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Saturday, December 12, 2009
Urgent Plea for families for these children!
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Friday, December 11, 2009
Timmy, Ivan and Ruslana
These sweet boys are listed on Reece's Rainbow. Both of them will be turning 4 years old soon and will be sent to the instution if not adopted by then.
Timmy (12)
BOY, Born February 22, 2006
SIGNIFICANT RISK, PLEASE ADOPT ME SOON!!
Little Timmy has severe, untreated hydrocephalus, and this pressure is affecting his eyes. He is unable to see at this time, but he does have strabismus and cognitive delays resulting from the hydrocephaly. Surgery and a shunt will be a miracle for him. Please consider Timmy, he is facing the institution soon.
Ivan (12)
BOY, Born May 4, 2006
Ivan also has untreated hydrocephalus. He has strabismus, and cognitive and speech delay. He is not able to walk yet. But he is cute as a button and will blossom after surgery in a loving family environment! Ivan is also facing the institution soon, and can be adopted with Timmy and several other children with DS in this same orphanage.
Neither of the boys have any money in their grant funds, so even if you aren't in a position to adopt, you can still help. Every single penny that you give helps the family who is able to commit to them. They are from the same orphanage so they can be adopted together! They would make a sweet set of brothers, don't you think?
Also, after losing her family earlier this week and facing and imminent transfer to the institution, ANOTHER family has stepped up to bring Ruslana home! They do need your help though as adoption is very costly. They have 7 weeks to raise $25,000. Will you please help them? You can help them just by advocating and by prayer. Please visit their blog and put Ruslana's button on your blog.
Grab This Button
Timmy (12)
BOY, Born February 22, 2006
SIGNIFICANT RISK, PLEASE ADOPT ME SOON!!
Little Timmy has severe, untreated hydrocephalus, and this pressure is affecting his eyes. He is unable to see at this time, but he does have strabismus and cognitive delays resulting from the hydrocephaly. Surgery and a shunt will be a miracle for him. Please consider Timmy, he is facing the institution soon.
Ivan (12)
BOY, Born May 4, 2006
Ivan also has untreated hydrocephalus. He has strabismus, and cognitive and speech delay. He is not able to walk yet. But he is cute as a button and will blossom after surgery in a loving family environment! Ivan is also facing the institution soon, and can be adopted with Timmy and several other children with DS in this same orphanage.
Neither of the boys have any money in their grant funds, so even if you aren't in a position to adopt, you can still help. Every single penny that you give helps the family who is able to commit to them. They are from the same orphanage so they can be adopted together! They would make a sweet set of brothers, don't you think?
Also, after losing her family earlier this week and facing and imminent transfer to the institution, ANOTHER family has stepped up to bring Ruslana home! They do need your help though as adoption is very costly. They have 7 weeks to raise $25,000. Will you please help them? You can help them just by advocating and by prayer. Please visit their blog and put Ruslana's button on your blog.
Grab This Button
Thursday, December 10, 2009
Saturday, December 5, 2009
You never know who is listening
On a message board about adoption, a woman was saddened to hear that one of the boys from the orphanage where she adopted her son aged out of the home and was no longer available for adoption. She said that he was such a pleasant person and her heart is hurting knowing that he'll most likely never have a 'real' family. In response, Shelley B. wrote something so beautiful and thought provoking and I wanted to share it with all of you.
"Man, oh man....I hear this EVERY single day...."you can't save them all".
But, what keeps my heart from completely breaking is "that one" and "this one" and "those 2".....each and every child that comes home. Over TWO HUNDRED AND TWENTY FIVE kids because ONE little boy was born to an unsuspecting family and another little boy's photo stole that mama's heart and inspired her to put together a website and start a ministry. THAT is why I KNOW that advocating works.....that if we just keep talking, just keep showing the photos, sharing the facts and putting the information out there...it DOES make a difference.
There are days when my heart is overwhelmed with the burden...ONE HUNDRED FORTY SEVEN MILLION orphans....most who will never know the love of a family. I will be honest and tell you that I've had some very "real" conversations with God on this topic. But at the end of the day...at the end of every single day...I am thankful that God has opened my eyes and put this burden in my heart, because somebody has to keep talking.
You're right, advocating is the key. Just keep talking. You never know when someone is listening. I will always remember Milos.....how my heart was breaking on his birthday. I little boy who had survived that horrible institution and been moved to a better place...and because of a birthday was in danger of going back. When I wrote the email to the RR group on his birthday, I was in tears. I just kept talking. I had NO IDEA that the Stolz family was ready to adopt again. Yet, just 2 MONTHS later they are right in this moment in Serbia bringing Milos HOME! That's what keeps me going.
My advice, when you start feeling overwhelmed. ...when you feel like you'd rather just not know about all the kids out there who's situation seems hopeless.... go hang out on the home coming page of RR :) Nope, you can't save them all.....but you can remember them & you can keep talking.
Can you tell I'm leaving tomorrow? I'm a little emotional tonight!"
I can't help but smile when I read that and the part about her being thankful that God has opened her eyes and has put the burden of orphans in her heart REALLY speaks to me. I've seen so many children who were headed for death in a mental institution be saved by a family and they just blossom once they're home. It's amazing what love can do.
Remember, there is never a shortage of families who WANT these children, only a shortage of funds to get them home.
Please take 10 minutes to watch this video of Mary's first year home from Ukraine. It is AMAZING and INSPIRING to watch this sweet girl's transformation coming from the orphanage to her forever family.
"Man, oh man....I hear this EVERY single day...."you can't save them all".
But, what keeps my heart from completely breaking is "that one" and "this one" and "those 2".....each and every child that comes home. Over TWO HUNDRED AND TWENTY FIVE kids because ONE little boy was born to an unsuspecting family and another little boy's photo stole that mama's heart and inspired her to put together a website and start a ministry. THAT is why I KNOW that advocating works.....that if we just keep talking, just keep showing the photos, sharing the facts and putting the information out there...it DOES make a difference.
There are days when my heart is overwhelmed with the burden...ONE HUNDRED FORTY SEVEN MILLION orphans....most who will never know the love of a family. I will be honest and tell you that I've had some very "real" conversations with God on this topic. But at the end of the day...at the end of every single day...I am thankful that God has opened my eyes and put this burden in my heart, because somebody has to keep talking.
You're right, advocating is the key. Just keep talking. You never know when someone is listening. I will always remember Milos.....how my heart was breaking on his birthday. I little boy who had survived that horrible institution and been moved to a better place...and because of a birthday was in danger of going back. When I wrote the email to the RR group on his birthday, I was in tears. I just kept talking. I had NO IDEA that the Stolz family was ready to adopt again. Yet, just 2 MONTHS later they are right in this moment in Serbia bringing Milos HOME! That's what keeps me going.
My advice, when you start feeling overwhelmed. ...when you feel like you'd rather just not know about all the kids out there who's situation seems hopeless.... go hang out on the home coming page of RR :) Nope, you can't save them all.....but you can remember them & you can keep talking.
Can you tell I'm leaving tomorrow? I'm a little emotional tonight!"
I can't help but smile when I read that and the part about her being thankful that God has opened her eyes and has put the burden of orphans in her heart REALLY speaks to me. I've seen so many children who were headed for death in a mental institution be saved by a family and they just blossom once they're home. It's amazing what love can do.
Remember, there is never a shortage of families who WANT these children, only a shortage of funds to get them home.
Please take 10 minutes to watch this video of Mary's first year home from Ukraine. It is AMAZING and INSPIRING to watch this sweet girl's transformation coming from the orphanage to her forever family.
Tuesday, December 1, 2009
$19,935
Well, so far, I have raised $65 for Reece's Rainbow. I still need $19,935 to meet my goal. I'm hopeful that God will send the right people to my blog so that we can make the goal by Christmas. I have some other ideas for fundraising and the ONLY reason why some of hasn't been done yet is because my computer at home is SOOOO slllooooow.
I have these things in mind.
