Bella currently weighs 10 lbs 15 oz (down from 11 lbs 1/2 oz :( )
Length is almost 25 inches.
She is still on O2 at night. We have started trying to eat baby food every day. She is getting better at it.
Things to pray for:
For her head. That the doctors will know the best way to help her and if it is God's will that it will heal without the need for more surgeries.
That she will be able to tolerate her therapy well and respond to the treatments.
That she will be able to eat well and gain weight.
That she will remain healthy through this cold and flu season.
Thank you!! We love you all!!
Monday, October 22, 2012
A Moment of Clarity
I have been thinking of how to write this post for a while. To be very honest with anyone who reads this blog, I have been very discouraged lately. It seems that we have gotten one piece of rough news after another. It started with the CP diagnosis, then her ventricles were slightly larger and she may need another surgery, then her eyes and a possible CVI diagnosis...it is all news that we knew could happen but hoped she would be able to avoid.
As a mother, you never want to see your child struggle. For example, Bella has low tone in her trunk (abdomen) and can't sit up straight and her head control is still weak. It is becoming more apparent as time goes on that she will have some major physical trials to overcome in her life. Now, I am not saying she can't overcome them, in fact, I think she will surprise us all. But that doesn't mean it is any easier for me, as her mom I wants the very best for her. I want that for all my children.
I have been worrying a lot about the future and all the different paths it could take Bella. Then one that has brought tears to my eyes quite frequently is the path where her different abilities make her "stand out" in a crowd. How will people treat her? How do I help her develop into the strong daughter of God that I know she is, no matter what her body does or does not do? How do I help her without enabling or focusing on her "disabilities"? She is so cute and little now and everyone thinks she is so sweet, I want that to be the case when she is 16, 25, 80!
I want for her all the things I want for my other children. A good life filled with laughter and love. I want for her to experience the pure joy of finding a husband who loves her as much as her daddy loves me. I want her to know the overwhelming love that comes when you hold your baby for the first time. I want her to know the joy I have felt being a mother. I want her body to work right.
So, are you wondering where clarity comes into play? I had a moment the other day when I was pondering the future of my sweet baby and I was blessed with a moment of peace. The peace that only comes from Heavenly Father. In that moment, I knew that "IF" Bella was confined by physical limitations in this life, the blessings of being a mother and wife wouldn't be withheld from her eternally. She will have the opportunity to have those sacred moments. It just might not be in the way that I had envisioned for her. So, for that moment my soul was free and I rejoiced. And then like a drifting breeze, the clarity was gone. The weight of the world dumped back down on me, but I was different this time. I realized that it is okay for me to hope and pray for the best for Bella. As her mother I would do nothing less then this. I also know that if Heavenly Father has a different plan for her, that He will provide the strength to press forward. I also know that He will send moments of clarity to me as often as I earnestly seek Him. Bella is here, and oh how that smile of hers warms my soul!
I may never know the answers of why she had to come so early and struggle so hard. At least not here in this life time. But I do know that God lives. That He knows Isabelle Grace Price. He knows and loves her. He has promised to never leave us alone as long as we seek Him. I don't know what the future holds, and I am sure that there will be many more tears of sadness, happiness, and frustration that are shed.... but she is here. She is apart of our eternal family. In time, all things will be made right. I will do my part to ensure that she has the best chance to succeed in this life. I can do it because I know I never walk alone. The Lord has given me an amazing family who loves and supports me. He has brought many special friends into my life who are there to lift and cheer me. I am so grateful. Grateful that in moments of anguish and despair that moments of clarity come to light the way!
As a mother, you never want to see your child struggle. For example, Bella has low tone in her trunk (abdomen) and can't sit up straight and her head control is still weak. It is becoming more apparent as time goes on that she will have some major physical trials to overcome in her life. Now, I am not saying she can't overcome them, in fact, I think she will surprise us all. But that doesn't mean it is any easier for me, as her mom I wants the very best for her. I want that for all my children.
I have been worrying a lot about the future and all the different paths it could take Bella. Then one that has brought tears to my eyes quite frequently is the path where her different abilities make her "stand out" in a crowd. How will people treat her? How do I help her develop into the strong daughter of God that I know she is, no matter what her body does or does not do? How do I help her without enabling or focusing on her "disabilities"? She is so cute and little now and everyone thinks she is so sweet, I want that to be the case when she is 16, 25, 80!
I want for her all the things I want for my other children. A good life filled with laughter and love. I want for her to experience the pure joy of finding a husband who loves her as much as her daddy loves me. I want her to know the overwhelming love that comes when you hold your baby for the first time. I want her to know the joy I have felt being a mother. I want her body to work right.
