stopped by to see Laynie for a quick nuzzle (I had 15 min between appts) and Lacey answered the door, holding Smidge straight up, and she was wide awake and just beamed at me. What a beautiful wonderful gift! She loves to be kissed behind the ears (which I can tell you are sticking out just WONDERFULLY), another cute as america thing, and she just smiles and gazes at you.
Lacey just called to tell me she was kissing on her and she actually laughed. LAUGHED! Our girl laughed.
She visited the Lifechurch Edmond group today, and I know that you guys all just love to see her! What a special angel she is, and her Lolly loves her sooooo much -- God is good.
Thursday, April 3, 2008
Laynie's Opthamology Visit - Mar 27, 2008
Well, there’s two hours we’ll never get back. After sitting in the dirtiest waiting room in the WORLD (I’m prone to exaggeration, for you all that know me), but seriously, ooh. We actually watched the doctor go room to room, talk on the phone, and do stuff, and NEVER wash his hands. We are sooooo hyper sensitive to this, it was incredibly stupid !
But what we garnered from Dr. Dirty, was that our girl has sight in both eyes. Her parts are get this.... "Small".... REALLY? (Said in my MOST sarcastic tone) and the cloudiness we see on her left eye is a "Corneal Scar". Apparently, right now is a critical time for her brain and her eyes to be working together to develop her sight. So Dr. Dirty said we could do a "Corneal Transplant" with a 60% failure rate. ISn’t he a veritable ray of sunshine? or........ we could dilate her eyes daily, hoping that will help whatever is wrong with them. I looked at him, trying to remain as calm as I could, and told him that he was witnessing a miracle... That the baby that was laying in her mother’s arms was 10 weeks old, a precious gift from God, and that so far.... God’s had her plan. I told him we were doing everything to make her life optimum, but we were NOT going to put her in any distress or pain, any more than necessary for now. Yeah, she’s in casts.... they don’t bother her one bit, and I betcha that she LOVES it when she is bigger to have her feet turned the right way. For now, we will probably go with a second opinion on Laynie’s eyes. We are thrilled to know she has sight, even limited is a gift! So guess what I’m asking for...... time for more prayer.... time for praying for her eyes. Praying for the miraculous healing that we have witnessed over and over with our little girl. She cracked me up.... she can just really tune her pipes when she gets good and ticked. Now that we don’t worry over every little thing she does.... we just really get a kick out of her "mad cry". She can wrinkle up that face, and let out a howl as if to say "WHAT EVER!! Get me my .... milk, lovee, dry diaper, daddy, etc..." Oh my goodness, she is just precious.
Anyway, just a quick update to let you know all is well.....and by the way, Lacey turned in her stuff at work today... she is officially a stay at home Mommy. I know it will be hard for them for awhile, but this time with her baby is sooo precious and it’s time she’ll never get back. So, 10 weeks old, guys, God is Good.
But what we garnered from Dr. Dirty, was that our girl has sight in both eyes. Her parts are get this.... "Small".... REALLY? (Said in my MOST sarcastic tone) and the cloudiness we see on her left eye is a "Corneal Scar". Apparently, right now is a critical time for her brain and her eyes to be working together to develop her sight. So Dr. Dirty said we could do a "Corneal Transplant" with a 60% failure rate. ISn’t he a veritable ray of sunshine? or........ we could dilate her eyes daily, hoping that will help whatever is wrong with them. I looked at him, trying to remain as calm as I could, and told him that he was witnessing a miracle... That the baby that was laying in her mother’s arms was 10 weeks old, a precious gift from God, and that so far.... God’s had her plan. I told him we were doing everything to make her life optimum, but we were NOT going to put her in any distress or pain, any more than necessary for now. Yeah, she’s in casts.... they don’t bother her one bit, and I betcha that she LOVES it when she is bigger to have her feet turned the right way. For now, we will probably go with a second opinion on Laynie’s eyes. We are thrilled to know she has sight, even limited is a gift! So guess what I’m asking for...... time for more prayer.... time for praying for her eyes. Praying for the miraculous healing that we have witnessed over and over with our little girl. She cracked me up.... she can just really tune her pipes when she gets good and ticked. Now that we don’t worry over every little thing she does.... we just really get a kick out of her "mad cry". She can wrinkle up that face, and let out a howl as if to say "WHAT EVER!! Get me my .... milk, lovee, dry diaper, daddy, etc..." Oh my goodness, she is just precious.
Anyway, just a quick update to let you know all is well.....and by the way, Lacey turned in her stuff at work today... she is officially a stay at home Mommy. I know it will be hard for them for awhile, but this time with her baby is sooo precious and it’s time she’ll never get back. So, 10 weeks old, guys, God is Good.
Lolly's reflections & Laynie's Progress- Mar 22
Lolly’s Reflections and Laynie’s Progress
After being gone on vacation for the last few days and having a few minutes to catch my breath and reflect on the last 9 weeks, I am happy to blog to you about the things I’ve come up with to date. First of all, how lucky am I? and how blessed am I to have all of you to share it with!!
First, I want to update you on Miss Laynie. At her orthopedic visit this past week, she weighed in at 4 lbs, 6 oz (that’s up 2 oz, people!) her left hip is completely fixed (!!!! yeah for harnesses) and the doctor feels the right hip feels good, but still is alittle off.... but it WORKED! He’s going to leave her in her casts for a little longer than a week at a time, since she isn’t breaking any land speed records growing...so, she will remain in her casts for 13 days.... This week what was very apparant, was the fact that she moved her feet correctly just as much as she moved them backwards. That baby is going to be MULTI talented, I am telling you. The casts will be on her for many months, though.... Plus, her pediatrician has added 1/2 tsp of formula in every 1 ounce of breast milk, and our little smidge just loves it. Takes the whole ounce, burps like a truck driver and sleeps wonderful! What a blessing for her mommy! She sees the opthomologist on Thursday to see what is going on with her left eye. Hopefully it will be like everything else, and just need a "tune-up", kinda looks cloudy, like a cataract, keep praying that the cure will be easy and non-invasive.
I sent Laynie’s easter bunny picture to the Genetic Head at Children’s and he replied back with "WONDERFUL!..... Resurrection Kid." yes, she is. But, those of you reading and those of you continuing praying... we know "God is GOod." Here’s my thinking over the last 3 stress free, laying and relaxing days.... Always in my past life (I have two lives now, prior to October 3 and after, that day will be forever locked in my memory) I totally took for granted good health. I had 3 healthy babies, all my friends had healthy babies (except one, which I remained blissfully ignorant of her pain until now) Healthy babies everywhere. And when I saw a child with disabilities or a "different" child, I was always a little bit "put off" (I’m trying to be honest here) .. WOW... what did that mom do during pregnancy to cause that? or How could they COPE with that? or even as far as not making eye contact... because what in the world to you ever SAY to someone with a child with obvious disabilities??? This coming from me, who can talk to a mailman or a 99 year old deaf man, or a 3 year old hitting his sister, ANYONE I can talk to.... but put me up with someone that has a disability....rendered speechless. I’ve always said ever since I had Hallie at 37 years old, that God has an AMAZING sense of humor. He knew in his infinite wisdom that all I needed to round out my personality was to have a grandchild with disabilities.
When I found out Lacey was pregnant, and then found out we were having a GIRL, I was at Dollar Tree and found some of the cutest tea party clothes ever. I purchased 2 sets, one for Payten (Greg’s grandbaby and in my heart, mine too) and one for our highly anticipated arrival. 2 precious little high heeled shoes, complete with foo foo skirts, wands and of course, the much needed tiaras. What are princesses without tiaras? After our October 3rd finding, and all the turmoil that ensued those few weeks after, I had forgotten about my purchase. Right after Thanksgiving, probably in one of my darkest days.... I found that sack of tea party regalia, and I sat in the middle of the floor in my closet and just cried and grieved for the precious times I thought we’d be missing, and all the incredible bonding of the first grandbaby/grandma that I would never get to experience with our little baby. That one time. I cried until I thought I could never cry again. Almost made myself sick with the crying, then a voice inside of my heart said "She is fearfully and wonderfully made..... I had her plan before you ever knew she was in existence." and I never cried again... I blogged and I prayed and I believed and I never ever stopped hoping.... until the hospital when the doctors shook our faith, and Lacey and I grieved, holding a tiny little bonnet made of a handkerchief, with her name embroidered on the side, for her to wear home, and carry on her wedding day. That was a hard day. Then we took her home, and she showed us how never to give up, never to stop believing, and gave us the incredible gift of living in the moment. In my whole life I have always been consumed with "When I graduate..." or "When I get this far in my job".... or "When they walk..." or "When they graduate"....... never, EVER "What can I do today that will make a difference for me?" Holland teaches you to slow down, and to appreciate ... well..... LIFE. I saw some special kids on vacation and they were having such a great time. Their parents were all hands on deck and they were having quite the fun. 2 years ago, I wouldn’t have spent 10 seconds thinking about things like "I hope they don’t have heart conditions" or "I wonder what type of trisomy they have". I would have smiled absently and walked on by. God changed my heart. God has changed everyone that reads my blogs hearts. I know that. I think all of us have a better understanding of "Special Gifts" and "God’s Blessing and Miracles". Laynie will have a circle of love and friendship that will sustain her for many years.... but I also know that she will face ignorance, and ugliness, and for that I would protect her with my life. I, myself, was ignorant and never blantantly ugly, but I was apathetic, more out of fear than maliciousness. No more. Every person and every child is a gift from God. And some gifts are more special than others.... and praise GOD I finally know and believe and understand --
God is Good.... All the time.
After being gone on vacation for the last few days and having a few minutes to catch my breath and reflect on the last 9 weeks, I am happy to blog to you about the things I’ve come up with to date. First of all, how lucky am I? and how blessed am I to have all of you to share it with!!
First, I want to update you on Miss Laynie. At her orthopedic visit this past week, she weighed in at 4 lbs, 6 oz (that’s up 2 oz, people!) her left hip is completely fixed (!!!! yeah for harnesses) and the doctor feels the right hip feels good, but still is alittle off.... but it WORKED! He’s going to leave her in her casts for a little longer than a week at a time, since she isn’t breaking any land speed records growing...so, she will remain in her casts for 13 days.... This week what was very apparant, was the fact that she moved her feet correctly just as much as she moved them backwards. That baby is going to be MULTI talented, I am telling you. The casts will be on her for many months, though.... Plus, her pediatrician has added 1/2 tsp of formula in every 1 ounce of breast milk, and our little smidge just loves it. Takes the whole ounce, burps like a truck driver and sleeps wonderful! What a blessing for her mommy! She sees the opthomologist on Thursday to see what is going on with her left eye. Hopefully it will be like everything else, and just need a "tune-up", kinda looks cloudy, like a cataract, keep praying that the cure will be easy and non-invasive.
I sent Laynie’s easter bunny picture to the Genetic Head at Children’s and he replied back with "WONDERFUL!..... Resurrection Kid." yes, she is. But, those of you reading and those of you continuing praying... we know "God is GOod." Here’s my thinking over the last 3 stress free, laying and relaxing days.... Always in my past life (I have two lives now, prior to October 3 and after, that day will be forever locked in my memory) I totally took for granted good health. I had 3 healthy babies, all my friends had healthy babies (except one, which I remained blissfully ignorant of her pain until now) Healthy babies everywhere. And when I saw a child with disabilities or a "different" child, I was always a little bit "put off" (I’m trying to be honest here) .. WOW... what did that mom do during pregnancy to cause that? or How could they COPE with that? or even as far as not making eye contact... because what in the world to you ever SAY to someone with a child with obvious disabilities??? This coming from me, who can talk to a mailman or a 99 year old deaf man, or a 3 year old hitting his sister, ANYONE I can talk to.... but put me up with someone that has a disability....rendered speechless. I’ve always said ever since I had Hallie at 37 years old, that God has an AMAZING sense of humor. He knew in his infinite wisdom that all I needed to round out my personality was to have a grandchild with disabilities.
When I found out Lacey was pregnant, and then found out we were having a GIRL, I was at Dollar Tree and found some of the cutest tea party clothes ever. I purchased 2 sets, one for Payten (Greg’s grandbaby and in my heart, mine too) and one for our highly anticipated arrival. 2 precious little high heeled shoes, complete with foo foo skirts, wands and of course, the much needed tiaras. What are princesses without tiaras? After our October 3rd finding, and all the turmoil that ensued those few weeks after, I had forgotten about my purchase. Right after Thanksgiving, probably in one of my darkest days.... I found that sack of tea party regalia, and I sat in the middle of the floor in my closet and just cried and grieved for the precious times I thought we’d be missing, and all the incredible bonding of the first grandbaby/grandma that I would never get to experience with our little baby. That one time. I cried until I thought I could never cry again. Almost made myself sick with the crying, then a voice inside of my heart said "She is fearfully and wonderfully made..... I had her plan before you ever knew she was in existence." and I never cried again... I blogged and I prayed and I believed and I never ever stopped hoping.... until the hospital when the doctors shook our faith, and Lacey and I grieved, holding a tiny little bonnet made of a handkerchief, with her name embroidered on the side, for her to wear home, and carry on her wedding day. That was a hard day. Then we took her home, and she showed us how never to give up, never to stop believing, and gave us the incredible gift of living in the moment. In my whole life I have always been consumed with "When I graduate..." or "When I get this far in my job".... or "When they walk..." or "When they graduate"....... never, EVER "What can I do today that will make a difference for me?" Holland teaches you to slow down, and to appreciate ... well..... LIFE. I saw some special kids on vacation and they were having such a great time. Their parents were all hands on deck and they were having quite the fun. 2 years ago, I wouldn’t have spent 10 seconds thinking about things like "I hope they don’t have heart conditions" or "I wonder what type of trisomy they have". I would have smiled absently and walked on by. God changed my heart. God has changed everyone that reads my blogs hearts. I know that. I think all of us have a better understanding of "Special Gifts" and "God’s Blessing and Miracles". Laynie will have a circle of love and friendship that will sustain her for many years.... but I also know that she will face ignorance, and ugliness, and for that I would protect her with my life. I, myself, was ignorant and never blantantly ugly, but I was apathetic, more out of fear than maliciousness. No more. Every person and every child is a gift from God. And some gifts are more special than others.... and praise GOD I finally know and believe and understand --
God is Good.... All the time.
March 12, 2008 2 months old!
