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
Prayer for Baby Rylan
Sometimes, finding the words to say while praying is hard. My dear friend,Aimee, sent this prayer to me today. I thought I'd share it. It moved me.
Casey
Dear Heavenly Father, we stand in the gap for Casey & Blake and lift baby Rylan up to you in prayer. We ask for and claim complete and total healing that surpasses any medical understanding, the kind of healing that only You can do and no man can understand or explain. We just praise and honor you and give you all the glory for Rylan's birth, adoption and healing.
We pray that Rylan's pneumonia would be completely healed from her lungs; that her bilirubin levels will drop below 2. We know that everything is according to Your time and Your plan, but we pray for complete healing by Saturday so the entire Shirley family can return home to Houston with a healthy, fully-healed baby Rylan. We pray for Brayden, Ashlyn & Brooklyn as they are so young and separated from their parents. Please Lord give them comfort and peace and any sort of understanding that they are capable of comprehending during this time of separation. We lift up Blake's parents to you and thank you for their ability to care for three young girls and we ask that you continue to renew their energy and spirits as they watch over and care for the girls. We ask that Rylan's appetite would be stimulated and that she would continue eating on her own without a feeding tube because this is essential to her getting well and being released. We pray that the noon feed is going better than ever expected or hoped for. Dear Lord, we know that you can return her WBC levels to normal and we claim this healing in your name. We pray that the next test will show the levels to be normal and any infection that might have been...is no longer. Lord we pray that Rylan's breathing will stabilize right now and she will not need assistance from oxygen. And last, but not least, we lift up Blake and Casey and pray for supernatural strength, patience, understanding, endurance and peace. We pray that their energy be continually renewed, as well as their faith and dependence on you. We pray that your are their comforter and rock during their time in the NICU and during their transition home to Houston this weekend.
Father, we praise you for all you have done Baby Rylan, everyone involved in her birth, adoption and medical care. You know the needs before they arise. You meet the needs before we ask. We praise you and thank you for your faithfulness. We thank you specifically for orchestrating so many things the past few days that could only be done by You. Thank you for arranging the 6am notary and the willing and gracious help of Brian's friend Mark. We give you all glory and honor for bringing the birth father into the picture and that he willingly signed over his rights. We praise you that amidst many other issues that Rylan's oxygen saturation levels are good and stable. We also praise you for the slight drop in the bilirubin level from 15.8 to 11. We trust that you will continue to drop that number until it falls below 2 and we thank you for doing that. And as small and insignificant as it might seem in the grand scheme of this immense situation, we thank you for the volunteer that made the Christmas bow for Rylan and the other things that they make and donate to the NICU babies. We also thank you and praise you for the party tonight at the R.McD house where Blake and Casey can receive some much needed fellowship! We pray that this time of fellowship will bless them and restore them and while they relax that you will continue to heal and restore perfect health to Rylan.
Jesus, we join together with so many others that are praying for this family and we agree in your name that your will be done and that Rylan will be healed completely and able to leave the Lubbock NICU on Saturday. We know your are the ultimate healer and only you can perform the miracles it will take to make this happen. We thank you again for your faithfulness and we lean not on our own understanding or that of the doctors and nurses, but on You. We put our trust and faith in you and give thanks for all that you do for us.
In Jesus' Name, Amen
Scripture to claim:
Psalm 27:14 Wait for the LORD; be strong, and let your heart take courage; wait for the LORD!
Casey
Dear Heavenly Father, we stand in the gap for Casey & Blake and lift baby Rylan up to you in prayer. We ask for and claim complete and total healing that surpasses any medical understanding, the kind of healing that only You can do and no man can understand or explain. We just praise and honor you and give you all the glory for Rylan's birth, adoption and healing.
