Last week we went to the new neurosurgeon at Vandy. Friday afternoon he called and said he had finally had the chance to really sit down and take a good look at all of Leila's scans. In his opinion, her ventricles have not been stable but have been getting slightly worse. Not what we wanted to hear and not a great way to start a weekend... Monday we got her surgery scheduled and by Tuesday she came down sick....
We have tried our very best to keep these babies healthy. We clean constantly, wash our hands constantly, and have Germ-X all around the house. The only place we've taken them besides doctors appointments is the park to get out and get some fresh air a few times. So, it's very frustrating that she is sick and there's not a whole lot you can do for a little one her age.
Please pray that she gets well soon. We have her surgery scheduled in a couple weeks so we need her well so she can have the surgery that she needs.
Thursday, September 27, 2012
Friday, September 14, 2012
Sweet ZZZZZZZZZZZZZZ's
Everyone says that when babies are ready to eat more they will let you know. Boy do they! Both babies had been eating the same amount for several weeks and we were starting to wonder when they would want more. For the past couple of days they seem like we just can't get them filled up! They have been eating like crazy sending us back to the kitchen for more each feeding.
And, with eating more they have been sleeping longer : ) Wednesday morning they made it till 5 before waking up, yesterday they made it all the way till 6 (which is when we get up anyway), and today they made it until 6:30! So thankful that both babies are starting to sleep through the night. I think Leila would have for a while now but we were always afraid we would be up twice if we let her sleep and just got Logan up. We had to make a trip to Chattanooga yesterday and I got to make the drive on more than 3 hours sleep which felt REALLY good! (We are done with the pulmonologist. Another specialist crossed off the list! :))
We're also getting close to being able to try something other than formula. This week we have been able to start giving them a little juice (not sure either one of them are thrilled with it yet) and soon we will be able to start trying baby oatmeal. I can't wait. When we're at the dinner table Leila will watch every bite go from my plate to my mouth...I think that big girl is ready for some real food : )
So thankful that my babies are continuing to get bigger and stronger with each passing day but kind of sad that they are growing so fast...
P.S. Please keep us in your prayers as we will be seeing the new neurosurgeon on Monday. We are just praying for some answers...
And, with eating more they have been sleeping longer : ) Wednesday morning they made it till 5 before waking up, yesterday they made it all the way till 6 (which is when we get up anyway), and today they made it until 6:30! So thankful that both babies are starting to sleep through the night. I think Leila would have for a while now but we were always afraid we would be up twice if we let her sleep and just got Logan up. We had to make a trip to Chattanooga yesterday and I got to make the drive on more than 3 hours sleep which felt REALLY good! (We are done with the pulmonologist. Another specialist crossed off the list! :))
We're also getting close to being able to try something other than formula. This week we have been able to start giving them a little juice (not sure either one of them are thrilled with it yet) and soon we will be able to start trying baby oatmeal. I can't wait. When we're at the dinner table Leila will watch every bite go from my plate to my mouth...I think that big girl is ready for some real food : )
So thankful that my babies are continuing to get bigger and stronger with each passing day but kind of sad that they are growing so fast...
P.S. Please keep us in your prayers as we will be seeing the new neurosurgeon on Monday. We are just praying for some answers...
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| This past weekend we decided to get out and get some fresh air. This was our first family outing to something other than a doctors appointment. This is just about all the babies did. |
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| Isn't he handsome?! Our first family trip to the park. |
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| Leila playing with her toy. |
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| Logan with his toy. Thanks Nanna! |
Wednesday, September 5, 2012
Update
The last couple of weeks have brought more questions than answers. We've been praying for answers regarding Leila and whether or not a shunt is needed.
Leila's ventricles are definitely larger than they should be. The good news is that her ventricles have not gotten any larger since we left the hospital. She is also not displaying any of the warning signs that her enlarged ventricles are causing her problems. The thing that worries our now former neurosurgeon is her head size. But, here are some things to consider...Leila has doubled her weight since we left the hospital around 10 weeks ago. She has grown so fast! Is he taking into consideration that her length and weight have also crossed percentiles? No. Does he know if her head size is because of her ventricles or because she is growing so much so fast? No. Has he been keeping an accurate record of her head circumference measurements? No. Is he sure that she needs a shunt? No. Is it urgent? No. But if it was up to him she would already have it.