We have had our special sweetheart for 2 months now. 2 wonderful incredible lifechanging months. The doctors are still shaking their heads. Lacey said to her today "Laynie bug, look at you, sweet peaches!" and little miss just threw back her head and smiled and coo’d. SMILED full out at her mama. That baby can hear and can see, and can respond correctly. She is AMAZING. We’ve heard NOTHING, I repeat, NOTHING from the genetic doctors. I guess they are all just scratching their butts (sorry) saying, "Hmm, guess we shouldn’t have been so QUICK"..... God is good, people. God’s plan for Laynie is happening, and alive in us every day. My brother summed it up in a nutshell.... "I think Laynie’s plan is perfect and love is changing US." Hello. I’ve always seen those "Faith, Hope and Love" things everywhere, and I never got it. Faith is a belief that surpasses understanding, faith is a promise to yourself to believe without question, Hope is giving yourself permission to have the impossible, the serenity of putting yourself out there and just believing in the unbelievable... and Love, well Love is the best.. In Holland, love surrounds you every second. Love comes in quick hugs from people that don’t even know why they are hugging you, love comes in sweet emails from friends you haven’t seen in years that say things like "We are praying for you everyday" and "I shared your story with my church group and we are praying for you without ceasing". ... That my friends is Love. Love is a sweet smile or the funniest little sneeze, followed by the BIGGEST sigh in the world. That’s from our Laynie.
We took Laynie out to Target for her first outing. (Of course it would HAVE to be Target, with me for her Lolly)... She wasn’t having ANY of her carseat nonsense, so of course, out she comes, and there go the jaws dropping. Lacey said "Oh, if ONE more person says, ’she is sooo tiny’, I might lose it"... then immediately said, "Mom, every time you take her from me at the apartment and I look at her with you holding her, I say "She’s sooo tiny"... so what should I expect"??? Hello. SHE IS TINY. :) I was holding her in her blanket, keeping her pretty covered up for germs and such, and she was just talking and squeaking her little pipes, telling me ALL about it, and the lady in the dressing room said "Is there a baby in there? I thought you had a doll". Well, yeah, because I’m a 46 year old that carries my dolls into Target. Wow. People will ALWAYS be fascinated with her because of her mighty size. She weighed in at 4 lbs 4 oz at the orthopedic the other day (we left her onesie on and a dry diaper , so take off 2 oz for that) but guess what?? At 8 weeks old, she is back to birth weight. WHAT A VICTORY~! After our orthopedic visit, we know that our little miss is going to be in casts for a very long time. Her normal reflex and muscle tone take her feet back in the backward position. But I’m not discouraged because after all she’s only been in them 2 weeks. And they don’t bother her one bit, so on we go. She is much easier to grip with her "Paraphenalia" on. The little harness that holds her hips in place really does make her look like a goalie. Be sure and look at my profile, the picture of her and Brad is just precious. You can really see how itty bitty she is. Lacey cracked up because he was sitting her on the back of the chair and they were just talking to each other. I have another pic of them both just smiling at their mom, but I haven’t put it on yet. We have a DANDY pic to share in a week or so, Lacey has first right to put it on her myspace...so we’ll be sharing shortly. Oh, it is beyond precious.
Well, it had been awhile and I wanted to let you all know all is well on the home front and Miss Laynie continues to thrive under her sweet mommy’s watchful and caring eye. Looking forward to sharing her first easter egg hunt with her next week. Isn’t God so good?
We took Laynie out to Target for her first outing. (Of course it would HAVE to be Target, with me for her Lolly)... She wasn’t having ANY of her carseat nonsense, so of course, out she comes, and there go the jaws dropping. Lacey said "Oh, if ONE more person says, ’she is sooo tiny’, I might lose it"... then immediately said, "Mom, every time you take her from me at the apartment and I look at her with you holding her, I say "She’s sooo tiny"... so what should I expect"??? Hello. SHE IS TINY. :) I was holding her in her blanket, keeping her pretty covered up for germs and such, and she was just talking and squeaking her little pipes, telling me ALL about it, and the lady in the dressing room said "Is there a baby in there? I thought you had a doll". Well, yeah, because I’m a 46 year old that carries my dolls into Target. Wow. People will ALWAYS be fascinated with her because of her mighty size. She weighed in at 4 lbs 4 oz at the orthopedic the other day (we left her onesie on and a dry diaper , so take off 2 oz for that) but guess what?? At 8 weeks old, she is back to birth weight. WHAT A VICTORY~! After our orthopedic visit, we know that our little miss is going to be in casts for a very long time. Her normal reflex and muscle tone take her feet back in the backward position. But I’m not discouraged because after all she’s only been in them 2 weeks. And they don’t bother her one bit, so on we go. She is much easier to grip with her "Paraphenalia" on. The little harness that holds her hips in place really does make her look like a goalie. Be sure and look at my profile, the picture of her and Brad is just precious. You can really see how itty bitty she is. Lacey cracked up because he was sitting her on the back of the chair and they were just talking to each other. I have another pic of them both just smiling at their mom, but I haven’t put it on yet. We have a DANDY pic to share in a week or so, Lacey has first right to put it on her myspace...so we’ll be sharing shortly. Oh, it is beyond precious.
Well, it had been awhile and I wanted to let you all know all is well on the home front and Miss Laynie continues to thrive under her sweet mommy’s watchful and caring eye. Looking forward to sharing her first easter egg hunt with her next week. Isn’t God so good?
March 1, 2008
March 1, 2008
I can't believe it's March 1. Wasn't it just Christmas? Wasn't Laynie just born? Now our gift is 6 weeks old. 6 weeks. She continues to amaze.
I had typed a long long blog this morning and somehow managed to erase it before I got it posted. As I was typing it, Lacey called and talked to me, and once again, I was amazed by God's power. What I was typing about, was exactly what was on her heart this morning. We are so blessed. So completely amazingly blessed. My mom spent the night with Lacey last night so she could rest, and Lacey couldn't hardly wait to get in there to see Laynie this morning, and when mom handed her off, and Lacey said "Good morning peaches", Laynie's smile lit up the room. She smiled and smiled and smiled. Coo'd, and turned her head and smiled some more. as if to say "I love ole Grammie Great, but YOUR my favorite, momma". I know what they say about her brain, and the fact that they don't know what her future holds as far as cognitive and developmental learning.... but a baby that smiles and responds and squeaks and talks at 6 weeks old??? That's pretty darn amazing. She holds her head up in the turtle position, and can roll back and forth just great. To me, that is just amazing. She has NO IDEA she weighs 4 pounds (almost). And we are going to keep on keeping on, loving her strong and keeping the faith.
Lacey made a conscious decision on October 3. Now she'll tell you, "I didn't know the enormity of my decision", but she doesn't rail against the injustice of it. She doesn't ask "Oh God, why me?", she looks at Laynie and says "What can I do to glorify God more through her". We believe that our girl will have a special gift, I see all these amazing stories of people with disabilities that are amazing in other areas (see my videos on myspace) and I know that our Laynie will be among those. Her special gift already is the gift of faith. Unwavering Faith that God is Good. She has grown my faith more than I thought possible. Faith was a word about people that went to church. They had faith. Faith was God. What I know about faith now, is the totally undisciplined lack of self, no "self" in a true testament of faith. You are under God's power, when you truly have faith. God directs and leads you, and with HIS purpose foremost in your mind... you walk in Faith. And he hasn't failed us. Not once. We started to doubt God's plan for her in the hospital. We listened to the doctors and the grim outcomes and we lost sight of our faith. It took the Lifechurch team to come to our room and remind us, No one knows God's plan. God has Laynie's plan, and it's perfect and it's complete. And all we are, are his people, to walk through the plan, not self-seeking, but looking to Him for guidance and hope, and keep walking in our complete faith.
I may not be making any sense, and it's frustrating, not being able to put into words the gigantic feelings that I have on this. The purpose of Laynie is perfect. And though through the world's "eyes", our girl will never be perfect.... in those that are touched by her, know her story and her magnificent journey.... she is perfect. She is amazing, and she is His.
You are told all the time by your parents, that you will never understand the love that a grandparent has for a grandchild. You hear it, you listen, you nod.. I just want to tell you, there isn't a feeling I've ever experienced that compares to this love and compassion and faith, that I have with my granddaughter. Coupled with the "Grandma" love that comes naturally, plus the supernatural power of being so close to God right now.. feeling His constant presence in our lives... I wish everyone could have this joy and peace. Peace that passeth understanding. That's having faith in God.
God is Good. All the time.
I can't believe it's March 1. Wasn't it just Christmas? Wasn't Laynie just born? Now our gift is 6 weeks old. 6 weeks. She continues to amaze.
I had typed a long long blog this morning and somehow managed to erase it before I got it posted. As I was typing it, Lacey called and talked to me, and once again, I was amazed by God's power. What I was typing about, was exactly what was on her heart this morning. We are so blessed. So completely amazingly blessed. My mom spent the night with Lacey last night so she could rest, and Lacey couldn't hardly wait to get in there to see Laynie this morning, and when mom handed her off, and Lacey said "Good morning peaches", Laynie's smile lit up the room. She smiled and smiled and smiled. Coo'd, and turned her head and smiled some more. as if to say "I love ole Grammie Great, but YOUR my favorite, momma". I know what they say about her brain, and the fact that they don't know what her future holds as far as cognitive and developmental learning.... but a baby that smiles and responds and squeaks and talks at 6 weeks old??? That's pretty darn amazing. She holds her head up in the turtle position, and can roll back and forth just great. To me, that is just amazing. She has NO IDEA she weighs 4 pounds (almost). And we are going to keep on keeping on, loving her strong and keeping the faith.
Lacey made a conscious decision on October 3. Now she'll tell you, "I didn't know the enormity of my decision", but she doesn't rail against the injustice of it. She doesn't ask "Oh God, why me?", she looks at Laynie and says "What can I do to glorify God more through her". We believe that our girl will have a special gift, I see all these amazing stories of people with disabilities that are amazing in other areas (see my videos on myspace) and I know that our Laynie will be among those. Her special gift already is the gift of faith. Unwavering Faith that God is Good. She has grown my faith more than I thought possible. Faith was a word about people that went to church. They had faith. Faith was God. What I know about faith now, is the totally undisciplined lack of self, no "self" in a true testament of faith. You are under God's power, when you truly have faith. God directs and leads you, and with HIS purpose foremost in your mind... you walk in Faith. And he hasn't failed us. Not once. We started to doubt God's plan for her in the hospital. We listened to the doctors and the grim outcomes and we lost sight of our faith. It took the Lifechurch team to come to our room and remind us, No one knows God's plan. God has Laynie's plan, and it's perfect and it's complete. And all we are, are his people, to walk through the plan, not self-seeking, but looking to Him for guidance and hope, and keep walking in our complete faith.
I may not be making any sense, and it's frustrating, not being able to put into words the gigantic feelings that I have on this. The purpose of Laynie is perfect. And though through the world's "eyes", our girl will never be perfect.... in those that are touched by her, know her story and her magnificent journey.... she is perfect. She is amazing, and she is His.
You are told all the time by your parents, that you will never understand the love that a grandparent has for a grandchild. You hear it, you listen, you nod.. I just want to tell you, there isn't a feeling I've ever experienced that compares to this love and compassion and faith, that I have with my granddaughter. Coupled with the "Grandma" love that comes naturally, plus the supernatural power of being so close to God right now.. feeling His constant presence in our lives... I wish everyone could have this joy and peace. Peace that passeth understanding. That's having faith in God.
God is Good. All the time.
Laynie's Orthopedic Visit - Feb 27, 2008
Laynie’s visit to the orthopedic doctor
Miss Laynie went to her first visit to the orthopedic today. I COULDN"T GO. Seems I have some crud (still not convinced it's the flu) and I am not chancing it. So Lacey called me when they were done and here's what I know.....
Smidge's right hip is very dislocated and may require surgery later. Her left hip can probably be fixed with the harness. BUT he said that she was very "Bendy" and the harness may fix both hips. It looks and fits like overalls on her. and she has 2 itty bitty casts on her feet. (which by the way aren't club feet, they are the opposite of club feet) She has lots of muscle tone in her feet and ankles, which is great, and she jerked and flexed them out of the doctors hands. The xray tech told Lacey that she was the tiniest baby he had ever xrayed! Hello. Our big almost 4 pounder! She also pooped on the xray table. Told them, huh? Let me leave you a little something to remember me by.....
So our girl will be going back to the orthopedic every week for many weeks to come. She has soft casts on both feet, and it was very hard on her mommy this morning. I can't believe I couldn't go. I have been counting the days for this appointment, and I"M SICK. Sigh. I know the financial pressure is becoming a burden to my kids. The doctors bills are enormous, and Lacey told me her co-pay each week for the ortho. Wow. I'm meeting with IBC Bank tomorrow to see if we can set up an account for her. Everyone has been asking what they can do, and honestly, a $20 donation would be an amazing gift to Brad and Lacey right now. Every time she goes to the doctor, they have to pay between $40-$70 because of the "specialist" title. I shudder to think about the hospital (NICU) bills. The kids trust God in all of this, and are just taking it a "day at a time", but I know the burden of financial strain, and WOW.... BUT, encouraging news today is that her feet are fixable, and we'll just watch that little right hip and see if it turns around on it's own. Her shoulders and wrists are fine, just very flexible too! Thanks for your prayers and love..... She is a precious baby.... and our God is soo Good, all the time.
Miss Laynie went to her first visit to the orthopedic today. I COULDN"T GO. Seems I have some crud (still not convinced it's the flu) and I am not chancing it. So Lacey called me when they were done and here's what I know.....
Smidge's right hip is very dislocated and may require surgery later. Her left hip can probably be fixed with the harness. BUT he said that she was very "Bendy" and the harness may fix both hips. It looks and fits like overalls on her. and she has 2 itty bitty casts on her feet. (which by the way aren't club feet, they are the opposite of club feet) She has lots of muscle tone in her feet and ankles, which is great, and she jerked and flexed them out of the doctors hands. The xray tech told Lacey that she was the tiniest baby he had ever xrayed! Hello. Our big almost 4 pounder! She also pooped on the xray table. Told them, huh? Let me leave you a little something to remember me by.....
So our girl will be going back to the orthopedic every week for many weeks to come. She has soft casts on both feet, and it was very hard on her mommy this morning. I can't believe I couldn't go. I have been counting the days for this appointment, and I"M SICK. Sigh. I know the financial pressure is becoming a burden to my kids. The doctors bills are enormous, and Lacey told me her co-pay each week for the ortho. Wow. I'm meeting with IBC Bank tomorrow to see if we can set up an account for her. Everyone has been asking what they can do, and honestly, a $20 donation would be an amazing gift to Brad and Lacey right now. Every time she goes to the doctor, they have to pay between $40-$70 because of the "specialist" title. I shudder to think about the hospital (NICU) bills. The kids trust God in all of this, and are just taking it a "day at a time", but I know the burden of financial strain, and WOW.... BUT, encouraging news today is that her feet are fixable, and we'll just watch that little right hip and see if it turns around on it's own. Her shoulders and wrists are fine, just very flexible too! Thanks for your prayers and love..... She is a precious baby.... and our God is soo Good, all the time.
