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

hoping to come home tomorrow!

so we did not make it home today, but it is looking hopeful for tomorrow. lane is doing good. the test they did on his lungs today looked good. they decided he did not need oxygen. apparently because he is so small his airway gets blocked by his tongue and occasionally "collapses" but it is instantaneous as his oxygen levels never drop and he has no problems taking breaths. he still is at five four so weight gain is going slow. his temp is not staying up very well so we are bundling him up really good. he is on a high calorie formula mixture so hopefully he will chunk up soon. Even though we are going to be coming home it sounds like we are gonna be at the doctors office several times a week at first. this is fine with me. we need to figure out some way to transport him so i dont have to carry him around the stores and stuff. he cannot lay on his back which makes a normal car seat impossible. i guess i will just have to have help if i go anywhere. :) he should be in a normal car seat in two more weeks. his back is looking really good and the shunt is working well. his neurosurgeons are very pleased with the way he is doing. we are still waiting on the final genetic tests so please keep praying that comes back ok. well im headed to bed for my last night of sleep....here are some new pics...hope so see you all very soon! well pictures are not loading i will try again in the morning

grrr.......

well its not looking good for us arriving home today. lane didnt quite pass his sleep study so now we have a whole slew of new doctors coming in to check his lungs and stuff out. so we are still hoping for today but reluctantly planning on tomorrow. i was pretty upset, but it is best to make sure he is ok before we go i suppose. the good news of the day WE DON'T HAVE TO CATH ANYMORE. Little Lane has started peeing in his diaper. This is really good news. So hopefully we will just be taking home the ng feeding tube and discontinuing it soon too. We may have to go home on oxygen. We are praying that is not the case, but time will tell and hopefully we know that this afternoon. The nurse just told us lane has to have a test where they put a scope down his throut to look at his lungs and make sure they look good. Poor little guy, I'm so ready to get him home where he won't have to deal with all this crap. Well hope to see you all back home soon....

.....

so today is the final tests before we get to go home. we are hoping to head home today but it will most likely be tomorrow. lane just got out of his sleep study and the results of that are not back yet. i am waiting for his dad to come out so i can go see him. im feeling pretty stressed today trying to get everything done and make sure i have all the information i need. the car seat study is at one so hopefully that goes well. i will update this post with the results later this afternoon.

11 days old today!!

I cannot believe that Lane is eleven days old today. Time is flying by way to fast. Not a lot of new stuff going on today. We weighed him earlier and he is down to five pounds four ounces now. I wish you all could see him. He is the most precious little angel you have ever seen. He sleeps with his hands in a praying position right by his face...it is so cute! At two I am suppose to insert his ng tube for the first time. We have to learn that before we are released. We are getting so close to coming home. Only a few more things and we are ready to roll. It is looking like Tuesday or Wednesday. I cannot wait to show him off to all of you. :) We are still waiting for the last genetic test so please continue to pray for that. I also ask that you all send up a prayer that his sleep study goes well on Monday so he doesn't come home on an apnea monitor. I know your prayers work and appreciate so much all the ones you all have already said. You should see the carseat Lane is coming home in. It is called an angel rider and is made so he can lay on his side in the car. It is so neat. I am a little nervous about bringing him home. It is not going to be like having a healthy baby at home. We still have to cath every three hours and do his ng tube. We also will most likely be waking him up to eat instead of the other way around. It's amazing but his prematurity has had some effects on him. Being only four weeks early I had not expected any effects. The prematurity could be causing the swallowing issue with bottle feeding and he has to be snuggled or his body temperature drops. It also is the cause of him sleeping through his feeding. I think that is all I have at the moment but i will let you all know how the ng tube goes this afternoon. Thanks for all your prayers. God Bless you all!

pictures!!

Good day today. Lane got circumsiced which he did not appreciate. Roger and i had to take a class about infant cpr and learn how to use an apnea monitor. Overall it was a great day even though we were shut out of our module for several hours. Things are still moving towards coming home. We are so ready. I will be so glad to not have to leave my baby at the hospital. Here are the pics i promised. I cannot believe that our little guy is ten days old now.

10 Days old

10 days old

9 Days old in his first outfit ever!!

8 days old his hat is falling off

look at that red hair!!!

cutest baby ever!!!