I have to say this Christmas day was a lot more enjoyable then last year. At this time last year we were trying to divide our time between our kids at home and Bella who was 2 weeks old in the NICU. By this time in her short life we had already been told to prepare to let her go. We were still playing the minute by minute game and dreading every time the phone rang, worrying it would be the hospital with bad news. We were watching our little girl struggle for each breath.
Today was completely different. Bella is home and a whopping 11.8lbs. She is breathing good and trying to get better about eating. She smiled and played with the wrapping paper. We were able to gather all four of our children around the Christmas tree and enjoy being together as a family, no rushing to the hospital! We stayed in our pj's all day and munched on goodies. It was just how I wanted to spend the day, with my little family.
This last year has been hard for me and yet at the same time one of the most spiritual years of my life. Because of Bella, I have come to know my Savior in a way that I never probably would have without her. I learned more about what the Atonement means to me in my life. I have come to appreciate the gift Christ gave to each of us through His birth and His death and resurrection.
I still struggle with the "whys" sometimes. Why the early birth? Why the struggles to reach milestones? Why the cerebral palsy? Why the trouble gaining weight? Why her?
But then I remember that God knows Bella. He knows what she is capable of. He sees the eternal plan for Bella. He sees what we can learn from having her in our lives.
My goal for 2013 is to not ask why. But ask "What can I learn". I want to never miss an opportunity to revel in the miracle that Bella is. I want to rejoice every day in her smiles. I want to hold her close and help her become who God intended her to be. I want to help all my children reach their potential. To remind them, that they are great in the sight of God, and to their parents. I want to take each day to teach them about Christ and that through him all will be made right. Maybe not in our time but absolutely in His time.
I 2013 to be a year of service. I want to give back to all those who reached out to our family this last year. We have been so blessed to have good friends and family who love and support us. May we all have a blessed new year!!
Merry Christmas from Bella Grace and the rest of the Price clan!!
Tuesday, December 25, 2012
Saturday, December 22, 2012
12-11-12 Happy 1st Birthday Bella Grace
Guess who is 1? Yes, our sweet Bella Grace has been with us for a year now.
We had a great day with our miracle. I can't believe it has been a year since she came into our lives (4 months early). I have learned so much in the last year. We have closer as a family. I have discovered things about myself that I wouldn't have if we hadn't been through everything this last year has brought our way. I have come closer to my Savoir and have learned more about the atonement that I probably wouldn't have learned any other way.
Bella had a wonderful day. She started it by hanging with our therapist, Missy. We tried cupcakes at therapy but Bella just gagged. Then we spent the day snuggling and thinking about the last year. I will be honest I cried some as the memories of the first few weeks of her life came pouring back. Then, we had a small party with family. Again, Bella wasn't too fond of the cake but loved her sucker.
We are so blessed to have her here with us. I am so thankful she got to stay on this earth. She has come so far and overcome so many odds. I won't lie and say it has been easy but she is so worth it! We look forward to every day with her and our other kids.
We had a great day with our miracle. I can't believe it has been a year since she came into our lives (4 months early). I have learned so much in the last year. We have closer as a family. I have discovered things about myself that I wouldn't have if we hadn't been through everything this last year has brought our way. I have come closer to my Savoir and have learned more about the atonement that I probably wouldn't have learned any other way.
Bella had a wonderful day. She started it by hanging with our therapist, Missy. We tried cupcakes at therapy but Bella just gagged. Then we spent the day snuggling and thinking about the last year. I will be honest I cried some as the memories of the first few weeks of her life came pouring back. Then, we had a small party with family. Again, Bella wasn't too fond of the cake but loved her sucker.
We are so blessed to have her here with us. I am so thankful she got to stay on this earth. She has come so far and overcome so many odds. I won't lie and say it has been easy but she is so worth it! We look forward to every day with her and our other kids.
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| See how far I've come......... |
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| Bella and her sucker |
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| Who needs a cake when you have a peppermint sucker? |
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| Mama and Bella snuggling on her birthday |
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| Spoiled with gifts and loves on her bday |
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| Rockin' her glasses |
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| Funny Bella with pigtails |
Bella Update
Can you believe it has been a year since precious Bella came into our lives, 4 months before she was suppose to? It has been quite a year full of ups and downs, but through it all I am reminded everyday of the miracle that lives at my house.
Bella in a nutshell:
Weight: 11lbs 8.5oz (it doesn't sound like much but when you start out at 1lb 9oz that isn't too shabby)
Height: 25 inches up from 12 inches at birth. Again, not too bad.
Head status: We go back to Salt Lake in January for a MRI. Depending on those results, Bella may be having surgery. At this point I am not sure if he would put in a shunt or redo the ETV (endoscopic third ventriculostomy). I am hoping it would be the ETV. Her right ventricle is still too large but some of that is because of the brain loss from the bleed spilling out of the ventricle when she was just a few days old.
Lungs: Bella is still on o2 at night. She is doing much better then we first anticipated. She is currently getting the Synagis shots (which helps her fight the RSV virus). We are hoping my summer time that she will have kicked her o2 habit all together.
Heart: Her PDA is completely closed. We have a follow up with her heart doctor sometime next fall.
Hips: We saw a pediatric ortho doctor last week and were given the good news that Bella's hips are developing just like the should. We worry about her hips and her spine because of her cerebral palsy (Bella has cp that affects all four limbs and her trunk. She is high tone or stiff in her arms and legs and weak in her abdomen and neck). We go back in a year for a recheck.
Eyes: Bella does have some significant eye problems. In the NICU she had ROP which has resolved. But she does have Cortical Vision Impairment (this is a neurological problem. Her brain can't interpret what her eye is seeing), hopefully this will get better with time. She also is suppose to wear glasses to correct her vision (but the little stink won't leave them on). The eye Doctor was hopeful that Bella would have fairly normal vision (with glasses of course) but he couldn't say if she would see well enough to drive....time will tell.
Tummy: Bella still isn't the best eater in the world. She is what they call a "low volume feeder". We have tried about every supplement in the book trying to get her to gain weight better. Currently we are adding formula to her breast milk but are hoping to switch to Pediasure. (She recently had a rash and we aren't sure if it was from her vaccines or from the Pediasure so we are giving it a couple days and then trying the Pediasure again). She is also on Mirilax in an effort to help her poo on a more regular basis.
Therapy: Bella is currently doing PT and OT. We love our therapist. She has made great progress with Bella. Bella will also be adding speech therapy to the list soon.
So now you have way too much information about our sweet miracle. Overall, she is doing well. We have come such a long way in a years time. It is still a rollercoaster that we can't get off of but I wouldn't trade my sweet Bella Bird for anything.
Bella in a nutshell:
Weight: 11lbs 8.5oz (it doesn't sound like much but when you start out at 1lb 9oz that isn't too shabby)
Height: 25 inches up from 12 inches at birth. Again, not too bad.
Head status: We go back to Salt Lake in January for a MRI. Depending on those results, Bella may be having surgery. At this point I am not sure if he would put in a shunt or redo the ETV (endoscopic third ventriculostomy). I am hoping it would be the ETV. Her right ventricle is still too large but some of that is because of the brain loss from the bleed spilling out of the ventricle when she was just a few days old.
Lungs: Bella is still on o2 at night. She is doing much better then we first anticipated. She is currently getting the Synagis shots (which helps her fight the RSV virus). We are hoping my summer time that she will have kicked her o2 habit all together.
Heart: Her PDA is completely closed. We have a follow up with her heart doctor sometime next fall.
Hips: We saw a pediatric ortho doctor last week and were given the good news that Bella's hips are developing just like the should. We worry about her hips and her spine because of her cerebral palsy (Bella has cp that affects all four limbs and her trunk. She is high tone or stiff in her arms and legs and weak in her abdomen and neck). We go back in a year for a recheck.