Anyway, all that to say that at the last appointment with our neurosurgeon things just weren't adding up. He couldn't say for sure that a shunt is what she needs but he wanted to do the surgery that week. He also did something that I won't rehash here but it made us not trust him at all. We decided since he said it definitely wasn't urgent that we would go for a second opinion. Soon, we will see a neurosurgeon at Vanderbilt Children's Hospital and hopefully have the answers we need. I know we've been praying about this for months but please continue to lift Leila and us up regarding this situation.
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Both babies are doing GREAT! All I have to do is give them a hand to push their feet against and they'll crawl across the floor. They are both holding their heads up a lot better. Both can raise all the way up to their elbows when on their bellies. They are also both so inquisitive. They study people's faces and the things around them. They seem so fascinated by lights, sounds, and...the t.v....
Logan is a little character. He is the comic relief of the family. I'm not sure where he gets his personality. He's always smiling and wanting to play. He likes to try to get out of having to take all of his bottle by stopping in the middle and smiling and playing. I have to admit, sometimes it works because he is just so darn cute when he does it...He is also starting to try and grab things and he tries to mimic you when you stick your tongue out at him or make a facial expression.
Leila is still our little princess. She is also starting to smile at us more and want to play more. I LOVE seeing them smile! They both amaze me every single day.
Leila's ventricles are definitely larger than they should be. The good news is that her ventricles have not gotten any larger since we left the hospital. She is also not displaying any of the warning signs that her enlarged ventricles are causing her problems. The thing that worries our now former neurosurgeon is her head size. But, here are some things to consider...Leila has doubled her weight since we left the hospital around 10 weeks ago. She has grown so fast! Is he taking into consideration that her length and weight have also crossed percentiles? No. Does he know if her head size is because of her ventricles or because she is growing so much so fast? No. Has he been keeping an accurate record of her head circumference measurements? No. Is he sure that she needs a shunt? No. Is it urgent? No. But if it was up to him she would already have it.
Anyway, all that to say that at the last appointment with our neurosurgeon things just weren't adding up. He couldn't say for sure that a shunt is what she needs but he wanted to do the surgery that week. He also did something that I won't rehash here but it made us not trust him at all. We decided since he said it definitely wasn't urgent that we would go for a second opinion. Soon, we will see a neurosurgeon at Vanderbilt Children's Hospital and hopefully have the answers we need. I know we've been praying about this for months but please continue to lift Leila and us up regarding this situation.
______________________________________________________________________________
Both babies are doing GREAT! All I have to do is give them a hand to push their feet against and they'll crawl across the floor. They are both holding their heads up a lot better. Both can raise all the way up to their elbows when on their bellies. They are also both so inquisitive. They study people's faces and the things around them. They seem so fascinated by lights, sounds, and...the t.v....
Logan is a little character. He is the comic relief of the family. I'm not sure where he gets his personality. He's always smiling and wanting to play. He likes to try to get out of having to take all of his bottle by stopping in the middle and smiling and playing. I have to admit, sometimes it works because he is just so darn cute when he does it...He is also starting to try and grab things and he tries to mimic you when you stick your tongue out at him or make a facial expression.
Leila is still our little princess. She is also starting to smile at us more and want to play more. I LOVE seeing them smile! They both amaze me every single day.
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| Crabby Pants |
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| Sweet little feet with Momma's long toes :) |
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| Sweet boy |
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| Sweet girl |
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| A little blurry but it gives you an idea of how good she's pushing up! |
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| So proud of her! |
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| We're in trouble...This is how I put Logan to bed last night... |
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| And this is how I found him this morning! He can officially roll all the way over! |
Monday, August 20, 2012
Baby I'm Amazed By You :)
These two continue to amaze me!
