After going in circles between Rylan's neonatologist, our pediatrician, the genetic specialist, and the transfer of information between Lubbock UMC, the NICU doctors, Baylor, and Texas Children's in Houston, I'm left feeling dizzy and throughly confused.
The frustrating part is that we are being told to wait until next week until we can get results back from a specific amino acid test until they can confirm or deny that she will have long-term (or even short-term) affects from this disease. I think that the Lubbock NICU doctor jumped the gun and scared us more than they should have. There are various levels of MSUD and her levels are borderline abnormal. This is a huge relief to hear, but we're not out of the woods just yet. Levels can change drastically overnight, and be elevated when she gets sick with a fever. We have been given the okay to call the specialist's cell phone number if we need to take her the the TX Children's Emergency room in the medical center so that he can come and consult immediately. There are certain signs we have to watch for. She is showing 5 of the 7 signs of MSUD as of right now, but her eating is sufficient. She's not vomiting, and she gained 1 ounce today! Yea! She gained the weight of a paper clip, but we're very proud, nonetheless.
As for her demeanor, she's the sweetest thing that ever was! It's so easy to fall in love with her. Her little noises are precious, and her expressions are hilarious! She's a perfect Christmas gift from God.
Brayden & Ashlyn are crazy about her. I think Brooklyn is seeing her as competition, but she was very interested in her noises and cries. I think she thinks Rylan is a baby doll.
I was amazed at the growth of Brooklyn while we were gone. Oh my goodness. She is so grown up now, and way taller!
Getting used to four girls in the house all day will take some adjustments, but we'll get there. My mom is here to help out this week (thank goodness)! I've told myself all day today, "Oh my goodness, we have four girls now." It's not surreal anymore. This is reality. This is my "God, I really want a baby so bad" prayers raining down on us. What joy they bring.
Please continue to pray for Rylan's results. Pray for our family, as we adjust to this new adventure in our lives.
Thank you for taking the time to read our blog. Thank you for being our friends. Thank you for prayers. Thank you for showing me God's face through your actions.
All our love,
Casey
Wednesday, December 16, 2009
Day Ten- December 15th
Rylan is being released today because there is nothing they can do for her here in the Lubbock NICU. She needs to get to Houston ASAP, but it is not necessary to Life Flight her. They believe even if everything comes back positive for this disease, she is not going to have any major reactions within 24 hours for the trip home. We should arrive in Houston between midnight and 3am, and will see our pediatrician at 1pm the same day, and hopefully metabolic specialist downtown at TX Children's the same day. They said that doctors don't mess around with metabolic diseases, so we shouldn't have to wait too long for an emergency appointment.
Until we meet with the specialist, we really won't know any more about her condition. Everything is so preliminary right now. I will be able to update her condition in the next day or two. It looks like she might have to be on a lifetime diet of no protein (not sure how that works), but there's also medicine she can take that helps 7 out of 10 people prcoess the proteins better. Luckily, her urine does not have the maple syrup smell yet. That's a sign that things are really bad in her system with not breaking down the amino acids. She also tested negative this morning for having ketones in her urine (another good sign).
We are staying postive right now, and thankful we didn't have quite the chaotic morning we were prepared for. Thank you for your prayers. They are coming in from Canada, Australia, and all over the US. I was getting texts until 2am this morning from people. Hundreds of you have e-mailed us/prayed directly for us. For that, we are thankful.
I'll keep you posted on the diagnosis/protocol when we know something. Please continue to pray for her tiny little body to heal from this disease. She has 3 sisters that are ready to play with her.
We're coming home!!!!!!! Praise God from whom all blessing flow!
Casey & Rylan
Until we meet with the specialist, we really won't know any more about her condition. Everything is so preliminary right now. I will be able to update her condition in the next day or two. It looks like she might have to be on a lifetime diet of no protein (not sure how that works), but there's also medicine she can take that helps 7 out of 10 people prcoess the proteins better. Luckily, her urine does not have the maple syrup smell yet. That's a sign that things are really bad in her system with not breaking down the amino acids. She also tested negative this morning for having ketones in her urine (another good sign).