We pray that Rylan's pneumonia would be completely healed from her lungs; that her bilirubin levels will drop below 2. We know that everything is according to Your time and Your plan, but we pray for complete healing by Saturday so the entire Shirley family can return home to Houston with a healthy, fully-healed baby Rylan. We pray for Brayden, Ashlyn & Brooklyn as they are so young and separated from their parents. Please Lord give them comfort and peace and any sort of understanding that they are capable of comprehending during this time of separation. We lift up Blake's parents to you and thank you for their ability to care for three young girls and we ask that you continue to renew their energy and spirits as they watch over and care for the girls. We ask that Rylan's appetite would be stimulated and that she would continue eating on her own without a feeding tube because this is essential to her getting well and being released. We pray that the noon feed is going better than ever expected or hoped for. Dear Lord, we know that you can return her WBC levels to normal and we claim this healing in your name. We pray that the next test will show the levels to be normal and any infection that might have been...is no longer. Lord we pray that Rylan's breathing will stabilize right now and she will not need assistance from oxygen. And last, but not least, we lift up Blake and Casey and pray for supernatural strength, patience, understanding, endurance and peace. We pray that their energy be continually renewed, as well as their faith and dependence on you. We pray that your are their comforter and rock during their time in the NICU and during their transition home to Houston this weekend.
Father, we praise you for all you have done Baby Rylan, everyone involved in her birth, adoption and medical care. You know the needs before they arise. You meet the needs before we ask. We praise you and thank you for your faithfulness. We thank you specifically for orchestrating so many things the past few days that could only be done by You. Thank you for arranging the 6am notary and the willing and gracious help of Brian's friend Mark. We give you all glory and honor for bringing the birth father into the picture and that he willingly signed over his rights. We praise you that amidst many other issues that Rylan's oxygen saturation levels are good and stable. We also praise you for the slight drop in the bilirubin level from 15.8 to 11. We trust that you will continue to drop that number until it falls below 2 and we thank you for doing that. And as small and insignificant as it might seem in the grand scheme of this immense situation, we thank you for the volunteer that made the Christmas bow for Rylan and the other things that they make and donate to the NICU babies. We also thank you and praise you for the party tonight at the R.McD house where Blake and Casey can receive some much needed fellowship! We pray that this time of fellowship will bless them and restore them and while they relax that you will continue to heal and restore perfect health to Rylan.
Jesus, we join together with so many others that are praying for this family and we agree in your name that your will be done and that Rylan will be healed completely and able to leave the Lubbock NICU on Saturday. We know your are the ultimate healer and only you can perform the miracles it will take to make this happen. We thank you again for your faithfulness and we lean not on our own understanding or that of the doctors and nurses, but on You. We put our trust and faith in you and give thanks for all that you do for us.
In Jesus' Name, Amen
Scripture to claim:
Psalm 27:14 Wait for the LORD; be strong, and let your heart take courage; wait for the LORD!
Day Five- December 10th
Today has been up and down with Rylan.
Good news:
Billirubin level went from 15 to 11 overnight.
Her oxygen was removed from her face. She is nose-hose free!
Bad News:
She is starting to get lazy with eating (a sign of billirubin in her system, ans being exhausted from the phototherapy). If she continues to not have an appetite, they will run a tube through her nose and into her stomach to feed her by tube. We'll feed her again at noon to determine that.
Her white blood cell count went from 11,000 yesterday to 21,000 today. She's either stressed or she has an infection.
Her breathing has been unstable since being removed from oxygen/pressure. She goes from breathing 20bpm, to 70bpm, back to 40bpm. They will continue to monitor her breathing, and put her back on oxygen if necessary. Her oxygen saturation level is good though, so that's a plus.
It's very exciting to see families all around us leaving/graduating from the NICU. We look forward to that day. It's not looking like we'll be leaving this weekend as we originally thought.
I'd write longer, but it's time to go feed her again. I'll try to send out an update tonight. The Ronald McDonald House is throwing a Christmas Holiday party for the guests, so that will be a nice break from the NICU scene.