Eyes: Bella does have some significant eye problems. In the NICU she had ROP which has resolved. But she does have Cortical Vision Impairment (this is a neurological problem. Her brain can't interpret what her eye is seeing), hopefully this will get better with time. She also is suppose to wear glasses to correct her vision (but the little stink won't leave them on). The eye Doctor was hopeful that Bella would have fairly normal vision (with glasses of course) but he couldn't say if she would see well enough to drive....time will tell.
Tummy: Bella still isn't the best eater in the world. She is what they call a "low volume feeder". We have tried about every supplement in the book trying to get her to gain weight better. Currently we are adding formula to her breast milk but are hoping to switch to Pediasure. (She recently had a rash and we aren't sure if it was from her vaccines or from the Pediasure so we are giving it a couple days and then trying the Pediasure again). She is also on Mirilax in an effort to help her poo on a more regular basis.
Therapy: Bella is currently doing PT and OT. We love our therapist. She has made great progress with Bella. Bella will also be adding speech therapy to the list soon.
So now you have way too much information about our sweet miracle. Overall, she is doing well. We have come such a long way in a years time. It is still a rollercoaster that we can't get off of but I wouldn't trade my sweet Bella Bird for anything.
Thursday, December 6, 2012
Update
Well, we celebrated Bella's first Thanksgiving. She tried the mashed potatoes...and gagged. It was a good day. As I snuggled with my kiddos and my sweet husband, I truly felt so blessed.
Bella continues to play the weight gain rollercoaster. We have a week of gaining followed by a few weeks of either losing or staying the same. Even though I try not to, I constantly obsess about her eating. Currently she is at 11 lbs 5 oz.
We did get her glasses. I wish I could say she loved them and wore them all the time. But...no. The little cutie doesn't like them at all. We can get her to wear them about 5 minutes if we are lucky. She has the uncanny ability to get those suckers off in a hurry.
Her head seems stable. I try not to think to much about it. But is like a nagging tooth ache that never really goes away. Every thing she isn't doing that she should be doing, I wonder if it is related to her head.
Therapy hasn't been real consistent the last month due to our being out of town and our therapist being gone. Therapy is a hard one for me these days. I am in constant turmoil if we are doing the best things to help Bella progress and rewire her little brain. I LOVE LOVE our therapist, I just always worry if we should be doing more or doing things different. I have been praying about it. I just want to feel the peace that only God can give. I have to have faith that He will direct in the path that is best for Bella and our family.
Bella was sick last week with a yucky nose. Thankfully her lungs are clear and her o2 levels are great. She is still on night time o2, I am hoping we can kick that after the RSV season.
We also had a huge event in our house last week....We said goodbye to Hellga. She was a loyal member of our family for the last year. She was reliable and very needed but her time with us came to an end. I will say it was bitter sweet and some tears were shed. But Hellga is gone...may she rest in peace. In case you are confused, Hellga was my breast pump. Yep, I am a free woman again. Bella is enjoying frozen milk these days.
Bella has a big day fast approaching next week. Can you believe that it has been almost a year since this little miracle came into our lives. What a blessing she has been. It has been quite a year for us, full of up and downs. Sometimes, I find myself getting caught up in all the things she isn't doing and obsessing about what we should do or should not do....and I was reminded by a fellow micro mom to slow down and not wish away this time with Bella. So my goal is to worry less. Enjoy the little things. Appreciate today. Give thanks for all the blessing that are mine. Find happiness. And like the little engine, I will say "I think I can.....I think I can"
Now, off to give sweet Bella a good morning kiss and get my kiddos off to school. May you have a wonderful day!!
Bella continues to play the weight gain rollercoaster. We have a week of gaining followed by a few weeks of either losing or staying the same. Even though I try not to, I constantly obsess about her eating. Currently she is at 11 lbs 5 oz.
We did get her glasses. I wish I could say she loved them and wore them all the time. But...no. The little cutie doesn't like them at all. We can get her to wear them about 5 minutes if we are lucky. She has the uncanny ability to get those suckers off in a hurry.
Her head seems stable. I try not to think to much about it. But is like a nagging tooth ache that never really goes away. Every thing she isn't doing that she should be doing, I wonder if it is related to her head.
Therapy hasn't been real consistent the last month due to our being out of town and our therapist being gone. Therapy is a hard one for me these days. I am in constant turmoil if we are doing the best things to help Bella progress and rewire her little brain. I LOVE LOVE our therapist, I just always worry if we should be doing more or doing things different. I have been praying about it. I just want to feel the peace that only God can give. I have to have faith that He will direct in the path that is best for Bella and our family.
Bella was sick last week with a yucky nose. Thankfully her lungs are clear and her o2 levels are great. She is still on night time o2, I am hoping we can kick that after the RSV season.
We also had a huge event in our house last week....We said goodbye to Hellga. She was a loyal member of our family for the last year. She was reliable and very needed but her time with us came to an end. I will say it was bitter sweet and some tears were shed. But Hellga is gone...may she rest in peace. In case you are confused, Hellga was my breast pump. Yep, I am a free woman again. Bella is enjoying frozen milk these days.
Bella has a big day fast approaching next week. Can you believe that it has been almost a year since this little miracle came into our lives. What a blessing she has been. It has been quite a year for us, full of up and downs. Sometimes, I find myself getting caught up in all the things she isn't doing and obsessing about what we should do or should not do....and I was reminded by a fellow micro mom to slow down and not wish away this time with Bella. So my goal is to worry less. Enjoy the little things. Appreciate today. Give thanks for all the blessing that are mine. Find happiness. And like the little engine, I will say "I think I can.....I think I can"
Now, off to give sweet Bella a good morning kiss and get my kiddos off to school. May you have a wonderful day!!
Saturday, November 17, 2012
National Prematurity Day!! And SLC update.
Today is National Prematurity Day. So if you read this today, quick, go find something purple to wear to show your support for these tiny miracles. Today, we celebrate Bella and other micro preemies and preemies around the world. We remember the baby angels who for reasons known only to God were taken too soon. We pray hard for those who are experiencing premature labor and the scary emotions that go along with it. We pray for those in the NICU fighting to overcome the fact that they came too soon. We pray for those of us who have "gotten well enough" to go home from the NICU but are still riding that preemie roller coaster. Today is a day to find joy in the small things.
I needed today. I have been feeling a bit down lately. Struggling with feelings of guilt. Feeling anguish over the fact that Bella has to struggle so hard for so many things. Then through a good friend I was reminded to celebrate the moment. There are blessings all around, but it is up to me to see them and act on them.
Will you join with me today in celebrating life. Go "get your purple on"! :)
Salt Lake City update:
We saw a new eye doctor that I really liked. He said he was optimistic about Bella's vision. She does need glasses (which we have ordered), pictures to follow. He also said she does have cortical vision impairment (which we hope will get better with time). He also said she will eventually need patching and surgery to fix her eyes. So, we pray for the best. We pray that her brain will learn new vision pathways. That with the glasses her vision will improve and in return maybe her motor skills will improve.
Her neuro appointment left me feeling both discouraged and hopeful at the same time. Her ventricles were again, maybe, slightly larger. But clinically she is doing so well that the surgeon said it would be a shame to do surgery at this point. He has consulted with other doctors in his practice as well as with the Neurosurgeon who first started doing the choroid plexus coagulation. This doctor started doing the procedure in Africa in hopes of helping kids with hydrocephalus have better outcomes. In Africa shunts aren't really an option because these kids don't come in for follow up visits, so the shunts fail or get infected and the children would die. So, he wanted to come up with another option that would hopefully help fix the hydro without a shunt. Enter the procedure that Bella had done.
