We had a recent scare with Bella and her head. She had been vomiting more and was irritable and didn't seem like Bella, so I sent an email to her neurosurgeon in Salt Lake. This was done, intending to update him on all things Bella....I didn't expect an immediate response telling me that he was moving our appointment up from the 21st to the 9th. So we made a rushed trip expecting Bella to need surgery on her head. She had an MRI prior to seeing her surgeon and we got good news. The following is what I posted on Facebook. So now we can be all caught up.... :)
Prayers have been answered! Bella Grace will
not be having surgery tomorrow! Her ventricles are still very large but
the neurosurgeon said there is no intercranial pressure and putting a
shunt in wasn't going to change anything crucial to Bella's development.
Her ETV is still working and the MRI showed good movement through the
ventricles. His exact words were, "I'm tempted to say that no shunt will be necessary". He felt so encouraged that we don't come
back for 6 months. So now I just need to get the picture of her brain
out of my head (trust me it is frightening to see that your child, in
essence, is missing half her brain), and focus on Bella and how to help
her be what God intended for her. On a side note, he did encourage a
g-tube so we can maximize Bella's brain growth. So that is our next big
question and what we will be praying about. Thank you all for your
love, support, and prayers for our little miracle! We are so blessed!
Another Bella update. We saw her eye doctor
this morning. He said her optic nerves weren't swollen, which is good.
That mean her large ventricles aren't putting pressure on her optic
nerves. He did say the time has come to do surgery to straighten her
eyes. He hopes by doing this it will help Bella's brain and eyes work
better together. He said it would probably take 2 surgeries to keep the
eyes where they are supposed to be. So, surgery #1 is scheduled for
March 22. Bella seems to be recovered from the anesthesia from
yesterday and we are on our way home. I can't wait to see my other
kiddos!
And one more update....
We will be headed to Denver on the 21st to meet with a GI specialist. We need to figure out why Bella isn't eating as well as she should be and why she isn't gaining weight good.
Sunday, January 13, 2013
Tuesday, January 1, 2013
2013 Goals
Bella Grace has some goals of 2013. She may not know it, but she does....her mama says so!!
Goals:
1. chubby up (preferably without needing a gtube).
2. Not need any more surgeries on her head (or anywhere else for that matter).
3. to sit up by herself (and any other milestones she wants to throw in there...the more the merrier in this mama's book).
4. to start making noise (I know I pray for a noisy kid.....)
5. teach mama patience.
6. teach mama to enjoy the moment.
Ways you can pray for our sweet Bella Grace:
1. For her head to continue to heal and that she won't need any more surgeries.
2. That she will be able to eat better and gain some good weight. Especially as we are trying to transition her from breast milk to Pediasure.
3. That she will respond well to her therapies.
4. That her eyes will continue to improve.
5. That we as a family will have the patience we need to allow things to happen in the Lord's time. We don't wait well sometimes.
As always, thank you for your prayers and support! We love you all!!
Goals:
1. chubby up (preferably without needing a gtube).
2. Not need any more surgeries on her head (or anywhere else for that matter).
3. to sit up by herself (and any other milestones she wants to throw in there...the more the merrier in this mama's book).
4. to start making noise (I know I pray for a noisy kid.....)
5. teach mama patience.
6. teach mama to enjoy the moment.
Ways you can pray for our sweet Bella Grace:
1. For her head to continue to heal and that she won't need any more surgeries.
2. That she will be able to eat better and gain some good weight. Especially as we are trying to transition her from breast milk to Pediasure.
3. That she will respond well to her therapies.
4. That her eyes will continue to improve.
5. That we as a family will have the patience we need to allow things to happen in the Lord's time. We don't wait well sometimes.
As always, thank you for your prayers and support! We love you all!!
Reflections
2013....When did that happen? I swear we were just sitting in the NICU with Bella wondering what the future would have in store for us. Well, now here we are over a year later, and guess what, I am still pondering that same question. What does the future have in store for us as a family and for our Bella Grace?
2012 has been a year of joyous moments and minutes of sheer agony. We have watched our daughter struggle to do the simplest of things. We have had to make hard surgical decisions regarding Bella, more then once. We got real acquainted with medical terms like: ETV, septostomy, choroid plexus coagulation, spastic quadripalegic cerebral palsy, cortical vision impairment, RSV, Synagis, developmentally delayed, feeding difficulties. IVH, brain loss, PVL, CLD......the list could go on and on. We have had to try and start to come to terms with what it means to be a parent to a special needs child.