This past Tuesday Logan had surgery to repair his hernia and to get circumcised. It broke this momma's heart but he did wonderful and showed once again what a strong little man he is. He had to be put under anesthesia so he was pretty out of it and fussy during the day Tuesday but by Tuesday night he was already almost back to himself. He never once even acted like it bothered him for me to change his diaper. He also got to sleep in the biggest crib I have ever seen. It was about six feet long and about 3.5 feet wide. Our nurse told me that she has come in before and seen the patient sleeping in their car seat and the parent sleeping in the bed. That's how big this crib was.
Logan and I stayed at the hospital that night and Daddy and Leila stayed at home. I have to say that I hated being away from them but Daddy did an awesome job with his little girl.
We pray that was the last hurdle for Logan.
We go back to the neurosurgeon for Leila again this week. He's still not sure whether he feels like she will need a shunt or not so until that decision is made we will see him every other week. Please continue to pray with us about this issue. We've been praying about this for months and still don't have an answer. That gets tough sometimes because as humans we want an answer now. We want God to answer our prayers the way we want Him to and right away. But that's not how He works sometimes. Sometimes the answer is wait/ not right now and sometimes the answer is no. We're trying to remember that no matter what the answer is He has a purpose for it. He has big plans for my little girl I just know it. But as we struggle please remember her as well as us in your prayers.
We also go back to the eye doctor for Leila this week. This should be the last. Thank the Lord for this and many other answered prayers.
Our hurdles are getting less and we praise the one true God for His amazing blessings!
This past Tuesday Logan had surgery to repair his hernia and to get circumcised. It broke this momma's heart but he did wonderful and showed once again what a strong little man he is. He had to be put under anesthesia so he was pretty out of it and fussy during the day Tuesday but by Tuesday night he was already almost back to himself. He never once even acted like it bothered him for me to change his diaper. He also got to sleep in the biggest crib I have ever seen. It was about six feet long and about 3.5 feet wide. Our nurse told me that she has come in before and seen the patient sleeping in their car seat and the parent sleeping in the bed. That's how big this crib was.
Logan and I stayed at the hospital that night and Daddy and Leila stayed at home. I have to say that I hated being away from them but Daddy did an awesome job with his little girl.
We pray that was the last hurdle for Logan.
We go back to the neurosurgeon for Leila again this week. He's still not sure whether he feels like she will need a shunt or not so until that decision is made we will see him every other week. Please continue to pray with us about this issue. We've been praying about this for months and still don't have an answer. That gets tough sometimes because as humans we want an answer now. We want God to answer our prayers the way we want Him to and right away. But that's not how He works sometimes. Sometimes the answer is wait/ not right now and sometimes the answer is no. We're trying to remember that no matter what the answer is He has a purpose for it. He has big plans for my little girl I just know it. But as we struggle please remember her as well as us in your prayers.
We also go back to the eye doctor for Leila this week. This should be the last. Thank the Lord for this and many other answered prayers.
Our hurdles are getting less and we praise the one true God for His amazing blessings!
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| Got to have some naked bath photos for the future :) |
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| I love her hair! |
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| Play time |
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| Watching Saturday morning cartoons together :) |
Sunday, August 12, 2012
JUST PROTECTING THEM
On October 10, 2011 our world changed forever. From that day we knew our lives would never be the same. We were going to be responsible for another life. Little did we know that we would be responsible for two. From that day on with the Lord's help we wanted to make the very best decisions for our little ones that we possibly could. We knew this task wouldn't always be easy and it definitely hasn't been so far.
Our babies are not "normal" babies. Our babies were born as micro-preemies. With that comes lots of issues that other parents and babies don't have to face. I'm not going to lie...I feel a bit jipped that I didn't get to experience my whole pregnancy. More importantly though, my babies did not get that very important third trimester before they were forced to try and face this world. Nothing about them was ready. My body should have still been doing everything for them. It was definitely a tough sixteen week stay at the hospital to get them ready to come home.
Yes, my babies are well enough to be at home now. That still doesn't mean they are as well as full-term babies. They still don't have much of an immune system and even a common cold could send them straight back to the hospital. We are desperately trying to keep them healthy. Call me crazy but after sixteen weeks of spending every single day in the hospital, I don't want to go back.