We are staying postive right now, and thankful we didn't have quite the chaotic morning we were prepared for. Thank you for your prayers. They are coming in from Canada, Australia, and all over the US. I was getting texts until 2am this morning from people. Hundreds of you have e-mailed us/prayed directly for us. For that, we are thankful.
I'll keep you posted on the diagnosis/protocol when we know something. Please continue to pray for her tiny little body to heal from this disease. She has 3 sisters that are ready to play with her.
We're coming home!!!!!!! Praise God from whom all blessing flow!
Casey & Rylan
Day Nine-December 14th
We need your prayers now more than ever.
Rylan is scheduled to go back home tomorrow morning. We just got the results back from her newborn state screening this evening. Rylan has been diagnosed with a very very rare disease called Maple Syrup Urine Disease. This explains why she has struggled to eat over the past week. She is unable to process protein. She is on the lower end of the spectrum, but we have been informed of the worse possible scenarios to prepare us for what might be to come.
I knew it wasn't good when a swarm of doctors and nurses came rushing in and started drawing blood, starting an IV, and putting in a cathater. It is a rare genetic metabolic disease that 1 in 50,000 people have. Only 4 doctors treat this disease in the state of Texas. Thank God 2 of the 4 are in Houston, TX. I feel so blessed to have the medical center capital of the US at our fingertips! The neonatologist here had never heard of it, so he called Baylor- they had never heard of it either. TX Children's did some research, and have 3 doctors in on this case now. It is a disease that can leave her mentally retarded if not treated correctly, and can quickly lead to death. They had to take platelets out of her today to Fed Ex overnight to Dallas, and we will know tomorrow whether or not it is definitely positive. If so, they want to life flight the both of us to Houston to Herman or TX Children's Hospital to be treated immediately. I asked why life flight was necessary, and he said, "I don't want to alarm you, but I feel like it's better to be honest with you up front so you can be ready to go tomorrow if need be and be composed. Rylan's life could be in jeopardy if it is not treated right away."
My heart is breaking for her right now, as she is being poked and prodded all over her body. Thank God Blake's sister is here with me right now.
I'll give more details as soon as I know something. Please please please pray for her. We know that God is bigger than this disease, and can heal her.
Casey
Rylan is scheduled to go back home tomorrow morning. We just got the results back from her newborn state screening this evening. Rylan has been diagnosed with a very very rare disease called Maple Syrup Urine Disease. This explains why she has struggled to eat over the past week. She is unable to process protein. She is on the lower end of the spectrum, but we have been informed of the worse possible scenarios to prepare us for what might be to come.
I knew it wasn't good when a swarm of doctors and nurses came rushing in and started drawing blood, starting an IV, and putting in a cathater. It is a rare genetic metabolic disease that 1 in 50,000 people have. Only 4 doctors treat this disease in the state of Texas. Thank God 2 of the 4 are in Houston, TX. I feel so blessed to have the medical center capital of the US at our fingertips! The neonatologist here had never heard of it, so he called Baylor- they had never heard of it either. TX Children's did some research, and have 3 doctors in on this case now. It is a disease that can leave her mentally retarded if not treated correctly, and can quickly lead to death. They had to take platelets out of her today to Fed Ex overnight to Dallas, and we will know tomorrow whether or not it is definitely positive. If so, they want to life flight the both of us to Houston to Herman or TX Children's Hospital to be treated immediately. I asked why life flight was necessary, and he said, "I don't want to alarm you, but I feel like it's better to be honest with you up front so you can be ready to go tomorrow if need be and be composed. Rylan's life could be in jeopardy if it is not treated right away."
My heart is breaking for her right now, as she is being poked and prodded all over her body. Thank God Blake's sister is here with me right now.
I'll give more details as soon as I know something. Please please please pray for her. We know that God is bigger than this disease, and can heal her.
Casey
Day Eight- December 13th
The best things come to those who wait.....
