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.

six weeks....

Lane has made it to the six week mark!!!! I meet today with joy for my miracle baby and sadness that time is flying by so fast. Looking back on the past six weeks my life has been full of smiles, laughter, hugs, kisses, and sadness, tears, and depression. We have brought our beautiful baby into this world, then told we only had at most six months with him here on earth. Lane has defied all odds and proved so many doctors wrong. From not having trisomy thirteen to kicking his little legs in a fit a rage, he has proved himself stronger than any of us could ever be. As I look over at him now tears come to my eyes at just how precious he truly is. A true angel sent to me straight from God. I count myself lucky to be the reciever of such an amazing gift. I'm not sure yet why we have been through our trials and tribulations, but I know there is a reason far beyond me and I will know someday just what God had planned. It has been a roller coaster ride and one I would gladly take again. In the past six weeks we have been on the recieving end of love, prayers, and generositiy. I want to thank anyone who helped us in anyway, be it a small prayer, a kind smile, or a contribution. Lane has grown so much from the tiny, sick little four pound twelve ounce baby boy to the seven and a half pound happy little guy he is now. He smiles and has a personality completely his own and he always makes his mama smile even when he is mad and kicking everywhere. If he only knew that  I live to see those litttle legs move:) He has started grabbing anything his little hands get a hold of, especially mommys hair.
  Last week with my quick update I came to realize that our trials are far from over. I went to Indy on thursday and friday with my mom truly expecting to be told my son was normal and needed no special interventions anymore. I was sadly mistaken and it hit me really hard. As mentioned in the last post he has serious sleep apnea, his back wasn't healing as well as the doctor wanted, and he is aspirating formula into his lungs when bottle fed. By the time I was headed back  I was feeling really down and depressed. Friday reminded me of the serenity prayer. I said this prayer constantly from the time I found out I was carrying a baby with spina bifida to the time I brought our baby home. For those who don't know it, here it is, it's my lifesaver and reminder I am not the one in control of my life...God is.
God grant me serenity to accept the things I cannot change,
courage to change the things I can, and
wisdom to know the difference.

I want to ask you all to say a prayer for a family I was in the hospital with. After several miscarriages she finally became pregnant with twins and made it past her first trimester. At sixteen or seventeen weeks her water broke on the baby boy. She stayed in the hospital for eleven weeks, and bedrest a total of eighteen weeks when she finally had the twins. The girl is doing good but the boy passed away last week due to complications of underdeveloped lungs. They are in my thoughts and prayers and hopefully yours too.

Well I'm going to end this post now and put some pictures up later this week. May God bless you all.....

dr.....

well the dr appts on thursday and friday could have went better than they did. thursday Lane had a sleep study and that was just awful. they put tons of wires on him and he hated it. you could only see his mouth. that was a really hard three hour test for both of us. friday we found out he still has a lot of apnea. his apnea score was in the twenties and it was suppose to be less than five. his neurosurgeon doesnt think his back is healing fast enough so we have to put medicine on it now. he had a swallow study and that was so so. he still cant have a bottle because he is swallowing but getting a baby bit in his lungs. we go back in eight weeks for that test. it was a disappointing trip but hopefully next time will be better.  he is growing good weighing seven and a half pounds now. well thats just a baby update for now but i will do a tuesday update with more info
!!!!

Growing....

