Hello everyone,
Not the update I wanted to give you all but we are back in the hospital. Lane started having a lot of secretions a couple days ago that led to a fever and a cough. We decided to bring him to er last night and he has pneumonia so here we are admitted to the hospital for a few days. The nurse came in and said that he has some bacteria in his blood so we are waiting to see what comes of that. Please keep Lane in your prayers for a quick recovery!
Thursday, April 21, 2011
Thursday, April 14, 2011
1 year old...
Lane turned one yesterday. It is so hard for me to believe a whole year has passed. This year has been filled with extreme hardships and sorrow but also with joy, success, tons of love, happy tears, and the great enjoyment of our precious little boy. Looking back I never could have imagined how amazing Lane would be. We started his life with hard news. Drs saying he would not live past six months, had severe brain damage, and other abnormalities was hard to swallow those first few days. Turns out we didn't need to "swallow" any of it. I wish those drs could have seen him yesterday. Laughing, opening his presents, and eating his yummy cup cake. Life is amazing with Lane it. God granted Roger and I with a gift far beyond our imagination. He gave us Lane knowing how special he would be. Last night I rocked my baby boy to sleep. A year ago I longed to hold him and thinking of how much a miracle he is brought tears to my eyes. Lord I'm sending up a special thanks to You for choosing me and Roger to be Lane's parents. Every child is special, but I think we got an extra special one. ;) Now for some pictures of course. Lane's party is this weekend so I will give some pictures then too! I can't believe my baby is 1!!!!!
P.S. Thank you all for your support of our family for a year!
First Born
In NICU
First time being held...
First Outfit...
Trach..
Halloween..
.
christmas morning
sitting!
bath time 
birthday cupcake
Mommy and Lane..
It's been an amazing year and I am certain the rest of our lives will be just as amazing! We love you baby boy, thanks for being so awesome!
P.S. Thank you all for your support of our family for a year!
First Born
In NICU
First time being held...
First Outfit...
Trach..
Halloween..
.christmas morning
sitting!
Big Boy 
birthday cupcake
Mommy and Lane..
It's been an amazing year and I am certain the rest of our lives will be just as amazing! We love you baby boy, thanks for being so awesome!
Friday, March 18, 2011
quick update
This is going to be a real quick update with some BIG BIG news!
A. I passed med surg...yay me. One step closer to graduating nursing school!
B. Lane is doing great. He is sitting up really well and cooing around his trach like a mad man!
and drumroll please......
C. DECANNULATION- thats right. May 10th if all goes well Mr. Lane is going to be trach free for good!!! We have a bronch on april 15 to check the vocal cords and if that goes well we are all clear for the 10th! Can we say PARTY for Mr. Lane
Lane will be turning one very shortly and o my what a first year of life. I will post a proper update on that coming soon!
Also we are walking in april for the march of dimes. Our team is now accepting donations. Go to http://www.marchforbabies.org/ and search for Lane's Warriors if you are interested in helping us out! Thanks for reading and again proper update is on it's way!
A. I passed med surg...yay me. One step closer to graduating nursing school!
B. Lane is doing great. He is sitting up really well and cooing around his trach like a mad man!
and drumroll please......
C. DECANNULATION- thats right. May 10th if all goes well Mr. Lane is going to be trach free for good!!! We have a bronch on april 15 to check the vocal cords and if that goes well we are all clear for the 10th! Can we say PARTY for Mr. Lane
Lane will be turning one very shortly and o my what a first year of life. I will post a proper update on that coming soon!
Also we are walking in april for the march of dimes. Our team is now accepting donations. Go to http://www.marchforbabies.org/ and search for Lane's Warriors if you are interested in helping us out! Thanks for reading and again proper update is on it's way!