Laynie Hope 5 weeks old 2-21-08
I got the call from a scared mommy about 11:20 last night. "She's choking on her bottle and she can't breathe". So off I scoot to Edmond.... it's just NO BIG deal making that 45 minute drive anymore. And I can do it in about 30 now, when I'm really motivated. And last night, I was REALLY motivated. By the time I had gotten there, she had righted herself and hacked up her "Loogie". I proceeded to shoo Mommy to bed, and enjoyed an all-nighter with my girl. Am I cross-eyed right now?? Oh yea. Did I go to the Y and walk on the treadmill last night until I couldn't hardly walk to the car. Oh yeah. Did I burn myself in the tanning bed after the excitement of walking my tail off at the Y? Oh yeah. So, how do I feel right now??? Well let's say I don't feel as fresh as a spring daisy... that's for sure. But I did manage to make 2 sales today (GOD IS GOOD) and that seems to always make life a little brighter. Even stuttering and with 2 different socks on... got er done.
Ok, let's talk about Smidge. I don't know what happened with her mom, but the little girl downright talks while she is trying to eat. She grunts and she whistles and she squeaks (My other name for her "Squeaky McSqueaker") while she eats, and all I can figure out is she aspirated some of her milk. She wasn't really happy about it, and yelled at her mom until I got there. When she heard my voice and felt me holding her, she proceeded to tell me all about it, WIDE EYED and squeaking for about 20 minutes. I LOVED IT. Then I gently gave her the rest of her bottle and off to sleepy land we went. Her in her boppy seat on the couch, kinda propped up, and me with my legs under her sprawled out on the couch. (Pretty sight). We slept that way until about 3 am. Then she took her bottle, burped like a big girl, sang alittle to me, and off we went BACK to sleep, this time in our bed, instead of that fun couch, (hee hee, OUR bed), with her sprawled on her wedge, bundled to the hilt with blankets, and me slumbering beside her (far enough to not smash, but close enough to pat). So, she and I, we're a team. Love that baby.
She's going to her pediatrician in the morning and discuss the possibility of adding some formula to see if we can get her to gain some weight. She hovers around 3 lbs 9 oz, and just isn't going anywhere fast. I never really expected her to, but it still feels like we're not doing enough, not to even grow a few ounces. So the best thing to say to us is NOT, "Is she getting big"?? Uhm, no. My hope is she weighs 6 lbs by the time she is 6 months old. That would be a victory.
Did I tell you guys about American Girl "Itty Bitty" baby clothes? They fit our girl. And one of Lacey's cousins brought a box of the sweetest clothes over and our girl was sooo patient letting us change her, and change her and change her. She was such a great trooper. I think she liked having some clothes that fit. What an angel.
You can see a picture of her on my pics in her album. Cute as a button.
Thanks for the calls on reminding us about Shriner's Hospital. Hopefully, her feet won't be that big of a deal, and we can fix them with splints or casts. If you are still praying for our angel, let's focus on 3 things... her continued good eating skills, the fluid on her brain to be gone, and ease of the process of splints and casts. Lacey & Brad's blood work was perfect. No chromosomal abnormalities in either one. Now we wait for a vein to get big enough on Laynie to see what is up with her. Meanwhile, we keep on getting great days and sweet smiles. God is SOO good.. all the time.
Ok, let's talk about Smidge. I don't know what happened with her mom, but the little girl downright talks while she is trying to eat. She grunts and she whistles and she squeaks (My other name for her "Squeaky McSqueaker") while she eats, and all I can figure out is she aspirated some of her milk. She wasn't really happy about it, and yelled at her mom until I got there. When she heard my voice and felt me holding her, she proceeded to tell me all about it, WIDE EYED and squeaking for about 20 minutes. I LOVED IT. Then I gently gave her the rest of her bottle and off to sleepy land we went. Her in her boppy seat on the couch, kinda propped up, and me with my legs under her sprawled out on the couch. (Pretty sight). We slept that way until about 3 am. Then she took her bottle, burped like a big girl, sang alittle to me, and off we went BACK to sleep, this time in our bed, instead of that fun couch, (hee hee, OUR bed), with her sprawled on her wedge, bundled to the hilt with blankets, and me slumbering beside her (far enough to not smash, but close enough to pat). So, she and I, we're a team. Love that baby.
She's going to her pediatrician in the morning and discuss the possibility of adding some formula to see if we can get her to gain some weight. She hovers around 3 lbs 9 oz, and just isn't going anywhere fast. I never really expected her to, but it still feels like we're not doing enough, not to even grow a few ounces. So the best thing to say to us is NOT, "Is she getting big"?? Uhm, no. My hope is she weighs 6 lbs by the time she is 6 months old. That would be a victory.
Did I tell you guys about American Girl "Itty Bitty" baby clothes? They fit our girl. And one of Lacey's cousins brought a box of the sweetest clothes over and our girl was sooo patient letting us change her, and change her and change her. She was such a great trooper. I think she liked having some clothes that fit. What an angel.
You can see a picture of her on my pics in her album. Cute as a button.
Thanks for the calls on reminding us about Shriner's Hospital. Hopefully, her feet won't be that big of a deal, and we can fix them with splints or casts. If you are still praying for our angel, let's focus on 3 things... her continued good eating skills, the fluid on her brain to be gone, and ease of the process of splints and casts. Lacey & Brad's blood work was perfect. No chromosomal abnormalities in either one. Now we wait for a vein to get big enough on Laynie to see what is up with her. Meanwhile, we keep on getting great days and sweet smiles. God is SOO good.. all the time.
Feb 14, 2008 If you have time.........
On TLC Channel and Discovery are two really amazing programs. One is called "World's smallest kids" on Discovery and on TLC it's called "Kenadie's story". If you have DVR and can program these, you should. Kenadie's story will be on Discovery Health channel Sunday 20th at 10pm and Monday 21 at 1 am-- The smallest people will be on TLC on 27th 8 & 11 pm -- World's smallest kids is this sunday 17th at 4 pm.
I don't think this is what our Laynie bug will be facing, but it was an interesting, amazing show. That little Kenadie is just precious. I emailed her mom when I was thinking it was what our Laynie had, and Brianne, her mom, answered me right back and gave me such words of encouragement. Kenadie was 3 years old before she was big enough to have an MRI. I'm guessing that will be the same with our Laynie. She is too small to be able to do that right now, or anytime in the near future.
Anyway wanted to share this special program with you, and if you have time... check it out!
I don't think this is what our Laynie bug will be facing, but it was an interesting, amazing show. That little Kenadie is just precious. I emailed her mom when I was thinking it was what our Laynie had, and Brianne, her mom, answered me right back and gave me such words of encouragement. Kenadie was 3 years old before she was big enough to have an MRI. I'm guessing that will be the same with our Laynie. She is too small to be able to do that right now, or anytime in the near future.
Anyway wanted to share this special program with you, and if you have time... check it out!
Feb 13, 2008 Laynie is one month old!
It's hard to believe that 4 weeks have come and gone. 4 precious, amazing, exhausting, thrilling, overwhelming, exciting, scary God-given weeks.
Smidge, as she was inside her mommy, still remains clueless to the drama all around her. You can see from her pictures, though they make her look MUCH larger than she really is, she is doing terrific. She eats like a pig, or a bird, pretty much depending on her mood, and who's feeding her, burps like a truck driver (albeit a small one), and has wonderful wakeful times. When she is fed and clean diapered, and is awake, that is the sweetest thing ever. Her right eye is smaller, and tends to roll alittle, but her left eye stays solidly on who she is looking at, and just looks you over good. Newborns tend to cross their eyes anyway, and Layniebug is no exception! I just sat and stared at her sleeping yesterday, and marveled at the fact that she is, indeed, one month old.
Where do we go from here? What's our course of action? Where are answers to our questions? the list is endless..... Holland is a land of not too many answers, to way too many questions. Whatever we are doing, seems to be working. God has her plan, and she is living proof that sometimes doctors don't know everything. Yep, she isn't your average baby, but those of you that know us well.......average isn't all that! We are taking it one day at a time, and starting to actually think in weeks, instead of days. We bought nipples for bottles yesterday. Things all mommy's take for granted, more diapers, more wipes, more bottles, things like that..... these are gifts for us. Things we didn't expect to get to do.
Miss Laynie went to her first lifegroup last night, and was passed around and ooh'd and ah'd over, and well, let's just say, not alot of bible study got accomplished last night.. Had alot of "Baby" study though. Brad was great, so excited to go show her off, actually called Lacey and told her what she would wear. Buckled her in the carseat and carried it! (Don't tell his doctor!) I love these kids. They are in 100 percent.
Miss Laynie goes to the pediatric orthopedic, so we can look at those spiffy little backward feet and see what can be done on the 27th.... That's our next stop. We'll see what he says and we'll go from there. I pray that the fix is simple, and that our little miss will be no worse for the wear.
Well, that's all for today.......one month old.... God is Good.
Smidge, as she was inside her mommy, still remains clueless to the drama all around her. You can see from her pictures, though they make her look MUCH larger than she really is, she is doing terrific. She eats like a pig, or a bird, pretty much depending on her mood, and who's feeding her, burps like a truck driver (albeit a small one), and has wonderful wakeful times. When she is fed and clean diapered, and is awake, that is the sweetest thing ever. Her right eye is smaller, and tends to roll alittle, but her left eye stays solidly on who she is looking at, and just looks you over good. Newborns tend to cross their eyes anyway, and Layniebug is no exception! I just sat and stared at her sleeping yesterday, and marveled at the fact that she is, indeed, one month old.
Where do we go from here? What's our course of action? Where are answers to our questions? the list is endless..... Holland is a land of not too many answers, to way too many questions. Whatever we are doing, seems to be working. God has her plan, and she is living proof that sometimes doctors don't know everything. Yep, she isn't your average baby, but those of you that know us well.......average isn't all that! We are taking it one day at a time, and starting to actually think in weeks, instead of days. We bought nipples for bottles yesterday. Things all mommy's take for granted, more diapers, more wipes, more bottles, things like that..... these are gifts for us. Things we didn't expect to get to do.
Miss Laynie went to her first lifegroup last night, and was passed around and ooh'd and ah'd over, and well, let's just say, not alot of bible study got accomplished last night.. Had alot of "Baby" study though. Brad was great, so excited to go show her off, actually called Lacey and told her what she would wear. Buckled her in the carseat and carried it! (Don't tell his doctor!) I love these kids. They are in 100 percent.
Miss Laynie goes to the pediatric orthopedic, so we can look at those spiffy little backward feet and see what can be done on the 27th.... That's our next stop. We'll see what he says and we'll go from there. I pray that the fix is simple, and that our little miss will be no worse for the wear.
Well, that's all for today.......one month old.... God is Good.
Lolly & Pops First Babysitting - Feb 10, 2008
It went well. Laynie tolerated us just fine. Well, me, anyway. The only time Greg held her, she cried. So there you go. Lolly's girl.
Let me tell you about our smidge. We bought her a digital scale, and now we can weigh her weekly (only) and see our tiny progress. She weighed 4 lbs 2 oz, so she is back to fighting weight. :) Or at least, entrance weight (they say, I still don't believe it). When we arrived, she was close to eating time, so she was fussy and in no mood to be coddled or played with. JUST STINKIN FEED ME. Hello. So, on to the 30 minute task of eating. About 27 cc's. She eats Just enough to get her tummy happy, then off she sinks into sleepy land. We have to change her diaper half way through, just to wake her up, and that's always pretty fun. For a little smidge, the kid has a pair of lungs, I can tell ya. She took the rest of her bottle, and proceeded to her boppy for a good full hour of relaxing, vibrating snoozy. I wish they had one of those boppy seats in my size. What a GREAT invention. Wow. Then I couldn't stand it another second and snuggled her up to my chest and chin so I could just take her in. What a precious gift she is. About the time mom and dad got home, she decided to tune up the pipes, so of course, when they walked in, she was crying. Nice. thanks, smidge, make mom and dad think you were SOOO abused in their absence.
I have to tell you, watching Brad give her a bottle....quite painful. BUT that little stinker LOVES to take her bottle with her daddy. He can cram 30 cc's plus down that belly in about 15 minutes. It is simply amazing. Now Lacey & my approach is a tiny more subtle, but not old dad. He just gets to business and that little lady snaps to. I JUST LOVE IT. She truly completely loves her daddy. I love that Lacey & Brad are keeping their sense of humor. They are approaching this adventure with an open, loving heart and mind.. and it's an awesome sight for me to watch. Sure they are worn out, sure they are seeing double, but I guess I don't know too many newborn parents that aren't. !!
Lacey called me this morning and told me that Brad had given her her bottle and then Lacey gave her a bath, and she was wide awake for about 45 minutes, just checking them out. She shot a picture on her phone and sent it to me, and I have NO IDEA how to download it out of the phone. That picture was the BEST. It says "HI LOLLY" and it's just her, looking straight at the camera, both eyes fully open, just the sweetest look on her face. What a miracle. What a gift.
I feel your prayers, I feel all of your love and thoughts. I know that our journey has made a difference in the way I look at things, and the day to day difference it has made in my life. I know our story has touched hundreds of lives and hearts, and for that I am truly thankful. God has a plan with our Laynie, and he is working it, and lives are changed and better because of our girl. Mine, especially.
God is Good. All the time.
Let me tell you about our smidge. We bought her a digital scale, and now we can weigh her weekly (only) and see our tiny progress. She weighed 4 lbs 2 oz, so she is back to fighting weight. :) Or at least, entrance weight (they say, I still don't believe it). When we arrived, she was close to eating time, so she was fussy and in no mood to be coddled or played with. JUST STINKIN FEED ME. Hello. So, on to the 30 minute task of eating. About 27 cc's. She eats Just enough to get her tummy happy, then off she sinks into sleepy land. We have to change her diaper half way through, just to wake her up, and that's always pretty fun. For a little smidge, the kid has a pair of lungs, I can tell ya. She took the rest of her bottle, and proceeded to her boppy for a good full hour of relaxing, vibrating snoozy. I wish they had one of those boppy seats in my size. What a GREAT invention. Wow. Then I couldn't stand it another second and snuggled her up to my chest and chin so I could just take her in. What a precious gift she is. About the time mom and dad got home, she decided to tune up the pipes, so of course, when they walked in, she was crying. Nice. thanks, smidge, make mom and dad think you were SOOO abused in their absence.