Brian and I would LOVE to get our babies out more and show them off, especially to all those who have diligently prayed for them and have supported us. But, that's not what is best for them right now. Right now, and for a while, it's best for them to be at home and around as few people as possible. This doesn't mean that we mind when people come and visit and meet the babies. We don't as long as they aren't sick, or have recently been sick, or have been around anyone who has been sick. Our main goal right now is to protect our babies and as the months grow colder it will be that much more important.
It may still be a while before we feel it's ok to get them out and about to things like church or family get togethers even. Please be patient with us and understand that we're not trying to keep them from anyone. We are more thankful for all who have prayed for us and loved on us along the way than any of you will ever know and as soon as we feel that our babies are ready, we WILL be showing them off!
Our babies are not "normal" babies. Our babies were born as micro-preemies. With that comes lots of issues that other parents and babies don't have to face. I'm not going to lie...I feel a bit jipped that I didn't get to experience my whole pregnancy. More importantly though, my babies did not get that very important third trimester before they were forced to try and face this world. Nothing about them was ready. My body should have still been doing everything for them. It was definitely a tough sixteen week stay at the hospital to get them ready to come home.
Yes, my babies are well enough to be at home now. That still doesn't mean they are as well as full-term babies. They still don't have much of an immune system and even a common cold could send them straight back to the hospital. We are desperately trying to keep them healthy. Call me crazy but after sixteen weeks of spending every single day in the hospital, I don't want to go back.
Brian and I would LOVE to get our babies out more and show them off, especially to all those who have diligently prayed for them and have supported us. But, that's not what is best for them right now. Right now, and for a while, it's best for them to be at home and around as few people as possible. This doesn't mean that we mind when people come and visit and meet the babies. We don't as long as they aren't sick, or have recently been sick, or have been around anyone who has been sick. Our main goal right now is to protect our babies and as the months grow colder it will be that much more important.
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| Life as a baby is a tough one... |
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| Can we say WIDE awake?! |
Thursday, August 9, 2012
Pics
This week has been pretty uneventful. But, after all my babies have been through I am thankful for uneventful. I just wanted to share a few more pics. I'm a bit camera happy these days but who can blame me?!
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| Our batteries ran out in one of the bouncy seats. We were sharing the vibration and I was rocking them both. Not sure what we would do without these : ) |
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| Courtney was wonderful enough to ride to Franklin with us to the eye doctor. I was signing them in and turned around to this. She's getting good! (and getting some good practice in!) |
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| So handsome |
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| Showing off the headband Mommy made me. |
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| Holding Frogger |
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| We went shopping in a pretty dress. |
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| Play time |
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| They can push up so good! |
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| Having fun |
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| We play hard! |
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| After 45 minutes of playing he was out! |
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| Precious little chubby fingers : ) |
Saturday, August 4, 2012
MANY BLESSINGS
I know there hasn't been a real update lately and we are sorry. This has been a very busy but blessed month home. We have had so many doctors appointments, many with trips back to Chattanooga or even Franklin. Leila's had more appointments than Logan with every specialist you can imagine. We've been to the pediatrician, retina specialist, gastroenterologist, neurosurgeon, cardiologist, pulmonologist, pediatric surgeon, hip ultrasounds, head ultrasounds, lab work, weight checks, NICU developmental clinic, etc., etc...at least two appointments every week BUT things are looking good : )
We've been to the neurosurgeon several times for Leila since we have been home and thank the Lord we haven't had to get a shunt. We're still not out of the woods yet but the first ultrasound was improved and has since been stable. He says if it continues to be stable we can start spreading our visits out a lot more. They won't do a shunt unless they absolutely feel they have to for her health. I like that we have a doctor whose not going to rush into something permanent. The cardiologist said her heart looks great and doesn't feel like he needs to see her for another check-up for several months. We're still on a little bit of oxygen but we did an overnight home study this past week and she is keeping her oxygen levels up much better than when we left the hospital so hopefully that won't be much longer. The eye doctor feels like her eyes are also doing great so he said one more visit to him and we should be done with regular check-ups there as well. We've also been able to come off some medicine that we had to come home on and they say she is exactly where she should be developmentally at this point. Overall, Leila is doing great! We couldn't feel more blessed!