Tuesday, March 8, 2011
Fairy Tales
I remember as a little girl dreaming of being grown up one day. Being a doctor or lawyer and marrying my prince charming in a huge ceremony. We would buy a huge house and have adorable little kids running around. Life would be perfect, just like in the movies. Rich and successful, what everyone wanted! It was a fairy tale I, and every other little girl, kept with me for a long time. My fairy tale didn't include anything short of perfect. Hey, it was my dream.
My fairy tale did not make room for lifes ups and downs. It would be the way I thought in my mind it should be and nothing else was an option.
My fairty tale did not visualize marrying my high school sweetheart before finishing college, having a baby at nineteen (let alone a special needs baby), struggling financially at times, or having any other hardship.
Fairy tales are about:
Love
My fairy tale did not make room for lifes ups and downs. It would be the way I thought in my mind it should be and nothing else was an option.
My fairty tale did not visualize marrying my high school sweetheart before finishing college, having a baby at nineteen (let alone a special needs baby), struggling financially at times, or having any other hardship.
Fairy tales are about:
Love
Laughter
Kisses
Friends
Family
Being Mad
...and Happy
Struggles...
Success
Chillin' Out
Good rest after a hard
days work..
Simply enjoying life
to it's fullest!
Turns out I got my fairy tale!
Thursday, March 3, 2011
Wednesday, March 2, 2011
still here...
We are still at riley. Lane's having a lot of problems breathing now. He is breathing extremley fast..sometimes hitting seventy breaths a minute and has had some issues with desating which is where the oxygen in his body is getting too low. It seems so crazy that now, of all times, he is having breathing problems. He has never had oxygen issues and it would have made more sense when he had the trach put in or when he was born than it does now. I have not gotten an answer yet on what is causing this. Hopefully they can turn this around quick so we can just go home. It is so hard to be here sometimes. It just gets depressing being held hostage in this place.
I also realize I never really followed up with what got us here to begin with. After being discharged on Wednesday last week Lane seemed pretty good. Saturday morning he woke up fussing. I really didn't think much about it. He cried all day Saturday unless he was asleep. I still was not overly concerned because he was not vomiting or unresponsive so I really thought he just had a bug. Well, Sunday came and he was STILL crying. Around ten I had had enough and took him to the ER. I still thought it was just a bug but something needed done. Turns out it was the shunt causing the problems as you know. I really hope they got it fixed this time. Poor guy got stuck literally 20 times trying to get an IV and still didn't get one. The had to do it during surgery poor baby.
So with anyluck we will be home very soon! I have no idea what this breathing stuff is going to put us in but hopefully it's manageable at home!
Again thank you all for your prayers, thoughts, concern, and interest!
I also realize I never really followed up with what got us here to begin with. After being discharged on Wednesday last week Lane seemed pretty good. Saturday morning he woke up fussing. I really didn't think much about it. He cried all day Saturday unless he was asleep. I still was not overly concerned because he was not vomiting or unresponsive so I really thought he just had a bug. Well, Sunday came and he was STILL crying. Around ten I had had enough and took him to the ER. I still thought it was just a bug but something needed done. Turns out it was the shunt causing the problems as you know. I really hope they got it fixed this time. Poor guy got stuck literally 20 times trying to get an IV and still didn't get one. The had to do it during surgery poor baby.
So with anyluck we will be home very soon! I have no idea what this breathing stuff is going to put us in but hopefully it's manageable at home!
Again thank you all for your prayers, thoughts, concern, and interest!
Tuesday, March 1, 2011
Headed home...hopefully?!?!?!?!
Lane is doing well today. They revised the shunt again. The doctor said there was some mild bleeding in the brain which she thinks triggered an immune reaction that clogged the shunt. She went in and cleaned out the ventricles of the brain to check for active bleeding and she found none! So Lane has a brand new shunt and some really clean ventricles!!
Last night he woke up from surgery super happy.
Some quick phone snap shots of the smiles I had not seen in a few days.
O he is so precious. We are hoping to all get home tonight! I had to come take a test for finals so I am waiting on the call to come back or wait here at home. It really sucks not being there even though it has only been a few hours. Daddy and Grandma Chrissy are there with him though!