I have to tell you, watching Brad give her a bottle....quite painful. BUT that little stinker LOVES to take her bottle with her daddy. He can cram 30 cc's plus down that belly in about 15 minutes. It is simply amazing. Now Lacey & my approach is a tiny more subtle, but not old dad. He just gets to business and that little lady snaps to. I JUST LOVE IT. She truly completely loves her daddy. I love that Lacey & Brad are keeping their sense of humor. They are approaching this adventure with an open, loving heart and mind.. and it's an awesome sight for me to watch. Sure they are worn out, sure they are seeing double, but I guess I don't know too many newborn parents that aren't. !!
Lacey called me this morning and told me that Brad had given her her bottle and then Lacey gave her a bath, and she was wide awake for about 45 minutes, just checking them out. She shot a picture on her phone and sent it to me, and I have NO IDEA how to download it out of the phone. That picture was the BEST. It says "HI LOLLY" and it's just her, looking straight at the camera, both eyes fully open, just the sweetest look on her face. What a miracle. What a gift.
I feel your prayers, I feel all of your love and thoughts. I know that our journey has made a difference in the way I look at things, and the day to day difference it has made in my life. I know our story has touched hundreds of lives and hearts, and for that I am truly thankful. God has a plan with our Laynie, and he is working it, and lives are changed and better because of our girl. Mine, especially.
God is Good. All the time.
Laynie's Genetic Workup Feb 6, 2008
Well, this will be an informative blog, without alot of real information. By that I mean, at this point, without any real bloodwork back, this is still a guessing game at best. But here's what we know so far:
Brad, Lacey & I met with the head of Genetics, Laynie's NICU pediatrician, and the junior geneticist that has been following Laynie since prior to her birth. Dr. M (as I will refer to him) is the head of genetics at Children's and he was pretty neat. He is super interested in our baby, and I get the feeling he is super invested as well. I know Julie, our junior geneticist is, and Dr. Payne has been wowed by her since Day 1. So they stripped her down, put a "pee bag" on her, deadened a little skin tag on the fatty part of her back arm, to take a skin biopsy, and proceeded to look her over head to toe. They measured every inch of her, weighed her (3 lbs 8 oz) THAt's One ounce gained! WOOHOO. and just were truly amazed. We talked about everything we had questions on..
Here's what we know for certain:
- her cheek swab taken at birth, showed no chromosonal abnormalities. -her cord blood, showed extra X and a smattering of 7's. -her placenta showed the 7 and 13's. Now, they haven't taken any blood from Laynie because she is simply too tiny-veined to get any. I find it highly interesting that her cheek swab is clear. She has proven everyone wrong from the beginning, and I'm not certain she won't continue to prove everyone, well into her 30's. They were concerned with her brain (as we all have been) about the fluid and lack of brain that they see. What they told us today was, yes, there is fluid, no, we don't know what it is, and yes, there may be a total small brain under that fluid. All of you that saw her head in the hospital knows how odd it was shaped, well, now it is just a head, a little bitty dinky head sitting on a little bitty dinky body. Yep, there is still loose skin, and yep, there are only about 15 1/2 inch black hairs on it, but it is MUCH improved. (Ketrick will tell you it is a miracle, I tend to agree with him). Now the kidneys, I'm guessing the stupid pee bag they put on her will give us that "Kreatin" (spelling?) level from her kidneys. But she filled the bag while she was there and if your kidneys weren't working, hello, I don't think there would be pee. Then her functioning. If the fluid on the brain were consistant with WHAT THEY THOUGHT, she would be paralyzed on one side. She works both arms up and down, rolls side to side (almost all the way over) and kicks those backward feet like a little mule. She can't roll up in her preemie onesie anymore, because she kicks her feet so much. That my friends, is a baby stretching and growing. She has loose joints, so she'll be able to put her leg behind her head (I always wanted to be able to do that). We see the orthopedic doctor on the 27th and I'm sure we'll do a bang load of xrays of those hips and legs and see what we'll be doing with them.
Meanwhile, the doctor took Lacey & Brad's blood to do a workup on it, and see if this is a one time deal, or an everytime deal. Here's an interesting twist. About April 18, a scorpion decided that it would be fun to get in bed with Brad and Lacey and ended up stinging both of them during the night. 5 weeks later, Laynie was conceived. Now, NOBODY knows anything for certain, but my brother is convinced though the neurotoxins from the scorpion only gave Brad and Lacey minor pain, the toxins from that sting reeked havoc on the baby being formed inside. Those incredibly important first few hours/days of blending and coming together, doing that with what neurotoxins were left from that sting. Sound crazy? Who knows? But it's still a lead, and if any of you ever get stung by a scorpion.....wait at least 8-12 weeks to get pregnant, just for caution's sake.
What a day. Laynie was awake for alot of her examination. She stays awake for good periods of time now and either talks (grunting) or just moves her arms and legs and kind of whistles. She is pretty awesome. We played pattycake and she wasn't too hip on it yet. Hey guess what, her real birthday is tomorrow! the 7th. She'll be born! :) Instead, she is 3 weeks old today! 3 weeks! 21 days...21 precious miraculous inspirational exhausting wonderful terrifying awesomely terrific days. She is God's baby, and she is a GIFT. She sucked on that pacifier until I thought the plastic was going to come off of it today. She has got that sucking down now. It's so funny, it's big as her face and she just loves it.
I don't know what we'll find from our testing, and at some point, she will have to have an MRI, but we aren't too worried about hurrying and sedating her for that. We know she is happy, she isn't in any distress, and is just a wonderful, lovely little peanut baby. It won't be long until she is out and about with her mommy. We almost aren't too nervous anymore........almost....
God is Good, oh so good, all the time.
Brad, Lacey & I met with the head of Genetics, Laynie's NICU pediatrician, and the junior geneticist that has been following Laynie since prior to her birth. Dr. M (as I will refer to him) is the head of genetics at Children's and he was pretty neat. He is super interested in our baby, and I get the feeling he is super invested as well. I know Julie, our junior geneticist is, and Dr. Payne has been wowed by her since Day 1. So they stripped her down, put a "pee bag" on her, deadened a little skin tag on the fatty part of her back arm, to take a skin biopsy, and proceeded to look her over head to toe. They measured every inch of her, weighed her (3 lbs 8 oz) THAt's One ounce gained! WOOHOO. and just were truly amazed. We talked about everything we had questions on..
Here's what we know for certain:
- her cheek swab taken at birth, showed no chromosonal abnormalities. -her cord blood, showed extra X and a smattering of 7's. -her placenta showed the 7 and 13's. Now, they haven't taken any blood from Laynie because she is simply too tiny-veined to get any. I find it highly interesting that her cheek swab is clear. She has proven everyone wrong from the beginning, and I'm not certain she won't continue to prove everyone, well into her 30's. They were concerned with her brain (as we all have been) about the fluid and lack of brain that they see. What they told us today was, yes, there is fluid, no, we don't know what it is, and yes, there may be a total small brain under that fluid. All of you that saw her head in the hospital knows how odd it was shaped, well, now it is just a head, a little bitty dinky head sitting on a little bitty dinky body. Yep, there is still loose skin, and yep, there are only about 15 1/2 inch black hairs on it, but it is MUCH improved. (Ketrick will tell you it is a miracle, I tend to agree with him). Now the kidneys, I'm guessing the stupid pee bag they put on her will give us that "Kreatin" (spelling?) level from her kidneys. But she filled the bag while she was there and if your kidneys weren't working, hello, I don't think there would be pee. Then her functioning. If the fluid on the brain were consistant with WHAT THEY THOUGHT, she would be paralyzed on one side. She works both arms up and down, rolls side to side (almost all the way over) and kicks those backward feet like a little mule. She can't roll up in her preemie onesie anymore, because she kicks her feet so much. That my friends, is a baby stretching and growing. She has loose joints, so she'll be able to put her leg behind her head (I always wanted to be able to do that). We see the orthopedic doctor on the 27th and I'm sure we'll do a bang load of xrays of those hips and legs and see what we'll be doing with them.
Meanwhile, the doctor took Lacey & Brad's blood to do a workup on it, and see if this is a one time deal, or an everytime deal. Here's an interesting twist. About April 18, a scorpion decided that it would be fun to get in bed with Brad and Lacey and ended up stinging both of them during the night. 5 weeks later, Laynie was conceived. Now, NOBODY knows anything for certain, but my brother is convinced though the neurotoxins from the scorpion only gave Brad and Lacey minor pain, the toxins from that sting reeked havoc on the baby being formed inside. Those incredibly important first few hours/days of blending and coming together, doing that with what neurotoxins were left from that sting. Sound crazy? Who knows? But it's still a lead, and if any of you ever get stung by a scorpion.....wait at least 8-12 weeks to get pregnant, just for caution's sake.
What a day. Laynie was awake for alot of her examination. She stays awake for good periods of time now and either talks (grunting) or just moves her arms and legs and kind of whistles. She is pretty awesome. We played pattycake and she wasn't too hip on it yet. Hey guess what, her real birthday is tomorrow! the 7th. She'll be born! :) Instead, she is 3 weeks old today! 3 weeks! 21 days...21 precious miraculous inspirational exhausting wonderful terrifying awesomely terrific days. She is God's baby, and she is a GIFT. She sucked on that pacifier until I thought the plastic was going to come off of it today. She has got that sucking down now. It's so funny, it's big as her face and she just loves it.
I don't know what we'll find from our testing, and at some point, she will have to have an MRI, but we aren't too worried about hurrying and sedating her for that. We know she is happy, she isn't in any distress, and is just a wonderful, lovely little peanut baby. It won't be long until she is out and about with her mommy. We almost aren't too nervous anymore........almost....
God is Good, oh so good, all the time.
Things I'm Learning 2-4-08
Things I’m Learning
You know, I like to think I'm in control most of the time. And this thing with Laynie, telling you, it's kicking my butt. I truly TOTALLY trust God with this. But at the same time, I want answers, and I want them now. Not tomorrow, or a week from now, but Now. The deal is.... we may never have answers with our sweetheart. Something weird and wrong happened during the meiosis, mitosis stage of her development. (Wow, did anyone REALLY listen to that stuff in school?) I wish I had listened more. I have been intently studying and studying all kinds of genetic things, and I think I have an answer, only to find out, DOOR SLAM in face. Those of you that know me well, know that doesn't do much for me. I want answers, and satisfaction and I WANT IT NOW.
What I'm learning, and trust me it is KILLING me, is there is alot of stuff out there, I get NO say over. NONE. No matter how many emails I send, no matter how hard I blog about it, no matter how much I pray.... no answers.
What I get in return....another day with Laynie. Another precious gift with our girl. I thought I had the answer. I thought she'd be fine. I thought that God figured out a way. I'm rambling and alot of you are going WHAHAHAHAHT?, but those of you that have listened to my ramblings know that I don't know ANYTHING, and we are back to square one. On Wednesday Laynie will go in with her mom and dad and do tests. That requires blood work, out of teeny miscroscopic veins. That just breaks this grandmas heart. Now take as much of Brad's blood as you want....but don't hurt my baby. And Lacey, she is a tough nut, she'll be ok. I watched her c-section a baby....that girl can do anything.
I want the impossible. I want the miracle. I want our girl to walk and play and dance and know how much love we all have for her. And I'm still not sure any of those things will be possible. But for today, we have her to love on, and ooh over. And that is an incredible gift.
This is forcing me to see that we don't have forever to get stuff figured out. We better have it figured out today, because tomorrow isn't a given. Tomorrow is a gift. And as in awe as I am of our girl, I'm more in awe of how much we all take for granted that tomorrow will just Happen. Everything will click right on.. maybe so.... but maybe not.
Can you tell I'm having a day? I know God loves me. And I know God has delivered our Layniebug. He delivered her. And he knows her plan, whether the rest of us do or not. And I'm loving every second we have we her, and don't think I'm not grateful, I'm just MAD today. What are those stupid stages of GRIEF? Maybe I'm finally out of denial and heading into ANGER. :) Whew, this roller coaster is killing me.
All I know is Laynie is here, she is in no pain, loves her mom, snores like a freight train, and I know with all my heart......God is Good.
Love you all. With tears, Lolly
You know, I like to think I'm in control most of the time. And this thing with Laynie, telling you, it's kicking my butt. I truly TOTALLY trust God with this. But at the same time, I want answers, and I want them now. Not tomorrow, or a week from now, but Now. The deal is.... we may never have answers with our sweetheart. Something weird and wrong happened during the meiosis, mitosis stage of her development. (Wow, did anyone REALLY listen to that stuff in school?) I wish I had listened more. I have been intently studying and studying all kinds of genetic things, and I think I have an answer, only to find out, DOOR SLAM in face. Those of you that know me well, know that doesn't do much for me. I want answers, and satisfaction and I WANT IT NOW.
What I'm learning, and trust me it is KILLING me, is there is alot of stuff out there, I get NO say over. NONE. No matter how many emails I send, no matter how hard I blog about it, no matter how much I pray.... no answers.
What I get in return....another day with Laynie. Another precious gift with our girl. I thought I had the answer. I thought she'd be fine. I thought that God figured out a way. I'm rambling and alot of you are going WHAHAHAHAHT?, but those of you that have listened to my ramblings know that I don't know ANYTHING, and we are back to square one. On Wednesday Laynie will go in with her mom and dad and do tests. That requires blood work, out of teeny miscroscopic veins. That just breaks this grandmas heart. Now take as much of Brad's blood as you want....but don't hurt my baby. And Lacey, she is a tough nut, she'll be ok. I watched her c-section a baby....that girl can do anything.
I want the impossible. I want the miracle. I want our girl to walk and play and dance and know how much love we all have for her. And I'm still not sure any of those things will be possible. But for today, we have her to love on, and ooh over. And that is an incredible gift.
This is forcing me to see that we don't have forever to get stuff figured out. We better have it figured out today, because tomorrow isn't a given. Tomorrow is a gift. And as in awe as I am of our girl, I'm more in awe of how much we all take for granted that tomorrow will just Happen. Everything will click right on.. maybe so.... but maybe not.
Can you tell I'm having a day? I know God loves me. And I know God has delivered our Layniebug. He delivered her. And he knows her plan, whether the rest of us do or not. And I'm loving every second we have we her, and don't think I'm not grateful, I'm just MAD today. What are those stupid stages of GRIEF? Maybe I'm finally out of denial and heading into ANGER. :) Whew, this roller coaster is killing me.