I offered to wrap Christmas gifts for family members and friends for a $25 donation to RR.
I'm having a garage sale at my house every Saturday in December.
I'm currently making a web page where I'll be selling a ton of stuff. (online garage sale)
For the locals, my mom and I are buying a Crawfish table and raffling it off for $1 a ticket.
Any other ideas would be greatly appreciated!
Here are the kiddos that I'm raising the money for. I'm hoping to put half of whatever we make in each of their grant funds.
This is Shea. She has Down syndrome and the same heart defect that Linden has, AV canal defect. Linden's defect was corrected at 11 weeks old and Shea will 4 in January. It is extremely important that Shea gets adopted quickly as she's facing the institution. Once she gets in there, there's no way around it, she won't live very long. This precious girl longs for a family to love her. Isn't she beautiful?
A few months back, I was drawn to this beautiful girl, Anastasia, who just looks like she will make a wonderful daughter. When I sent the money that we made at Linden's birthday party for RR, it was applied to Anastasia without me asking for it to be! Amazing. I would LOVE to take this little girl as my own, but right now I'm just praying that she find a family. She has Down syndrome, too, is already 4.5 and hasn't been transferred to the institution, yet. She's been blessed so far, but it's only a matter of time. I pray that she finds a family soon [and secretly (or not so secretly...it depends on who you ask!) pray that it's us...shhh!] Doesn't she look like an older version of Linden?
Maxim is a precious little boy who has Pierre Robin syndrome. He's almost 4 and is risking institutionalization as well. What a sweet, sweet face this little boy has. I just loved that collared shirt. He looks like he's saying "I'll love you forever."
While your donations are VERY important, your prayers are just as important! Please keep these little guys as well as the Reece's Rainbow ministry in your daily prayers.
Thanks,
Bianca
I have these things in mind.
I offered to wrap Christmas gifts for family members and friends for a $25 donation to RR.
I'm having a garage sale at my house every Saturday in December.
I'm currently making a web page where I'll be selling a ton of stuff. (online garage sale)
For the locals, my mom and I are buying a Crawfish table and raffling it off for $1 a ticket.
Any other ideas would be greatly appreciated!
Here are the kiddos that I'm raising the money for. I'm hoping to put half of whatever we make in each of their grant funds.
This is Shea. She has Down syndrome and the same heart defect that Linden has, AV canal defect. Linden's defect was corrected at 11 weeks old and Shea will 4 in January. It is extremely important that Shea gets adopted quickly as she's facing the institution. Once she gets in there, there's no way around it, she won't live very long. This precious girl longs for a family to love her. Isn't she beautiful?
A few months back, I was drawn to this beautiful girl, Anastasia, who just looks like she will make a wonderful daughter. When I sent the money that we made at Linden's birthday party for RR, it was applied to Anastasia without me asking for it to be! Amazing. I would LOVE to take this little girl as my own, but right now I'm just praying that she find a family. She has Down syndrome, too, is already 4.5 and hasn't been transferred to the institution, yet. She's been blessed so far, but it's only a matter of time. I pray that she finds a family soon [and secretly (or not so secretly...it depends on who you ask!) pray that it's us...shhh!] Doesn't she look like an older version of Linden?
Maxim is a precious little boy who has Pierre Robin syndrome. He's almost 4 and is risking institutionalization as well. What a sweet, sweet face this little boy has. I just loved that collared shirt. He looks like he's saying "I'll love you forever."
While your donations are VERY important, your prayers are just as important! Please keep these little guys as well as the Reece's Rainbow ministry in your daily prayers.
Thanks,
Bianca
Sunday, November 22, 2009
I'm feeling inspired.....to raise $20,000 by Christmas!
It's been quite awhile since I've last updated my blog. I'm updating tonight because I have something very important on my heart that I need to share. I'm constantly checking 
on 'my' babies on Reece's Rainbow. If you take a look, you'll see hundreds of orphans with Down syndrome and other special needs just waiting for a family. These sweet angels sent down from God to teach us what His love truly is. These babies live their whole lives not being wanted, kissed, loved, hugged, smiled at, sang to, read to, and basically being talked to like they are dumb because they have an extra 21st chromosome. If they aren't adopted by 4 years old, they are sent to a mental institution where 80% of them will die within the first year. This just breaks my heart.
I recently stumbled across this blog http://the30dayjourneyforhope.blogspot.com/. There are posts written by an 11 year old girl who is raising money for her family to bring home 1 year old, Darya from Russia. She's relying on faith in God to raise $20,000 by Thanksgiving! She gave herself 1 week for God to show them that nothing was impossible by putting her trust in HIM. The total of how much they've raised in 3 days will be announced tomorrow but from what I've read, they are very close to their goal. Isn't that amazing!?!?
I'm feeling inspired tonight. I'm thinking how easy it would be to raise money for Reece's Rainbow, myself. I bet that I can make $20,000 by Christmas! How amazing would that be for that money to be split up between several families so that more kids can be going home after the New Year! If every person who had read my blog donated $1, we would have over $11,000 right now!! Every single penny counts. Children's lives are on the line, here. So, I challenge you, if you feel compelled to give to a very worthy cause this Christmas, please email me at joeandbianca@yahoo.com. We have 33 days until Christmas! Ready.....set.......GOOOOOOO!!!!!!!!!!!!!!
Please watch this video and be inspired, too!!
http://www.onetruemedia.com/shared?p=9b08ab7214bb71b4b33e33&skin_id=1602
Bianca
UPDATE: I've added a DONATE button in the upper right hand of my blog to send money via Paypal.
on 'my' babies on Reece's Rainbow. If you take a look, you'll see hundreds of orphans with Down syndrome and other special needs just waiting for a family. These sweet angels sent down from God to teach us what His love truly is. These babies live their whole lives not being wanted, kissed, loved, hugged, smiled at, sang to, read to, and basically being talked to like they are dumb because they have an extra 21st chromosome. If they aren't adopted by 4 years old, they are sent to a mental institution where 80% of them will die within the first year. This just breaks my heart.I recently stumbled across this blog http://the30dayjourneyforhope.blogspot.com/. There are posts written by an 11 year old girl who is raising money for her family to bring home 1 year old, Darya from Russia. She's relying on faith in God to raise $20,000 by Thanksgiving! She gave herself 1 week for God to show them that nothing was impossible by putting her trust in HIM. The total of how much they've raised in 3 days will be announced tomorrow but from what I've read, they are very close to their goal. Isn't that amazing!?!?
I'm feeling inspired tonight. I'm thinking how easy it would be to raise money for Reece's Rainbow, myself. I bet that I can make $20,000 by Christmas! How amazing would that be for that money to be split up between several families so that more kids can be going home after the New Year! If every person who had read my blog donated $1, we would have over $11,000 right now!! Every single penny counts. Children's lives are on the line, here. So, I challenge you, if you feel compelled to give to a very worthy cause this Christmas, please email me at joeandbianca@yahoo.com. We have 33 days until Christmas! Ready.....set.......GOOOOOOO!!!!!!!!!!!!!!
Please watch this video and be inspired, too!!
http://www.onetruemedia.com/shared?p=9b08ab7214bb71b4b33e33&skin_id=1602
Bianca
UPDATE: I've added a DONATE button in the upper right hand of my blog to send money via Paypal.
Wednesday, September 16, 2009
Long time no see! An update post of sorts
It's been over two weeks since I last posted. We've been crazy busy with school starting, homework in the afternoons, supper then trying to get the kiddos to bed. Mix in a couple physical therapy sessions, doctor's appointments, my every-other-day migraines, and you see how I can not find time to get on here. Here's a little update on the kids and I'll post another post with pictures soon!
Tristen is in 2nd grade and she's doing really well. The girl loves school. She has her routine down really well. She gets her school uniform out at night and makes her own lunch for the next day. She gets herself up at 6:00 AM and is usually dressed and completely ready by the time I [drag myself] up at 6:30AM. Yay!
