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.....
Sunday, May 23, 2010
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
Monday, May 10, 2010
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
lane and mommy
lane in his first pair of pants
sleeping like his momma my little angel
Tuesday, May 4, 2010
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
peeking at mommy
snoozing in his bobby