Logan hasn't had to have as many doctor's visits. When we first came home we thought he may have to have eye surgery but thank God his eyes have greatly improved to the point that we are officially DONE with the eye doctor for him! He hasn't escaped all surgeries though. He will have his first on August 14th to fix his hernia. Because he was so premature they will keep him overnight to monitor him afterwards. Logan is also where he should be developmentally and has done awesome since coming home.
Both babies are gaining weight very well. Our last weight check was this past Monday. Leila weighed in at 9lbs. 12oz. and Logan 8lbs. 12oz.! My babies are getting so big!
We are so blessed to be home and to not have had any scares or trips back to the hospital since we came home at the end of June. GOD IS GOOD!!!!
Now for some more recent pics...
We've been to the neurosurgeon several times for Leila since we have been home and thank the Lord we haven't had to get a shunt. We're still not out of the woods yet but the first ultrasound was improved and has since been stable. He says if it continues to be stable we can start spreading our visits out a lot more. They won't do a shunt unless they absolutely feel they have to for her health. I like that we have a doctor whose not going to rush into something permanent. The cardiologist said her heart looks great and doesn't feel like he needs to see her for another check-up for several months. We're still on a little bit of oxygen but we did an overnight home study this past week and she is keeping her oxygen levels up much better than when we left the hospital so hopefully that won't be much longer. The eye doctor feels like her eyes are also doing great so he said one more visit to him and we should be done with regular check-ups there as well. We've also been able to come off some medicine that we had to come home on and they say she is exactly where she should be developmentally at this point. Overall, Leila is doing great! We couldn't feel more blessed!
Logan hasn't had to have as many doctor's visits. When we first came home we thought he may have to have eye surgery but thank God his eyes have greatly improved to the point that we are officially DONE with the eye doctor for him! He hasn't escaped all surgeries though. He will have his first on August 14th to fix his hernia. Because he was so premature they will keep him overnight to monitor him afterwards. Logan is also where he should be developmentally and has done awesome since coming home.
Both babies are gaining weight very well. Our last weight check was this past Monday. Leila weighed in at 9lbs. 12oz. and Logan 8lbs. 12oz.! My babies are getting so big!
We are so blessed to be home and to not have had any scares or trips back to the hospital since we came home at the end of June. GOD IS GOOD!!!!
Now for some more recent pics...
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| happy girl |
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| I've known Betty a loooong time. She came to meet the babies. |
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| I've also known Brittany a long time. This was the first time our little ones got to meet each other. |
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| My beautiful niece Alyssa came all the way from Key West to meet her cousins. |
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| This was the day Logan came home from the hospital. |
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| The day Leila came home. |
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| It's kind of hard to tell but they take up sooo much more of their car seats than they did when they came home. |
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| When Daddy is at work we try to eat together. We usually end up looking like this... |
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| and this. It's so cute how they always find each other's hand/ arm to hold on to. |
Thursday, July 26, 2012
THINGS I WANT TO TEACH LEILA
Leila, One day when you read this, I hope you will take these things to heart whether or not I have been successful at teaching you these things.
1) The most important thing: God loves you. He does not sit in Heaven with a big hammer waiting for you to mess up so he can smash and punish you. He loves you so much that He sent his son, Jesus, to pay the penalty for our sins. Jesus rose from the grave and is alive today and loves you very much. The only secret to eternal life is through Jesus.
2) Your mom, dad and grandparents love you very much
3) Your extended family and church family love you very much
4) You have the ability to do anything if you try hard enough, doctor, lawyer, engineer, scientist, artist, missionay, mom.
5) Don't listen to the media's opinion of how women should look. God made you just right. Don't try to be like women you see on magazines and TV. Be yourself.
6) Wait for the right guy. Don't settle for just anyone but wait for that person that you can't live without.
7) Girls don't have to be girly. You can be interested in cars, sports, or anything as long as you remember that you are a lady and how to act like a lady.
8) Your response and attitude to challenges in life will greatly help the people around you "a soft answer turns away wrath"
9) Love your mother and respect her. I'll do my best to demonstrate.
10) Don't ever stop being strong. You will always be my sweet miracle baby girl.