Aislinn is in Kindergarten this year. She's totally my daughter--not a morning person at all. I'm usually dressing her while she's still sleeping, poor girl! She's also doing really well in school. Her teacher sent home a note last week that said "Aislinn is a pleasure to teach!" Yay, at least she's good in school. ;) Just kidding. She's missed the last three days of school, actually, because she's been running a fever. When the Tylenol kicks in, no more fever, but as soon as it wears off, she's not feeling too good. Today, I woke up with a migraine (so, what else is new?) and after I folded a batch of clothes, I couldn't stand it anymore so I asked Aislinn to watch Linden for me for a little while so I could rest in the dark. I put Noggin on and told her to just let Linden play on the floor. Well, I laid in bed for a little while the girls played together. My Excedrin Migraine finally kicked in and I was able to stand up without getting dizzy and got up to check on the girls. They were laying on the floor together and Aislinn was feeding Linden fruit puffs. Aislinn had gone in the closet, picked out an outfit, changed Linden's diaper, dressed her in the outfit she chose, put her hair in a ponytail and started feeding her! The only reason that I woke up was that Aislinn came into my bedroom to tell me that my alarm for Linden's meds was going off. She wanted to know if I wanted her to give Linden her medicine! I was so impressed!
Linden is now 12.5 months old! She had a procedure to open some blocked tear ducts on September 3 and all is well from that. We have a follow-up on Friday. I think she's finally gaining some weight! Her belly is getting rounder and she seems stronger. She's not yet sitting up on her own but she can definitely tolerate it for longer than before. She's really laughing and giggling at us now. She is pushing herself around in her walker (on purpose!). We started some solids last week but that really didn't agree with her belly and poor sweet girl was up half the night trying to poop. She was in alot of pain. I don't think it's time for solids on a regular basis, yet. Her big birthday party is this Sunday so I'll post lots of pictures then.
Today marks one year since my cousin Melanie died in a car accident. Her daughter, Kayla, died from injuries from the same accident 4 days later. If you don't mind, please say some prayers for Mel's sons, Rusty and Eric. Thanks.
Bianca
Tristen is in 2nd grade and she's doing really well. The girl loves school. She has her routine down really well. She gets her school uniform out at night and makes her own lunch for the next day. She gets herself up at 6:00 AM and is usually dressed and completely ready by the time I [drag myself] up at 6:30AM. Yay!
Aislinn is in Kindergarten this year. She's totally my daughter--not a morning person at all. I'm usually dressing her while she's still sleeping, poor girl! She's also doing really well in school. Her teacher sent home a note last week that said "Aislinn is a pleasure to teach!" Yay, at least she's good in school. ;) Just kidding. She's missed the last three days of school, actually, because she's been running a fever. When the Tylenol kicks in, no more fever, but as soon as it wears off, she's not feeling too good. Today, I woke up with a migraine (so, what else is new?) and after I folded a batch of clothes, I couldn't stand it anymore so I asked Aislinn to watch Linden for me for a little while so I could rest in the dark. I put Noggin on and told her to just let Linden play on the floor. Well, I laid in bed for a little while the girls played together. My Excedrin Migraine finally kicked in and I was able to stand up without getting dizzy and got up to check on the girls. They were laying on the floor together and Aislinn was feeding Linden fruit puffs. Aislinn had gone in the closet, picked out an outfit, changed Linden's diaper, dressed her in the outfit she chose, put her hair in a ponytail and started feeding her! The only reason that I woke up was that Aislinn came into my bedroom to tell me that my alarm for Linden's meds was going off. She wanted to know if I wanted her to give Linden her medicine! I was so impressed!
Linden is now 12.5 months old! She had a procedure to open some blocked tear ducts on September 3 and all is well from that. We have a follow-up on Friday. I think she's finally gaining some weight! Her belly is getting rounder and she seems stronger. She's not yet sitting up on her own but she can definitely tolerate it for longer than before. She's really laughing and giggling at us now. She is pushing herself around in her walker (on purpose!). We started some solids last week but that really didn't agree with her belly and poor sweet girl was up half the night trying to poop. She was in alot of pain. I don't think it's time for solids on a regular basis, yet. Her big birthday party is this Sunday so I'll post lots of pictures then.
Today marks one year since my cousin Melanie died in a car accident. Her daughter, Kayla, died from injuries from the same accident 4 days later. If you don't mind, please say some prayers for Mel's sons, Rusty and Eric. Thanks.
Bianca
Wednesday, September 2, 2009
Monday, August 24, 2009
School days
Ok, so I've been slacking off a bit. The girls are now in school so I do have a bit more time to myself. Aislinn is in kindergarten and Tristen is in 2nd grade. They are both loving school so far and come home with some pretty funny stories. They ride the bus in the morning like 'big girls'. They look so cute in their school uniforms waiting for the bus to come, too! Here are some pictures of them on Thursday in khaki and white and on Friday in navy blue and white.
I got this one of Aislinn at her desk when I walked her to her classroom on her first day. Oh boy, did I cry when I had to leave. It's so bittersweet watching your baby grow up and trusting them in someone else's care. I know she's in great hands, though.
The countdown to Linden's birthday is still on. 8 days to go until LINDEN is 1!!
Oh, and Linden had her first experience with a lollipop and I wanted to show y'all. It was so cute and she was so sticky. Ha.
Thanks for reading!
Bianca
I got this one of Aislinn at her desk when I walked her to her classroom on her first day. Oh boy, did I cry when I had to leave. It's so bittersweet watching your baby grow up and trusting them in someone else's care. I know she's in great hands, though.
The countdown to Linden's birthday is still on. 8 days to go until LINDEN is 1!!
Oh, and Linden had her first experience with a lollipop and I wanted to show y'all. It was so cute and she was so sticky. Ha.
Thanks for reading!
Bianca
Tuesday, August 11, 2009
Cardiology update
So we had a cardiologist appointment this morning. I had my neice, Mackenzie, watch the older girls (so that we wouldn't have a three ring circus going on) and my mom came along with me for support. We were very hopeful because Linden has seemed so much healthier in the last few weeks. The nurse weighed Linden and she gained 400 grams (14 oz) in 3 weeks which is a good weight gain for her. She now weighs 15lb9oz at 11.5 months old. Her pulse ox, EKG, and blood pressure all were good as well. When Dr. B walked in he jokingly said "Well, Mama's hair and nails are done, everything must be going well." I guess I looked like a hag before. (Ha! Just kidding!) He said that her pigtails were adorable and that she really looked fabulous. He listened to her heart with his stethescope and said that she sounded better, too. Awesome! She then had an echo done by her nurse Jackie. When Dr. B came back in the echo room, he studied Linden's results and said that she indeed did have 'mild to moderate' MR (mitral valve regurgitation) compared to her 'moderate to severe' MR in April. One of the ways that her drs in Boston tried to explain what could have happened was that possibly because of the two different machines being used here in La and there in Boston that they got different sets of pictures. UM NO! With my completely unprofessional eye, I saw for myself today on Dr. B's echo machine (where he found the MR in the first place) that her results from April and today are very different! I could see the two large jet of blood in the one from April and in today's they show that the jets are much smaller now, although they are still there. Dr. B apologized to us for sending us so far from home and said that he felt 'stupid' when he heard that she didn't need surgery. I told him that it was NOT a wasted trip at all and not to feel stupid. He and the drs in Boston all saw the same thing. God just chose to heal Linden's heart without her having to go through another surgery ;)
And she's off of Digoxin [and Lasix] now! Still on Sotalol (for SVT), Enalapril, and Asprin.
And she's off of Digoxin [and Lasix] now! Still on Sotalol (for SVT), Enalapril, and Asprin.