Thanks for your continued prayers,
Casey
Good news:
Billirubin level went from 15 to 11 overnight.
Her oxygen was removed from her face. She is nose-hose free!
Bad News:
She is starting to get lazy with eating (a sign of billirubin in her system, ans being exhausted from the phototherapy). If she continues to not have an appetite, they will run a tube through her nose and into her stomach to feed her by tube. We'll feed her again at noon to determine that.
Her white blood cell count went from 11,000 yesterday to 21,000 today. She's either stressed or she has an infection.
Her breathing has been unstable since being removed from oxygen/pressure. She goes from breathing 20bpm, to 70bpm, back to 40bpm. They will continue to monitor her breathing, and put her back on oxygen if necessary. Her oxygen saturation level is good though, so that's a plus.
It's very exciting to see families all around us leaving/graduating from the NICU. We look forward to that day. It's not looking like we'll be leaving this weekend as we originally thought.
I'd write longer, but it's time to go feed her again. I'll try to send out an update tonight. The Ronald McDonald House is throwing a Christmas Holiday party for the guests, so that will be a nice break from the NICU scene.
Thanks for your continued prayers,
Casey
Day Three/Four- December 9-10th
We have great news and we have bad news. I'll start with the great news. I got a text this morning from the birthfather and he signed his relinquishment of parental rights yesterday, had it notarized, and sent it to our attorney by mid-afternoon. He also said to e-mail him if we had any medical history questions for him. Yea!!!!!!!! This was a huge concern of ours. He's been MIA the entire pregnancy and I just spoke with him for the first time a few hours before her water broke on Saturday. This is great news!!! Now, there's nothing that will slow down our adoption process. Hallelujah!!! Merry Christmas to us!
Now, for my specific prayer request for the day. Rylan's billirubin (sp?) level is extremely high. A normal level is below 2. Hers is 15.8. We will be unable to hold her for 3 days unless changing her diaper or feeding her every 3 hours. We also cannot be in the NICU for longer than 5 minutes with the lights on. They are so powerful that they will begin to hurt your eyes and make you sick. Blake felt ill earlier after just 5-10 minutes of being by her side. This feels like 2 steps forward, and 1 step back. I realize that juandice is not that big of a deal. It's just the fact that we cannot see her, or hold her except for a few minutes a day. She has a blindfold on all day too. Poor baby. If we do not treat her with the photothrerapy lights, there is a risk for blood transfusions, and a decreased appetite (which is crucial while in the NICU). I have included some pictures of her.
Please pray that all is well for her to leave by Saturday. Everything has to be perfect before they will release her (blood oxygen level, oxygen saturation, no pressure, no added oxygen, normal WBC, normal billirubin levels, feeding well with no problems, pneumonia completely gone, complete round of antibiotics, etc.). If we cannot leave by Saturday, we will have to worry about me staying in Lubbock, making alternative arrangements for the girls at Blake's parents, my mom flying up here, and renting a car to drive back when she's released, etc. Besides, we REALLY miss our girls. Talking to them on the phone last night made me cry. Brooklyn is 4 months old and teething right now, and I hate that she cannot be with her mama. Thank you to Blake's parents for watching all 3 girls this entire week/weekend. I know that's a huge adjustment.
I cannot tell you enough how much your texts/prayers/e-mails have meant to us. Just when we are getting down about being stuck in this place, we receive an encouraging word. We have people all over the US and in Canada praying for us. Wow! What an awesome feeling to know that we are covered in your prayers.
Blake says I'm making these e-mail updates too long. He calls them my "novel updates", so I guess I'll wrap this up by saying, once again, thank you for everything (and for passing these along to your friends/co-workers/families for additional prayers).