1) The most important thing: God loves you. He does not sit in Heaven with a big hammer waiting for you to mess up so he can smash and punish you. He loves you so much that He sent his son, Jesus, to pay the penalty for our sins. Jesus rose from the grave and is alive today and loves you very much. The only secret to eternal life is through Jesus.
2) Your mom, dad and grandparents love you very much
3) Your extended family and church family love you very much
4) You have the ability to do anything if you try hard enough, doctor, lawyer, engineer, scientist, artist, missionay, mom.
5) Don't listen to the media's opinion of how women should look. God made you just right. Don't try to be like women you see on magazines and TV. Be yourself.
6) Wait for the right guy. Don't settle for just anyone but wait for that person that you can't live without.
7) Girls don't have to be girly. You can be interested in cars, sports, or anything as long as you remember that you are a lady and how to act like a lady.
8) Your response and attitude to challenges in life will greatly help the people around you "a soft answer turns away wrath"
9) Love your mother and respect her. I'll do my best to demonstrate.
10) Don't ever stop being strong. You will always be my sweet miracle baby girl.
Tuesday, July 3, 2012
THINGS I WANT TO TEACH LOGAN
Logan, one day when you are able to read this for yourself, I want you to know that these are the things I want to teach you. Some of these are things that I have learned and some that I am still learning today. I write this for you, but also for me so that I will remember these things years from now. In no particular order:
1) The most important thing: God loves you. He does not sit in Heaven with a big hammer waiting for you to mess up so he can smash and punish you. He loves you so much that He sent his son, Jesus, to pay the penalty for our sins. Jesus rose from the grave and is alive today and loves you very much. The only secret to eternal life is through Jesus.
2) Your mom, dad and grandparents love you very much
3) Your extended family and church family love you very much
4) Music is fun. We use music to praise God and it is very easy to learn to play an instrument for this purpose.
5) In everything you do, do all for the glory of God. Whether it is work, play, music, worship or serving, give 110% so others will see your light.
6) Treat the ladies in your life with respect. Your mom, your sister and one day your wife. All men need help in this department. Try to learn this early.
7) Protect your sister. She has been through more in her first three months of life than most adults will in their entire life. She might need your help one day.
8) Stress is bad. Laughter is good. Try to learn to turn stressful situations into funny situations. I don't know how to do this, but I hope you can learn.
9) Learn to study God's Word. Reading it is good. Studying it like a text book is better.
10) Reading, writing and arithmetic are fun. Calculus is not hard.
11) Don't be afraid of a challenge. The sense of accomplishment from overcoming a challenge is exhilarating.
12) Darth Vader is cool. Not because he is the bad guy but because he becomes the good guy in the end.
13)It is very important to have a big imagination. It will help in so many ways. Plus it is fun.
14) Legos are the pinnacle of childhood toys.
15) Books are awesome. You can learn from them or take an adventure.
16) Prayer is powerful. It helped bring you through the first 3 months of your life.
17) Fishing is fun. I havent fished enough in my life.
1) The most important thing: God loves you. He does not sit in Heaven with a big hammer waiting for you to mess up so he can smash and punish you. He loves you so much that He sent his son, Jesus, to pay the penalty for our sins. Jesus rose from the grave and is alive today and loves you very much. The only secret to eternal life is through Jesus.
2) Your mom, dad and grandparents love you very much
3) Your extended family and church family love you very much
4) Music is fun. We use music to praise God and it is very easy to learn to play an instrument for this purpose.
5) In everything you do, do all for the glory of God. Whether it is work, play, music, worship or serving, give 110% so others will see your light.
6) Treat the ladies in your life with respect. Your mom, your sister and one day your wife. All men need help in this department. Try to learn this early.
7) Protect your sister. She has been through more in her first three months of life than most adults will in their entire life. She might need your help one day.
8) Stress is bad. Laughter is good. Try to learn to turn stressful situations into funny situations. I don't know how to do this, but I hope you can learn.
9) Learn to study God's Word. Reading it is good. Studying it like a text book is better.
10) Reading, writing and arithmetic are fun. Calculus is not hard.