......and that is exactly what we will have to do. She's just not ready to get out yet. She's losing weight every day, not eating with an appetite she needs to have for a pre-term NICU baby her size. She is the sweetest thing in the entire world, but she's just being lazy with feedings. I'd love to give a specific day that we will be out of here, but I've learned over the past several days that it's just not worth it. It crushes our spirit to be told we have to wait longer. Blake had to leave us today to go back to Houston. My mom will be watching the girls now. I am grateful to both of our parents. I'm done being sad about not leaving just yet. So I've decided to focus on some positive things I've learned this week:
We have been surrounded by the best family and friends during this time, and I feel truly lifted up by your prayers and well wishes. Your words of encouragement sustain us.
We are apart of an amazing church that is so ready to jump in and help out when we return (wherever the need may be).
We have incredible NICU nurses and doctors that have truly fallen in love with Rylan and her story. We had a nurse tell us last night that she tossed and turned and was up all night because she was trying to figure out something she could have done differently to make her outcome better. Little sweet ladies come by to deliver knitted hats and blankets for every baby in the NICU. Bows are made for the girls.
The Ronald McDonald House we are staying in is filled with other NICU parents. I am encouaged by their positive attitude and thankful hearts. There are moms doing this week after week (one mom had her baby in October, and won't be leaving until late February). The volunteers are incredibly supportive and always happy.
Volunteers have shown us how much we are prayed for and loved. We have youth groups come in all the time and just sing for us, cook for us, do our chores for the day, etc. One girl (7th grader) left me her "Jesus loves you" bracelet last night as she was walking out the door.
Blake is an amazing man, husband, and man of God. I am blessed to be married to someone that loves me so much. He is the one who continues to remind me that all of this we are going through is small stuff, and how blessed we are to have Rylan. I catch him all the time when he doesn't know I'm watching him just smiling and talking to Rylan (full conversations). Too cute. He has even left the house at midnight because he just wants to go see her one more time before he goes to bed.
I see how God has orchestrated all of this to fit His purpose, and it moves me. My faith has been strengthened this week.
I am convinced Rylan hears me (and loves it) when I read "Goodnight Moon" to her every night. She follows my voice, and responds to funny noises I make. I wouldn't miss these moments for the world. I missed Brooklyn rolling over for the first time yesterday, but I'm okay. There will be many other firsts I will get to share in the years to come.
Although the frustration of being stuck in Lubbock,TX is at its height, this time I am getting to spend with Rylan is irreplaceable. I am blessed.
Casey
......and that is exactly what we will have to do. She's just not ready to get out yet. She's losing weight every day, not eating with an appetite she needs to have for a pre-term NICU baby her size. She is the sweetest thing in the entire world, but she's just being lazy with feedings. I'd love to give a specific day that we will be out of here, but I've learned over the past several days that it's just not worth it. It crushes our spirit to be told we have to wait longer. Blake had to leave us today to go back to Houston. My mom will be watching the girls now. I am grateful to both of our parents. I'm done being sad about not leaving just yet. So I've decided to focus on some positive things I've learned this week:
We have been surrounded by the best family and friends during this time, and I feel truly lifted up by your prayers and well wishes. Your words of encouragement sustain us.
We are apart of an amazing church that is so ready to jump in and help out when we return (wherever the need may be).
We have incredible NICU nurses and doctors that have truly fallen in love with Rylan and her story. We had a nurse tell us last night that she tossed and turned and was up all night because she was trying to figure out something she could have done differently to make her outcome better. Little sweet ladies come by to deliver knitted hats and blankets for every baby in the NICU. Bows are made for the girls.
The Ronald McDonald House we are staying in is filled with other NICU parents. I am encouaged by their positive attitude and thankful hearts. There are moms doing this week after week (one mom had her baby in October, and won't be leaving until late February). The volunteers are incredibly supportive and always happy.
Volunteers have shown us how much we are prayed for and loved. We have youth groups come in all the time and just sing for us, cook for us, do our chores for the day, etc. One girl (7th grader) left me her "Jesus loves you" bracelet last night as she was walking out the door.