Blake & Casey
Now, for my specific prayer request for the day. Rylan's billirubin (sp?) level is extremely high. A normal level is below 2. Hers is 15.8. We will be unable to hold her for 3 days unless changing her diaper or feeding her every 3 hours. We also cannot be in the NICU for longer than 5 minutes with the lights on. They are so powerful that they will begin to hurt your eyes and make you sick. Blake felt ill earlier after just 5-10 minutes of being by her side. This feels like 2 steps forward, and 1 step back. I realize that juandice is not that big of a deal. It's just the fact that we cannot see her, or hold her except for a few minutes a day. She has a blindfold on all day too. Poor baby. If we do not treat her with the photothrerapy lights, there is a risk for blood transfusions, and a decreased appetite (which is crucial while in the NICU). I have included some pictures of her.
Please pray that all is well for her to leave by Saturday. Everything has to be perfect before they will release her (blood oxygen level, oxygen saturation, no pressure, no added oxygen, normal WBC, normal billirubin levels, feeding well with no problems, pneumonia completely gone, complete round of antibiotics, etc.). If we cannot leave by Saturday, we will have to worry about me staying in Lubbock, making alternative arrangements for the girls at Blake's parents, my mom flying up here, and renting a car to drive back when she's released, etc. Besides, we REALLY miss our girls. Talking to them on the phone last night made me cry. Brooklyn is 4 months old and teething right now, and I hate that she cannot be with her mama. Thank you to Blake's parents for watching all 3 girls this entire week/weekend. I know that's a huge adjustment.
I cannot tell you enough how much your texts/prayers/e-mails have meant to us. Just when we are getting down about being stuck in this place, we receive an encouraging word. We have people all over the US and in Canada praying for us. Wow! What an awesome feeling to know that we are covered in your prayers.
Blake says I'm making these e-mail updates too long. He calls them my "novel updates", so I guess I'll wrap this up by saying, once again, thank you for everything (and for passing these along to your friends/co-workers/families for additional prayers).
Blake & Casey
Day Three- December 8th
We are officially parents of Rylan Christine Shirley. Papers were signed this morning at 6am, and everything is complete. We are thrilled, and cannot thank our notary enough. He got up at 5am, and got out on the icy snowy roads to come and do this for us (complete strangers). Thank God for Steven Fannin, Mark Finneken, and Brian Smith for orchestrating all of this. We're not sure what we would have done. Shannon has unfortunately decided not to go through with the tubal ligation, but at the end of the day, it's her decision. So, 50% of our goals for the day were accomplished.
Regardless, we are happy to add another beautiful baby girl to the Shirley family. We now out number Blake 5 to 1. We are going in now to see her in the NICU. We'll send pictures later on. Thank you to everyone who has been praying for us. Please continue to pray for baby Rylan, that she may have a full and quick recovery.
Many of you have been sending us texts/e-mails to encourage us throughout our day. They mean so much to us. I hope you understand why we don't have time right now to respond to each of them individually.
Can't wait to get back to Houston. Looks like it may be next week.
Love y'all,
Blake and Casey
Regardless, we are happy to add another beautiful baby girl to the Shirley family. We now out number Blake 5 to 1. We are going in now to see her in the NICU. We'll send pictures later on. Thank you to everyone who has been praying for us. Please continue to pray for baby Rylan, that she may have a full and quick recovery.
Many of you have been sending us texts/e-mails to encourage us throughout our day. They mean so much to us. I hope you understand why we don't have time right now to respond to each of them individually.
Can't wait to get back to Houston. Looks like it may be next week.
Love y'all,
Blake and Casey
Day Two- December 7th
Rylan has been taken off the C-Pap breathing machine, and has adjusted well. She is not off of oxygen yet, but they downgraded her machine to a small tube in her nose. It's a good thing because the C-pap has rubbed both sides of her cheeks raw. That has to be painful. She still has not eaten, and will not eat until sometime tomorrow. The NICU nurse said they'd call us when that happens so that we can do it for the first time.
