vent is out....

Lanes vent came out around 3 this afternoon. It was the most amazing thing to see him moving and breathing on his own and he actually was LOOKING at me and HOLDING my finger. O i love him so much. He is stable and on a nasal canula for oxygen. I cannot hear any stridor but the doctors have not been in so I will not assume anything or get my hopes up too soon. Lane, the poor baby, is so swollen, he looks like he has been beat on with two puffy, black eyes and his swollen hands and feet. I just got done holding him for the first time since monday. I must admit i teared up. We are still hoping he clears up and does not need the trach so please continue praying. Roger and I finally got a room for tonight in the Ronald McDonald house in the hospital so we are gonna finally get a good nights sleep out of a waiting room chair. It's only for tonight but it is so much better. Well we are going to eat then I'm headed back to our miracle baby.

Danielle

...................

Lanes mri results came in this morning. His chiari malformation is not the likely cause of the vocal cord paralysis. Thats a good thing but the problem now is what is causing it. The drs are still looking at nerve problems because he has the feeding dysfunction also. We were told that they are going to try to take the vent off of him tomorrow and see how he does. If there is no improvement we are going to have to submit to a tracheostomy. This is scary for me and I am completely unsure how we are going to work our lives around this. I am supposed to start school on the 23rd which is little over a week away. We have a lot of decisions to make and some are going to be hard. The most important thing is Lane and we have to do what is best for him. I have been overwhelmed so much, but we can handle this just as we have handled everything else. A few classes and I will be a trach expert. All i can ask for is prayers that lane is better in the morning when he comes off the vent. I want my baby back so bad. I have not been able to hold him since monday and it is absolutely killing me. Well thats really all I can say for now so I will be back on with more info tomorrow.

still hospitalized.....

Well we are still here at riley. Lane is still on the vent this morning. We are really hoping that he can come off today and get off sedation. They did an mri last night to look at his brain structure but we have not heard the results. Lane's neurosurgeon does not think it has anything to do with his chiari malformation. I'm not sure I posted about that technically so he is a little bit of info on it...
    Arnold Chiari II malformation is a malformation of the brain commonly seen in persons diagnosed with spina bifida. The brain is severly compressed from the spina bifida and is pulled back and down into the vertebrae. This creates a cork of sorts for the brain which leads to hydrocephalus, water on the brain, requiring a shunt. Pressure on the brain stem can cause many neurological problems includng feeding dysfunction, breathing problems, developmental delays, etc.
If the problem is a nuerological problem we are being told lane will most likely have to have a trach...an artificial airway. They do have a surgery for the chiari malformation but it is very high risk. They basically remove part of the top vertebrae of the spine and sometime basically move the brain. I'm so praying for a non neurological answer because neither of these options are roads i want to cross. We should be finding out more info today so i will update as soon as possible. Thanks to you all for the prayers we have been recieving.

prayers, prayers, prayers.....

It looks like lane will be turning four months old at riley hospital. We headed back to the hospital because of the stridor we have been fighting for over a month. He stayed a day in a pediatrics pulmonary unit, but last night he was moved to intensive care. About ten last night they decided it would be best to sedate him and put him on a ventilator, so now my baby that ripped out his vent at 6hrs old and 4lbs is now on the one thing we fought to keep him off of. As much as I hate to see him look like this, so lifeless and helpless, I feel I must admit he is more comfortable. Lane's heartrate is finally down to normal and his stridor is gone, making it very easy for him to breath.....although the machine is breathing for him right now. I hate this whole thing, we have been to 3 different hospitals and they are just now seeing its not croup. He has an IV in his skull right now, but they are going to put a pic line in today. He also goes for an mri at two to see how his brain is laying to rule out the possibility of pressure on his vocal nerve. I really don't know anything more at the moment. All I can ask is for prayers.....tons and tons of prayers. Please help with this small gesture. I love you all.....Danielle

we are home.....

So we made it home from our last hospitalization and lane is doing well. All his tests came back normal so they let us go home! He is still having some respiratiory problems but significantly better than before. Lane is still taking a bottle three times a day. We are going back the 19th and 20th for some more appointments including a swallow study. Lane is now weighing 12lb 13oz. He is falling behind developmentally so i have been trying to get in contact with his therapists. I will try to get some pictures on here soon. O and many many thanks to everyone who participated in Lanes benefit. We really appreciate everyone. Thats all  for now...............:)

3 months......a long awaited update

Hello all, I want to start this post with a huge apology for my few updates in the last few months. Lane turned 3 months old on July 13th and has grown to 11 pounds and 12 ounces. On the 13th and 14th we made a trip to the spina bifida clinic at riley in indy. It was an overall great trip. Lane's bladder and kidneys looked great. He is not holding his head up yet so we have to do some major work in that area.(He is really making big improvements since) We had a swallow study and Lane actually had improved on his aspiration though still aspirating. They decided he can have one ounce of ultra thick formula through a preemie nipple three times a day. All other feeds must be ng. He LOVES his bottle and thinks its quite awful that he only gets one ounce.