All of the neurosurgeons were in agreement, treat the patient not the scans for right now. Both have said that Bella is a bit unusual (no, not our Bella.....lol). Most patients either do great and have an obvious success or have an obvious failure within a reasonable short amount of time.....Bella, however, is riding that gray area in between. In true Bella fashion, she is doing things in and on her own time frame. I have talked to her and told her what it is doing to my nerves, she just smiled big at me.
We go back again in 2 months for a follow up visit with the eye doctor and neurosurgery. She will have an MRI at that time in hopes that it will give the doctors a clearer picture of what is going on.
We thank you all for the many prayers and positive thoughts. We are also so thankful for those who helped us on our trip to Salt Lake. Your "gift" was timely and so needed. I will just say this, Matt has amazing co-workers. We love you guys!!
I needed today. I have been feeling a bit down lately. Struggling with feelings of guilt. Feeling anguish over the fact that Bella has to struggle so hard for so many things. Then through a good friend I was reminded to celebrate the moment. There are blessings all around, but it is up to me to see them and act on them.
Will you join with me today in celebrating life. Go "get your purple on"! :)
Salt Lake City update:
We saw a new eye doctor that I really liked. He said he was optimistic about Bella's vision. She does need glasses (which we have ordered), pictures to follow. He also said she does have cortical vision impairment (which we hope will get better with time). He also said she will eventually need patching and surgery to fix her eyes. So, we pray for the best. We pray that her brain will learn new vision pathways. That with the glasses her vision will improve and in return maybe her motor skills will improve.
Her neuro appointment left me feeling both discouraged and hopeful at the same time. Her ventricles were again, maybe, slightly larger. But clinically she is doing so well that the surgeon said it would be a shame to do surgery at this point. He has consulted with other doctors in his practice as well as with the Neurosurgeon who first started doing the choroid plexus coagulation. This doctor started doing the procedure in Africa in hopes of helping kids with hydrocephalus have better outcomes. In Africa shunts aren't really an option because these kids don't come in for follow up visits, so the shunts fail or get infected and the children would die. So, he wanted to come up with another option that would hopefully help fix the hydro without a shunt. Enter the procedure that Bella had done.
All of the neurosurgeons were in agreement, treat the patient not the scans for right now. Both have said that Bella is a bit unusual (no, not our Bella.....lol). Most patients either do great and have an obvious success or have an obvious failure within a reasonable short amount of time.....Bella, however, is riding that gray area in between. In true Bella fashion, she is doing things in and on her own time frame. I have talked to her and told her what it is doing to my nerves, she just smiled big at me.
We go back again in 2 months for a follow up visit with the eye doctor and neurosurgery. She will have an MRI at that time in hopes that it will give the doctors a clearer picture of what is going on.
We thank you all for the many prayers and positive thoughts. We are also so thankful for those who helped us on our trip to Salt Lake. Your "gift" was timely and so needed. I will just say this, Matt has amazing co-workers. We love you guys!!
Sunday, November 11, 2012
Happy 11th Month Day
Very fitting, so much to be thankful for today as it is Veteran's Day and Bella's 11 month-day. Yep, in another month our little Bella will be one year old. Can you even fathom how fast time has gone in the last year? Amazing.
So much to report. Bella has had an up and down time since our last post. Becky has been consistent about getting therapy accomplished here in the home as our sweet, sweet therapist has been out sick over the last couple weeks. Bella lasts through the majority of the exercises and stretches, but still has trouble with keeping her head upright and trunk control. She kinda folds up like a taco, especially when her legs straighten out-almost as if it's a involuntary response.
She Cu's, laughs, cries pretty good, she can roll side to side and even side to abdomen occasionally. Shes still having trouble with focusing appropriately with her eyes, but I do know she is fixing on objects a bit better. We trialed her off the night time O2 and she did well, but the O2 sat probe thingy will not stay on her foot, when we asked for a larger or band-aid type one from our home O2 company, they sent us one that doesn't fit...buncha goobers.
Anyways, we now leave the cannula off because it was causing her some stuffy noses (even with the bubbler) and so now we have a blow-by set up of a simple pedi-mask that we set close to her. The first night we used that we also had the O2 sat probe connected and she did awesome! Now we just utilize the blow by at nighttime.
Got our 1st snow in GJ yesterday, it was pretty cold all night and throughout today. BRRRR! Currently it's 25 degrees outside. We are trying to get the ducts and registers blown/cleaned out before we fire up the furnace, but we are having some scheduling conflicts.
Just so you know, we are headed to SLC this week for a follow up at Primary Childrens in the neuro department. Scheduled head US, then potentially an MR scan, then depending on those results, a potential procedure and/or surgery for a shunt placement. We pray for the right ventricle in her head to be normalizing and for her to not need any further surgeries, poor baby.
She has been a little more fussy, puking a bit more often-we think closely related to the reflux and she is just not gaining weight. She is loving some baby food at least once a day, trying twice a day, but is still having concerns with constipation. Roughly every 10 days she needs a pedi-enema. They are not fun for her as she cries throughout the procedure and the after effects.
So....we move forward in faith-hoping for the best-praying for the best and God's will to be done. Thank you all once again for prayers and best wishes and your service to us in any capacity. We love you!
-Matt-
So much to report. Bella has had an up and down time since our last post. Becky has been consistent about getting therapy accomplished here in the home as our sweet, sweet therapist has been out sick over the last couple weeks. Bella lasts through the majority of the exercises and stretches, but still has trouble with keeping her head upright and trunk control. She kinda folds up like a taco, especially when her legs straighten out-almost as if it's a involuntary response.
She Cu's, laughs, cries pretty good, she can roll side to side and even side to abdomen occasionally. Shes still having trouble with focusing appropriately with her eyes, but I do know she is fixing on objects a bit better. We trialed her off the night time O2 and she did well, but the O2 sat probe thingy will not stay on her foot, when we asked for a larger or band-aid type one from our home O2 company, they sent us one that doesn't fit...buncha goobers.
Anyways, we now leave the cannula off because it was causing her some stuffy noses (even with the bubbler) and so now we have a blow-by set up of a simple pedi-mask that we set close to her. The first night we used that we also had the O2 sat probe connected and she did awesome! Now we just utilize the blow by at nighttime.
Got our 1st snow in GJ yesterday, it was pretty cold all night and throughout today. BRRRR! Currently it's 25 degrees outside. We are trying to get the ducts and registers blown/cleaned out before we fire up the furnace, but we are having some scheduling conflicts.
Just so you know, we are headed to SLC this week for a follow up at Primary Childrens in the neuro department. Scheduled head US, then potentially an MR scan, then depending on those results, a potential procedure and/or surgery for a shunt placement. We pray for the right ventricle in her head to be normalizing and for her to not need any further surgeries, poor baby.
She has been a little more fussy, puking a bit more often-we think closely related to the reflux and she is just not gaining weight. She is loving some baby food at least once a day, trying twice a day, but is still having concerns with constipation. Roughly every 10 days she needs a pedi-enema. They are not fun for her as she cries throughout the procedure and the after effects.
So....we move forward in faith-hoping for the best-praying for the best and God's will to be done. Thank you all once again for prayers and best wishes and your service to us in any capacity. We love you!
Monday, October 22, 2012
Bella Stats
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!!
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!!
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!
Saturday, September 29, 2012
Cerebal Palsy and other stuff :)
It is now almost October and I haven't been as faithful about updating this as I wanted to be. My desire is there, my time is not. Things have been crazy like usual at the Price house. To start let me update you on Bella's current stats.
