Bela's appointment was yesterday, and I was told that her surgery will be around a year from now. It's weird to know that, but I'm so glad that we have a whole year. She will have the summer to recover fully before she starts school. Even as I type those words it's like it's not really going to happen. I can say them, but I don't connect to the words. I honestly do not dwell on the fact that she needs another surgery for the most part, but every time I have an appointment I struggle a little more than normal for a few days leading up and a few days following. It is all shoved in your face. The seriousness of her situation is put into words like catheterization, pressure building, restricted blood flow, non functional, leaking, surgery, not tolerating food, difficulty breathing, fragile tissue. Words I just don't talk about until I'm sitting in that chair. It's almost like I hear them, but I don't want to process them. It's not like I don't know there are problems, I see them every single day, but I don't see her heart. I don't know what's going on in there and it's scary to know.
With all that said, I still feel so much peace. I just know that everything will be okay. There is SO much more happiness and good times for her now and so I can see things a little more clearly. The first year was difficult to handle everything that was going wrong. But now that she has had such a happy, full year and a half, I have a better perspective of her life. Yes, there will be times that will be extremely difficult and painful, but there will be MORE times that are full of so much happiness and normalcy for her. It's nice to be able to see that now.
I loved this quote today by President Uchtdorf:
"The lessons we learn from patience will cultivate our character, lift our lives, and heighten our happiness."
Wednesday, May 12, 2010
Monday, May 10, 2010
#1
Bela is 27 months old. Our family dynamic has changed so much. Most days, I can breathe. I can sit down and find a quiet time for myself. I can get in exercise and clean up the house. I can run one, maybe two errands a week with the kids. She goes a day sometimes without throwing up. Bela doesn't have to go to the doctor every week. We are now at 6 weeks between cardiology visits. I am actually starting to think about having another baby. I can stand the thought and feel like I could maybe, possibly handle it. She sleeps about every other night through the night. I have a better handle on making her daily blends and feeding her (although it still frustrates me regularly, I wish it didn't). SHe is growing at a steady, but slow pace. She is very stable.
She goes in tomorrow for a cardi check up and I still, however, feel anxious and nervous at the prospect of getting bad news. I am overwhelmingly grateful for the life she gets to live each day. My heart still burns within me when I watch her do new things for the first time. But I do not know how to live without the worry. Hope gets me through a lot of things I struggle with. I always know that she (and our family) will be taken care of, no matter what, because we have a loving Father in Heaven. I've known that from the start.
It is balancing act for me.. sometimes I'm really good at seeing the positive, and sometimes I'm really good at seeing the negative. More often than not, I feel optimistic.
Yesterday we celebrated mother's day. I felt so happy yesterday, but I missed my mom terribly. I'm so lucky to have such a bond with my mom. I can always confide in her and she always makes me feel okay about whatever I'm feeling or going through. She's so far away and I can't wait until she's back. Sometimes, even when you're all grown up and a mommy yourself, you still need to be your mommy's baby. I'm grateful to have her, and I thought a lot yesterday about what she has always given me: everything. I hope my babies will say that about me one day.
Today has just been one of those days. The house was a disaster from the weekend. Bela is kinda grumpy, I think she is fighting something yet again. She had a fever Saturday, slept most of the day away yesterday, and is still not herself today, although the fever is gone. I hope that was all it was. I stayed up til 12 to start her night time feeds because she wouldn't settle down until about 11. She started to cry at 12:30, and although I was wide awake, I let Tanner go in and make sure she was okay. She cried again at 3. She was sitting up saying, "out." So I took her tube out. 3 hours of tube feeding didn't make it worth it to stay up..:( Then she was awake at 5:30. That actually pretty accurately described the last 3 nights and mornings. So I was tired today. I tried to turn on the TV for her, but she was just not feeling good enough today for that to work. She needed me to hold her. I made her food at about 6:30. Blueberries, Strawberries, a banana, oatmeal, flax oil, spinach, cucumber, kale, quinoa, almond milk, pear juice, almond butter, 1/2 avacado. Bela reached up and pulled down the quinoa and little pieces of it went everywhere.. I fed her 4 ounces over the next half hour, and a few minutes later it all came up, somehow splattering about 10 feet in every direction. We're all cleaned up and Bela is sleeping. It's all better now, but I was just a little overwhelmed...