The only thing holding them there is since the surgery lane has started making a whistling noise. It sounds kind of like the stridor before the trach but not quite. He just keeps coughing so it is irritating him. Pulmonary is suppose to be looking at him anytime now to see what is going on. They said it was a leak in his airway. Dare I wish that this shunt surgery fixed the vocal cords!!! I am doing my best not to jump the gun on that one.
Well that is all for now here. I will update as soon as I get some more info. Thanks to everyone for their thoughts and prayers! Danielle
Last night he woke up from surgery super happy.
Some quick phone snap shots of the smiles I had not seen in a few days.
The only thing holding them there is since the surgery lane has started making a whistling noise. It sounds kind of like the stridor before the trach but not quite. He just keeps coughing so it is irritating him. Pulmonary is suppose to be looking at him anytime now to see what is going on. They said it was a leak in his airway. Dare I wish that this shunt surgery fixed the vocal cords!!! I am doing my best not to jump the gun on that one.
Well that is all for now here. I will update as soon as I get some more info. Thanks to everyone for their thoughts and prayers! Danielle
Monday, February 28, 2011
gone and back again 2
I really hope this blog title stops at 2. We are back at riley. They sent us home on wednesday and yesterday we came back for unconsolable crying which was of course the shunt. Lane had surgery this morning and is doing well. I will update this later this week if not before. I am crazy stressed as it is finals week at school on top of all this!
Tuesday, February 22, 2011
gone and back again :) :(
We left riley on valentines day after Lane had his shunt revision. He has been doing well this week, acting really good, with the exception of a cold. Then today happened. Now, Lane has scared the crap out of me many times. He has worried me and shot my emotions to h*** more times than I can count. Today he freaked me out. That's a first! So the story begins...
He was sick last night. Vomited a few times, fussy, sleepy the general stuff. I really thought it was a mixture of a cold and new meds as I took him to the doctor yesterday afternoon. Shunt was deep in the back of my mind but not anything that really said "SHUNT PROBLEM."
But boy I heard it loud and clear this morning. I have seen a lot of stuff being in nursing school and with Lane but I never expected what I saw when I changed Lane's diaper this morning. He woke up acting fine so I thought he was better. Then as I was changing his diaper he turned his head. I about died right then. His shunt was not visible and over where he shunt used to be was a tennis ball sized bump. It was squishy and obviously full of fluid. I freaked!
So once again I am sitting in a hospital room letting the world know a little piece of my families ongoings. The doctors are not sure what is causing the fluid so we wait here until they figure it out. They really picked a nice place for us to stay during this waiting game. Just kidding though this is one of the nicest hospital rooms I have been in. Anyway I'm asking for prayers. Good strong prayers. Any prayer! You all know prayer is what has Lane with us today so pray we will. My little boy is so strong and it makes me hurt so much for him to have to go through this stuff. I would do anything to trade him places, but that is not God's will. Lane is strong, stronger than anyone I know, and he will come through this with flying colors as always. Of that I am sure.
This is a shout out to you little man, "MOMMY LOVES YOU SOOOO MUCH!!!!!"
Thank you all, Danielle
P.S. See bottom of post for a little shunt lesson :)
Pictures from today...
Shunts...
A little background for new followers. Lane was born after six weeks of hospital bedrest four weeks early with a birth defect known as spina bifida. This is where the spinal cord protrudes out of the back. In lane's case it started in the mid-lower back and decended down the rest of his back. FYI they close this shortly after birth. Spina bifida causes paralysis of varying degrees generally in the legs and hips ( Lane cannot move his feet and his legs are very weak), bowel and bladder issues, and Arnold Chiari 2 malformation (ACMII). This is just the basic three. The ACMII is a brain malformation that basically pulls the brain back and down causing the brainstem to go down into the top of the spine. This causes hydrocephalus(fluid on the brain) which is treated with a shunt. A shunt is a tube that goes into the ventricles in the brain and runs down the body to the abdomen. It functions to drain fluid from the brain. ACMII also can be symptomatic as lanes is and cause aspiration and vocal cord paralyisis along with other things. Thus the reason Lane has a trach and g-tube. This is just the basics of this condition as the facts are much more extensive and detailed. I just skimmed over everything quickly. Feel free to look up anything more. O did I mention that spina bifida kids are amazing because they truly are. Thank you for taking the time to read!