Age: Bella is 9.5 months, 5.5 months adjusted.
Height is still hovering at about 24 inches (double her birth length).
Weight is 10lbs 13oz (we might hit 12lbs by a year if we are lucky).
She is doing twice a week therapy and we will be working on.....eating baby food soon. We have an appointment in Salt Lake in 2 weeks to follow up on her head. Her ventricles seem to be stable but not getting better so I don't know what they will say when we go back.
We had an appointment with a neurologist last week and got an official cerebral palsy diagnosis. The official paperwork says "spastic quadriplegic, presenting with diplegia and hemiparalysis" whew, that is a mouthful. What does that mean for our sweet Bella? That she has trouble moving her arms and legs the proper way. So, we do lots and lots of therapy. She is developmentally behind. She is at a 3 to 4 month age range.
I will be honest, I cried and cried the day we found out. I still get choked up about it sometimes. No one wants to see there child struggle to do what seems to be easy normal things. Things that until now I have taken for granted. I am realizing with every passing day that her diagnosis doesn't have to define her. She is only as disabled as we let her believe she is. So my goal is to help without enabling her. This is a learn as you go adventure and I am sure we will have set backs and times when we feel like we are at rock bottom. I know that with my Savior and the support of family and friends we can make it through.
Bella is the happiest baby I know. She is full of smiles and will occasionally give you a giggle. She tolerates being poked and prodded pretty good. Although, she lets her therapist know when she isn't liking life. She has rolled over (back to belly) a few times. We are working on sitting in the "Bumbo" chair.
Her eyes are still not focusing right. We see an eye therapist (who knew about eye therapists?) in a few weeks and then will follow up with the eye doctor in November. I am thinking they will probably have to do surgery to align her eyes and then she will needs glasses. I think once they can get her eyes focusing right she will improve with her hand movements.
I am learning that patience is a hard thing to learn and that answers to prayers sometimes come one milestone at a time. I thought that when I got that sure answer to my prayer that Bella's head would be fine that it was going to be a "right away thing", I am finally understanding that that isn't the case.
What does the future hold for Bella? Honestly, I don't know. So, I will cherish today and work hard on the things that will give her a better tomorrow. I will thank my Heavenly Father every day that she got to stay her with us. I will celebrate her sweet spirit and give her millions of kisses. I will love her sibling more and find the beauty in all the blessings we have.
Age: Bella is 9.5 months, 5.5 months adjusted.
Height is still hovering at about 24 inches (double her birth length).
Weight is 10lbs 13oz (we might hit 12lbs by a year if we are lucky).
She is doing twice a week therapy and we will be working on.....eating baby food soon. We have an appointment in Salt Lake in 2 weeks to follow up on her head. Her ventricles seem to be stable but not getting better so I don't know what they will say when we go back.
We had an appointment with a neurologist last week and got an official cerebral palsy diagnosis. The official paperwork says "spastic quadriplegic, presenting with diplegia and hemiparalysis" whew, that is a mouthful. What does that mean for our sweet Bella? That she has trouble moving her arms and legs the proper way. So, we do lots and lots of therapy. She is developmentally behind. She is at a 3 to 4 month age range.
I will be honest, I cried and cried the day we found out. I still get choked up about it sometimes. No one wants to see there child struggle to do what seems to be easy normal things. Things that until now I have taken for granted. I am realizing with every passing day that her diagnosis doesn't have to define her. She is only as disabled as we let her believe she is. So my goal is to help without enabling her. This is a learn as you go adventure and I am sure we will have set backs and times when we feel like we are at rock bottom. I know that with my Savior and the support of family and friends we can make it through.
Bella is the happiest baby I know. She is full of smiles and will occasionally give you a giggle. She tolerates being poked and prodded pretty good. Although, she lets her therapist know when she isn't liking life. She has rolled over (back to belly) a few times. We are working on sitting in the "Bumbo" chair.
Her eyes are still not focusing right. We see an eye therapist (who knew about eye therapists?) in a few weeks and then will follow up with the eye doctor in November. I am thinking they will probably have to do surgery to align her eyes and then she will needs glasses. I think once they can get her eyes focusing right she will improve with her hand movements.
I am learning that patience is a hard thing to learn and that answers to prayers sometimes come one milestone at a time. I thought that when I got that sure answer to my prayer that Bella's head would be fine that it was going to be a "right away thing", I am finally understanding that that isn't the case.
What does the future hold for Bella? Honestly, I don't know. So, I will cherish today and work hard on the things that will give her a better tomorrow. I will thank my Heavenly Father every day that she got to stay her with us. I will celebrate her sweet spirit and give her millions of kisses. I will love her sibling more and find the beauty in all the blessings we have.
Monday, September 3, 2012
Happy 1st Labor Day
Well today Bella is celebrating her first Labor Day. Her stats are as follows
Weight: 10lbs 7oz
Height: 23 3/4 inch
That means she is 9x her birth weight and has almost doubled in length.
Her head ultrasound is stable. Her right ventricle is still too large, so we continue to wait and watch.
She is eating better, still not taking a huge amount but we are working on it. She has started on some baby food. She does ok with it although sometimes she just gags.
She has rolled back to tummy a few times. She has started to discover that she has toes. When she lays on her back she brings her legs up and reaches for her toes with her hands. This is actually a huge accomplishment for her.
We are still doing therapy and I am impressed with how far Bella has come. We have had the cerebral palsy talk with our therapist and she made me feel so much better about what that diagnosis means for sweet Bella. Bella will meet her milestones on her own time.
We have several doctor's appointments in the near future. We head back to Salt Lake in Oct. and to the eye doctor in Nov. throw in a trip to the heart doctor and the neurologist and we have a pretty full schedule.
Fall/winter is fast approaching and that will bring some changes to the Price family. We have a few weeks before we go into RSV lock down. We will pretty much confine Bella (and momma) to home. She gets to go to her therapy and to doctor appointments and that is pretty much it. We also will be cutting down on the people who come in and out of our home. This is not because we don't love you and want you around....this is because even a simple cold could put Bella right back into the hospital...or worse. So please please be patient and understanding of our situation. You can help by calling, sending facebook messages and sending prayers of health our way. We love you all and don't mean to offend but keeping Bella healthy is our number one priority. We also ask that if you see us out and about please don't touch without sanitizing or washing. Please also educate your kiddos about this too. I completely understand how tempting a baby is to other kiddos (mine own included) but kiddos as we know are the best carriers of germs. If I ask a kiddo to please not touch, I am not meaning to be rude...just protective. Please don't get offended.
In other news, we have made it through 2 weeks of school. Dallin is absolutely loving kindergarten. He is slightly put out that he didn't learn to read on the first day of school. Abigail loves 3rd grade (it helps that her teacher is a dear family friend), Abby is always keen to learn new things. Allison is adjusting to middle school. We have hit some bumps in the road with math but we will prevail. She is loving band and is playing......the drums (oh boy)! Matt is working hard like usual and trying to save up sick days so he can have surgery on his back. I am here trying to push forward. In all honesty the lack of hormones and pumping are wearing me down. Helga (the breast pump) and I are going to try and stay friendly until Dec. then I think we will have to part ways. I have enough milk in the freezer to get Bella to her adjusted first birthday and that was my goal. I look forward to getting on some hormone therapy and begin working out again.
I can't believe that it has already been almost 9 months ago that Bella was born. The time goes so fast. Treasure each moment!! Love and hugs to you all!!
Weight: 10lbs 7oz
Height: 23 3/4 inch
That means she is 9x her birth weight and has almost doubled in length.
Her head ultrasound is stable. Her right ventricle is still too large, so we continue to wait and watch.