Blake and I both got to hold her today. What a great feeling. She's so much more content being held. It's hard to put her down and let her go. It's so cold and noisy in NICU rooms. They have volunteers that come and make beanies and booties for babies in the NICU. Only one cap (of several to choose from) fit her fat head, and even it is snug. It's not the best color on her (salmon), but beggers can't be choosers, right? I guess fashion is low on the priority list right now. :o)
She's becoming a little irritated by noises and is very jumpy. I'm hoping this subsides soon.
Once again, I'm asking for your prayers. I'll try to give specific prayer requests each day. Today, without going into too much detail, some issues have cropped up with the adoption paperwork/relinquishment of parental rights. Between our attorney, the social worker here at the hospital, Medicaid, and our birthmother... we are spinning in circles trying to get this completed.
Our main problem is that we were told that the social worker would be able to notarize the relinquishment of Shannon's rights Tuesday morning. This is not the case. We have to find our own public notary to come into the hospital to do this for us. I called a friend from church (Brian Smith) and he has a friend that is a president of a bank in Lubbock and has a personal secretary that is a public notary (Is that a God thing, or what?). It gets better. He called me immediately and said he's be happy to help, and that he'd send his secretary over first thing in the morning. He told me he wanted to help because he, too, was adopted at birth. Amazing.
Unfortunately, Shannon is having surgery tomorrow morning at 7am, and it cannot be changed due to Medicaid reasons. The notary lady is no longer able to come because we need someone here at the hospital by 6am tomorrow morning. All that being said, we have several people helping us to look for a public notary willing to do this, but we NEED to find soemone ASAP. Please pray specifically that we can find a notary that will pull through for us in time. She is unable to sign papers after the surgery because she will be on pain medication. She has to be completely coherant to do this. We are stuck between a rock and a hard place right now, but I know the power of prayer.
We don't THINK Shannon will leave the hospital before the papers are signed, but you never know with her. She makes impulsive decisions that often do not make sense.
_____________________________________________________________________________________
As I am typing this e-mail, we just got a call from Brian's friend (the one who originally set up the first notary) that said, "Casey...no worries. I have a guy that I know that wakes up at 5am everyday and will be there at the front door of the hospital at 6am." Unbelieveable. God is good. He already knows our needs before we ask. The crazy thing is that Brian's friend, Mark, is not even in town. He's on vacation in California at a wine vinyard on a tour right now. He's been making all of these calls for us (complete strangers) the entire time. How do we ever thank him?
So, I guess I'll wrap up by asking for prayers for tomorrow morning that everything goes through as planned. I'll send pictures later on tonight of us holding Rylan.
Love,
Blake & Casey
Blake and I both got to hold her today. What a great feeling. She's so much more content being held. It's hard to put her down and let her go. It's so cold and noisy in NICU rooms. They have volunteers that come and make beanies and booties for babies in the NICU. Only one cap (of several to choose from) fit her fat head, and even it is snug. It's not the best color on her (salmon), but beggers can't be choosers, right? I guess fashion is low on the priority list right now. :o)
She's becoming a little irritated by noises and is very jumpy. I'm hoping this subsides soon.
Once again, I'm asking for your prayers. I'll try to give specific prayer requests each day. Today, without going into too much detail, some issues have cropped up with the adoption paperwork/relinquishment of parental rights. Between our attorney, the social worker here at the hospital, Medicaid, and our birthmother... we are spinning in circles trying to get this completed.
Our main problem is that we were told that the social worker would be able to notarize the relinquishment of Shannon's rights Tuesday morning. This is not the case. We have to find our own public notary to come into the hospital to do this for us. I called a friend from church (Brian Smith) and he has a friend that is a president of a bank in Lubbock and has a personal secretary that is a public notary (Is that a God thing, or what?). It gets better. He called me immediately and said he's be happy to help, and that he'd send his secretary over first thing in the morning. He told me he wanted to help because he, too, was adopted at birth. Amazing.