He was sick last night. Vomited a few times, fussy, sleepy the general stuff. I really thought it was a mixture of a cold and new meds as I took him to the doctor yesterday afternoon. Shunt was deep in the back of my mind but not anything that really said "SHUNT PROBLEM."
But boy I heard it loud and clear this morning. I have seen a lot of stuff being in nursing school and with Lane but I never expected what I saw when I changed Lane's diaper this morning. He woke up acting fine so I thought he was better. Then as I was changing his diaper he turned his head. I about died right then. His shunt was not visible and over where he shunt used to be was a tennis ball sized bump. It was squishy and obviously full of fluid. I freaked!
So once again I am sitting in a hospital room letting the world know a little piece of my families ongoings. The doctors are not sure what is causing the fluid so we wait here until they figure it out. They really picked a nice place for us to stay during this waiting game. Just kidding though this is one of the nicest hospital rooms I have been in. Anyway I'm asking for prayers. Good strong prayers. Any prayer! You all know prayer is what has Lane with us today so pray we will. My little boy is so strong and it makes me hurt so much for him to have to go through this stuff. I would do anything to trade him places, but that is not God's will. Lane is strong, stronger than anyone I know, and he will come through this with flying colors as always. Of that I am sure.
This is a shout out to you little man, "MOMMY LOVES YOU SOOOO MUCH!!!!!"
Thank you all, Danielle
P.S. See bottom of post for a little shunt lesson :)
Pictures from today...
Shunts...
A little background for new followers. Lane was born after six weeks of hospital bedrest four weeks early with a birth defect known as spina bifida. This is where the spinal cord protrudes out of the back. In lane's case it started in the mid-lower back and decended down the rest of his back. FYI they close this shortly after birth. Spina bifida causes paralysis of varying degrees generally in the legs and hips ( Lane cannot move his feet and his legs are very weak), bowel and bladder issues, and Arnold Chiari 2 malformation (ACMII). This is just the basic three. The ACMII is a brain malformation that basically pulls the brain back and down causing the brainstem to go down into the top of the spine. This causes hydrocephalus(fluid on the brain) which is treated with a shunt. A shunt is a tube that goes into the ventricles in the brain and runs down the body to the abdomen. It functions to drain fluid from the brain. ACMII also can be symptomatic as lanes is and cause aspiration and vocal cord paralyisis along with other things. Thus the reason Lane has a trach and g-tube. This is just the basics of this condition as the facts are much more extensive and detailed. I just skimmed over everything quickly. Feel free to look up anything more. O did I mention that spina bifida kids are amazing because they truly are. Thank you for taking the time to read!
Sunday, February 13, 2011
shunt woes....
Hello everyone,
I hate to report that we are back at riley hospital. Lane's shunt was clogged so we were transferred up here late last night. He had been sleepy, cranky, and vomiting so we decided to get him checked. Good thing! He is in surgery now so hopefully we can update soon with good news. They also thought he had pneumonia but that has all been cleared. Thoughts and prayers would be greatly appreciated. Thank you...
I hate to report that we are back at riley hospital. Lane's shunt was clogged so we were transferred up here late last night. He had been sleepy, cranky, and vomiting so we decided to get him checked. Good thing! He is in surgery now so hopefully we can update soon with good news. They also thought he had pneumonia but that has all been cleared. Thoughts and prayers would be greatly appreciated. Thank you...
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