All I know is Laynie is here, she is in no pain, loves her mom, snores like a freight train, and I know with all my heart......God is Good.
Love you all. With tears, Lolly
Laynie Payne's SUper bowl Party- Feb 3, 2008
Miss Laynie came to visit her Pops & Lolly today, and watched the superbowl with all the gang. She and Lolly were rooting for the Patriots, but ole Eli Manning just dashed our hopes. :) What a precious angel. She is such a sweetheart, she was awake when she got there, and visited with us, grunting and mewing for awhile, then pooped, took her bottle and slept like a log, while everyone took turns holding her. What a trooper.
She thinks she weighs 8 pounds. And none of us are brave enough to tell her any different. I have to tell you, went to Target today and pretty much bought out the Preemie Pampers. Huggies are for chunky monkey babies, and Pampers are for Slim Jims. We have an Ultra Slim Jim. :)
Jimmie & Jessi couldn't believe how much she has changed. Her head is filling out, and the loose skin on the back of it is rounding out. Her face is filling out and even though she still has 4 chins, just precious as can be. She is still one teeny tiny smidgee, but she is mighty and she is LOUD. She got miffed at Lolly while I was burping her, and holy cow, she brought down the house. Uhm, who's the boss?? I'm guessing she is. All 3 lbs 7 oz of her. :)
Love that baby, and God is SOOOO good, all the time.
She thinks she weighs 8 pounds. And none of us are brave enough to tell her any different. I have to tell you, went to Target today and pretty much bought out the Preemie Pampers. Huggies are for chunky monkey babies, and Pampers are for Slim Jims. We have an Ultra Slim Jim. :)
Jimmie & Jessi couldn't believe how much she has changed. Her head is filling out, and the loose skin on the back of it is rounding out. Her face is filling out and even though she still has 4 chins, just precious as can be. She is still one teeny tiny smidgee, but she is mighty and she is LOUD. She got miffed at Lolly while I was burping her, and holy cow, she brought down the house. Uhm, who's the boss?? I'm guessing she is. All 3 lbs 7 oz of her. :)
Love that baby, and God is SOOOO good, all the time.
Laynie's 1st pediatrician visit- Jan 31, 2008
Our girl is doing great. She had a wonderful visit with her new pediatrician, Dr. Kelly Stephens. He was, I think, taken aback by her small size, as everyone who sees her first time, is. I have a theory on this, but I will wait to share it until things are confirmed. She is doing FABULOUS. She is eating like clockwork, up to over 1 oz per feeding, peeing, pooing, everything a newborn is supposed to be doing.
Our next visit will be to the pediatric orthopedic (who ironically enough, treated Lacey for her scoliosis!!!) because Dr. Stephens, though her backward feet are pretty nifty, thinks we should probably get them turned around.
Her weight is still an issue, but people, she is a smidge. Soooo, lolly says that all is well, life is good, mommy is doing better, every day she gets stronger, and now we are just protecting little stinker from any RSV, flu things.
You should have seen Lacey at the doctors office! It was classic. Most of you know she is a germa-phobe, first class and today was NO EXCEPTION. It is an ORDEAL to get that itty bitty baby into her big ole car seat, then wrap her up in 27 blankets to keep her warm (the only time we transport her outside it is always snowy & cold, go figure) then we have one of those big carseat condoms (that's what her daddy calls it) that fits over and keeps the baby snug inside, with the little peak hole in the middle, I had carried her in the doctors office and was sitting waiting for Lacey to check her in and this little girl came by and coughed and I just shut the peep hole. !!! Lacey weaved a protective bubble around her! It was great.
I have great hope for her future. I'm on to something right now, and it's too early to talk about it, but I will in the near future, when I make sure I'm not just barking up an oak tree. Gotta talk to a few more people and get some answers, but I know this. God has her plan, has had her plan from day 1, and she is doing FANTASTIC!
Keep praying, friends and family, keep praying for our precious angel and her mommy and daddy.
I've said it once, I'll say it 2 million times.....God is Good, All the time.
Our next visit will be to the pediatric orthopedic (who ironically enough, treated Lacey for her scoliosis!!!) because Dr. Stephens, though her backward feet are pretty nifty, thinks we should probably get them turned around.
Her weight is still an issue, but people, she is a smidge. Soooo, lolly says that all is well, life is good, mommy is doing better, every day she gets stronger, and now we are just protecting little stinker from any RSV, flu things.
You should have seen Lacey at the doctors office! It was classic. Most of you know she is a germa-phobe, first class and today was NO EXCEPTION. It is an ORDEAL to get that itty bitty baby into her big ole car seat, then wrap her up in 27 blankets to keep her warm (the only time we transport her outside it is always snowy & cold, go figure) then we have one of those big carseat condoms (that's what her daddy calls it) that fits over and keeps the baby snug inside, with the little peak hole in the middle, I had carried her in the doctors office and was sitting waiting for Lacey to check her in and this little girl came by and coughed and I just shut the peep hole. !!! Lacey weaved a protective bubble around her! It was great.
I have great hope for her future. I'm on to something right now, and it's too early to talk about it, but I will in the near future, when I make sure I'm not just barking up an oak tree. Gotta talk to a few more people and get some answers, but I know this. God has her plan, has had her plan from day 1, and she is doing FANTASTIC!
Keep praying, friends and family, keep praying for our precious angel and her mommy and daddy.
I've said it once, I'll say it 2 million times.....God is Good, All the time.
Home I go -- Jan 27, 2008
Here I am back in Norman. Funny how your body can be in one place and your heart so totally in another. It seems odd to be "getting back to normal routine", when in reality, "normal" will never be the same again. We have reached Laynie's first weekend home. She did just amazing. We have spoiled the little scamp rotton, and now she believes the ONLY way she can sleep is to be laying on someone and feel them breathe right along with her. I took the last 2 nights of night shift. Night shift consists of 3 feedings/diaper changes/ music listening and trying to find your glasses in order to read the teeny tiny bottles to see how much smidge is really intaking, and after feeding, tucking her into your robe and dozing beside her on the couch, in the chair, or wherever you can find a comfortable spot. The thing about smidge, she don't care, as long as she can feel your heartbeat. We finally read her discharge papers from the hospital yesterday. Small kidneys, microsomethingencephaly (small head), heart condition resolved, possible sepsis, parents/grandmother signed and understood DNR. We read all those things, and we look at our girl, and we see her managing on her own, actually sucking the entire 22-28 cc's (almost 1 oz) of formula by HERSELF (with very little help from us, just a nudge to keep her awake and on track) and filling a diaper with pee, I'm just wondering "where is that baby that wasn't supposed to live through the weekend?" I see a baby with a fierce, ferocious desire to live, and I am overcome with emotion. Lacey had her lying on her chest (laying, lying? I truly despised english) yesterday and the little smidge, raised her head totally up in the turtle wobbling position and looked her dead in the eyes. Hey mommy. Look at me. And we do, in total and complete amazement.
I sent the video link of the little boy with trisomy 18, who lived for 99 days in a bulletin, and everyone needs to watch that. 99 precious days he was given. The full time on oxygen and a feeding tube, things we don't even have to worry about with Laynie. There is a blessing. We had discussed using "Now I lay Me Down to Sleep", a photography organization that comes to your home and takes pics of the baby and mommy and daddy (stillborns and terminals)and imagine to our surprise and delight, a friend of Lacey's actually does that, and came yesterday and took the most incredibly beautiful pictures, (we got a sneak peek)- You know I'll share when I get them, probably the end of this week.
So I have to confess I shed some tears leaving my sweet Layniebug today. I so loved being in the constant day to day flow with her, but as Lacey has gotten stronger and stronger, she is far capable of giving Laynie everything she needs, though in my grandma's heart, I know Little smidge will miss me terribly. :)
I don't know what tomorrow holds for our family, but we know with sincere certainty, "With God all things are Possible", and we also know that.... God is soo good, all the time.
I sent the video link of the little boy with trisomy 18, who lived for 99 days in a bulletin, and everyone needs to watch that. 99 precious days he was given. The full time on oxygen and a feeding tube, things we don't even have to worry about with Laynie. There is a blessing. We had discussed using "Now I lay Me Down to Sleep", a photography organization that comes to your home and takes pics of the baby and mommy and daddy (stillborns and terminals)and imagine to our surprise and delight, a friend of Lacey's actually does that, and came yesterday and took the most incredibly beautiful pictures, (we got a sneak peek)- You know I'll share when I get them, probably the end of this week.
So I have to confess I shed some tears leaving my sweet Layniebug today. I so loved being in the constant day to day flow with her, but as Lacey has gotten stronger and stronger, she is far capable of giving Laynie everything she needs, though in my grandma's heart, I know Little smidge will miss me terribly. :)
I don't know what tomorrow holds for our family, but we know with sincere certainty, "With God all things are Possible", and we also know that.... God is soo good, all the time.
Laynie Payne - 1 week old Jan 24, 2008
What I meant in my last blog that "I am OLD", was those all-nighters just aren't near as fun now. You find yourself falling asleep at odd times, like sitting at the toilet, or fixing yourself something to drink at the fridge. But I rallied after I took a nap, and we discovered today that Smidge has her days and nights mixed up. Fun stuff.Well, we think we have it ALL figured out and what to expect, and then you know what? Don't think it for a minute. The genetic counselor called us today with the final results from the cord blood, placenta check and cheek swab, and guess what they found? Well, no trisomy 17 cells, that's for sure. ??!!???!!!!??? They did find extra X, 7 and 13 chromosomes in a mosaic frame, and guess what that means? We know less now, than we did with the 17 mosaic. !! She's totally unaware of the drama. She's doing everything a "normal" baby would be doing. We find victories in those "normal" things. She is even starting to suck vigorously for a smidge and keep after it for about 5 minutes. God is good.So what does this mean? Do we get to keep her? All the things that were issues, are still there. When she is still here in 2 weeks, we'll take her to her regular pediatrician and see what he says. One thing I do know for certain, is we ARE NOT in control. The doctors are NOT in control. (Though Lacey and Grammie think they for sure are, don't tell them they aren't) God knows this baby's plan. He has from the beginning. We have rest assured in that certainty, that whatever is in store for this precious gift, God has the plan. So on we go with the roller coaster, and Laynie blissfully unaware of anything awry. I like that. God is in control and God is good.
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Laynie Paynie- 1 week old
Well, I am OLD. Laynie has decided the best way to sleep is as close as possible to someone, so with her mom and dad pooped out last night, she bundled in her "baby burrito" blanket, and I tucked her in my robe, tied the sash up, lay down in the recliner and proceeded to have my "Grandma/baby honeymoon". It was fabulous. She worms around until she gets comfortable, she loves her hands where she can get to them, and she likes to feel you (your face, your hand, skin) on her. She slept amazing. She couldn't get comfortable after her 1:30 am feeding, and she grunted and mewed, so I just scooped her up out of her bed beside mom and had my honeymoon. Wow. Never EVER knew you could love so big.
I found her clothes yesterday at this sweet store in Northpark Mall. 2-3 lbs. XS. That's our girl. Little pants and top. We decided she looked like a ninja. It is soo great to have something that actually fits her. (even though the pants are alittle too long, it's "cool" to roll them up.) Got her a little gown too. We'll try that today. SHE LOVED HER BATH. She was all "It's about time people, I've been wanting one of these". And she smelled heavenly. All of us crammed in Lacey's bathroom with the radiant heater that Uncle Brian found us to warm that room up. Lacey with a camera, Brad watching, Hallie on the toilet filming and me trying to keep that eensy beensy baby warm and get her clean all at the same time. Fun stuff. All we needed was a smaller bathroom. :)
I am so amazed how well she is doing. She is thriving at home. I don't think any of the doctors thought she would make it this long, and she is showing them. Just like she did the whole time she was in mommy. She is a trooper and I have such wonderful pictures I took last night after her bath. She was WIDE AWAKE and we got some great shots. Of course, my camera is in Edmond and I am in Norman, so later on this afternoon I'll try to sneak down and load some so you guys can see them. The ones I attached, Jessi took last night. I love her baby burrito picture. And you can see her little outfit in the other one. Teensy teensy. Precious.
Well, if you can't tell, I'm in love. In total love with a 4 pound girl that grunts and mews. :) Keep praying people. I'm so torn in two over the fact that the longer we get to keep her, we grow more and more attached, yet, at the same time, so amazingly blessed to get her for this wonderful journey. She is an extraordinary little gal. She will have my heart for my whole life. God is Good, All the time.
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Laynie Paynie- 1 week old
Well, I am OLD. Laynie has decided the best way to sleep is as close as possible to someone, so with her mom and dad pooped out last night, she bundled in her "baby burrito" blanket, and I tucked her in my robe, tied the sash up, lay down in the recliner and proceeded to have my "Grandma/baby honeymoon". It was fabulous. She worms around until she gets comfortable, she loves her hands where she can get to them, and she likes to feel you (your face, your hand, skin) on her. She slept amazing. She couldn't get comfortable after her 1:30 am feeding, and she grunted and mewed, so I just scooped her up out of her bed beside mom and had my honeymoon. Wow. Never EVER knew you could love so big.
I found her clothes yesterday at this sweet store in Northpark Mall. 2-3 lbs. XS. That's our girl. Little pants and top. We decided she looked like a ninja. It is soo great to have something that actually fits her. (even though the pants are alittle too long, it's "cool" to roll them up.) Got her a little gown too. We'll try that today. SHE LOVED HER BATH. She was all "It's about time people, I've been wanting one of these". And she smelled heavenly. All of us crammed in Lacey's bathroom with the radiant heater that Uncle Brian found us to warm that room up. Lacey with a camera, Brad watching, Hallie on the toilet filming and me trying to keep that eensy beensy baby warm and get her clean all at the same time. Fun stuff. All we needed was a smaller bathroom. :)
I am so amazed how well she is doing. She is thriving at home. I don't think any of the doctors thought she would make it this long, and she is showing them. Just like she did the whole time she was in mommy. She is a trooper and I have such wonderful pictures I took last night after her bath. She was WIDE AWAKE and we got some great shots. Of course, my camera is in Edmond and I am in Norman, so later on this afternoon I'll try to sneak down and load some so you guys can see them. The ones I attached, Jessi took last night. I love her baby burrito picture. And you can see her little outfit in the other one. Teensy teensy. Precious.
Well, if you can't tell, I'm in love. In total love with a 4 pound girl that grunts and mews. :) Keep praying people. I'm so torn in two over the fact that the longer we get to keep her, we grow more and more attached, yet, at the same time, so amazingly blessed to get her for this wonderful journey. She is an extraordinary little gal. She will have my heart for my whole life. God is Good, All the time.