Monday, August 10, 2009
Thinking about things
On a message board that I frequent (hey bggb!), we were posting about being a parent of a special needs child. It's obviously not for everyone. Before Joe and I were married, we talked about having another baby one day. I had a feeling about how our baby would be, but I didn't want to tell him because I was worried that he would think I was weird or silly. I ended up talking about it with my mom. I told her that I felt if Joe and I would have a baby together that something would be wrong with the baby, that the baby would be different. It didn't necessarily scare me to not want a baby with the man I was going to marry, however. It was so much on my mind that I felt the need to tell Joe, so I did. He kind of looked at me like 'huh?' and arched one eyebrow. I didn't make a big deal about it and never mentioned it again until many months later. May 20, 2008 to be exact. That was the day that we found out that we were having baby girl #3 and that she had a heart defect. The previous week, my routine bloodwork had come back with an elevated risk for Down Syndrome, so at this ultrasound he was looking for specific markers which could indicate a higher/lower risk for Trisomy 21. He found that she had a short nasal bone which was a pretty positive indication for a chromosomal abnormality. He insisted that we have an amnio, but we opted out of that due to the risk for miscarriage. It wouldn't change anything. It wouldn't make her heart defect go away or change anything about her. We wanted her no matter what.
Joe brought up what I said many months earlier and strangely enough, it brought me more of a sense of peace rather than sadness. 3.5 months later when our precious girl came into this world in the middle of a hurricane (I had to be cleaned up while Joe held a flashlight for the nurse!), I felt completely validated in how I felt. I felt like Linden was always supposed to be here, with me. I felt like I had been chosen to be her mother long before she was even conceived. God is always in control. He sees the past, the present, and the future. He knew everything that was going to happen to Linden thus far. He knew that she would touch people. Linden may not always fit perfectly in this world, but she wasn't created for this world. I truly believe that she was sent to us so that God could perform this miracle and show us that He's still here. He still loves us.
We're seeing the cardiologist tomorrow morning for the first time since Boston. Please pray with us for continued good news.
Something nice to read is The Creed of Babies with Down Syndrome. (I do not know who the author is.)
My face may be different
But my feelings the same
I laugh and I cry
And I take pride in my gains
I was sent here among you
To teach you to love
As God in the heavens
Looks down from above
To Him I'm no different
His love knows no bounds
It's those here among you
In cities and towns
That judge me by standards
That man has imparted
But this family I've chosen
Will help me get started
For I'm one of the children
So special and few
That came here to learn
The same lessons as you
That love is acceptance
It must come from the heart
We all have the same purpose
Though not the same start
The Lord gave me life
To live and embrace
And I'll do it as you do
But at my own pace
Bianca
Joe brought up what I said many months earlier and strangely enough, it brought me more of a sense of peace rather than sadness. 3.5 months later when our precious girl came into this world in the middle of a hurricane (I had to be cleaned up while Joe held a flashlight for the nurse!), I felt completely validated in how I felt. I felt like Linden was always supposed to be here, with me. I felt like I had been chosen to be her mother long before she was even conceived. God is always in control. He sees the past, the present, and the future. He knew everything that was going to happen to Linden thus far. He knew that she would touch people. Linden may not always fit perfectly in this world, but she wasn't created for this world. I truly believe that she was sent to us so that God could perform this miracle and show us that He's still here. He still loves us.
We're seeing the cardiologist tomorrow morning for the first time since Boston. Please pray with us for continued good news.
Something nice to read is The Creed of Babies with Down Syndrome. (I do not know who the author is.)
My face may be different
But my feelings the same
I laugh and I cry
And I take pride in my gains
I was sent here among you
To teach you to love
As God in the heavens
Looks down from above
To Him I'm no different
His love knows no bounds
It's those here among you
In cities and towns
That judge me by standards
That man has imparted
But this family I've chosen
Will help me get started
For I'm one of the children
So special and few
That came here to learn
The same lessons as you
That love is acceptance
It must come from the heart
We all have the same purpose
Though not the same start
The Lord gave me life
To live and embrace
And I'll do it as you do
But at my own pace
Bianca
Our family!!
Here's a recent picture of all of us. I'm going to write a blog later on tonight, so be looking for it tomorrrow!!
Wednesday, July 29, 2009
A Granny's Point of View
This was written for me by my mother. It's her version of Linden's miracle!
My story about Linden's miracle begins a few weeks ago...We knew when Linden's surgery was set for and of course, we had prayers and support from the beginning, though way too much time to think about it all, I guess. Anyhow, I spent almost the whole afternoon of July 2 and all of July 3 nursing fears for Linden, even though I had been praying, and nothing had really changed with her. This feeling of doom made me very emotional and sad, apparently, I was not good at hiding my feelings either. I attended morning mass on Friday, July 3 in search of consolation from the Lord. After mass, we were invited to receive a blessing associated with a relic of St. Thomas Aquinas. Fr. Sibley showed concern for my sadness and even offered to come to Boston for the surgery. He said he would ask for prayers for Linden at all of the weekend's masses. My friend Jonel stayed after mass and talked to me for nearly an hour. We talked and talked and she made a profound offering to me that I had never heard before. She told me that I should make a trade with God, offer him something of myself and that I should ask for the whole thing..."don't hesitate, pray for a miracle," she insisted. Then she drew me the most beautiful mental picture. I will try to quote her directly now (remember we were both sniffling and blinking back tears at this point): She told me, "You know, there are people around the world that pray all day long: nuns, monks, priests, old people...sometimes their prayers are not for anything in particular. I am going to go home and ask God to take all of the 'loose prayers' around the world and gather them up for Linden." I was, and still am touched by such a unique expression of prayer. I found this idea so profound. I pictured God's hand waving through the air like a butterfly net scooping all of these airborne, hazy, undulating Our Fathers and Hail Marys and bringing them to his heart and whispering Linden's name. Later that morning, Bianca and I had a long talk about and she opened up about her fears. I tried to comfort her, but I too was afraid. All I could do was relay Jonel's message of prayer to Bianca. Linden's beautiful name was spoken out loud by the priests at masses at St. Ann's church that weekend. The congregation at New Hope Fellowship (Joseph's church from childhood) also prayed for Linden. Many of the people of New Hope had been praying for Linden for weeks by then. She had had prayers for her offered by our youth group, as well. She was well covered in prayer.
On Monday, I began a week of catechism classes, I was teaching sixth grade. It was the best week. The teachers enjoyed it, the kids enjoyed it. We all learned so much and were joined together in church daily to worship and share in daily mass. Each day the children seemed more and more interested in the mass. The groups had been given the opportunity to ask for prayers for certain needs and, of course, Linden was mentioned often that week. At some point in that week, I remember getting a text from Bianca that her fears had gone away and she was certain that Linden was going to be fine. I, too, had experienced a sense of calmness. Surely, this consolation was from the Holy Spirit. After such a beautiful week, its no surprise that I woke up early one day in the next week with inspiration as my alarm clock. For some reason, out of the blue, I woke up and my first thought was about The Infant of Prague. The image of Jesus as a child/king with a flowing gown, a crown on his head and holding the earth in his hand is an old Catholic symbol of miracles. I had grown up seeing my mother's statue of the Infant of Prague on her dresser and was facinated by the sweetness of the baby's face. I always loved dolls and so was naturally drawn to the statue. I never really knew very much about the statue and its representation of miracles and conversion. I did know that the statue had been given to my mother by her mother in law at a negative time in my parents early years of marriage. Ironically, I live in the house of that grandmother now. My grandmother was very religious and I suppose she had encouraged my mother to pray to the Infant Jesus of Prague to help her in her needs. I have no explanation for my sudden awakening with the Infant of Prague on my mind on that particular morning, however. I surmise now that my mother and grandmother joined together and asked the Holy Spirit to guide me through baby Linden's ordeal using the consolation of the Infant Jesus. So I proceeded to Google information about the Infant of Prague and what the story was behind this devotion. To make it short as possible, the veneration of the Infant of Prague has been attributed with many miracles and conversions for centuries. There are several prayers and novenas directed to the Infant of Prague. One in particular caught my attention. (I had discovered a beautiful nine-hour novena card way back in April and had purchased the card especially for Linden's day of surgery) Much to my surprise, when researching the Infant of Prague, I once again came across this nine-hour novena and found that it was to be prayed specifically to the Infant of Prague. This really struck me as a "wow" moment. Everything seemed tied together somehow and now I knew that my mom and grandmother had been working in heaven together for quite sometime. I brought all of this information together and presented Bianca with this story of exciting turn of events, along with a small statue of the Infant that had been in my store (ignored!) for an undetermined amount of time.
