestly don't know how I did it, I just did it. Sophia had a great first night and our only huge heartache was trying to figure out how to regulate her blood pressure. Saturday wewere able to get her to try drinking more liquids and we even got her to eat a little bit of toast. Her catheter was removed and that started the next challenge of learning how to get her in and out of bed without picking her up under her arms because of the sensitivity to her sternum. It took me a couple tries, but I eventually got it and we have had a solid potty routine ever since. You forget, when life seems normal, the things you cheer for as a heart mom. It's been two days since her catheter was removed and I am still cheering her in and calling when she pees! She is going to hate me when she poops! Coughing, we also had to push her really hard to cough, which was hard when you just had your chest open, to clear the fluid and gunk that was in there. She had a cute little heart pillow that I will post later that she would use every time she would cough or attempt to lay down or sit up. Sunday was a good day. We got her eating more, every though it was very painful for her and we got all of her IV lines not only turned off, but taken out. Now all that we and left was the chest tube, that was still draining a tiny bit, but the surgeon didn't want to take it out yet. We also found out that we had orders to go from the CICU or the floor. To was very exciting news, but Sophia had no idea what was in store for her. We were given the task to make her walk three times and sit twice Sunday. As difficult as it was to do, I pushed my little girl and she did it! Knowing that she would be able to get that ugly chest tube out the more she walked and was upright, the more I encouraged her. We tried to get more food in her too, but that darned chest tube just was bothering her and was a little too much for her, we did get her eating some though. Monday morning meant X-ray, echo and EKG time. It was another busy day, but a big one. We were able to get the nasty chest tube out and Sophia was able to get out and walk and went to the playroom twice! She is eating way better and I am finally getting my little girl back. Back to her being my hero. All if this above has been done in THREE DAYS!! My four year old had open heart surgery three days ago and was in the playroom today. She also has not been on a lot of pain medication. She has been offered, but she hasn't wanted them and we only push her to take them when we are removing things are she is crying in pain. While I type this, I can tell you she has only had pain meds once in the last 24 hours and that is only because we removed her chest tube. Her and I have fought and disagreed, but today she said it best. Sophia told me she loved me and I told her I love her too, even if she hated me for being mean to her and pushing her. In her sweet little 4 year old voice Sophia looked at me and said, "I don't hate you, I love you."

Overwhelmed In Seattle

The Robinson clan and a lot of amazing family support are in rainy Seattle. Yesterday we spent the day downtown and took the girls to the Children's Museum. It was a lot of fun and the girls liked playing and dressing up. It was a nice reality break from why we are here. Today we had a long day (9-3) of pre op appointments. For the most part and for the length of the day the girls did well. All of the appointments were extremely stressful and the information that Jason and I had to hear and attempt to retain today was more then I ever want to in my life. I feel very lucky because the surgeon doing Sophia's surgery is the same surgeon that did her surgery when she was an infant and that is comforting. Even though this is extremely stressful and hard (we are staying at a hotel this time because Ronald McDonald House doesn't have space) the support we have gotten from friends and family is amazing to say the least. We have been supported by so many friends and I have six family members who have taken time out of their lives to be here with my family. Thank you doesn't feel adequate enough, but thank you, thank you, thank you.

My Strength

This little girl is the strongest person that I know. She is brave, stubborn, and such a firecracker. I hate that I have to explain to her the things that I do, but she takes it in stride. My mom's best friend asked Sophia if she was scared when we went to Seattle last week for her cath procedure and she triumphantly told her no! She has bragged about seeing the twinies and going to Safeco. She loves monkeys and the incredible Hulk. She tells you her favorite sport is hockey, but is in love with King Felix! Her favorite color is sparkly rainbow, pink, purple, blue, green, red and orange. (and she will tell you that) She loves to color and play with her older sister. She is spunky and loving and at the end of the day, she is the reason I fight!

Heart Mommy

I have wanted to be a mom for a long as I could remember. I knew that I always wanted two kids and when Jason and I got married we knew that two kids was the right fit for us! I was so excited when I found out I was pregnant with Gabi. She was such a good baby and has grown up to be such a wonderful, beautiful girl who is her daddy's best friend. Then I found I was pregnant with Sophia. Again, I was so excited and was equally excited when I found out I was having another little girl. I knew they were going to grew up being friends and they would always be there for each other. Then my world came crashing down when I found out about Sophia's special heart. I think I grew up that day and then again the day of her surgery. Us heart mom's are a special breed. Not that other mom's aren't, but meet a mom who has longed to stay pregnant with their baby for longer because their baby is safer inside of them then in the real world; meet someone who has handed over their newborn baby to surgeons to work on their tiny hearts. I could go on and on. I have met many amazing heart mommy's is my five years as a heart mommy and I have learned so much from them. We are strong, we are fierce, we are afraid, but we are fighters. We fight for our little ones and protect our other children. I always know that I am Sophia's mom for a reason and the fight we all have I think is one of the reasons!