She is eating better, still not taking a huge amount but we are working on it. She has started on some baby food. She does ok with it although sometimes she just gags.
She has rolled back to tummy a few times. She has started to discover that she has toes. When she lays on her back she brings her legs up and reaches for her toes with her hands. This is actually a huge accomplishment for her.
We are still doing therapy and I am impressed with how far Bella has come. We have had the cerebral palsy talk with our therapist and she made me feel so much better about what that diagnosis means for sweet Bella. Bella will meet her milestones on her own time.
We have several doctor's appointments in the near future. We head back to Salt Lake in Oct. and to the eye doctor in Nov. throw in a trip to the heart doctor and the neurologist and we have a pretty full schedule.
Fall/winter is fast approaching and that will bring some changes to the Price family. We have a few weeks before we go into RSV lock down. We will pretty much confine Bella (and momma) to home. She gets to go to her therapy and to doctor appointments and that is pretty much it. We also will be cutting down on the people who come in and out of our home. This is not because we don't love you and want you around....this is because even a simple cold could put Bella right back into the hospital...or worse. So please please be patient and understanding of our situation. You can help by calling, sending facebook messages and sending prayers of health our way. We love you all and don't mean to offend but keeping Bella healthy is our number one priority. We also ask that if you see us out and about please don't touch without sanitizing or washing. Please also educate your kiddos about this too. I completely understand how tempting a baby is to other kiddos (mine own included) but kiddos as we know are the best carriers of germs. If I ask a kiddo to please not touch, I am not meaning to be rude...just protective. Please don't get offended.
In other news, we have made it through 2 weeks of school. Dallin is absolutely loving kindergarten. He is slightly put out that he didn't learn to read on the first day of school. Abigail loves 3rd grade (it helps that her teacher is a dear family friend), Abby is always keen to learn new things. Allison is adjusting to middle school. We have hit some bumps in the road with math but we will prevail. She is loving band and is playing......the drums (oh boy)! Matt is working hard like usual and trying to save up sick days so he can have surgery on his back. I am here trying to push forward. In all honesty the lack of hormones and pumping are wearing me down. Helga (the breast pump) and I are going to try and stay friendly until Dec. then I think we will have to part ways. I have enough milk in the freezer to get Bella to her adjusted first birthday and that was my goal. I look forward to getting on some hormone therapy and begin working out again.
Saturday, August 18, 2012
It's been so long...
Has it really been since July 24th that I have updated this blog? Oh, where does the time go? It has been a busy few weeks at the Price house.
6th grade orientation and back to school night....check
Kindergarten and 3rd grade back to school night.....check
School shopping (over $200 worth)...check
Dentist and Orthodontist.....check
Ally, Abby, Dallin are ready for school. I don't know if I am ready for 6am, Monday through Friday but I will do my best :)
Isabelle is doing well all things considered. She is still having a tough time gaining weight. She got to where she wouldn't take her bottles if we put any formula in it at all. But she wasn't gaining weight on breast milk alone. Thankfully, we have great connections with other preemie moms, one of whom recommended that we put a product called "DuoCal" in her bottles. It is a tasteless fortifier that adds extra calories without adding extra volume. She still won't eat a ton at a time. If I can get her to eat 3oz every three hours I feel extremely lucky.
We are doing monthly head ultrasounds now. Our next appointment is in 2 weeks. That has been a tough one for me, to go from weekly to monthly visits with the neurosurgeon. I must admit I kind of miss seeing her.
I am the plague of the pediatrician's office. I am sure that Bella's doctor groans when he sees messages from me. Have I ever mentioned that I LOVE our pediatrician? I do! Really.
We have another appointment in SLC in October. Hopefully the news will be excellent.
Bella also had another eye exam done. Her eyes are very crossed. We go in November for a glasses evaluation. She may need surgery to fix her eyes, but we won't know more until she is older.
Our eating trouble has led to pooping trouble. Poor girl gets a suppository about every 4 or 5 days to help her poo. Another invasion of personal space...but what do you do?...
Therapy is going great! I love, love, love our therapist. Did I mention how much I like her? :) With Missy's help Bella is making remarkable progress. She rolled over for the first time yesterday. She is sitting better and just over all making great head way. Bella is still behind in a lot of areas. I don't notice it too much until I see babies who are 3 or 4 months old (Bella's corrected age) and see everything that they are doing. It makes it more apparent to me how much Bella's prematurity and brain bleed has changed our life. I am not complaining. I wouldn't trade my Bella Bird for the world....but the fact is that our future is now different then I would have ever imagined. Not bad just different.
I hate to cut this post short...but I have a 5 year old waiting to play cars with me outside.....and I think we all know where this Mama needs to be.............yep, outside :)
Many thanks for all the continued prayers and support!!
6th grade orientation and back to school night....check
Kindergarten and 3rd grade back to school night.....check
School shopping (over $200 worth)...check
Dentist and Orthodontist.....check
Ally, Abby, Dallin are ready for school. I don't know if I am ready for 6am, Monday through Friday but I will do my best :)
Isabelle is doing well all things considered. She is still having a tough time gaining weight. She got to where she wouldn't take her bottles if we put any formula in it at all. But she wasn't gaining weight on breast milk alone. Thankfully, we have great connections with other preemie moms, one of whom recommended that we put a product called "DuoCal" in her bottles. It is a tasteless fortifier that adds extra calories without adding extra volume. She still won't eat a ton at a time. If I can get her to eat 3oz every three hours I feel extremely lucky.
We are doing monthly head ultrasounds now. Our next appointment is in 2 weeks. That has been a tough one for me, to go from weekly to monthly visits with the neurosurgeon. I must admit I kind of miss seeing her.
I am the plague of the pediatrician's office. I am sure that Bella's doctor groans when he sees messages from me. Have I ever mentioned that I LOVE our pediatrician? I do! Really.
We have another appointment in SLC in October. Hopefully the news will be excellent.
Bella also had another eye exam done. Her eyes are very crossed. We go in November for a glasses evaluation. She may need surgery to fix her eyes, but we won't know more until she is older.
Our eating trouble has led to pooping trouble. Poor girl gets a suppository about every 4 or 5 days to help her poo. Another invasion of personal space...but what do you do?...
Therapy is going great! I love, love, love our therapist. Did I mention how much I like her? :) With Missy's help Bella is making remarkable progress. She rolled over for the first time yesterday. She is sitting better and just over all making great head way. Bella is still behind in a lot of areas. I don't notice it too much until I see babies who are 3 or 4 months old (Bella's corrected age) and see everything that they are doing. It makes it more apparent to me how much Bella's prematurity and brain bleed has changed our life. I am not complaining. I wouldn't trade my Bella Bird for the world....but the fact is that our future is now different then I would have ever imagined. Not bad just different.
I hate to cut this post short...but I have a 5 year old waiting to play cars with me outside.....and I think we all know where this Mama needs to be.............yep, outside :)
Many thanks for all the continued prayers and support!!
Tuesday, July 24, 2012
In the Beginning
I have been thinking about the blog a lot lately. I remember when Bella was first born, I went scouring the internet looking for others who had been in my situation. I went desperately seeking success stories. If this blog can help just one other like me then it has been worth it. But....I think I need to start at the beginning. So, here is part of how our miracle, Bella, came to be.
It really starts 5 1/2 years ago with the birth of our son Dallin. I know what you might be thinking, how does it have anything to do with Bella. It has everything to do with Bella.
Dallin's birth was by far my easiest delivery. I had 3 hours of labor from the first contraction to his birth. I pushed for 15 minutes and got to see my chubby 7lbs 10.1oz, full head of black hair (I know crazy) baby boy! I had some memorable (not all great) moments with him but went home from the hospital feeling pretty good. Until about 1 week later. It may get too graphic for some of you so be forewarned.