Skip to the days of the non surgery! I brought Bianca and Joseph to New Orleans to catch their plane on Wednesday and off they went. Kirk, Kip, Aislinn and I left Thursday afternoon with Boston as our destination. Of course, I said many prayers along the way. I had heard from Bianca on that day that the tests Linden had undergone that day showed improvement in her condition, and the doctor was puzzled... LOL! Bianca said that MAYBE Linden may not need the surgery... dare we breathe....
We slept somewhere in Tuscalusa, Alabama that night. When we began driving on Friday morning, I began the nine-hour novena. Needless to say, our prayers were answered before the novena was completed! By midmorning, Bianca called and said that they were being DISCHARGED that day! No surgery! When I started the novena, it was to ask for something and I completed the novena with expressions of gratitude to the Lord for the miracle.We did not go to Boston, we went to visit Gianna, Brady and Jack in Erie, instead. By the time we got back to Mamou, word of our miracle had been spread. Everywhere I went, people acknowledge the event as miraculous. Everyone felt like they had been part of the miracle because they had participated in prayers, fundraisers and other aspects of Linden's story. I felt compelled to tell everyone about the miracle.
Bianca and Joseph remained in Boston until the Tuesday.After picking them up at the airport on Tuesday, we went to a restaurant in Metairie for lunch. We marveled at this turn of events. I guess we must have been glowing. A couple of ladies were sitting at the table next to us and noticed our Linden. They made comments about her throughout our meal. Everyone loves a precious baby, you know, and Linden was gorgeous in a scrumptious pink outfit. The ladies had made enough overtures towards her while I held her that I had to tell them the news.One of the ladies commented on Linden's blue eyes and one thing led to another and I told them about her special week.I said that she was just back from Boston from not having surgery!Obviously touched by this, one of the ladies asked, "Had ya'll prayed to Saint Jude?!"I said, "We prayed to Saint Jude for her first surgery, but for this surgery we prayed the novena to the Infant of Prague..."The other woman gasped and said, "Oh, I love the Infant of Prague!" After this, she thrust her hand forward to show us her INFANT OF PRAGUE RING!!! on her finger! I have to tell you, I did plenty of searching for Infant of Prague products and never once had I seen a ring...In two total strangers, the Lord sent us another sign of his continuing watchful gaze. I am certain that He is not finished using Linden Caroline Olivier to bring even more people closer to Him. Infant to infant.
My story about Linden's miracle begins a few weeks ago...We knew when Linden's surgery was set for and of course, we had prayers and support from the beginning, though way too much time to think about it all, I guess. Anyhow, I spent almost the whole afternoon of July 2 and all of July 3 nursing fears for Linden, even though I had been praying, and nothing had really changed with her. This feeling of doom made me very emotional and sad, apparently, I was not good at hiding my feelings either. I attended morning mass on Friday, July 3 in search of consolation from the Lord. After mass, we were invited to receive a blessing associated with a relic of St. Thomas Aquinas. Fr. Sibley showed concern for my sadness and even offered to come to Boston for the surgery. He said he would ask for prayers for Linden at all of the weekend's masses. My friend Jonel stayed after mass and talked to me for nearly an hour. We talked and talked and she made a profound offering to me that I had never heard before. She told me that I should make a trade with God, offer him something of myself and that I should ask for the whole thing..."don't hesitate, pray for a miracle," she insisted. Then she drew me the most beautiful mental picture. I will try to quote her directly now (remember we were both sniffling and blinking back tears at this point): She told me, "You know, there are people around the world that pray all day long: nuns, monks, priests, old people...sometimes their prayers are not for anything in particular. I am going to go home and ask God to take all of the 'loose prayers' around the world and gather them up for Linden." I was, and still am touched by such a unique expression of prayer. I found this idea so profound. I pictured God's hand waving through the air like a butterfly net scooping all of these airborne, hazy, undulating Our Fathers and Hail Marys and bringing them to his heart and whispering Linden's name. Later that morning, Bianca and I had a long talk about and she opened up about her fears. I tried to comfort her, but I too was afraid. All I could do was relay Jonel's message of prayer to Bianca. Linden's beautiful name was spoken out loud by the priests at masses at St. Ann's church that weekend. The congregation at New Hope Fellowship (Joseph's church from childhood) also prayed for Linden. Many of the people of New Hope had been praying for Linden for weeks by then. She had had prayers for her offered by our youth group, as well. She was well covered in prayer.
On Monday, I began a week of catechism classes, I was teaching sixth grade. It was the best week. The teachers enjoyed it, the kids enjoyed it. We all learned so much and were joined together in church daily to worship and share in daily mass. Each day the children seemed more and more interested in the mass. The groups had been given the opportunity to ask for prayers for certain needs and, of course, Linden was mentioned often that week. At some point in that week, I remember getting a text from Bianca that her fears had gone away and she was certain that Linden was going to be fine. I, too, had experienced a sense of calmness. Surely, this consolation was from the Holy Spirit. After such a beautiful week, its no surprise that I woke up early one day in the next week with inspiration as my alarm clock. For some reason, out of the blue, I woke up and my first thought was about The Infant of Prague. The image of Jesus as a child/king with a flowing gown, a crown on his head and holding the earth in his hand is an old Catholic symbol of miracles. I had grown up seeing my mother's statue of the Infant of Prague on her dresser and was facinated by the sweetness of the baby's face. I always loved dolls and so was naturally drawn to the statue. I never really knew very much about the statue and its representation of miracles and conversion. I did know that the statue had been given to my mother by her mother in law at a negative time in my parents early years of marriage. Ironically, I live in the house of that grandmother now. My grandmother was very religious and I suppose she had encouraged my mother to pray to the Infant Jesus of Prague to help her in her needs. I have no explanation for my sudden awakening with the Infant of Prague on my mind on that particular morning, however. I surmise now that my mother and grandmother joined together and asked the Holy Spirit to guide me through baby Linden's ordeal using the consolation of the Infant Jesus. So I proceeded to Google information about the Infant of Prague and what the story was behind this devotion. To make it short as possible, the veneration of the Infant of Prague has been attributed with many miracles and conversions for centuries. There are several prayers and novenas directed to the Infant of Prague. One in particular caught my attention. (I had discovered a beautiful nine-hour novena card way back in April and had purchased the card especially for Linden's day of surgery) Much to my surprise, when researching the Infant of Prague, I once again came across this nine-hour novena and found that it was to be prayed specifically to the Infant of Prague. This really struck me as a "wow" moment. Everything seemed tied together somehow and now I knew that my mom and grandmother had been working in heaven together for quite sometime. I brought all of this information together and presented Bianca with this story of exciting turn of events, along with a small statue of the Infant that had been in my store (ignored!) for an undetermined amount of time.
Skip to the days of the non surgery! I brought Bianca and Joseph to New Orleans to catch their plane on Wednesday and off they went. Kirk, Kip, Aislinn and I left Thursday afternoon with Boston as our destination. Of course, I said many prayers along the way. I had heard from Bianca on that day that the tests Linden had undergone that day showed improvement in her condition, and the doctor was puzzled... LOL! Bianca said that MAYBE Linden may not need the surgery... dare we breathe....
We slept somewhere in Tuscalusa, Alabama that night. When we began driving on Friday morning, I began the nine-hour novena. Needless to say, our prayers were answered before the novena was completed! By midmorning, Bianca called and said that they were being DISCHARGED that day! No surgery! When I started the novena, it was to ask for something and I completed the novena with expressions of gratitude to the Lord for the miracle.We did not go to Boston, we went to visit Gianna, Brady and Jack in Erie, instead. By the time we got back to Mamou, word of our miracle had been spread. Everywhere I went, people acknowledge the event as miraculous. Everyone felt like they had been part of the miracle because they had participated in prayers, fundraisers and other aspects of Linden's story. I felt compelled to tell everyone about the miracle.