Unfortunately, Shannon is having surgery tomorrow morning at 7am, and it cannot be changed due to Medicaid reasons. The notary lady is no longer able to come because we need someone here at the hospital by 6am tomorrow morning. All that being said, we have several people helping us to look for a public notary willing to do this, but we NEED to find soemone ASAP. Please pray specifically that we can find a notary that will pull through for us in time. She is unable to sign papers after the surgery because she will be on pain medication. She has to be completely coherant to do this. We are stuck between a rock and a hard place right now, but I know the power of prayer.
We don't THINK Shannon will leave the hospital before the papers are signed, but you never know with her. She makes impulsive decisions that often do not make sense.
_____________________________________________________________________________________
As I am typing this e-mail, we just got a call from Brian's friend (the one who originally set up the first notary) that said, "Casey...no worries. I have a guy that I know that wakes up at 5am everyday and will be there at the front door of the hospital at 6am." Unbelieveable. God is good. He already knows our needs before we ask. The crazy thing is that Brian's friend, Mark, is not even in town. He's on vacation in California at a wine vinyard on a tour right now. He's been making all of these calls for us (complete strangers) the entire time. How do we ever thank him?
So, I guess I'll wrap up by asking for prayers for tomorrow morning that everything goes through as planned. I'll send pictures later on tonight of us holding Rylan.
Love,
Blake & Casey
Day One- December 6th
Friends & Family:
I'm finally getting a chance to sit down and get an e-mail out. Thank you for all of your prayers and well-wishes. Rylan's definitely being covered with lots of prayers, and we are grateful. She was born at 1:35am, weighing 9lbs.2oz, and is 19 3/4inches long. She is a BIG baby, and super cute! She already has fat rolls on her arms, and neck.
Saturday at 4:20pm, Blake and I were talking about how unprepared we feel to bring baby Rylan home. I told him we really needed to sit down and take the time to make sure all of our paperwork is complete/ready (adoptions require a lot of documents/legal forms to be able to take the baby from the hospital), and that we needed to pack her bag and set up everything for our other kids to be ready to go when we got the call. We expected the call before December 27th (due date), but not 10 minutes after this conversation. Shannon (our birthmother) called and said her water broke at 4:30, and she was on the way to the hospital. Chickens with their head cut off don't hold a candle to the way we acted over the next 2 hours trying to get everyone packed up (all 6 of us). We had a 10 hour drive ahead of us to Lubbock, TX, with a swing by Moody, TX to drop off the kids at Blake's parents' house. As if the feeling of anticipation wasn't stressful enough, I should mention that I was a vendor at a Holiday Market at my church on Saturday, and because I wasn't quite ready, I pulled an all-nighter the night before. So, going on no sleep, we packed our three kids and headed for Moody (Brooklyn is teething, and screamed the entire way there). After getting the kids dropped off and changing vehicles with Blake's mom, we left for Lubbock around 11:30.
A friend of Shannon's kept giving us updates the entire way there, and we all decided that if we weren't there in time that we could listen to the birth live over the phone. At 1:35am, we were just outside of Abilene and we heard Rylan's cry for the first time. There's nothing sweeter than hearing that first cry from a newborn baby. It's such a relief. We wished we could have been there for her birth, but hearing her come into this world was the next best thing.
We got the the hospital around 5:30am and by that time, she had started to develop respiratory prolems. Shannon was holding her and she started to turn pale purple and had trouble breathing. She enhaled a huge amount of fluid while in the birth canal. The nurses tried to recusitate her for over an hour. They transferred her to the NICU after clearing out her lungs. She is currently on oxygen, but is doing better now. She's very content, but her comfort could be due to the magnesium Shannon had during labor. It has a calming effect on the baby after the birth. Her true demeanor will be more obvious within the next 2-3 days.