11) Don't be afraid of a challenge. The sense of accomplishment from overcoming a challenge is exhilarating.
12) Darth Vader is cool. Not because he is the bad guy but because he becomes the good guy in the end.
13)It is very important to have a big imagination. It will help in so many ways. Plus it is fun.
14) Legos are the pinnacle of childhood toys.
15) Books are awesome. You can learn from them or take an adventure.
16) Prayer is powerful. It helped bring you through the first 3 months of your life.
17) Fishing is fun. I havent fished enough in my life.
Friday, June 29, 2012
TWINS?
Who said twins are supposed to look alike? I would put some more words here but it is hard to type with Logan in one hand.
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| Sister likes to cuddle with her brother |
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| Happy to be home |
Tuesday, June 26, 2012
GOING HOME
Thanks to God for bringing us to this point. Yesterday Leila was discharged from the hospital and we packed up our stuff and left the Ronald House. She is tethered to an oxygen tank but we made it home. I would post some pictures but I dont know where the camera is in the mess we call our living room now. The real challenges are ahead, making sure they gain weight, two to three doctor appointments every week, not much sleep, no time to get groceries, trips back to chattanooga next week for more head ultrasounds. But it is good to be home. One day it will be good to be in our real heavenly home.
Pictures of the two of them together are interesting since they look nothing alike. I will post those first when the camera is unearthed.
Pictures of the two of them together are interesting since they look nothing alike. I will post those first when the camera is unearthed.
Friday, June 22, 2012
TODAY WASN'T THE DAY
The doctor and her pediatrician in Tullahoma wanted to wait until Monday to discharge her in case she had problems taking the formula. That's understandable and is probably the best thing to do at this point.
We have a more serious problem though. Her head ultrasound, once again, brought more bad news. So they did a procedure to drain some fluid out of her spine to try to kick start the draining from her brain into her spine. Her next head ultrasound isn't until the end of next week. If they discharge her on Monday and she needs surgery for a shunt at the end of next week, that means re-admittance to the hospital. Only, we will already have moved out of the Ronald House and won't have a place to stay if she needs to have a shunt and recover for a week.
What do we do now? We have been praying for God's healing on this issue for three months solid and now we come to discharge time and there is a possibility of re-admittance. I don't know how to handle this...
We have a more serious problem though. Her head ultrasound, once again, brought more bad news. So they did a procedure to drain some fluid out of her spine to try to kick start the draining from her brain into her spine. Her next head ultrasound isn't until the end of next week. If they discharge her on Monday and she needs surgery for a shunt at the end of next week, that means re-admittance to the hospital. Only, we will already have moved out of the Ronald House and won't have a place to stay if she needs to have a shunt and recover for a week.
What do we do now? We have been praying for God's healing on this issue for three months solid and now we come to discharge time and there is a possibility of re-admittance. I don't know how to handle this...
Thursday, June 21, 2012
TOMORROW COULD BE THE DAY
It is time. Tomorrow could be the day. Tonight might be our last night in the Ronald McDonald House. Tomorrow night could be our first night at home with both babies.
As far as we know, they still plan to discharge Leila tomorrow afternoon. They did several tests today: an EKG for her heart, brain ultrasound again, kidney study. I pray that all these test results will be good and all the doctors will agree that it is time for her to go home.
She will have her carseat test tonight. She will have to sit in it for 1.5 hours without having any trouble breathing. Pray that she passes it.
She has to go home on a little oxygen so we have to have an oxygen tank brought to the house. Pray that all goes well.
We have been looking forward to this day. Now we will have an entirely new set of challenges.
As far as we know, they still plan to discharge Leila tomorrow afternoon. They did several tests today: an EKG for her heart, brain ultrasound again, kidney study. I pray that all these test results will be good and all the doctors will agree that it is time for her to go home.
She will have her carseat test tonight. She will have to sit in it for 1.5 hours without having any trouble breathing. Pray that she passes it.
She has to go home on a little oxygen so we have to have an oxygen tank brought to the house. Pray that all goes well.
We have been looking forward to this day. Now we will have an entirely new set of challenges.