Bianca and Joseph remained in Boston until the Tuesday.After picking them up at the airport on Tuesday, we went to a restaurant in Metairie for lunch. We marveled at this turn of events. I guess we must have been glowing. A couple of ladies were sitting at the table next to us and noticed our Linden. They made comments about her throughout our meal. Everyone loves a precious baby, you know, and Linden was gorgeous in a scrumptious pink outfit. The ladies had made enough overtures towards her while I held her that I had to tell them the news.One of the ladies commented on Linden's blue eyes and one thing led to another and I told them about her special week.I said that she was just back from Boston from not having surgery!Obviously touched by this, one of the ladies asked, "Had ya'll prayed to Saint Jude?!"I said, "We prayed to Saint Jude for her first surgery, but for this surgery we prayed the novena to the Infant of Prague..."The other woman gasped and said, "Oh, I love the Infant of Prague!" After this, she thrust her hand forward to show us her INFANT OF PRAGUE RING!!! on her finger! I have to tell you, I did plenty of searching for Infant of Prague products and never once had I seen a ring...In two total strangers, the Lord sent us another sign of his continuing watchful gaze. I am certain that He is not finished using Linden Caroline Olivier to bring even more people closer to Him. Infant to infant.
Saturday, July 25, 2009
Have you ever witnessed a miracle?
I can say for sure that I have.
My daughter, Linden, is a living, breathing, smiling miracle. Two months ago, her cardiologist sat me down in a room and told me that Linden's had a lot of mitral valve regurgitation (leakage) and that she would need another surgery, soon. He told me that in 6-9 months her heart just wouldn't be good anymore. He had two patients (Linden included) whose heart anatomy was as complicated as Linden's and the other patient didn't make it. I left that appointment feeling so low. She had her first open heart surgery last November, in Boston, at 11 weeks old, but she's just been so healthy that it seemed like she was fine. Her heart told otherwise. A copy of the images from her echocardiogram was sent to her cardiologist in Boston and after reviewing them, he agreed with her cardiologist here that scheduling surgery was the next step.
A few days later I was on the phone with a Sherry from Dr. Breitbart's office in Boston scheduling everything that we would be doing while there. Linden would be having pre-op bloodwork, an EKG, an Echo, and a chest x-ray on Thursday, July 16, and a heart catheterization procedure the following day. Her mitral valve repair was scheduled for Monday, July 20. Sherry told me what to do and what not to do before procedures like not eating 4 hours before the Echo because she would be sedated and 4 hours before her heart cath.
We got to Boston on Wednesday, July 15. My friend, Kelly, picked us up at the airport and brought us to our home for the next couple of weeks, The Devin Nicole House. It's a nice place to stay that the hospital offers to families of cardiac patients. After getting settled in, we took a walk around Boston. We passed in front of Harvard Medical School and it became real to me where we were. I had spent the last few weeks crying and praying that God would heal Linden's heart through the hands of her surgeon and yet here we were, in Boston, at one of the top children's hospitals in the nation. I needed to have faith in our situation, in the doctors and surgeon in charge of her care, and most importantly, in God as He had the last word.
Linden did NOT sleep well at all that first night. For some reason, the dark, quiet room made her very hyper! She was up from 11pm-4:30am yelling, talking to herself, flipping over and scratching the sides of her pack'n'play. It was mighty crazy. Haha. I kept hoping that eventually she would fall asleep as I was nursing her, but no, it did not work. Needless to say, Joe and I were exhausted the next day for her pre-operative testing at 7am. Joe and I were like zombies. Linden had bloodwork, an EKG, a chest x-ray and while we were trying to keep her awake for her sedated echo, she fell asleep. Perfect timing, kiddo. She had to be woken up to get chloral hydrate (meds that made her just sleepy enough to lie still) before her echo. She took it and fell back asleep. Her nurse encouraged Joe and I to go get some lunch while she had her echo done because it would take over an hour and we hadn't eaten breakfast yet. While we ate lunch in the cafeteria, neither of us could stop thinking about Linden. We were hoping that they wouldn't find anything else that was wrong and that things would at least have stayed the same and not gotten worse since her last echo 6 weeks before.
Thinking back now, those last couple of weeks before we went to Boston were so hard on me. I was torn between God's will and my own. What if His will was different than what I wanted? Handing over my fears and my Linden was what I needed to do, but was it ever hard to do. I wasn't sleeping well. I wasn't eating well. I lost some weight. I was cranky all the time. Anything and everything made me burst into tears. One day, my sister-in-law came over with a card from a priest friend of a friend and as I opened it up and read the words "Praying for your strength to accept God's will," I turned into a sobbing mess. I couldn't lose my baby. I just couldn't.
Joe and I held hands and walked back up to the Echo room and as we sat down, I saw three people looking at two images on the screen. I could hear some murmuring and 'mmmhmm's', 'hmmmmm's' but I couldn't really make out what they were saying. They were done, though. Linden had slept the whole time so they were able to get some really good images, they told us. Dr. Breitbart asked Joe if he had a record of Linden's weight gain and I got worried when I heard that. I started thinking that it must have been worse than it was before otherwise why would he be asking that question. We were moved into another room, where Dr. Breitbart and his partner Dr. Caine came in to speak to us about their findings.
"I have somewhat good news," he said, "it seems that Linden's echo today revealed that her leaking valves have slowed down quite a bit since 6 weeks ago."
Joe and I were very confused and asked what that meant.
"We compared her images from today to her images from post-op last November and from the end of May and her image from today is almost identical from November's. From what I see today, it seems like she's gone from a small chance that she won't have surgery to a small chance that she will need surgery. Dr Caine and I are very, very puzzled, though, and we need to go over the images again so we'll have to meet up later and discuss this again. Can you meet me in my office around 4:00? Let's try not to get our hopes up because we do want to do what's best for Linden."
I had a HUGE grin on my face. So did Joe! Linden soon woke up and nursed and then we walked around the hospital for a while trying to waste some time. We had two hours until we were to meet with him again.
Dr. Breitbart walked in with somewhat of a grin on his face. He said that he had gone over all of Linden's images with the Chief of Radiology and Linden's surgeon, Dr. John Mayer, and they all came up with the same conclusion. Linden's heart was BETTER than 6 weeks previous. He said that her condition doesn't get better without surgical intervention, but somehow, some way, Linden's had. Her heart had corrected itself. He did want to go on with doing the heart catheterization procedure the following day to be sure, but just by the look on his face we could tell that he was feeling pretty sure about what he was saying about her possibly not needing surgery.
Joe and I went back to our room at the Devin Nicole House and talked. I just had this overwhelming feeling of peace no matter what was going to happen. We had gone there expecting surgery, so we couldn't necessarily be disappointed if she did end up needing it, but to go home without surgery would be absolutely amazing. I just kept saying, "Whatever happens, we'll be fine. Whatever Linden needs is what she'll get." It didn't hurt either that the news came on the 9 year anniversary of the death of Joe's mom, Carol, who Linden CAROLine is named after. She was definitely watching over Linden and whispering into Jesus' ear that day!
I called my mom and told her what happened that day. She and my dad were driving from Louisiana to Boston and were in Alabama when I talked to her. I told her not to freak out, (she does that from time to time.....haha) but I had some news that I was bursting to just tell someone. When I told her that it was a possiblilty, that Linden wouldn't even need surgery, she burst into tears and said "I changed my prayer today! I have been praying that she would be fine during and after surgery, but then I said 'No, my God is bigger than this, I want a miracle. I pray that she doesn't even have to have surgery." I told her to keep it a secret until we knew for sure. We would know by noon the next day.