Home at Last -- Jan 22, 2008
First of all let me tell you how therapeutic it is for me to type. While mommy and daddy are loving their girl, I'm down at the clubhouse, typing on the 'puter. I hear how much all of you love to hear the updates and what is going on, so who am I to let you down on our day to day journey??We brought our girl home today. We were going to get to go home "early", so we were there with bells on at 8:00 am. Well, at 3:00 pm our exhuberance was waning. :) We had the most incredible nurse today, whom I lovingly dubbed "Nurse Ratchett". She BOSSED me and grammie. Can you even believe it? And we listened to her pronto! :) She made sure that we knew how to feed Laynie and told us exactly how long and how much and not to wear her out, etc. And everything she told us worked. After watching Lacey feed her at 11, she pulled a chair up to her, and looked deep in her eyes and said "Lacey, you are an amazing mommy. You learned how to do that in one try. It took me ages to figure out how to feed a weak baby, and you did it the first try. Lacey, I want you to remember something. When Laynie stops eating, it won't be because you didn't know how to feed her. It won't be anything you did, because you are amazing." I wanted to kiss that bossy old bat right on the smackers. I'm sitting here with tears streaming down my face, because at some point, Lacey will remember that bossy old nurse telling her that, and she will take comfort in it. BUT FOR TODAY, she is doing fantastic. Now that we know that she just flat wears out when she nurses, we do it for her. Her job is to latch on the nipple. We then massage her jaw for her and help her suck. We alternate her jaw and cheek and let her swallow. She is a two man operation. When she just poops out we wait a minute and tap the end where a drop will fall in her mouth and she opens her eyes and says "Hey, DINNERTIME", and off we go again. Imagine a victory for us is 26 cc's in 30 minutes. (that less than 1/2 oz.) That is climbing the mountain. I'm telling you people, we see beauty in the smallest things. Life is different now. A yawn, a smile, a sneeze. Amazing things. Grammie really held her today and got to "nuss" her, and the tears came today. There are few people that can hold her that aren't moved to tears. She is that incredible.The neurologist head came by today (our girl is a celebrity, I am telling you) and told us that if she makes it through the next few weeks, we might want to do the MRI. We aren't really willing to do that right now, the last thing we want to do is sedate her. Besides, we know all we need. The opthomologist head came by and looked in her eyes. She isn't blind. She has very small retinas and very small corneas and the optic nerve is small, but they just match all the other small things inside of her. Speaking of small, I went to Walmart tonight and looked for preemie things and those preemie things still are HUGE compared to what we need. I will take a picture of her in her preemie onesie tomorrow and post it, so you can see how teensy tiny she really is. I bought cabbage patch clothes. They are stupid, :), but I thought, Hey, what the heck? It made Lacey laugh out loud, which is what I wanted it to do. "For dolls 12-14 inches long". That's what she is. I have NO IDEA where they came up with 18". Unless they stretched out her arms. That girl has some arms now. Just like her lolly. :) Oh how we serve an awesome God. "He gives and takes away", has been on my heart all day today. Sometimes prayer changes things, especially in the people saying those prayers. We have been so ultra blessed today. We brought our girl home. We propped her up on a rolled up blanket to make her tall enough to get the straps on her. She had 2 receiving blankets holding her sides and had a blanket under the buckle to give it enough bulk to hold her in. Pretty great stuff. God smiled at our effort. Nurse Ratchett knew just what to do. She cried alittle and handed her over. I'm telling you... Laynie touches everyone who sees her. When our precious time is over, what wonderful incredible memories we will have. Thanks so much for all your prayers. Never stop praying, we've all learned how to pray constantly the last few months, let's never stop. Laynie would want us to never stop. Because.....
God is Good.. all the time.
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| Learning how to Feed Smidge |
Going Home Tomorrow- Jan 21, 2008
Imagine a baby so small that a preemie onesie fits her like a gown. That's our Laynie Bug.
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Going home TOMORROW
Well, we get to break smidge out...tomorrow. Hospice will come in in the morning and give us the skinny on how to care for her at home, and then be by with praise and encouragement.
I want to talk about victories. Brad is doing so much better. The surgery seemed to do its thing (with the help of oxycotin sp?) and he is around and mobile, though alittle slowly and alittle stooped. Which is a big victory from this time last week. Lacey is amazing. After actually SEEING a c-section first hand (gasp) I don't know how she is even moving, much less doing so terrific. We stayed with Laynie until 3 pm yesterday afternoon and I took Lacey home. She seemed to be doing great, and she had some lifegroup friends coming, so I skidaddled back to the hospital (big surprise) to spend time with Dinky and Auntie Kip. I had planned on staying home last night, but about 30 minutes after arrival at the hospital, Lacey called in her SOS. The "breast pump sucked, the baby wasn't there".....all too much for my heartsick mommy. So her girls rallied her, brought her to the hospital with Brad and they stayed with the baby together for the first time in a while. The NICU nurse rustled up a breast pump (which they refer to as a "Jaguar" in the pump world) and told Lacey we could rent one with the help of Lactation services today. (which they helped us today, and the people at the rental place were so moved by Laynie's story, we have it "no charge, as long as you need it") so there's a blessing. The nurses in the NICU are amazing. They teach us, they encourage us, they love our baby. Just speechless of their goodness. Jordyn, our night nurse last night, knew Lacey hadn't had much "Mommy/Laynie time" and when Brad and I were roaming the halls, (he can't sit for long period of times) she got the recliner for Lacey and had her remove her shirt, stripped Laynie Paynie to her diaper and let them have "skin to skin" with warmed blankets, good tuck in and total privacy. Lacey told me it is the first time she has felt like a mommy. It brought tears to my eyes last night and it brings tears to my eyes today as I think about it again. After we talked to the neonatologist department head this morning (this little girl gets ALL the good stuff) we found out her kreatin (sorry for my spelling) level of her kidneys was getting really high yesterday and after her mommy bonding last night it was back down in the "not so grim" range. Tiny babies respond to skin to skin. It is amazing.
I thought it was hard to type at the hospital. I have to tell you home with Hallie after being away from her for 4 days is worse than any interruptions at the hospital. So if the flow of this isn't quite right. Hello, Hallie.
Once we get home tomorrow, it will be hard for me to blog. The only computer that has internet is down at the clubhouse, and truly I don't think I'll be able to get that far from Laynie Paynie. So, I guess until we know no more, this will be my last blog. I have endless thanks for gobs of people, but I will wait for those til another day. Those of you that need to know things, call my cell. 405-250-9264. Those of you that need to see that girl, we'll be taking appointments for Wed.
We're so blessed for this time. We're so blessed with our friends and family. Pray for Lacey and Brad to stay strong and to have God keep them firmly in His hands through the rest of our journey. Because God is good, all the time.
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Going home TOMORROW
Well, we get to break smidge out...tomorrow. Hospice will come in in the morning and give us the skinny on how to care for her at home, and then be by with praise and encouragement.
I want to talk about victories. Brad is doing so much better. The surgery seemed to do its thing (with the help of oxycotin sp?) and he is around and mobile, though alittle slowly and alittle stooped. Which is a big victory from this time last week. Lacey is amazing. After actually SEEING a c-section first hand (gasp) I don't know how she is even moving, much less doing so terrific. We stayed with Laynie until 3 pm yesterday afternoon and I took Lacey home. She seemed to be doing great, and she had some lifegroup friends coming, so I skidaddled back to the hospital (big surprise) to spend time with Dinky and Auntie Kip. I had planned on staying home last night, but about 30 minutes after arrival at the hospital, Lacey called in her SOS. The "breast pump sucked, the baby wasn't there".....all too much for my heartsick mommy. So her girls rallied her, brought her to the hospital with Brad and they stayed with the baby together for the first time in a while. The NICU nurse rustled up a breast pump (which they refer to as a "Jaguar" in the pump world) and told Lacey we could rent one with the help of Lactation services today. (which they helped us today, and the people at the rental place were so moved by Laynie's story, we have it "no charge, as long as you need it") so there's a blessing. The nurses in the NICU are amazing. They teach us, they encourage us, they love our baby. Just speechless of their goodness. Jordyn, our night nurse last night, knew Lacey hadn't had much "Mommy/Laynie time" and when Brad and I were roaming the halls, (he can't sit for long period of times) she got the recliner for Lacey and had her remove her shirt, stripped Laynie Paynie to her diaper and let them have "skin to skin" with warmed blankets, good tuck in and total privacy. Lacey told me it is the first time she has felt like a mommy. It brought tears to my eyes last night and it brings tears to my eyes today as I think about it again. After we talked to the neonatologist department head this morning (this little girl gets ALL the good stuff) we found out her kreatin (sorry for my spelling) level of her kidneys was getting really high yesterday and after her mommy bonding last night it was back down in the "not so grim" range. Tiny babies respond to skin to skin. It is amazing.
I thought it was hard to type at the hospital. I have to tell you home with Hallie after being away from her for 4 days is worse than any interruptions at the hospital. So if the flow of this isn't quite right. Hello, Hallie.
Once we get home tomorrow, it will be hard for me to blog. The only computer that has internet is down at the clubhouse, and truly I don't think I'll be able to get that far from Laynie Paynie. So, I guess until we know no more, this will be my last blog. I have endless thanks for gobs of people, but I will wait for those til another day. Those of you that need to know things, call my cell. 405-250-9264. Those of you that need to see that girl, we'll be taking appointments for Wed.
We're so blessed for this time. We're so blessed with our friends and family. Pray for Lacey and Brad to stay strong and to have God keep them firmly in His hands through the rest of our journey. Because God is good, all the time.
We won't know til we know...now we know....1-18-08
Good morning friends and family- It's Saturday morning and the sun is shining and Lacey's room is filled with beautiful flowers and smells. Thanks to all of you that sent the beautiful flowers, and those of you who sent snacky foods....uhm, you know ME well.
I have news today. The head of neonatology came to see Lacey yesterday and answered all of her questions. Finally. Laynie is a miracle. Wrap your mind around the fact that out of all the millions of babies born, she is 24. Her pediatrician called her that yesterday. 24. And while in our hope of being able to have her forever, Lacey & I lost sight of the fact that she is indeed, as her Aunt Hallie calls her "Special".
Let's start with Smidge's feet. She was pushed in one position due to the fact of the low fluid, if it were just her feet, we'd have zero problems. Her kidneys are very small, and even though she is using them now, they will not sustain her. She is already secreting kreatin or kreaton (whatever kidneys secrete) in her urine, so they are trying, but they are tiny. And her heart, her aortic valve is small. All of these things can be corrected with surgery. Surgery we aren't going to consider, because of what we have found in her sweet tiny head. Where they saw the fluid in the ultrasounds and the MRI, my sweet friends, that is what it is, fluid. Our sweet angel has brain tissue in the front of her brain and fluid in the back, which affects her eyesight. So though I believe with all my heart she can hear me, she can't see me.
The neonatologist was precious. She told Lacey she believed that Laynie would indeed go home, and that we could care for her until Jesus calls her home. She won't be in pain, she'll just go to sleep. But we aren't dwelling on that. We are so anticipating taking her home, and giving her a bath to make her feel like the princess she is. Lacey says we are going to "put her in her boppy seat and just stare at her". (I think I'll do more than that. :)
This email has been so in spurts for me, the phone rings, visitors come in with food and love, nurses come in and out to check on Lacey, so I haven't been able to type with my usual flow about how much all of this means to me. I'm attaching the story of "Holland" again for those of you who didn't share this with me in the beginning of the journey. I've added so many friends to this list as we've gone, and I've felt your prayers and your love the whole way.
Let me tell you about how I feel about Holland. In Holland, you arrive, you THINK you're ready, and then you find you probably still aren't. You learn to rely on friends, and family that love you, and you find out the amazing power of love and how much you can really bear in life. In Holland, little tiny steps are massive incredible victories. 12 cc's = 1 million miles , tiny streams of pee are monumental as beautiful face of mountains. In Holland, you learn to live minute by minute and joy in the fact you are given that minute. There is no planning ahead and thinking about what you are going to be doing tomorrow or the next day.. it's being thankful for the moment you're in and blessed by the next one. I'm certain with all my heart, when our time for Italy is here, we will rejoice and be glad in it, but I know one thing with certain unwavering love and peace, my time in Holland will never be forgotten and I will always cherish the time I was there.
God is good, all the time.
Holland
Welcome to Holland
By Emily Pearl Kingsley
I am often asked to describe the experience of raising a child with a disability. When you're going to have a baby, it's like planning a fabulous vacation trip to Italy . You buy a bunch of guidebooks and make wonderful plans – the Coliseum, the Michelangelo David, the gondolas in Venice . You may learn some handy phrases in Italian. All very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later the plan lands. The flight attendant comes in and says, "Welcome to Holland ." " Holland ?" you say. "What do you mean Holland ? I signed up for Italy . All my life I've dreamed of going to Italy ." But there has been a change in the flight plan. They've landed in Holland there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place. So you must go out and buy new guidebooks and you must learn a whole new language. And, you will meet a whole new group of people you would have never met.
It's just a different place. It's slower paced than Italy , less flashy than Italy . But after you've been there awhile and you catch your breath, you look around and you begin to notice that Holland has windmills, Holland has tulips, Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say…"Yes, that's where I was supposed to go. That's what I had planned."
But if you spend the rest of your life mourning the fact you didn't get to Italy , you may never be free to enjoy the very special, the very lovely things about Holland
Laynie Hope Payne 1-16-08
Good evening from the Children's hospital room 5148. Well, I'm here to tell you C-sections aren't the fun neat easy things people think. HELLO. Lots of blood and pushing and pulling.. eeeuuuhhhh. But you know what the best part of it is? At the end of that tugging and pulling comes out a sweet little baby. Our angel arrived at 8:11 am this morning with an outraged mewing (best way I can describe it) and weighing in at a 4 lb 2 oz, 18 inches long. I would love to say she is perfect, and in God's sight , she is, but our sweet trooper Smidge is going to face some challenges. We don't know any true readings yet, so I'm not going to elaborate, but here's what we do know... Her head is a little small (not new news) she is as bald as a cue ball, looks like she has survived chemo and her feet are backward. We have heard murmurings of "club feet" but have not yet had a diagnosis of such. They are truly backward, her daddy told her we'd have to buy her some "backward" hunting shoes :), but other people (her nurses) have told us due to the low fluid that she didn't have the movement to teach those muscles, so for now, I'm going with that.