Blake is an amazing man, husband, and man of God. I am blessed to be married to someone that loves me so much. He is the one who continues to remind me that all of this we are going through is small stuff, and how blessed we are to have Rylan. I catch him all the time when he doesn't know I'm watching him just smiling and talking to Rylan (full conversations). Too cute. He has even left the house at midnight because he just wants to go see her one more time before he goes to bed.
I see how God has orchestrated all of this to fit His purpose, and it moves me. My faith has been strengthened this week.
I am convinced Rylan hears me (and loves it) when I read "Goodnight Moon" to her every night. She follows my voice, and responds to funny noises I make. I wouldn't miss these moments for the world. I missed Brooklyn rolling over for the first time yesterday, but I'm okay. There will be many other firsts I will get to share in the years to come.
Although the frustration of being stuck in Lubbock,TX is at its height, this time I am getting to spend with Rylan is irreplaceable. I am blessed.
Casey
Day Seven (2)- December 12th
Rooming in With Big Brother.....
We are now stuck in a 10 x 10 room for the rest of the night with Rylan. I'm not sure whose health is more in jeopardy- Rylan's, or Blake's. There's even a camera watching our every move. Kind of freaky. I've included some recent pictures of Rylan. She is doing better with her on demand feeding, but it means we are up feeding her a little bit every hour on the hour. Our goal is to feed her 180cc's before 7am (6 ounces). It sounds easy, but it really is a chore with her. She's content just sleeping through the night. I laugh at how backwards this situation is. Most new parents just want their kid to sleep. We want ours to get up and eat.
If all goes well tonight, they have promised us we can leave tomorrow afternoon. I know we'll get the 6 ounces in her. I just hope she is okay once we leave.
Thank you for your continued prayers. I'll keep you posted as soon as we know something tomorrow. Maybe by the time you get back from church, I'll have good news for you and we'll be on our way to Waco!
All our love,
Blake and Casey
We are now stuck in a 10 x 10 room for the rest of the night with Rylan. I'm not sure whose health is more in jeopardy- Rylan's, or Blake's. There's even a camera watching our every move. Kind of freaky. I've included some recent pictures of Rylan. She is doing better with her on demand feeding, but it means we are up feeding her a little bit every hour on the hour. Our goal is to feed her 180cc's before 7am (6 ounces). It sounds easy, but it really is a chore with her. She's content just sleeping through the night. I laugh at how backwards this situation is. Most new parents just want their kid to sleep. We want ours to get up and eat.
If all goes well tonight, they have promised us we can leave tomorrow afternoon. I know we'll get the 6 ounces in her. I just hope she is okay once we leave.
Thank you for your continued prayers. I'll keep you posted as soon as we know something tomorrow. Maybe by the time you get back from church, I'll have good news for you and we'll be on our way to Waco!
All our love,
Blake and Casey
Day 7- December 12th
Two steps forward..and one step back......
We will not be leaving today as planned. She does not have an appetite that they are comfortable letting her go home with. We basically have to force feed her after 1/2 an ounce. They finally had to put a tube down her nose and into her stomach last night to supplement what she is lacking because of her weight loss. We will be "Rooming-In" tonight, which is where we stay in a room with her all night and feed her ourselves to see how much we can get her to take on her own.
The thing that worries me is not that we can't feed her enough (if Blake and I try hard enough, we can get her to take what she needs), but we don't want to push her (force feed her) just so we can get out of here. We want her to be healthy when we take her home. If not, there's a possibility that she'll be in a hospital in Houston within a few days if her appetite doesn't pick up.
They changed her feeding to on demand (instead of every 3 hours) which will help her eat the desired goal amount, but it means we are up for 24 hours feeding her. This sounds okay for toniught, but I can't stay up 24/7 when we get home to feed her every 30 minutes (when I have to take care of 3 children during the day). Blake has to go back to work the minute we get home, so it's just me.
This has been a very frustrating day for us so far. There's a fine balance between wanting to come home to Houston, and wanting to leave here with a healthy baby so that we do not have more problems when we get home.