Friday morning we woke up around 5:30 and were at the hospital by 7:30 am for Linden to be admitted for her catheterization. She went in around 8:30 and at 10:00am we got a report from her nurse, that she was doing great and they were measuring the pressures in her heart and that they would call us in another hour. I was so exhausted that I rested my head on Joe's shoulder and I guess I feel asleep because the next thing I noticed was Joe nudging me saying "Wake up" and I woke up to Dr Breitbart smiling at us.
He said "It's good news. Linden did great. Everything went fine and I'm very pleased with the measurements. She's fine. We don't need to do surgery at this time! Let her wake up, then she can nurse and then she'll be discharged."
I cannot explain to you the weight that was lifted off of my heart at that moment. Not only did my Jesus come through, he exceeded what was asked of him. All along, I had been praying these words, "Please God, heal Linden's heart through the hands of her surgeon." It NEVER had occured to me to pray for a miracle, for her not to even need surgery. What I heard from her cardiologist in La was so doom and gloom that was asking for what I thought was the bare minimum, just for her to be OK after surgery. I prayed that it would be her last surgery. I am still [almost 2 weeks later] in awe about this.
At 2:00 PM, on Friday, July 17, exactly 8 months since her first open heart surgery, Linden was DISCHARGED from Children's Hospital without needing surgery!!!!!!!!
We called all our friends and family and told them the good news, about our MIRACLE baby. Everyone was in complete awe! Our prayers had been answered and then some! Joe's sisters and brother were flying in on the Sunday-Tuesday for her surgery and didn't want to lose money on the tickets, so they came anyway and we did a bit of celebrating! Instead of being cooped up inside a hospital worried sick about Linden, we were able to enjoy her and enjoy each other for a couple days. How can people still question whether or not there is a God in a situation where something just CANNOT be explained other than it being all about HIM?!
*I'm sorry that it took me SO long to get this posted. EEK. I had alot to say!*
Now, for the pictures.
Sitting in a coffee shop the day before her cath.
Got lashes?!!?
Falling asleep before her ECHO. We tried hard to keep her awake.
Smiles for Daddy
In front of Harvard Medical School
My daughter, Linden, is a living, breathing, smiling miracle. Two months ago, her cardiologist sat me down in a room and told me that Linden's had a lot of mitral valve regurgitation (leakage) and that she would need another surgery, soon. He told me that in 6-9 months her heart just wouldn't be good anymore. He had two patients (Linden included) whose heart anatomy was as complicated as Linden's and the other patient didn't make it. I left that appointment feeling so low. She had her first open heart surgery last November, in Boston, at 11 weeks old, but she's just been so healthy that it seemed like she was fine. Her heart told otherwise. A copy of the images from her echocardiogram was sent to her cardiologist in Boston and after reviewing them, he agreed with her cardiologist here that scheduling surgery was the next step.
A few days later I was on the phone with a Sherry from Dr. Breitbart's office in Boston scheduling everything that we would be doing while there. Linden would be having pre-op bloodwork, an EKG, an Echo, and a chest x-ray on Thursday, July 16, and a heart catheterization procedure the following day. Her mitral valve repair was scheduled for Monday, July 20. Sherry told me what to do and what not to do before procedures like not eating 4 hours before the Echo because she would be sedated and 4 hours before her heart cath.
We got to Boston on Wednesday, July 15. My friend, Kelly, picked us up at the airport and brought us to our home for the next couple of weeks, The Devin Nicole House. It's a nice place to stay that the hospital offers to families of cardiac patients. After getting settled in, we took a walk around Boston. We passed in front of Harvard Medical School and it became real to me where we were. I had spent the last few weeks crying and praying that God would heal Linden's heart through the hands of her surgeon and yet here we were, in Boston, at one of the top children's hospitals in the nation. I needed to have faith in our situation, in the doctors and surgeon in charge of her care, and most importantly, in God as He had the last word.
Linden did NOT sleep well at all that first night. For some reason, the dark, quiet room made her very hyper! She was up from 11pm-4:30am yelling, talking to herself, flipping over and scratching the sides of her pack'n'play. It was mighty crazy. Haha. I kept hoping that eventually she would fall asleep as I was nursing her, but no, it did not work. Needless to say, Joe and I were exhausted the next day for her pre-operative testing at 7am. Joe and I were like zombies. Linden had bloodwork, an EKG, a chest x-ray and while we were trying to keep her awake for her sedated echo, she fell asleep. Perfect timing, kiddo. She had to be woken up to get chloral hydrate (meds that made her just sleepy enough to lie still) before her echo. She took it and fell back asleep. Her nurse encouraged Joe and I to go get some lunch while she had her echo done because it would take over an hour and we hadn't eaten breakfast yet. While we ate lunch in the cafeteria, neither of us could stop thinking about Linden. We were hoping that they wouldn't find anything else that was wrong and that things would at least have stayed the same and not gotten worse since her last echo 6 weeks before.
Thinking back now, those last couple of weeks before we went to Boston were so hard on me. I was torn between God's will and my own. What if His will was different than what I wanted? Handing over my fears and my Linden was what I needed to do, but was it ever hard to do. I wasn't sleeping well. I wasn't eating well. I lost some weight. I was cranky all the time. Anything and everything made me burst into tears. One day, my sister-in-law came over with a card from a priest friend of a friend and as I opened it up and read the words "Praying for your strength to accept God's will," I turned into a sobbing mess. I couldn't lose my baby. I just couldn't.
Joe and I held hands and walked back up to the Echo room and as we sat down, I saw three people looking at two images on the screen. I could hear some murmuring and 'mmmhmm's', 'hmmmmm's' but I couldn't really make out what they were saying. They were done, though. Linden had slept the whole time so they were able to get some really good images, they told us. Dr. Breitbart asked Joe if he had a record of Linden's weight gain and I got worried when I heard that. I started thinking that it must have been worse than it was before otherwise why would he be asking that question. We were moved into another room, where Dr. Breitbart and his partner Dr. Caine came in to speak to us about their findings.
"I have somewhat good news," he said, "it seems that Linden's echo today revealed that her leaking valves have slowed down quite a bit since 6 weeks ago."
Joe and I were very confused and asked what that meant.
"We compared her images from today to her images from post-op last November and from the end of May and her image from today is almost identical from November's. From what I see today, it seems like she's gone from a small chance that she won't have surgery to a small chance that she will need surgery. Dr Caine and I are very, very puzzled, though, and we need to go over the images again so we'll have to meet up later and discuss this again. Can you meet me in my office around 4:00? Let's try not to get our hopes up because we do want to do what's best for Linden."
I had a HUGE grin on my face. So did Joe! Linden soon woke up and nursed and then we walked around the hospital for a while trying to waste some time. We had two hours until we were to meet with him again.
Dr. Breitbart walked in with somewhat of a grin on his face. He said that he had gone over all of Linden's images with the Chief of Radiology and Linden's surgeon, Dr. John Mayer, and they all came up with the same conclusion. Linden's heart was BETTER than 6 weeks previous. He said that her condition doesn't get better without surgical intervention, but somehow, some way, Linden's had. Her heart had corrected itself. He did want to go on with doing the heart catheterization procedure the following day to be sure, but just by the look on his face we could tell that he was feeling pretty sure about what he was saying about her possibly not needing surgery.
Joe and I went back to our room at the Devin Nicole House and talked. I just had this overwhelming feeling of peace no matter what was going to happen. We had gone there expecting surgery, so we couldn't necessarily be disappointed if she did end up needing it, but to go home without surgery would be absolutely amazing. I just kept saying, "Whatever happens, we'll be fine. Whatever Linden needs is what she'll get." It didn't hurt either that the news came on the 9 year anniversary of the death of Joe's mom, Carol, who Linden CAROLine is named after. She was definitely watching over Linden and whispering into Jesus' ear that day!
I called my mom and told her what happened that day. She and my dad were driving from Louisiana to Boston and were in Alabama when I talked to her. I told her not to freak out, (she does that from time to time.....haha) but I had some news that I was bursting to just tell someone. When I told her that it was a possiblilty, that Linden wouldn't even need surgery, she burst into tears and said "I changed my prayer today! I have been praying that she would be fine during and after surgery, but then I said 'No, my God is bigger than this, I want a miracle. I pray that she doesn't even have to have surgery." I told her to keep it a secret until we knew for sure. We would know by noon the next day.