I started having abnormal bleeding and a general sense of something not being right. At 10 days postpartum I went into the doctor and had an ultrasound done. My uterus, which should have been nice and small, was enlarged with blood and retained placenta. It was infected beyond infected. A d&c was immediately scheduled for that afternoon. I simple procedure, 20 minutes and I would be done and home by dinner. Uhm, no!
I was just going to have light medication so that I wouldn't really remember the procedure. Thankfully, the good doctor giving the meds was listening to the promptings from God because he insisted on knocking me all the way out. Apparently I had (I refer to had because my uterus is now gone) a vein and artery that were connected in my uterus. The dr clipped this as he was doing the d&c and I started to bleed out. In an effort to stop the bleeding and save my uterus the dr scraped the lining of my uterus to deeply. This right here, is where the miracle of Bella begins.
After this procedure, life went on fairly normally. I was at this point oblivious to what the future would hold. It wasn't until my son was done nursing at 16 months that I started to wonder if we had a problem. I hadn't had a period this whole time. The dr. was sure it was the pill that I was on, and once I stopped that and stopped nursing things would go back to normal. Nope, about 1.5years later, I was diagnosed with Asherman's Syndrome (scarring of the uterus). I had a sever case. Over 3/4 of my uterus was scar tissue. I didn't have a period because I had no lining to build up. I was given the news that I was infertile. My heart was broken. For a whole year, I cried and questioned why I felt like our family was incomplete. I was devastated to say the least. However, I came to realize that I had been blessed with 3 beautiful children. I was lucky beyond measure. I had decided to go back to school to get my RN license.
Almost a year to the day of finding out that we couldn't have any more children, I got pregnant. It wasn't until a few weeks later that I took not 1 but 4 pregnancy tests....confirming that our miracle was on it's way.
MORE TO COME LATER>>>>
It really starts 5 1/2 years ago with the birth of our son Dallin. I know what you might be thinking, how does it have anything to do with Bella. It has everything to do with Bella.
Dallin's birth was by far my easiest delivery. I had 3 hours of labor from the first contraction to his birth. I pushed for 15 minutes and got to see my chubby 7lbs 10.1oz, full head of black hair (I know crazy) baby boy! I had some memorable (not all great) moments with him but went home from the hospital feeling pretty good. Until about 1 week later. It may get too graphic for some of you so be forewarned.
I started having abnormal bleeding and a general sense of something not being right. At 10 days postpartum I went into the doctor and had an ultrasound done. My uterus, which should have been nice and small, was enlarged with blood and retained placenta. It was infected beyond infected. A d&c was immediately scheduled for that afternoon. I simple procedure, 20 minutes and I would be done and home by dinner. Uhm, no!
I was just going to have light medication so that I wouldn't really remember the procedure. Thankfully, the good doctor giving the meds was listening to the promptings from God because he insisted on knocking me all the way out. Apparently I had (I refer to had because my uterus is now gone) a vein and artery that were connected in my uterus. The dr clipped this as he was doing the d&c and I started to bleed out. In an effort to stop the bleeding and save my uterus the dr scraped the lining of my uterus to deeply. This right here, is where the miracle of Bella begins.
After this procedure, life went on fairly normally. I was at this point oblivious to what the future would hold. It wasn't until my son was done nursing at 16 months that I started to wonder if we had a problem. I hadn't had a period this whole time. The dr. was sure it was the pill that I was on, and once I stopped that and stopped nursing things would go back to normal. Nope, about 1.5years later, I was diagnosed with Asherman's Syndrome (scarring of the uterus). I had a sever case. Over 3/4 of my uterus was scar tissue. I didn't have a period because I had no lining to build up. I was given the news that I was infertile. My heart was broken. For a whole year, I cried and questioned why I felt like our family was incomplete. I was devastated to say the least. However, I came to realize that I had been blessed with 3 beautiful children. I was lucky beyond measure. I had decided to go back to school to get my RN license.
Almost a year to the day of finding out that we couldn't have any more children, I got pregnant. It wasn't until a few weeks later that I took not 1 but 4 pregnancy tests....confirming that our miracle was on it's way.
MORE TO COME LATER>>>>
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| Dallin Eli born 10-16-06 |
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| Isabelle Grace born 5 years later on 12-11-11 |
Update from Facebook
I tend to be on facebook more often then not. I decided that I would randomly cut and paste some of the posts to the blog:
Sunday, July 15, 2012
July at the Price house
Bella celebrated her first 4th of July. We went and saw family in Paradox. Abigail turned 9 this July. Oh where did the time go? I still remember reading Harry Potter and waiting for the contractions to get strong enough to go to the hospital. And that I had to shower and do my make-up before we left....crazy!!
Bella has had a tough time gaining weight. We have started fortifying every bottle again, which she doesn't like very well. I have also been slowly losing my milk supply so we are trying to get her to nurse at least a few times. She is strongly apposing this idea but I will keep at it.
We head to Salt Lake this week to see the neurosurgeon there. I think he will say......lets give it another month. Therapy is going well, she has several areas that we are working on but I can already see improvement. She lifted her head while on her tummy for the 1st time today. Yeah Bella!
All in all we are plugging along. Thanks for your love and support.
Bella has had a tough time gaining weight. We have started fortifying every bottle again, which she doesn't like very well. I have also been slowly losing my milk supply so we are trying to get her to nurse at least a few times. She is strongly apposing this idea but I will keep at it.
We head to Salt Lake this week to see the neurosurgeon there. I think he will say......lets give it another month. Therapy is going well, she has several areas that we are working on but I can already see improvement. She lifted her head while on her tummy for the 1st time today. Yeah Bella!
All in all we are plugging along. Thanks for your love and support.
Tuesday, July 10, 2012
Having Fun with my uncle Matt and his two girls in Paradox
Sometimes you just wonder where all the energy comes from to be able to sustain the speed at which we are cruising through life at this time.....ZOOOOOOM! There goes another day, another weekend.
Thank you all once again for the prayers, the fasting, and the emotional lifts and physical project helps to get our house and family in order! We really do appreciate all of you!
Sunday, July 1, 2012
Another Update
I am happy to report that Bella's Prilosec is working well. She is like a whole new baby. She smiles and coos and eats her bottles. She will still fight us a little sometimes but for the most part she is eating like a champ again. Fingers, toes, and eyes crossed that this continues. She is also willing to take larger amounts per feeding. We are up to 90ml (3 oz) almost every feeding.
We have also started with a new therapist who I LOVE!!! She was impressed when she first saw Bella. She said she never would have guessed that Bella had been through so much just by looking at her. We knew, but had it reaffirmed that Bella has some pretty significant tightness in her legs. We are working daily on helping her so that she can continue to grow and meet milestones on her own time frame.
While we were at therapy we saw 2 other kiddos that had serious brain trauma at birth. One little girl was 6 and she walked with a little limp, BUT she was walking and talking (things they told her mom she would never do). The little boy was 18 months and walking and starting to say cute words and blow kisses to Bella. Again, his mom was told he would never do those things. I teared up right there in the office. I wanted to go squeeze both of them and their parents and tell them how happy I was. Bella will walk and talk and be a happy girl. I know it!! It might take time and not come in the way my other kiddos did it but it will happen.
In other medical news, Bella is NOT having seizures (yipee). We do have to go see the eye doctor soon because her eyes, well, they shake or quiver for lack of a better way to describe it. And she has a lazy eye. So we will get that scheduled soon.
We will continue to have weekly head ultrasounds and visits with our neuro dr here in town. Then another follow up in Salt Lake later in the month.