Doctors say that babies generally stay in the NICU until their due date, but we know from past experience with Ashlyn that they do this to be on the conservative side in case something goes wrong to prepare parents for the worse. Blake is only off this week, and will be headed back to Houston on Sunday regardless, but I will be here in Lubbock until she can come home. Please pray that we can make this transition easily (arrangements for our 3 other girls, travel, etc.)
We are very fortunate to be staying at the Ronald McDonald House at University Medical Center. It is free for NICU parents from out of town, and they provide breakfast, lunch, and dinner as well. It's run by volunteer groups, and we are excited to be able to stay there. What a blessing! We have daily chores that we have to complete, and today there was a sign on our door that said, "Your chores have been done for you today by St. John's United Methodist Church Youth group." They said that various groups will come in and do that on a regular basis. They also have a room in the hospital that we can go and hang out in, get on the internet, watch TV, drink coffee, and take a nap. What a great program for parents going through this unexpectedly and under the amount of stress that this causes.
Shannon is doing fine, and will be (thankfully) having a tubal ligation tomorrow afternoon. She'll be around for a few more days. She cannot sign papers until 48 hours after the baby is born, so we should have the official OK by Tuesday morning.
Rylan, for now is named Madeline Raine Nolan and she seems to be oblivious as to what's going on around her. She's ready to get all of the wires out of her throat/off her head. She keeps pulling the one out of her mouth.
Today, I put my hand on her leg, and she gently placed her hand on top of my hand (as if trying to tell me she was glad we were there). So sweet. She hasn't eaten yet. They want to wait until tomorrow, and will probably start feeding her through the tube inher stomach. Hopefully soon I'll be able to feed her. (I'd take just being able to hold her).
Thank you again for all of your prayers. Please continue to pray for her and her full recovery. I've attached some pictures of her for you to see. Texting us is the best way to give us messages. The NICU will not allowed cell phone usage in the NICU, but we can text. I'll send out an update as they come to us.
Blake & Casey
I'm finally getting a chance to sit down and get an e-mail out. Thank you for all of your prayers and well-wishes. Rylan's definitely being covered with lots of prayers, and we are grateful. She was born at 1:35am, weighing 9lbs.2oz, and is 19 3/4inches long. She is a BIG baby, and super cute! She already has fat rolls on her arms, and neck.
Saturday at 4:20pm, Blake and I were talking about how unprepared we feel to bring baby Rylan home. I told him we really needed to sit down and take the time to make sure all of our paperwork is complete/ready (adoptions require a lot of documents/legal forms to be able to take the baby from the hospital), and that we needed to pack her bag and set up everything for our other kids to be ready to go when we got the call. We expected the call before December 27th (due date), but not 10 minutes after this conversation. Shannon (our birthmother) called and said her water broke at 4:30, and she was on the way to the hospital. Chickens with their head cut off don't hold a candle to the way we acted over the next 2 hours trying to get everyone packed up (all 6 of us). We had a 10 hour drive ahead of us to Lubbock, TX, with a swing by Moody, TX to drop off the kids at Blake's parents' house. As if the feeling of anticipation wasn't stressful enough, I should mention that I was a vendor at a Holiday Market at my church on Saturday, and because I wasn't quite ready, I pulled an all-nighter the night before. So, going on no sleep, we packed our three kids and headed for Moody (Brooklyn is teething, and screamed the entire way there). After getting the kids dropped off and changing vehicles with Blake's mom, we left for Lubbock around 11:30.
A friend of Shannon's kept giving us updates the entire way there, and we all decided that if we weren't there in time that we could listen to the birth live over the phone. At 1:35am, we were just outside of Abilene and we heard Rylan's cry for the first time. There's nothing sweeter than hearing that first cry from a newborn baby. It's such a relief. We wished we could have been there for her birth, but hearing her come into this world was the next best thing.