Friday morning we woke up around 5:30 and were at the hospital by 7:30 am for Linden to be admitted for her catheterization. She went in around 8:30 and at 10:00am we got a report from her nurse, that she was doing great and they were measuring the pressures in her heart and that they would call us in another hour. I was so exhausted that I rested my head on Joe's shoulder and I guess I feel asleep because the next thing I noticed was Joe nudging me saying "Wake up" and I woke up to Dr Breitbart smiling at us.
He said "It's good news. Linden did great. Everything went fine and I'm very pleased with the measurements. She's fine. We don't need to do surgery at this time! Let her wake up, then she can nurse and then she'll be discharged."
I cannot explain to you the weight that was lifted off of my heart at that moment. Not only did my Jesus come through, he exceeded what was asked of him. All along, I had been praying these words, "Please God, heal Linden's heart through the hands of her surgeon." It NEVER had occured to me to pray for a miracle, for her not to even need surgery. What I heard from her cardiologist in La was so doom and gloom that was asking for what I thought was the bare minimum, just for her to be OK after surgery. I prayed that it would be her last surgery. I am still [almost 2 weeks later] in awe about this.
At 2:00 PM, on Friday, July 17, exactly 8 months since her first open heart surgery, Linden was DISCHARGED from Children's Hospital without needing surgery!!!!!!!!
We called all our friends and family and told them the good news, about our MIRACLE baby. Everyone was in complete awe! Our prayers had been answered and then some! Joe's sisters and brother were flying in on the Sunday-Tuesday for her surgery and didn't want to lose money on the tickets, so they came anyway and we did a bit of celebrating! Instead of being cooped up inside a hospital worried sick about Linden, we were able to enjoy her and enjoy each other for a couple days. How can people still question whether or not there is a God in a situation where something just CANNOT be explained other than it being all about HIM?!
*I'm sorry that it took me SO long to get this posted. EEK. I had alot to say!*
Now, for the pictures.
Sitting in a coffee shop the day before her cath.
Got lashes?!!?
Falling asleep before her ECHO. We tried hard to keep her awake.
Smiles for Daddy
In front of Harvard Medical School
Thursday, July 16, 2009
We're in Boston!
Finally, a new post from me! Joe, Linden and I are in Boston. We arrived at 1:30 and a friend of mine, Kelly, picked us up at the airport and we were at the Devin Nicole House by 2:00. Once we got settled in, it was nice enough outside to go for a walk. I was wearing jeans and actually wished that I was wearing shorts. It was in the high 70s. We walked in front of Harvard and tooks some pictures of Linden in front of it. We totally looked like tourists. Haha. I don't have the cables to upload those pictures online yet, but I'm going to share some pictures from Linden's car wash two weeks ago that was put together by her Uncle Luke.
Today was Linden's pre-operative testing. She had a chest x-ray, bloodwork, an EKG and an Echo all done by noon. I think she did pretty well considering she hadn't nursed since 6:00AM. She did have two drops of Pedialyte at 8:00 but she doesn't 'do the bottle' well so didn't get much from that. ;)
Tomorrow will be her heart catheterization procedure. It's necessary because it will give the cardiologist and surgeon a better idea of how her blood flows through her heart and how well it is pumping. The doctor will insert a thin plastic tube (catheter) into the artery in the crease of her leg. From there, it will be advanced into her heart chambers or coronary arteries. They will measure blood pressure within the heart and how much oxygen is in her blood as well. It's also very useful in finding out how useful her pumping ability is. This procedure has a relatively low risk of anything going wrong, but she will be under anesthesia so we would appreciate your prayers for tomorrow. Based on this heart cath, doctors will determine how to correct her valve leakage.
Here are the pictures from her car wash on July 1.
Today was Linden's pre-operative testing. She had a chest x-ray, bloodwork, an EKG and an Echo all done by noon. I think she did pretty well considering she hadn't nursed since 6:00AM. She did have two drops of Pedialyte at 8:00 but she doesn't 'do the bottle' well so didn't get much from that. ;)
Tomorrow will be her heart catheterization procedure. It's necessary because it will give the cardiologist and surgeon a better idea of how her blood flows through her heart and how well it is pumping. The doctor will insert a thin plastic tube (catheter) into the artery in the crease of her leg. From there, it will be advanced into her heart chambers or coronary arteries. They will measure blood pressure within the heart and how much oxygen is in her blood as well. It's also very useful in finding out how useful her pumping ability is. This procedure has a relatively low risk of anything going wrong, but she will be under anesthesia so we would appreciate your prayers for tomorrow. Based on this heart cath, doctors will determine how to correct her valve leakage.
Here are the pictures from her car wash on July 1.
Tuesday, June 30, 2009
Linden's car wash
Our friends and family washed about 30 cars this past Saturday! It was very successful. We are so thankful for all of you (Rhiannon, Billy, Mackenzie, Conner, Micah, Leah, Stephanie, Hunter, Brock, Paulette, CJ, Salvadore, Kip, Andrea, Tim, Luke, Nathan, Nathanael, and everyone else who came and got their car washed) helped make it happen. We are so blessed to have so much support!
Here are a couple of pictures taken by Mackenzie. I realize that three of the pictures are of one vehicle, but we did have more than that I promise. ;)
Luke (Joe's brother) stood by the road reeling people in.
My awesome Sister In Law Rhiannon
Linden just waking up from her nap and seeing a bunch of people looking at her.
Alexis
Allison
Bianca
Here are a couple of pictures taken by Mackenzie. I realize that three of the pictures are of one vehicle, but we did have more than that I promise. ;)
Luke (Joe's brother) stood by the road reeling people in.
My awesome Sister In Law Rhiannon
Linden just waking up from her nap and seeing a bunch of people looking at her.
Alexis
Allison
Bianca
Thursday, June 25, 2009
Farsighted
Yes, that's right. Linden is farsighted and had to get glasses. I think she looks adorable and stylish. Here are a couple pictures of her right after she put them on for the first time. She just stopped and looked around the room and at us very slowly, taking it all in. We had to hold her hands down so she wouldn't grab them. She's gotten better at keeping them on since she got them on Monday.
She's been so healthy looking lately. I bet it's all the prayers! Thank you Jesus! She's been bearing weight on her feet, standing for awhile while I hold her hands. She's been grabbing at our faces and pulling them towards her to kiss which is so cute!!! Her spunky personality is really shining through.
She's been so healthy looking lately. I bet it's all the prayers! Thank you Jesus! She's been bearing weight on her feet, standing for awhile while I hold her hands. She's been grabbing at our faces and pulling them towards her to kiss which is so cute!!! Her spunky personality is really shining through.
Wednesday, June 17, 2009
Linden's 9 month IFSP meeting
Linden is in a state run early intervention program called Early Steps. She qualifies because she has Down Syndrome and Amniotic Band Syndrome (what caused her little hand). Every month, Mrs. Claire comes over and checks her out to see if she's developing physically and cognitively as she should.
Last month we made the following goals for Linden at 9 months:
- Sitting for short periods of time
- Reaching to grab a small toy from someone else's hand
- Reaching out with her left hand (smaller hand)
- Bearing weight on her legs
As of today, 9.5 months, she has met all of her 9 month goals!!! I am so proud of my sweet girl. Even though, her medicines make her very tired and she's just plain worn out, she is still meeting her goals and surprising her teacher! She sat on her own for 8 seconds today and that's a record for her. See, when she sits, she either throws herself back or dives down to her feet.
Here's Linden standing up on Daddy's lap.
And for your viewing pleasure, some rare pictures of ALL THREE girls together!
Also, for those of you who have blogs and would like to put Linden's prayer button in your blog, just cut and paste this picture. Sweet Crystal, from Presh Web Designs, is a fellow heart mama of Bentley.
Love,
Bianca and Joe
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