While in indy Lane had been very junky sounding and had started a little whistling noise called stridor. His pulmonologist gave him steroids and albuteral to get him over it. Well...he never got over it. The stridor got worse to the point where you could hear him breathing from the other room so we took him to er. They sent us home. Two days later he was still worse so we took him back and they kept him at good samaritan hospital for two days. There he was diagnosed with croup although they wondered about it because it had been lasting for over three weeks. They sent us home on steroids once again. By that afternoon(this past thursday) he was the worse he had ever been so I called and took him to richland memorial in olney. His pediatrician did not think he had croup so we stayed there till sunday and were shipped to riley....

...and so here we are. I'm sitting at a computer at riley hospital( my come to be second(or first) home). Lane is doing much better for some reason but the doctors here want to know what was causing the problems so we have a lot of tests to do until something shows up. He had a bronchoscopy today which is where they run a camera down your throat to look at the structure of the vocal cords. That test came back normal with his floppy airway much improved. So we are now waiting for another sleep study to be scheduled and a gastric emptying test and an upper gi test tomorrow.

They had taken Lanes bottle feeds away but I think we are going to repeat our swallow study tomorrow. Pray that he does well and can go on bottle feeds completely.

Well thats a little bit of new info for all you followers for now. There is gonna be a benefit held in Lanes honor this saturday so we hope to get out of here and attend. I hope you all are having a great summer. Thanks for following....

12 weeks.........

Not really anything new this week. Lane is 10 pounds 14 ounces. We are all doing really well. Roger and I have been so blessed with such a happy, beautiful little boy. Lane smiles, laughs, and coos all the time now. He has really got the hang of rolling from belly to back...though he will not let his grandma mary see!!!! Next week we head to indy for a lot of appointments. We will be going to the spina bifida clinic where we will see neurology, orthopedics, developmental peds, and urology. We also have an appt with lanes pulmonary dr. The two important tests Lane will be having is a renal ultrasound and a swallow study. Please pray that both go well and Lane gets to lose the feeding tube and get a bottle. We really appreciate all the prayers. Extensive update sometime next week...I'm gonna try to update both Tuesday and Wednesday but we shall see as i will be very busy!

11 weeks

Lane is now 11 weeks old and growing steady at about 10 and a half pounds. What a week we have had!!!  First off Lane is doing absoluetely amazing developmentally, he has really started smiling a bunch and he is rolling over for mommy....he wont for anyone else though...lol. He has started cooing a little but is much more content to just sit back and take it all in:) On sunday Lane laughed for the first time. I was talking about him peeing all over me and he started smiling and laughing like he knew what we were talking about....it was way too funny! Sunday was also one of the most stressful days of my life. Sunday morning Lane projectile vomited and choked on it. His heart monitor was going off and he was not breathing. It scared the crap out of me. I took him to the hospital because  I was worried about his shunt. They ran bloodwork and saw his potassium was high. They decided to lifeline him to indy by helicoptor. My heart sank as I watched them load him up and fly away then it was a mad dash to riley in indianapolis.It turned out it was just dehydration and after 24 hours we were allowed to bring him home. So in the end all is well and we are happy and playful again. I will be updating again as we are headed to riley for a ton of appointments in a few weeks. have a great 4th !!!!

9 weeks

Well the last few weeks I have missed my updates as things have been completely uneventful. Lane is now nine weeks old and weighing in at a whopping nine pounds. He is really chunking up!!! He turned two months old just a few days ago and that was a rough day for mom. All is well, still on the feeding tube. We go back to the dr in July. Lane has been battling a cold but I think we are finally getting things under control. Roger and I will be celebrating our one year anniversary on Sunday. What a first year of marriage we have had! Here are the late but promised pictures........

he was just sitting with his paci like this lol

mommys paci baby

in the bath

!!!!!!

sleeping

with daddy

with his great great gran and pampa

my little guy is chunkin up

Lane and mommy

7 weeks

I want to apologize for the late update but i have some news so it's a plus i waited. On tuesday lane turned seven weeks old, wednesday we went to see his pediatrician. Lane is weighing in at eight pounds nine ounces and going strong. he is getting so big!!! i dont know how people have babies this size...he would never have fit! On thursday I met with a developmental therapist and speech therapist. They both said Lane looks amazing and is doing better than they had ever expected. He is on track developmentally and his physical therapist said she will be back in three months but highly doubts we need her until lane is around ten months old. She assured me he will walk and may not even need therapy to do so...just some ankle braces. She said she really thinks he will crawl on his own and no problems sitting! I am so excited at this great news. Lane is really growing into his red headed temper. I thought his hair would turn blonde but so far it is still a bright red! He has become fascinated with my face and always has ahold of my shirt or necklace. His pulmonary doctor called yesterday and said that his last sleep study was just now read and Lane has no sleep apnea no more which means he can come off his monitor but I have still put it on him at night as I sleep better knowing he is breathing..... July thirteenth and fourteenth we will be headed back to indy to see a ton of doctors including our first visit to the spina bifida clinic and another  swallow study. Well thats all I have for an update now....i promise i will add more pics just have to find time.