We got the the hospital around 5:30am and by that time, she had started to develop respiratory prolems. Shannon was holding her and she started to turn pale purple and had trouble breathing. She enhaled a huge amount of fluid while in the birth canal. The nurses tried to recusitate her for over an hour. They transferred her to the NICU after clearing out her lungs. She is currently on oxygen, but is doing better now. She's very content, but her comfort could be due to the magnesium Shannon had during labor. It has a calming effect on the baby after the birth. Her true demeanor will be more obvious within the next 2-3 days.
Doctors say that babies generally stay in the NICU until their due date, but we know from past experience with Ashlyn that they do this to be on the conservative side in case something goes wrong to prepare parents for the worse. Blake is only off this week, and will be headed back to Houston on Sunday regardless, but I will be here in Lubbock until she can come home. Please pray that we can make this transition easily (arrangements for our 3 other girls, travel, etc.)
We are very fortunate to be staying at the Ronald McDonald House at University Medical Center. It is free for NICU parents from out of town, and they provide breakfast, lunch, and dinner as well. It's run by volunteer groups, and we are excited to be able to stay there. What a blessing! We have daily chores that we have to complete, and today there was a sign on our door that said, "Your chores have been done for you today by St. John's United Methodist Church Youth group." They said that various groups will come in and do that on a regular basis. They also have a room in the hospital that we can go and hang out in, get on the internet, watch TV, drink coffee, and take a nap. What a great program for parents going through this unexpectedly and under the amount of stress that this causes.
Shannon is doing fine, and will be (thankfully) having a tubal ligation tomorrow afternoon. She'll be around for a few more days. She cannot sign papers until 48 hours after the baby is born, so we should have the official OK by Tuesday morning.
Rylan, for now is named Madeline Raine Nolan and she seems to be oblivious as to what's going on around her. She's ready to get all of the wires out of her throat/off her head. She keeps pulling the one out of her mouth.
Today, I put my hand on her leg, and she gently placed her hand on top of my hand (as if trying to tell me she was glad we were there). So sweet. She hasn't eaten yet. They want to wait until tomorrow, and will probably start feeding her through the tube inher stomach. Hopefully soon I'll be able to feed her. (I'd take just being able to hold her).
Thank you again for all of your prayers. Please continue to pray for her and her full recovery. I've attached some pictures of her for you to see. Texting us is the best way to give us messages. The NICU will not allowed cell phone usage in the NICU, but we can text. I'll send out an update as they come to us.
Blake & Casey
Tuesday, December 15, 2009
Please Pray for Rylan!
Hi-
I am Shauna, Casey's best friend from middle school. I wanted to start this blog to show the outpouring of love and prayer that is happening all around the world for Rylan and the Shirley family. Blake and Casey have shown us all what God's love is all about. Please feel free to post messages to the family and I hope that instead of Casey sending us all emails that we can follow this miracle that is occurring right in front of our eyes on this blog. Casey has always been my inspiration but her perseverance and strength has inspired me even more to be a better Mom, wife and friend. I pray that they know that they are covered in prayer and as their family and friends, we will get them through this challenging time in their life with prayer, love and support. We serve a miraculous, healing, amazing God. He is the great Physician and he has baby Rylan wrapped up in his arms and has great plans for her life. Thank you sweet Jesus for this miracle as well as Rylan's 3 sisters at home.
I am Shauna, Casey's best friend from middle school. I wanted to start this blog to show the outpouring of love and prayer that is happening all around the world for Rylan and the Shirley family. Blake and Casey have shown us all what God's love is all about. Please feel free to post messages to the family and I hope that instead of Casey sending us all emails that we can follow this miracle that is occurring right in front of our eyes on this blog. Casey has always been my inspiration but her perseverance and strength has inspired me even more to be a better Mom, wife and friend. I pray that they know that they are covered in prayer and as their family and friends, we will get them through this challenging time in their life with prayer, love and support. We serve a miraculous, healing, amazing God. He is the great Physician and he has baby Rylan wrapped up in his arms and has great plans for her life. Thank you sweet Jesus for this miracle as well as Rylan's 3 sisters at home.
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