She started out with an equivalent of a C-Pap (sleep apnea machine) , but she was only on it til early afternoon and has been on her own breathing since then. She is such a good trooper, she is Lolly's angel. They have done an EKG, an ultrasound of her brain and kidneys, and another ultrasound of her feeding tube they inserted into her umbilical cord. She sucks her fingers, has great reflex to my touch and moves her head to my voice. I love this little lady, she is my angel.
Keep praying my friends, "She is wonderfully and fearfully made". Thanks for your continued prayers.. Lolly
Laynie Hope- 1-18-08
Well , First let's talk good news. Lacey is doing fabulous. She is mobile and
moving great this morning. She wanted to take a shower and she did that ALL By herself. She is alittle cracked up over the fact that her modesty has fled out the window during this deal. We all told her, but she didn't believe us. Guess what? A new member in the believer club. :) Next, Brad had his surgery last night and he is out this morning (already) and when we talked to him earlier, he was in search of food. So that leads me to believe he is feeling better as well. He has lost alot of weight. Lacey is a bit jealous.
Now let's talk about smidge. With the removal of the tubes and the hat and the mask and all the things they had on her sweet body, we see the Trisomy gene in her features. She has a very small head. Of course she has a very small body, but her head is much smaller than her body. We knew this at 24 weeks, but to see it in person, we understand what they mean now. She has a wonderful sucking reflex. She can chew on a pacifier as big as her face. She's happier when she is on her side and can find her fingers, though. With the small head (which I will tell you is as bald as a cue ball, though she will cry when i talk about it to visitors I take to see her) leads us to believe the fluid they saw on the brain, is indeed that. Fluid. But under the fluid, still unclear. She has alot of loose skin on the back of her head (reminds me of an old grandpa) and really no clear neck. But let me tell you something else about this little lady. She loves her Lolly. When I sing to her, sing turns her head and moves her arms as if to "Louder, lolly, it makes me happy" and even typing this I have tears in my eyes, because I am amazed at her. She has overcome everyone's expectations and has been breathing on her own since about hour 6. They have run tests on her that we have no results for as of yet. With those results I hope we get answers -of course, with this RARE thing we are dealing with, no one really knows. All we know is she is in no pain, she has good patterns of waking and sleeping, and is breathing on her own. Her blood pressure raises when I am with her, so I know she is aware of me. :) Wishful grandma thinking. She is an angel. I sent pics yesterday, but I haven't got a new one because I don't think of taking pictures. Jessi took some yesterday and I'll try to get her to forward some to all on this. Outside of the trisomy features.. you can sure see Brad in her. So she is a looker. :)
You know, I didn't know how important feet are when you are changing diapers. :) I got the priviledge of changing her diaper a couple of times, and I've been initiated into the pee club. The nurse warned me "She likes fresh air", but I didn't grasp the FULL understanding of that until she peed all over me. :) But I got to pick her up while they changed her bed, so it worked out. :) Wow, she is small, Wow she is mighty.
All I know sweet friends, is God is Good. My number one prayer for my daughter was to be able to hold and love her girl. And He has granted that. My amazing daughter shared with me yesterday that she had her time with Laynie. All the showers, the juice drinking, she had her all to herself for 9 months. "Now it's your time, mom, Your and Brad's and everyone elses." Selfless. I am so greatful for this precious time. Every day with our angel is a gift.
moving great this morning. She wanted to take a shower and she did that ALL By herself. She is alittle cracked up over the fact that her modesty has fled out the window during this deal. We all told her, but she didn't believe us. Guess what? A new member in the believer club. :) Next, Brad had his surgery last night and he is out this morning (already) and when we talked to him earlier, he was in search of food. So that leads me to believe he is feeling better as well. He has lost alot of weight. Lacey is a bit jealous.
Now let's talk about smidge. With the removal of the tubes and the hat and the mask and all the things they had on her sweet body, we see the Trisomy gene in her features. She has a very small head. Of course she has a very small body, but her head is much smaller than her body. We knew this at 24 weeks, but to see it in person, we understand what they mean now. She has a wonderful sucking reflex. She can chew on a pacifier as big as her face. She's happier when she is on her side and can find her fingers, though. With the small head (which I will tell you is as bald as a cue ball, though she will cry when i talk about it to visitors I take to see her) leads us to believe the fluid they saw on the brain, is indeed that. Fluid. But under the fluid, still unclear. She has alot of loose skin on the back of her head (reminds me of an old grandpa) and really no clear neck. But let me tell you something else about this little lady. She loves her Lolly. When I sing to her, sing turns her head and moves her arms as if to "Louder, lolly, it makes me happy" and even typing this I have tears in my eyes, because I am amazed at her. She has overcome everyone's expectations and has been breathing on her own since about hour 6. They have run tests on her that we have no results for as of yet. With those results I hope we get answers -of course, with this RARE thing we are dealing with, no one really knows. All we know is she is in no pain, she has good patterns of waking and sleeping, and is breathing on her own. Her blood pressure raises when I am with her, so I know she is aware of me. :) Wishful grandma thinking. She is an angel. I sent pics yesterday, but I haven't got a new one because I don't think of taking pictures. Jessi took some yesterday and I'll try to get her to forward some to all on this. Outside of the trisomy features.. you can sure see Brad in her. So she is a looker. :)
You know, I didn't know how important feet are when you are changing diapers. :) I got the priviledge of changing her diaper a couple of times, and I've been initiated into the pee club. The nurse warned me "She likes fresh air", but I didn't grasp the FULL understanding of that until she peed all over me. :) But I got to pick her up while they changed her bed, so it worked out. :) Wow, she is small, Wow she is mighty.
All I know sweet friends, is God is Good. My number one prayer for my daughter was to be able to hold and love her girl. And He has granted that. My amazing daughter shared with me yesterday that she had her time with Laynie. All the showers, the juice drinking, she had her all to herself for 9 months. "Now it's your time, mom, Your and Brad's and everyone elses." Selfless. I am so greatful for this precious time. Every day with our angel is a gift.
Just when you thought you could catch a breath..1-14-08
Well sports fans, here's what's up. As everyone knows, Brad has a ruptured disc in his lower back. It has been just about to kill him. On Friday he got an injection that seemed for a few days, to help. Well, it's Monday night, and he worked today, and we are back worse off than when we started. Sooooo...here's the game plan, for those of you on Lacey/Laynie watch.... Tomorrow.. which is Tuesday, Lacey is going to tote Brad to his surgeon and insist on the surgery...for Thursday morning. We'll wheelchair him in to watch Laynie come into the world on Wed morning, then after we get her solid clean bill of health, he'll go home to their apartment with his mom and dad ... I'll be staying with Lacey at the hospital on Wed, Wed evening, Thurs, Thurs eve, you get the drift. I know I'll have big help during the day (Lacy is coming from California, and between Jimmie & Jessi & grammie there will be peeps around) so I can work some on Thurs and Friday day. I imagine we'll go home on Saturday, depending on Laynie's health. I'm hoping to have Brad 2 days post-op, by that time. His surgery is an out-patient deal, and from what I understand, he should have immediate relief from the nerve pain. Incisional pain should be far more tolerable than Nerve pain. Wow, pray for these kids. One thing I know for certain, Lacey isn't too worried about her deal right now, her concern is paramount for Brad. So I'm going to be on super hyper nurse alert. I'm such a great nurse. As long as there is no vomiting involved, I'm in. I'm a sympathy hurler and ooh, can't do dat.
One more day, and we'll know. I have a peace that passeth understanding, and that is a wonderful thing. Keep praying friends.. pray for healing on my precious little family. Thanks for your encouragement and prayers.... God is Good, all the time.........
One more day, and we'll know. I have a peace that passeth understanding, and that is a wonderful thing. Keep praying friends.. pray for healing on my precious little family. Thanks for your encouragement and prayers.... God is Good, all the time.........
1/10/08 6 more days!
Well, I thought that Lacey and I had experienced the LONGEST waiting time in the history of the planet a few weeks ago, but it seems now, I was wrong. SO wrong. We saw her "regular" OB/Gyn doctor first, and after a "Check", she was declared, well, how can I put this?.... uhm, no where near ready to attempt to deliver the "old fashioned way". Dr. G suggested she come in on Tuesday night and they could do all the tricks to try to get her started, but she would be in for a LONG haul, and after about a 2 second deliberation, Lacey declared "nope, c-section, let's get her here, with little or no stress". That's my super mommy, always thinking of that baby doll. So, 7:30 am on Wednesday the 16th, we are in for the c-section. And guess what? Ole Lolly gets to be in there with them. Of course, NO WHERE near the incision sight or I'll be a puddle in the middle of the floor everyone will have to walk around, but I'll be there for her entrance. I am OVERJOYED, and a little nauseous, all at the same time. hee hee. But I'm up for it. Oh Yeah. Ok, that was the easy part of the day. The not so easy part was the wait for the somethin' somethin' profile that we do at her ultrasound. There were people (PREGNANT people) and not to mention UNHAPPY pregnant people EVERYWHERE. We waited and waited and waited, read the same magazine 3 or 4 times, a lot slower each time....and contemplated, seriously laying in the tent we had eyed a few times before and just chilling. There was this couple that was soooo gross to me, looked to me like they were trying to get pregnant again, right there in front of ALL OF US, and that made me like want to yell things like "ARE YOU KIDDING?" and "GET A ROOM", or at least "GET IN THE TENT". holy smokes. There was no doubt WHY she was pregnant, because wow. Lacey will tell you. SO, first off we sit down kinda by them, I think I was staring with my mouth hanging open, because Lacey made me move, because she KNEW I wouldn't be able to not say anything. Eeewwwhhhh. Blek. OK....I'm getting off track, but WOW, the things people do.... So at 5:30, we finally GO back to the room. (her appt was 3:15), the girl that hasn't ever seen us before starts the ultrasound, with the usual gasps and WHAT? things that happen with the people that don't know Laynie and her journey. Lacey calmly tells her that her fluid level is and always has been very non-existant (have to tell you, she was up to 5 today, woohoo) and that she is a smidgin. Dr. Richardson (our high risk OB) whistles in and sees us and says "Wait, I want to spend time with you guys, so let me do this" and walks out and waits on ANOTHER patient, as we wait and wait... you know the drill. He walks in at 6:00, or so, and says "SO can you believe she'll be here Wed?" big ole smile. I like that guy. He said she was doing fantastic. Her lungs, her heart, everything just terrific. He even guestimated her weight to be around 6 pounds (which is right where Lolly said she'd be). He tried to talk Lacey into a vaginal birth (for later children) and she solidly cut him off and said "Uhm, no." Alot of this courage came from a great email from my cousin Brenda, who has had 3 c-sections and done pretty terrific. That email sure was a wonder, as alot of our blessings from this journey have been. You have to understand that this cousin IS NOT an email type of girl, and that was a LOVE note from her, cause she doesn't spend alot of time at this ole computer, like some of us folk (me especially) .......... Anyway, as you can tell by my rambling, I am TIRED and toast. BUT ELATED at the prospect of getting to be there and 6 days away! Everyone keep praying for a wonderful outcome, and pray especially for Brad, who has a bulging disc in his lower back and a torn disc that is pushing on a nerve (he got his MRI back), and they go to see a Neurosurgeon tomorrow morning to see if they can get him some relief from the pain that never stops for him. WHAT A PAIR! 8 1/2 months pg and Grandpa back. Wow. Pray for them, they are going through some stuff right now!
Thank you friends, thank you family, thank you loved ones... what a journey we have been through. Your prayers have saved us, and made such a difference for our girl. On our myspace today, Our daily bible verse was Psalms 139, which I thought was the most perfect thing "She is fearfully and wonderfully made" ... which has been Lacey & my mantra for many many months. She is God's miracle and we are all so blessed by His grace and mercy. God is Good, all the time.
Thank you friends, thank you family, thank you loved ones... what a journey we have been through. Your prayers have saved us, and made such a difference for our girl. On our myspace today, Our daily bible verse was Psalms 139, which I thought was the most perfect thing "She is fearfully and wonderfully made" ... which has been Lacey & my mantra for many many months. She is God's miracle and we are all so blessed by His grace and mercy. God is Good, all the time.
Laynie Update 1/4/08
Well, 12 days and Smidge will be here! Today at the ultrasound, her fluid is still a precious 2, and the doctor and Lacey and Grammie enjoyed watching her breathe in, breathe out, breathe in, breathe out, and that little heart just beat..beat..beat..beatin away. The sweet sweet doctor said our trooper is an 8 on a scale from 0-10 on her somethin somethin profile (wow, I'm good at terms) and that she is doing just wonderful. (Lolly knows that already) Lacey had a Non-stress test yesterday and Laynie passed with flying colors. Lots of movement, lots of good strong heartsounds. All good. Our only cloud in the sky, is the fear that goes along with low fluid. The chance that she could roll on her cord and shut off her mommy supply. The doctor said "she's at risk", which Lacey looked him square in the eye and said "Hasn't she been that way since day 1?".... which gave him a moment's pause, before he answered her "Sure has". I believe she is staying small to prevent any damage (besides she AIN"T that small no more) I bet our smidgey will weigh 6 pounds. Any body want to start a pool? We are ALMOST there. I will be blogging about this pregnancy only a few more times, then we'll be off on a wonderful grandma bragging tangent.
I just want to talk to you about Lacey right now. I stand in awe and amazement at her strength. She could be going INSANE with worry right now. Imagine yourself in the position she is in, just for one second. The unknown, the constant nagging worry, am I doing the right thing?, is she moving enough? Holy stinkin cow. Normal pregnancy at 9 months is bad enough, couple that with the worry. But here is Lacey...... sooo amazingly strong in her belief and faith. Faith that God is in control, faith that God will see us through, faith that God has Laynie right in the palm of His lovely father hand and is guiding her precious little body through this storm. She is totally unaware of our worries, she is one solid trooper. She is God's precious gift to us, and everyday for the rest of my life, I will NEVER forget our journey. God is good...... ALL the time.
I just want to talk to you about Lacey right now. I stand in awe and amazement at her strength. She could be going INSANE with worry right now. Imagine yourself in the position she is in, just for one second. The unknown, the constant nagging worry, am I doing the right thing?, is she moving enough? Holy stinkin cow. Normal pregnancy at 9 months is bad enough, couple that with the worry. But here is Lacey...... sooo amazingly strong in her belief and faith. Faith that God is in control, faith that God will see us through, faith that God has Laynie right in the palm of His lovely father hand and is guiding her precious little body through this storm. She is totally unaware of our worries, she is one solid trooper. She is God's precious gift to us, and everyday for the rest of my life, I will NEVER forget our journey. God is good...... ALL the time.