I know I say this every time but thank you, thank you, thank you for your thoughts and prayers. They mean so much to our family.
I will post some pictures soon. We have a new pool in the back yard so my three oldest children look like little lobsters (yes, I get the mom of the year award for not remembering to sunscreen their faces). We even let Bella get her toes wet.....she didn't like it, not one bit!
Prayers continue for her to eat and grow!!
We have also started with a new therapist who I LOVE!!! She was impressed when she first saw Bella. She said she never would have guessed that Bella had been through so much just by looking at her. We knew, but had it reaffirmed that Bella has some pretty significant tightness in her legs. We are working daily on helping her so that she can continue to grow and meet milestones on her own time frame.
While we were at therapy we saw 2 other kiddos that had serious brain trauma at birth. One little girl was 6 and she walked with a little limp, BUT she was walking and talking (things they told her mom she would never do). The little boy was 18 months and walking and starting to say cute words and blow kisses to Bella. Again, his mom was told he would never do those things. I teared up right there in the office. I wanted to go squeeze both of them and their parents and tell them how happy I was. Bella will walk and talk and be a happy girl. I know it!! It might take time and not come in the way my other kiddos did it but it will happen.
In other medical news, Bella is NOT having seizures (yipee). We do have to go see the eye doctor soon because her eyes, well, they shake or quiver for lack of a better way to describe it. And she has a lazy eye. So we will get that scheduled soon.
We will continue to have weekly head ultrasounds and visits with our neuro dr here in town. Then another follow up in Salt Lake later in the month.
I know I say this every time but thank you, thank you, thank you for your thoughts and prayers. They mean so much to our family.
I will post some pictures soon. We have a new pool in the back yard so my three oldest children look like little lobsters (yes, I get the mom of the year award for not remembering to sunscreen their faces). We even let Bella get her toes wet.....she didn't like it, not one bit!
Prayers continue for her to eat and grow!!
Thursday, June 21, 2012
Update-Bella follow up in SLC
The neurosurgeon was pleased with how Bella is presenting neurologically. He has reduced her chances of needing a permanent chat shunt to 20%. That is great news. He did not like the way the ultrasounds looked on her ventricles. But, he was very pleased with how she's doing neurologically!
She has also recently followed up with a pediatrician here in town & been diagnosed with Thrush. So she has started on a new medication for that.
The pediatrician also changed her reflux medication to Prevacid. As she has not been tolerating feeding very well and we have been fearful she is developing an oral aversion, which is really scary!
So we pray, fret, pray more, worry, then everyone reminds us to be patient. It's tough. It's emotionally & physically draining.
Thank you for all the prayers & support. We do appreciate your positiveness& faith and prayers. We will try to keep up the blog a little better. Just been super busy!
She has also recently followed up with a pediatrician here in town & been diagnosed with Thrush. So she has started on a new medication for that.
The pediatrician also changed her reflux medication to Prevacid. As she has not been tolerating feeding very well and we have been fearful she is developing an oral aversion, which is really scary!
So we pray, fret, pray more, worry, then everyone reminds us to be patient. It's tough. It's emotionally & physically draining.
Thank you for all the prayers & support. We do appreciate your positiveness& faith and prayers. We will try to keep up the blog a little better. Just been super busy!
Thursday, June 7, 2012
Medical Updates
Here is a recap of what has happened since we brought Bella home on March 21, 2012.
1. Mid April Bella had a reflux/apnea event that we took her to the ER to be checked out. That ER visit turned into a 5 day hospital stay. During that time it was determined that Bella's right lateral ventricle was enlarging. After much discussion we decided to put in another subgaleal shunt.
Within a week or 2 she went from looking like this to:
The right shunt wasn't working properly. So we decided to remove both shunts and let her brain see what it would do. The only problem was that the huge pocket of fluid kept reforming on the right side of her head. At that point we were talking a VP shunt. Our fabulous neuro. Dr. here found out that we would be willing to go to Salt Lake City verses Denver if we needed to do something with Bella that couldn't be done here in Grand Junction. Our dr. got in touch with a great neuro dr. in Salt Lake and it was decided that the best course of action was to give Bella every opportunity to avoid a permanent shunt. So off to Utah we went.
At Primary Children's hospital, Bella had the following surgeries:
1. Septostomy (connecting the right and left ventricles)
2. Endoscopic Third Ventriculostomy (ETV)
( Endoscopic third ventriculostomy is a type of treatment for some forms of hydrocephalus. It involves making a small opening in the floor of the third ventricle, one of the fluid-filled spaces within the brain, which opens it up to the space surrounding the brain. This allows cerebrospinal fluid to be diverted from within the ventricles to the area outside the brain.)
3. Endoscopic choroid plexus coagulation (tried to find a definition that I could understand, without any luck...so the "Becky" version...they burned off the doo dads inside the ventricles that make the spinal fluid in hopes that they could slow down the rate of production and allow Bella's head a chance to be able to absorb the fluid). If you have time and are so inclined to research this, it is pretty interesting.
4.external ventricular drain (EVD), also known as a ventriculostomy, is a device used in neurosurgery that relieves raised intracranial pressure and hydrocephalus when the normal flow of cerebrospinal fluid around the brain is obstructed. This is a plastic tube placed by neurosurgeons and managed by ICU nurses and Critical Care Paramedics to drain fluid from the ventricles of the brain, and thus keep them decompressed, as well as to monitor intracranial pressure. Before we left, this was removed.
SO, here we are 2 weeks out from surgery and Bella's soft spot is slightly swollen. We went for a head ultrasound on Tuesday of this week and found that her ventricles are about 25% larger then when we left Primary Children's 2 weeks ago. So we have talked about the VP shunt again. Both neuro doctors have been in touch with each other, sharing information and the verdict is???? Wait! Again, hurry and wait. But they still feel that Bella has a good chance to avoid a shunt and want to give her every opportunity to "figure" things out. We have a doctor's appt here in town tomorrow and a follow up in Salt Lake in 2 weeks.
Will you join us in praying for peace and comfort. Prayers that Bella will not be in pain. We are ready to accept either outcome (shunt or no shunt) but we are having trouble being patient. God is good. We feel we have been led on this path for a reason. Is it to help Bella avoid a VP shunt OR is it because through her the doctor can gain more knowledge to help a future child in Bella's situation? We may never know, but we have faith that God knows. We just need help accepting His time frame. I am sure one day we will look back and say, "Oh, now I get it!" In the mean time we are a bundle of nerves.
If you can believe it, this last picture is showing the right side of her head where the HUGE pocket of fluid was. Yep, it has totally gone away. Beautiful Bella!!!
1. Mid April Bella had a reflux/apnea event that we took her to the ER to be checked out. That ER visit turned into a 5 day hospital stay. During that time it was determined that Bella's right lateral ventricle was enlarging. After much discussion we decided to put in another subgaleal shunt.
The right shunt wasn't working properly. So we decided to remove both shunts and let her brain see what it would do. The only problem was that the huge pocket of fluid kept reforming on the right side of her head. At that point we were talking a VP shunt. Our fabulous neuro. Dr. here found out that we would be willing to go to Salt Lake City verses Denver if we needed to do something with Bella that couldn't be done here in Grand Junction. Our dr. got in touch with a great neuro dr. in Salt Lake and it was decided that the best course of action was to give Bella every opportunity to avoid a permanent shunt. So off to Utah we went.
1. Septostomy (connecting the right and left ventricles)
2. Endoscopic Third Ventriculostomy (ETV)
( Endoscopic third ventriculostomy is a type of treatment for some forms of hydrocephalus. It involves making a small opening in the floor of the third ventricle, one of the fluid-filled spaces within the brain, which opens it up to the space surrounding the brain. This allows cerebrospinal fluid to be diverted from within the ventricles to the area outside the brain.)