So, are you wondering where clarity comes into play? I had a moment the other day when I was pondering the future of my sweet baby and I was blessed with a moment of peace. The peace that only comes from Heavenly Father. In that moment, I knew that "IF" Bella was confined by physical limitations in this life, the blessings of being a mother and wife wouldn't be withheld from her eternally. She will have the opportunity to have those sacred moments. It just might not be in the way that I had envisioned for her. So, for that moment my soul was free and I rejoiced. And then like a drifting breeze, the clarity was gone. The weight of the world dumped back down on me, but I was different this time. I realized that it is okay for me to hope and pray for the best for Bella. As her mother I would do nothing less then this. I also know that if Heavenly Father has a different plan for her, that He will provide the strength to press forward. I also know that He will send moments of clarity to me as often as I earnestly seek Him. Bella is here, and oh how that smile of hers warms my soul!
Friday, October 12, 2012
Salt Lake City and Stuff
Well, we made it home from our neuro check in Salt Lake. I wish I could say that we got awesome news. However, the neurosurgeon said that Bella's ventricles are slightly larger. So we have to go back in 6 weeks for a reevaluation. If her vents have gotten larger again, they will do an MRI and then decide if we redo the ETV (endoscopic third ventriculostomy) or put in a shunt. I still am praying that she will be able to avoid a permanent shunt but I am also preparing myself that a shunt could be the option we go with, that it might be the best for Bella.
We also saw her eye doctor because she is very cross eyed. She basically said that Bella has vision but she can't say how much Bella sees. The doctor said that Bella will have some visual impairment. We are suppose to go back in 6 months for another check up. However, Matt and I feel that a second opinion is a valid thing so we are going to see a doctor in Salt Lake when we go back in 6 weeks for a neuro check.
We will also be seeing an eye therapist next week. I am not sure what to expect from this visit but I am excited for someone to take a proactive approach in helping Bella with her vision. Our therapist speaks highly of this eye specialist so I will update you next week on how it goes.
Bella still isn't gaining weight great and that is a daily stress for me. And with the news about the cerebral palsy, her hydrocephalus getting worse, her eyes, and the eating, it is safe to say I am a mess pretty much all the time. Someone forgot to tell Bella that we left the NICU and it was ok if she wanted to exit the rollercoaster. I have said it before but it warrants saying it again: It shouldn't be called the NICU rollercoaster ride it should be the preemie rollercoaster. Just because you leave the hospital doesn't mean they let you off the vomit inducing ride that no one really wanted on in the first place. That doesn't mean that I don't want and love Bella and will want and love her no matter what the future holds. BUT if I had had my way, she would have cooked for an extra 4 months.
We have been approved for the synagis (RSV) shots, thank goodness. Bella should be getting her first one sometime this month.
Our prayers are that she will gain some good weight and that her head....well, that God's will be done with her head. And that no matter what happens we will have peace, knowing that it is in His hands.
Bella is here and happy. She smiles and coos and knows that we love her. Thank you all for your love and support. We are so grateful!
We also saw her eye doctor because she is very cross eyed. She basically said that Bella has vision but she can't say how much Bella sees. The doctor said that Bella will have some visual impairment. We are suppose to go back in 6 months for another check up. However, Matt and I feel that a second opinion is a valid thing so we are going to see a doctor in Salt Lake when we go back in 6 weeks for a neuro check.
We will also be seeing an eye therapist next week. I am not sure what to expect from this visit but I am excited for someone to take a proactive approach in helping Bella with her vision. Our therapist speaks highly of this eye specialist so I will update you next week on how it goes.
Bella still isn't gaining weight great and that is a daily stress for me. And with the news about the cerebral palsy, her hydrocephalus getting worse, her eyes, and the eating, it is safe to say I am a mess pretty much all the time. Someone forgot to tell Bella that we left the NICU and it was ok if she wanted to exit the rollercoaster. I have said it before but it warrants saying it again: It shouldn't be called the NICU rollercoaster ride it should be the preemie rollercoaster. Just because you leave the hospital doesn't mean they let you off the vomit inducing ride that no one really wanted on in the first place. That doesn't mean that I don't want and love Bella and will want and love her no matter what the future holds. BUT if I had had my way, she would have cooked for an extra 4 months.
We have been approved for the synagis (RSV) shots, thank goodness. Bella should be getting her first one sometime this month.
Our prayers are that she will gain some good weight and that her head....well, that God's will be done with her head. And that no matter what happens we will have peace, knowing that it is in His hands.
Bella is here and happy. She smiles and coos and knows that we love her. Thank you all for your love and support. We are so grateful!
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