The other day Bens asked me if I could get a baby in my tummy, please. Everyone else's mommy has one. It's true.. I told him maybe we could start thinking about that. Then he asked me how a baby gets there. So I told him that Heavenly Father chooses to bless our family with another baby and then the baby will grow inside mommy's tummy until it's ready to come out!, and that maybe we could start praying for a baby. He looked at me with a huge grin and said, "Well we better start sewing!" Sewing?!? "yeah, we gotta make him a robin costume!" I love that kid.. Always thinking in superheroes. If you want him to do anything you have to ask him to show you how spiderman would do it. He's so creative and loves to imagine up stories. He could tell you a story for 45 minutes if you let him.. He's SOOO busy and could play outside from morning to night, there's just too much to discover to sit down. It's nice to have that kind of excitement and energy around you all the time. :)
She goes in tomorrow for a cardi check up and I still, however, feel anxious and nervous at the prospect of getting bad news. I am overwhelmingly grateful for the life she gets to live each day. My heart still burns within me when I watch her do new things for the first time. But I do not know how to live without the worry. Hope gets me through a lot of things I struggle with. I always know that she (and our family) will be taken care of, no matter what, because we have a loving Father in Heaven. I've known that from the start.
It is balancing act for me.. sometimes I'm really good at seeing the positive, and sometimes I'm really good at seeing the negative. More often than not, I feel optimistic.
Yesterday we celebrated mother's day. I felt so happy yesterday, but I missed my mom terribly. I'm so lucky to have such a bond with my mom. I can always confide in her and she always makes me feel okay about whatever I'm feeling or going through. She's so far away and I can't wait until she's back. Sometimes, even when you're all grown up and a mommy yourself, you still need to be your mommy's baby. I'm grateful to have her, and I thought a lot yesterday about what she has always given me: everything. I hope my babies will say that about me one day.
Today has just been one of those days. The house was a disaster from the weekend. Bela is kinda grumpy, I think she is fighting something yet again. She had a fever Saturday, slept most of the day away yesterday, and is still not herself today, although the fever is gone. I hope that was all it was. I stayed up til 12 to start her night time feeds because she wouldn't settle down until about 11. She started to cry at 12:30, and although I was wide awake, I let Tanner go in and make sure she was okay. She cried again at 3. She was sitting up saying, "out." So I took her tube out. 3 hours of tube feeding didn't make it worth it to stay up..:( Then she was awake at 5:30. That actually pretty accurately described the last 3 nights and mornings. So I was tired today. I tried to turn on the TV for her, but she was just not feeling good enough today for that to work. She needed me to hold her. I made her food at about 6:30. Blueberries, Strawberries, a banana, oatmeal, flax oil, spinach, cucumber, kale, quinoa, almond milk, pear juice, almond butter, 1/2 avacado. Bela reached up and pulled down the quinoa and little pieces of it went everywhere.. I fed her 4 ounces over the next half hour, and a few minutes later it all came up, somehow splattering about 10 feet in every direction. We're all cleaned up and Bela is sleeping. It's all better now, but I was just a little overwhelmed...
The other day Bens asked me if I could get a baby in my tummy, please. Everyone else's mommy has one. It's true.. I told him maybe we could start thinking about that. Then he asked me how a baby gets there. So I told him that Heavenly Father chooses to bless our family with another baby and then the baby will grow inside mommy's tummy until it's ready to come out!, and that maybe we could start praying for a baby. He looked at me with a huge grin and said, "Well we better start sewing!" Sewing?!? "yeah, we gotta make him a robin costume!" I love that kid.. Always thinking in superheroes. If you want him to do anything you have to ask him to show you how spiderman would do it. He's so creative and loves to imagine up stories. He could tell you a story for 45 minutes if you let him.. He's SOOO busy and could play outside from morning to night, there's just too much to discover to sit down. It's nice to have that kind of excitement and energy around you all the time. :)
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