Wow I can almost cry thinking my little guy is already five weeks old today. The last few weeks have flown by way to fast. This week has been full of progress. I got registered to start back at school in August. I am so excited...I really love school. We have almost finished our trailer and are waiting for the electric company to move in. Lane is doing absolutely AMAZING. He makes little changes everyday it seems. He has started grabbing hold of everything his tiny fingers touch...including his feeding tube! He also is focusing on stuff a lot better than he had been. He really likes his grandpa Rogers big screen TV. He rolled from his side all the way to his belly the other day..it's not a complete roll but it counts for something!    It is amazing to watch his little legs kick when he is throwing a fit. Most parents feel exasperated in the middle of those big fits, and part of me does too, but I am amazed at my little boy for kicking and reacting to whatever it is making him mad. I love how much he has proved all the doctors wrong. I am so happy he is developing on time since they thought his brain was underdeveloped. He is doing so good and is truly a little miracle in every way. I take him everywhere now so I can show him off! LOL! On Thursday and Friday we are headed to Indy for a ton of doctor appointments and tests. The two big ones are the sleep and swallow study. The sleep study will tell us if he can come off the apnea monitor and the swallow study tests if he can bottle feed. We are praying so much he passes both and gets off his feeding tube this week. Please say a prayer for good results. Thanks and God Bless you all!

sleeping

he sleeps with his hands by his face

wide awake

4 weeks

ok...i have decided to schedule in blogging time to make sure i get this updated. i am going to make sure i update at least every tuesday. if something is going on during the week i will update more...but expect an update every tuesday. Tuesdays are the days lane turns a week older, so from now on tuesdays are the day. it is hard to believe that lane will be four weeks old tomorrow. yesterday was his actual due date and i have had him almost a whole month already! he is doing so good. he has started smiling a lot the last couple days. it is the sweetest thing to see. he has also been more awake the last two days. please send a little prayer up that the shunt is still working. his head size was bigger today so his nurse is coming back wednesday to remeasure. i am so hoping all is well and he wont have to have another surgery. i dont know how i could bear to send him back to the operating room. he is growing a lot, weighing in at 6lb 11oz today. Lane is still moving his legs really good!! I'm praying they continue to move. We are suppose to start physical therapy this week. I have my serious doubts that our little guy has feeling in his feet :(  Lane went to the neurosurgeon on Wednesday and got his stitches taken out of his back. She was very pleased with the way things were healing. He is now laying on his back and in a regular car seat. We go back in two weeks and then we should be done with the checkups with her for awhile. Well thats all for now so im gonna put up a few pics....sorry the week has been so boring but its a good thing for us.

wide awake in his swing

swingin

lane and mommy

lane

lane in his first pair of pants

sleeping like his momma my little angel

3 weeks old!

So we did make it home last wednesday as many of you have probably figured out by the fact that my postings quit. Being home is so nice. I had missed this place so much. Two months of no grass, trees, or open spaces left me very appreciative to the place I call home. I have very much enjoyed driving around in the country. Yesterday my grandma watched Lane and I took the backroads home so I could enjoy the wide open fields and beautiful country. We tend to forget what a beautiful place we live in. Now...on to Lane which is what you all really want to hear about. :) He is doing good and growing leaps and bounds already. It is so hard to believe that our little man is already three weeks old. It seems like it was just yesterday I was sitting in the hospital waiting for his arrival! He weighed in at a whopping six pounds even today. We met his home health nurse who was very nice. Tomorrow we are headed back to Indy to see the neurosurgeon and with any luck get the stitches out of his back so he can lay on his back and be in a normal car seat. The feeding tube is going well and everyone is getting comfortable with feeding him. Lane sure does love to pee and poop everywhere when he gets his diaper changed. lol Roger went back to work yesterday so Lane and I are trying to get our own routine together. He is getting way spoiled. He loves to be held and knows that a little cry will get him picked up right quick. Lane is showing us already he is going to be quick to learn manipulation. He will be sleeping in his bed quite content until I walk in the room and say something then he starts fussing. He is so gonna be a momma's boy! The shunt seems to be working well and his back has healed great. Every day we get closer to his due date he does more baby stuff. He has started smiling and grabbing fingers( and his feeding tube) which is so cute to see. I an really gonna love to watch him grow and do things that the doctors told us he would probably never do. It's amazing how much my love for him grows each day. Well I will attempt to do better on posting. Here are a few pictures of our miracle baby....God Bless.

his hat is always falling off..

two weeks old

at home with daddy

wide awake...lol

peeking at mommy

snoozing in his bobby