BUT, we have watched that little 1 lb 9 oz miracle defy so many odds. We watched her struggle to get of the ventilator and learn to eat so she could come home from the NICU, and although it was tough, she did it! We have seen her go through multiple head surgeries and come out smiling, teaching us what true strength looks like. We have watched her grow, and wean down on needing supplemental o2. She has made huge improvements with therapy. She has taught us how to enjoy each little accomplishment. Bella has a smile that will warm your heart no matter how bad life may seem. And even though we are struggling to get her to eat and gain weight, she is eating! Something they said she would never do. We have watched as one doctor after another looked at Bella in awe. They are amazed at how well she looks and the things she is doing. This is huge considering what her medical chart looks like.....not to mention how scary the images of her brain look.
I'll be very honest, I have bad days. Days that I wonder how I'll ever get through another minute or one more piece of bad news. Weight checks that show she has lost more weight. Head ultrasounds that show enlarged ventricles. Days that I wonder why she has to struggle with every little thing. Times that I fall down in a heap of tears and plead with God to heal her. Nights when I sob about the "unfairness" of it all. Moments when I beg to take away some of the challenges that she faces. Days when I can't get past the phrase, "Why her"?
But through it all, God is right there. Sometimes He sends those moments of quiet peace. Often He shows his love through others, who reach out exactly when I need them. Sometimes, He doesn't say anything, letting me cry, beg, plead, rage and then He reaches out and whispers that it will all work out in His time. Even when I push Him away, He lets me know that He is never going to really leave me. I can't even begin to describe the love I have for my Father in Heaven and His son, Jesus Christ. Because Christ died for us, I know that Bella can be healed. Maybe not how and when I want, but one day all things will be made right. While this knowledge doesn't make it easy to deal with fighting to get Bella to eat and gain weight and it doesn't make my anxiety of her upcoming trip to Salt Lake go away, it does give me the courage and strength to take another breathe and continue on. And for now, right here in this minute, that is enough.
2012 has been a year of joyous moments and minutes of sheer agony. We have watched our daughter struggle to do the simplest of things. We have had to make hard surgical decisions regarding Bella, more then once. We got real acquainted with medical terms like: ETV, septostomy, choroid plexus coagulation, spastic quadripalegic cerebral palsy, cortical vision impairment, RSV, Synagis, developmentally delayed, feeding difficulties. IVH, brain loss, PVL, CLD......the list could go on and on. We have had to try and start to come to terms with what it means to be a parent to a special needs child.
BUT, we have watched that little 1 lb 9 oz miracle defy so many odds. We watched her struggle to get of the ventilator and learn to eat so she could come home from the NICU, and although it was tough, she did it! We have seen her go through multiple head surgeries and come out smiling, teaching us what true strength looks like. We have watched her grow, and wean down on needing supplemental o2. She has made huge improvements with therapy. She has taught us how to enjoy each little accomplishment. Bella has a smile that will warm your heart no matter how bad life may seem. And even though we are struggling to get her to eat and gain weight, she is eating! Something they said she would never do. We have watched as one doctor after another looked at Bella in awe. They are amazed at how well she looks and the things she is doing. This is huge considering what her medical chart looks like.....not to mention how scary the images of her brain look.
I'll be very honest, I have bad days. Days that I wonder how I'll ever get through another minute or one more piece of bad news. Weight checks that show she has lost more weight. Head ultrasounds that show enlarged ventricles. Days that I wonder why she has to struggle with every little thing. Times that I fall down in a heap of tears and plead with God to heal her. Nights when I sob about the "unfairness" of it all. Moments when I beg to take away some of the challenges that she faces. Days when I can't get past the phrase, "Why her"?
But through it all, God is right there. Sometimes He sends those moments of quiet peace. Often He shows his love through others, who reach out exactly when I need them. Sometimes, He doesn't say anything, letting me cry, beg, plead, rage and then He reaches out and whispers that it will all work out in His time. Even when I push Him away, He lets me know that He is never going to really leave me. I can't even begin to describe the love I have for my Father in Heaven and His son, Jesus Christ. Because Christ died for us, I know that Bella can be healed. Maybe not how and when I want, but one day all things will be made right. While this knowledge doesn't make it easy to deal with fighting to get Bella to eat and gain weight and it doesn't make my anxiety of her upcoming trip to Salt Lake go away, it does give me the courage and strength to take another breathe and continue on. And for now, right here in this minute, that is enough.
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