Sunday, June 17, 2012
15 WEEKS
Last time we asked for prayer for Leila again. The neurosurgeon looked at her head ultrasounds, decided that what they were seeing was not urgent and indicated that they would follow her as an outpatient!
The doctor also decided to do a study that all NICU babies get before they leave. It's a study to see oxygen and pulse levels over a period of twelve hours to determine if the baby needs to go home with oxygen support. They took Leila off all oxygen support earlier this week and she has done fairly well with only a little trouble when she eats. Tomorrow, they will review the study results and then, as the resident doctor put it, we will begin making bigger plans.
Do Re Mi Fa So La Ti Da (That's the fat lady warming up). That's right. I didn't stutter. Our days in Chattanooga are numbered and I think I can count them on one hand.
That doesn't mean that all our challenges are over. We still have some challenges to overcome, but at least we will be in our own home. God has been good and brought us through some tough times.
Statistics show that only 50% of babies born at 25 weeks of gestational age go home... We are taking home two 25 weekers. I dare you to tell me there is no God and that he doesn't work miracles. I know from experience that he does.
Psalm 34:4 I sought the LORD, and he heard me, and delivered me from all my fears.
The doctor also decided to do a study that all NICU babies get before they leave. It's a study to see oxygen and pulse levels over a period of twelve hours to determine if the baby needs to go home with oxygen support. They took Leila off all oxygen support earlier this week and she has done fairly well with only a little trouble when she eats. Tomorrow, they will review the study results and then, as the resident doctor put it, we will begin making bigger plans.
Do Re Mi Fa So La Ti Da (That's the fat lady warming up). That's right. I didn't stutter. Our days in Chattanooga are numbered and I think I can count them on one hand.
That doesn't mean that all our challenges are over. We still have some challenges to overcome, but at least we will be in our own home. God has been good and brought us through some tough times.
Statistics show that only 50% of babies born at 25 weeks of gestational age go home... We are taking home two 25 weekers. I dare you to tell me there is no God and that he doesn't work miracles. I know from experience that he does.
Psalm 34:4 I sought the LORD, and he heard me, and delivered me from all my fears.
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| Older picture but still cute |
Thursday, June 14, 2012
URGENTLY WAITING AGAIN
I shouldn't be having this conversation with you. Two weeks of bad results from her head scans. Her regular neurosurgeon was on vacation this week so the neurosurgeon who looked at her head ultrasounds didn't want to rush into things. She will have another ultrasound on Sunday or Monday. At this point, she is close enough to going home that if her ventricles in her brain swell a little more this week then they will most likely put in a shunt (http://en.wikipedia.org/wiki/Cerebral_shunt) next week. Needless to say, we wish God would heal her. We thought he did two or three weeks ago when everyone prayed and her results looked better.
I just don't understand. Where is God who is the Great Physician? I truly believe 100% that God is able to miraculously heal her in an instant. I also believe that he can choose not to because he is God. That is what scares me. We are not worthy of receiving anything good from God, so I guess if he decides not to heal her brain then we got what we deserved. Please be merciful, God. Church, please plead to God with us, we really are running out of time on this one.
I just don't understand. Where is God who is the Great Physician? I truly believe 100% that God is able to miraculously heal her in an instant. I also believe that he can choose not to because he is God. That is what scares me. We are not worthy of receiving anything good from God, so I guess if he decides not to heal her brain then we got what we deserved. Please be merciful, God. Church, please plead to God with us, we really are running out of time on this one.
Tuesday, June 12, 2012
DISCHARGE #1
Psalm 3:4 I cried to the Lord with my voice, And He heard me from His holy hill.
Praise God! Logan was discharged from the hospital yesterday (11 June 2012). We spent all Saturday night, all day and night on Sunday and most of Monday doing Care by Parents. That's where they lock you in a room with your baby and when they return, if everyone is still ok, they let you go home. Well, mostly like that. Logan did great and we made it. Three quarters of the Binkley family is now in the Ronald McDonald House.
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| Just before we left the hospital |
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| Rock On Guys. I'm Outta Here. |
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| Long day. Sleep = good |
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| Fell asleep with her hands up... |
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| I love this picture. I have probably already posted it, but I want to post it again. |
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