My specific prayer request for today is that she has a huge appetite and this lazy-eating behavior goes away entirely. Pray for patience for us that we continue to keep her health paramount over all other issues related to living at the hospital in Lubbock. Pray for comfort for our other 3 girls, that they may understand why we still haven't come home yet with their baby sister (and their Mommy & Daddy).
We know everything will work out in due time. We're just ready to be home with our entire family.
Thanks again for your prayers,
Casey
We will not be leaving today as planned. She does not have an appetite that they are comfortable letting her go home with. We basically have to force feed her after 1/2 an ounce. They finally had to put a tube down her nose and into her stomach last night to supplement what she is lacking because of her weight loss. We will be "Rooming-In" tonight, which is where we stay in a room with her all night and feed her ourselves to see how much we can get her to take on her own.
The thing that worries me is not that we can't feed her enough (if Blake and I try hard enough, we can get her to take what she needs), but we don't want to push her (force feed her) just so we can get out of here. We want her to be healthy when we take her home. If not, there's a possibility that she'll be in a hospital in Houston within a few days if her appetite doesn't pick up.
They changed her feeding to on demand (instead of every 3 hours) which will help her eat the desired goal amount, but it means we are up for 24 hours feeding her. This sounds okay for toniught, but I can't stay up 24/7 when we get home to feed her every 30 minutes (when I have to take care of 3 children during the day). Blake has to go back to work the minute we get home, so it's just me.
This has been a very frustrating day for us so far. There's a fine balance between wanting to come home to Houston, and wanting to leave here with a healthy baby so that we do not have more problems when we get home.
My specific prayer request for today is that she has a huge appetite and this lazy-eating behavior goes away entirely. Pray for patience for us that we continue to keep her health paramount over all other issues related to living at the hospital in Lubbock. Pray for comfort for our other 3 girls, that they may understand why we still haven't come home yet with their baby sister (and their Mommy & Daddy).
We know everything will work out in due time. We're just ready to be home with our entire family.
Thanks again for your prayers,
Casey
Day 6- December 11th
Prayers do work!!!
Overnight, Rylan’s WBC went from 15,800 to 11,600. Her billirubin level went from 11.8 to 8.3. She’s responsive, feisty, feeding well, and now has her phototherapy lights off. We will keep her in her car seat for 3 hours today (to ensure she can maintain her breathing levels while in the car). We completed our required infant CPR class, and unless her billirubin levels skyrocket overnight after being taken off the light therapy, we’ll be going home tomorrow afternoon!!!!!!!!!
What could have been another week long stay has turned around overnight, and I am completely convinced that this is because so many of you are praying for her. We cannot thank you enough. Blake said last night that he’s never known anyone that has been covered in as much prayer as Rylan has been.
I guess this wraps up our daily update e-mails, and specific prayer requests. I’ll continue to post updates on Facebook after we get home. If I’m diligent enough, I might even get Christmas cards out with a picture of all 4 girls together (no promises).
Thank you, again. You’ll never know how much it means to us!
Blake, Casey, Brayden, Ashlyn, Brooklyn, and Rylan Shirley
Overnight, Rylan’s WBC went from 15,800 to 11,600. Her billirubin level went from 11.8 to 8.3. She’s responsive, feisty, feeding well, and now has her phototherapy lights off. We will keep her in her car seat for 3 hours today (to ensure she can maintain her breathing levels while in the car). We completed our required infant CPR class, and unless her billirubin levels skyrocket overnight after being taken off the light therapy, we’ll be going home tomorrow afternoon!!!!!!!!!
What could have been another week long stay has turned around overnight, and I am completely convinced that this is because so many of you are praying for her. We cannot thank you enough. Blake said last night that he’s never known anyone that has been covered in as much prayer as Rylan has been.
I guess this wraps up our daily update e-mails, and specific prayer requests. I’ll continue to post updates on Facebook after we get home. If I’m diligent enough, I might even get Christmas cards out with a picture of all 4 girls together (no promises).
Thank you, again. You’ll never know how much it means to us!
Blake, Casey, Brayden, Ashlyn, Brooklyn, and Rylan Shirley
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