3. Endoscopic choroid plexus coagulation (tried to find a definition that I could understand, without any luck...so the "Becky" version...they burned off the doo dads inside the ventricles that make the spinal fluid in hopes that they could slow down the rate of production and allow Bella's head a chance to be able to absorb the fluid). If you have time and are so inclined to research this, it is pretty interesting.
4.external ventricular drain (EVD), also known as a ventriculostomy, is a device used in neurosurgery that relieves raised intracranial pressure and hydrocephalus when the normal flow of cerebrospinal fluid around the brain is obstructed. This is a plastic tube placed by neurosurgeons and managed by ICU nurses and Critical Care Paramedics to drain fluid from the ventricles of the brain, and thus keep them decompressed, as well as to monitor intracranial pressure. Before we left, this was removed.
SO, here we are 2 weeks out from surgery and Bella's soft spot is slightly swollen. We went for a head ultrasound on Tuesday of this week and found that her ventricles are about 25% larger then when we left Primary Children's 2 weeks ago. So we have talked about the VP shunt again. Both neuro doctors have been in touch with each other, sharing information and the verdict is???? Wait! Again, hurry and wait. But they still feel that Bella has a good chance to avoid a shunt and want to give her every opportunity to "figure" things out. We have a doctor's appt here in town tomorrow and a follow up in Salt Lake in 2 weeks.
Will you join us in praying for peace and comfort. Prayers that Bella will not be in pain. We are ready to accept either outcome (shunt or no shunt) but we are having trouble being patient. God is good. We feel we have been led on this path for a reason. Is it to help Bella avoid a VP shunt OR is it because through her the doctor can gain more knowledge to help a future child in Bella's situation? We may never know, but we have faith that God knows. We just need help accepting His time frame. I am sure one day we will look back and say, "Oh, now I get it!" In the mean time we are a bundle of nerves.
Blessing Day
This year, Mother's Day was extra special for me. Not only did I get to celebrate the gift of having 4 beautiful children, we were able to bless Isabelle. She was given the sweetest blessing by her father. I am reminded of the love God has for me and my family. Here are some pictures. Not as many as I would have liked because the batteries in my camera died....go figure :)
Thursday, May 31, 2012
Happy Birthday Daddy!!
Just want to take a minute and wish my husband a very happy birthday. I love you so much Matty P. I hope you have a great year. Thank you for giving me a wonderful life and 4 beautiful children.
Recent pics of Bella
On the way home from Salt Lake she was such a good girl. Then recent pics with older sister Abby
Wednesday, May 30, 2012
Home!!
We are home!! I wish I could say that my worry was gone since the surgery, but I find that I still freak out about everything. I think that is just my new normal.
Bella is doing amazing. We will have to watch her head closely for the next few months but we are hopeful that we have avoided a permanent shunt. Primary Children's was so good to us and we loved Dr. Riva-Cambrin. Having said that, it is so good to be home.
I will try to post pictures soon. Just wanted to say a big thank you for all the prayers and support.
Bella is doing amazing. We will have to watch her head closely for the next few months but we are hopeful that we have avoided a permanent shunt. Primary Children's was so good to us and we loved Dr. Riva-Cambrin. Having said that, it is so good to be home.
I will try to post pictures soon. Just wanted to say a big thank you for all the prayers and support.
Sunday, May 27, 2012
5-26-12 Bella-bird
Cute, cute nesting Bella bird. She must've been tuckered out from yesterday cause she slept a long while today.
Neuro resident & On-call Neurosurgeon came in this am & answered our questions(they needed to be reminded we lived in Colorado), so one more night to monitor Bella-& then planned discharge Sunday. However, Becky will more than likely stay one more night to make sure all is well before heading back to GJ.
We are super stoked about these procedures working & preventing the permanent shunt. So so excited for Bella, although she may have headaches (she may not like this when she reads it later-but she's an "air-head"- bits of pockets of air from the mini scope remain that will take time to be reabsorbed) & tummy aches from getting rid of anesthesia & pain medicine-she continues on Zantac, Mylicon drops for the gas bubbles, & Tylenol for pain.
A special thanks to Granny for staying with Bella these nights at the hospital. Great job Gran! We love you.
Well off to bed, these late nights are catching up to us-& Dallin & myself plan on getting on the road after breakfast tomorrow(this) am.
Neuro resident & On-call Neurosurgeon came in this am & answered our questions(they needed to be reminded we lived in Colorado), so one more night to monitor Bella-& then planned discharge Sunday. However, Becky will more than likely stay one more night to make sure all is well before heading back to GJ.
We are super stoked about these procedures working & preventing the permanent shunt. So so excited for Bella, although she may have headaches (she may not like this when she reads it later-but she's an "air-head"- bits of pockets of air from the mini scope remain that will take time to be reabsorbed) & tummy aches from getting rid of anesthesia & pain medicine-she continues on Zantac, Mylicon drops for the gas bubbles, & Tylenol for pain.
A special thanks to Granny for staying with Bella these nights at the hospital. Great job Gran! We love you.
Well off to bed, these late nights are catching up to us-& Dallin & myself plan on getting on the road after breakfast tomorrow(this) am.
Update 5-25-2012
So...Bella has had a good day: only 2 spit-ups total & her head has done so well they took the EVD (brain drain) out this afternoon & so far so good.
& guess what else? They have weaned her off O2 but we still think she's gonna need it while she sleeps: she is dropping her O2 Sats down into the low 80's when she's sound asleep.
The neuro resident who removed the drain said someone would be back to check in on her-to see if she is leaking spinal fluid at all.
Bella is back to pooping frequently but no blood noted- which may confirm the milk-protein allergy, so sorry for mama as she's had to cut out all dairy-what a trooper-mama doing all she can to help this little miracle baby. Way to go mom!
Otherwise we are just so happy & thankful for all the support & prayers. Thank you everyone.
We still don't know how long we will be here. If they decide to discharge us tomorrow we will stay in town at least overnight.
& guess what else? They have weaned her off O2 but we still think she's gonna need it while she sleeps: she is dropping her O2 Sats down into the low 80's when she's sound asleep.
The neuro resident who removed the drain said someone would be back to check in on her-to see if she is leaking spinal fluid at all.
Bella is back to pooping frequently but no blood noted- which may confirm the milk-protein allergy, so sorry for mama as she's had to cut out all dairy-what a trooper-mama doing all she can to help this little miracle baby. Way to go mom!
Otherwise we are just so happy & thankful for all the support & prayers. Thank you everyone.
We still don't know how long we will be here. If they decide to discharge us tomorrow we will stay in town at least overnight.
Thursday, May 24, 2012
Post-op day 1
Update: Bella had a good night. She is back to full feeds & doing well. Had her 1st CT scan today-we're waiting results.
Incisions look good. The drain is now open-allowing fluid to come out when her pressures are increased-when she's angry or bearing down.
Pics are posted below.
Plan is to leave the drain unclamps today, then clamp tomorrow & see what her ventricles do. Then we'll know by tomorrow afternoon if she will need the permanent shunt. Let's hope & pray not.
Dallin had fun with Spiderman yesterday here at the hospital so I included those pics as well.
Incisions look good. The drain is now open-allowing fluid to come out when her pressures are increased-when she's angry or bearing down.
Pics are posted below.
Plan is to leave the drain unclamps today, then clamp tomorrow & see what her ventricles do. Then we'll know by tomorrow afternoon if she will need the permanent shunt. Let's hope & pray not.
Dallin had fun with Spiderman yesterday here at the hospital so I included those pics as well.
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