Doctor's Trip 12-28-07
Well, after Lacey being sooooo sick with the stomach flu (vomiting and diarrhea yesterday) she made it to the regular doctor today, and we did yet another stress test. All I have to say is Laynie is completely clueless of the drama around her. She is just in there chillin' and having a big time. Her heart rate is excellent and the doc says she looks terrific. They are still adament about delivering her at 37 weeks (not one day before, not one day after) and that puts the delivery date of January 16. Sounds like a great day for a birthday, doesn't it? My Memaw's birthday was the 11th, so I like it. We went ahead and scheduled for a C-section, though they will check Lacey on the 11th and see if she is dilated at all, and if she is, they will attempt to have her vaginally. We didn't check the fluid level (no ultrasound people working, what is this vacation week?) so as long as the baby is in NO distress, on we go. She'll go in next Thursday to meet with her regular doctor and then Friday for an ultrasound. Wheeee.
I pray that Lacey gets some rest and has peace these last few weeks. The doctor won't let her work (NO STRESS FOR MOMMY!), and those of you that know Lacey, know that they might as well hog tied her. She is sooo worried something won't get done, or something will go wrong if she isn't there to worry and monitor. So pray for her peace, and calm to face the weeks ahead. So far, so good friends and family- Keep on prayin' and ask for God's guidance for the doctor's. and for continued peace for the family! Thank you friends, God is Good all the time.
I pray that Lacey gets some rest and has peace these last few weeks. The doctor won't let her work (NO STRESS FOR MOMMY!), and those of you that know Lacey, know that they might as well hog tied her. She is sooo worried something won't get done, or something will go wrong if she isn't there to worry and monitor. So pray for her peace, and calm to face the weeks ahead. So far, so good friends and family- Keep on prayin' and ask for God's guidance for the doctor's. and for continued peace for the family! Thank you friends, God is Good all the time.
Ultrasound 12-21-07
Well, Lolly missed the excitement today. Lacey went in at noon to do a "quick" ultrasound to check Smidge out, and when I got out of my meeting in Dallas at 3:00, they were still there. Never good. To stay at a doctor's office for hours. Anyway, our mighty amniotic sac is down to a shocking 2.5 (normal 15), Laynie has had always above 4, never above 7-9, but now that she is 4 lbs +, her fluid is getting VERY low. The doc did a stress test on the baby, and she has NO idea she is in a tight spot, she tested fine. Now, Lacey's stress....hmmm... Lolly's stress....hmmmm.... Don't check us right now. :) Anyway, they gave Lacey a steroid shot today to help Smidge's lung development (Lacey is 33 weeks) and sent one home with her for grammie to give her tomorrow (Sat). With Christmas looming, of course, everything is closed all next week. The doc called around and we'll do another look next Friday, with another stress test, and if her fluid is any lower, I think we'll have us a New Year's baby. Of course, they want to cook her as long as possible, but they are watching (micro-managing) every step of her journey. Lacey was in a for a LONG weekend at work (9 service times for Christmas) and when her doctor heard that, he told her "Uhm, Negative". So she is doctor ordered "Off work" until "6 weeks postpartum". That is good, because last weekend she worked all weekend, and she said "Laynie was so mad at me, she didn't move for a good while". ... which of course, gave us mild palpitations. Her instructions are to go home and walk some, but mainly rest, due to the nature of that baby's fluid. And if she notices ANYTHING different (movement, etc) she is to go to the hospital stat. Wow.
As I was driving to Dallas this morning, (I left at 7) I got to watch the beautiful sunrise. I had KLOVE on, and one of my favorite songs was playing.... "How Great is our God". It was a moment, friends. It was a moment for me. I have such a peace in my heart about this whole thing. God created all that wonder. He created all that beauty that surrounded me this morning. He has a plan for everything and everybody. And in that plan is our precious baby. Since so little is known about this disorder, whe "won't know til we know, then we'll know". I believe with a Grandma Prayer Warrior's belief, that she is going to be fine. I believe that the genetic disorder is going to be limited to the low fluid, and her 2 prong umbilical cord. And the fluid on her brain, no big deal. I believe with a Grandma prayer warrior's faith, that all will be well. I know as we go about our CHristmas day rush this year, hurried and harried over all the chaos, all of us can stop and think about the gift of this angel, and the love and grace that has embraced everyone that knows her story. Just as God sent His son for us, knowing full well the sacrifice that lay ahead, He sent Him to save us. THat is huge to me. I've always known the story, and felt the tug, but I've never experienced God. Not to this degree. My life has changed. My attitude has changed. And for the rest of my days, I will share this story and hope it makes a difference to someone. Because it made a difference in me, and my grandbaby will always know that. I pray I get to share the story of her journey with her, and tell her how many lives were impacted because of her. Pray, friends, pray hard this week. . She really needs to stay in another week and let those lungs develop as much as she can.. but God has the plan. and He is good, all the time.
Drawing Near- 12-18-07
Well at the ultrasound last Friday (which I was unable to attend) the doctor told Lacey he's thinking we should induce her at 37 weeks, due to the low level of fluid and the baby's growing size. He just put that in our heads and is going to do another ultrasound this Friday (which I WILL MISS AGAIN) -- I don't know much about C-sections (never having one myself) but those of you out there that have.......suggestions? thoughts? The doctor said that that early about 75% end up in C-section anyway. I'm thinking since the last thing we want to do is Stress that little lady anymore than she needs to be, why not just go get her? That way they can tend to her ASAP without the waiting of the birth. I don't know, I'd like some serious input here. Lacey OB/GYN is one of the few doctors that will do a VBAC (is that the right term) after a c-section. So, help me out here, and just think ... in 5 weeks, she'll be here. Most of our questions will be answered and we'll finally get to meet her. Pray for continued growth, pray for the fluid on her brain to be minimal and pray the Trisomy is limited to things that won't be too serious. Thank you friends. Thank you for your prayers and your love through our journey. More later..........
Shopping with the girls- 12-15-07
Well, my 3 girls and I took on shopping today. Yes, it's 10 days before Christmas. Yes, it was snowing. Yes, it was packed. Yes, we are crazy. But it was fun....until Kip got hungry......and tired......and cranky......and a little sick. :) Lacey was a trooper. She got her second wind when we made our way into Babies R Us. I have to resist the urge to buy EVERYTHING on her registry. What is wrong with me? I have granny-itis. (the urge to buy everything on registry lists) I just pushed the buggy and moved on. It was fun. It was so special. I wish Lacey had been able to have a pregnancy without constant worry and pressure. We have only breathed easier the last few weeks. And that's because the entire outcome of this deal is in our precious Lord's hands. This whole week has been one crisis in my life after another. IRS stuff, work stuff, ice stuff, no electricity stuff....stuff. And what is different? It's all small stuff. The big stuff is Laynie's health, and loved ones health, and continued life happiness. That's the big stuff. All the rest of it, is just small details. It took me such a long long long long time to get that. Now I do, and what a wonderful relief to hand over that responsibility of worrying about everything on the planet to someone who is capable of doing it.....ole God. He was happy to relieve my burden of worry and take it on His very capable shoulders. I have always been the keeper of the worry key, the holder of the misery bank, the shopper in the crisis store.... no more man. No more. God has it, and I'm His. Praise God for whom all blessings flow. Used to be just a song to me, now it's my constant prayer.
Laynie Paynie- 12-7-07
Lacey absolutely can't believe that we'll call her that. I think it's adorable. Laynie Paynie. Well, this was another good glorious day. Our precious smidge weighed in at 3 lbs. 1 oz, and her heart still looks good. THat is the good news. Our doctor wasn't there today, and we have the biggest moron (SON OF SATAN, thanks Jessi) on the planet looking at our girl. First of all, the somber, fatalistic, "oh poor you" attitude, placating with "grim outcomes" blah blah blah blah blah blah blah blah blah blah blah..........too hard to type blah (try it). anyway the good news is that she has grown, her heart is still steady and she is a kicking machine. Lacey's fluid is low (which is has been from the start, this is NOT new news) but people, that little girl in there weighs over 3 pounds! She's a bruiser! :) And the ultrasound girl that takes the readings before the doctor informed us she was breathing on her own "Watch her breathe" and we did, rapturously holding our breath as we watched our girl breathing in and out, steady in and out. She pointed at her knee as if to tell her mama "Uhm, this is that pokey thing that gives you so much trouble" Then I think the little tooter flipped us off. Oh, she is going to be loved. OH man, she already is. The conversation that flowed today was how God is sitting beside us every second. I know I have never been in a constant flow of prayer like I am now. I know I praise Him for every victory, for every bump, it's all His will. It took me a while to get that. Lacey had a conversation with a friend at church (lindy, you angel) and understands how God has become her best friend through this deal. He's right in the seat beside her, every second. Blessing her, blessing Laynie, blessing everyone around her. Better start buying that baby some Christmas gifts, cause she is going to be here in no more than 64 days and wow, we better get a move on. Oh, precious friends ......... God is SOOO so good. All the time.
Update on Smidge Nov 16, 2007
Well, fellow prayer warriors. Good News. GOOD NEWS. GOOD NEWS. (That is bold, italic'd AND underlined)
After the long arduous task of WAITING to actually get our ultrasound (Lacey made 2 bathroom trips) we finally got in. Lacey had been dreading this so badly, I practically had to drag her butt to the doctor. "No bad news, mom, NO bad news, I want to have a good time away with Brad". SOOOO, God heard that. Heard it BIG. I know you are wanting me to get to the good stuff, but we had to wait, and wait, and wait, and wait, and wait.., so I'm letting you feel our pain..... hee hee....OK, I'll stop. People, friends, and loved ones, Smidge's heart is perfect. Let that sink in. Perfect. Doc's words "The condition I saw last ultrasound has resolved itself, this heart is perfect". Not unlike God's grace, huh???????????????? His words "The condition we saw last time....gone." Lacey wasted no time informing him of the change in the prayer venue. "We've focused on her heart this last wave of prayer". His response "It worked." SO, on to prayer for her fluid on her brain, and continued growth.
We enjoyed her soo much today. She kept pushing her hand to the screen to wave, (we got several pics of that precious hand), I just love it...... her growth is to 23 weeks, exactly where she has been, weighs a whopping 1 lb 11 oz., and Lacey's fluid is up to a precious 9!
Doc told us that because her fluid is so low, that the doppler on the ultrasound reads through the fluid and her measurements might be off a bit. He is super encouraged, read an article this past week about similar cases with fluid on the brain, and 25% of those kids are perfectly normal with normal IQ's. He said that figure blew him away, it was so much higher than he thought would be possible. He cautions us to remember that she could deliver early and we need to keep in the back of our minds that if she stops thriving, we will need to deliver her -- Then says almost simultaneously "But this baby keeps surprising us" -- HELLO. That's Lolly's girl in there. That's God's precious miracle. That's unwavering faith that God is a supreme God and He knows everything and there are no mistakes in His plan. We go back in 3 weeks for another ultrasound, we are to the amazing 28 week mark, with less than 90 days to go. As we continue to pray, let's focus on her growth and her brain fluid. We got that heart deal kicked out of the running. Keep on praying, sweet wonderful friends, because God is Good, all the time.
After the long arduous task of WAITING to actually get our ultrasound (Lacey made 2 bathroom trips) we finally got in. Lacey had been dreading this so badly, I practically had to drag her butt to the doctor. "No bad news, mom, NO bad news, I want to have a good time away with Brad". SOOOO, God heard that. Heard it BIG. I know you are wanting me to get to the good stuff, but we had to wait, and wait, and wait, and wait, and wait.., so I'm letting you feel our pain..... hee hee....OK, I'll stop. People, friends, and loved ones, Smidge's heart is perfect. Let that sink in. Perfect. Doc's words "The condition I saw last ultrasound has resolved itself, this heart is perfect". Not unlike God's grace, huh???????????????? His words "The condition we saw last time....gone." Lacey wasted no time informing him of the change in the prayer venue. "We've focused on her heart this last wave of prayer". His response "It worked." SO, on to prayer for her fluid on her brain, and continued growth.
We enjoyed her soo much today. She kept pushing her hand to the screen to wave, (we got several pics of that precious hand), I just love it...... her growth is to 23 weeks, exactly where she has been, weighs a whopping 1 lb 11 oz., and Lacey's fluid is up to a precious 9!
Doc told us that because her fluid is so low, that the doppler on the ultrasound reads through the fluid and her measurements might be off a bit. He is super encouraged, read an article this past week about similar cases with fluid on the brain, and 25% of those kids are perfectly normal with normal IQ's. He said that figure blew him away, it was so much higher than he thought would be possible. He cautions us to remember that she could deliver early and we need to keep in the back of our minds that if she stops thriving, we will need to deliver her -- Then says almost simultaneously "But this baby keeps surprising us" -- HELLO. That's Lolly's girl in there. That's God's precious miracle. That's unwavering faith that God is a supreme God and He knows everything and there are no mistakes in His plan. We go back in 3 weeks for another ultrasound, we are to the amazing 28 week mark, with less than 90 days to go. As we continue to pray, let's focus on her growth and her brain fluid. We got that heart deal kicked out of the running. Keep on praying, sweet wonderful friends, because God is Good, all the time.
Nov 7- Long time, no blog
Sorry fans, I've been BUSY trying to earn a living. But what has changed in my world is I do everything with a prayer in my mind. God has become very real and very present in my life. I hope everyone read Lacey's blog yesterday because that was powerful powerful stuff. Again, how God answers our prayers, VERY VERY different than what we think we should receive. And all we can do is trust. We must be babies in our thinking, and allow our Father, our Daddy, our Savior, to show us the way. I've met very wonderful people in my side trip to Holland. People I would never have met without Laynie's situation. Let go and Let God, and that never made sense to me until now. Whatever the outcome of this journey, we'll Let God.
Lacey met another mommy yesterday through a chain of events that still set our minds reeling,(all via email) and this sweet mommy had her baby, and her angel had a genetic disorder also. She was able to have her angel for 5 months and had to send her to heaven just a few short weeks ago. Lacey was so strengthened and touched and emotionally overwhelmed by this brave mommy's story. We are so blessed to meet them and experience their journey. We are living day to day to day and truly trusting our Lord to show us the way.
God is Good, All the time.
Lacey met another mommy yesterday through a chain of events that still set our minds reeling,(all via email) and this sweet mommy had her baby, and her angel had a genetic disorder also. She was able to have her angel for 5 months and had to send her to heaven just a few short weeks ago. Lacey was so strengthened and touched and emotionally overwhelmed by this brave mommy's story. We are so blessed to meet them and experience their journey. We are living day to day to day and truly trusting our Lord to show us the way.
God is Good, All the time.
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