Tuesday, April 27, 2010

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


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....

Monday, April 26, 2010


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.

Saturday, April 24, 2010

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!

Friday, April 23, 2010


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!!!

Thursday, April 22, 2010

good news

Today was a good day. Lane got to wear his first outfit and I will put that picture on as soon as i get back to my computer. He looks to cute and soooo little dressed. His IV came out today which is good, just one less cord attatched to him. He had a kidney test and that turned out really well. The bottle feeding didn't take...he just kept spitting it out. We have to work on that some more. The highlight of our day was finding out they are gonna let us go home next week. We have a few more tests and Roger and I have  to learn a few more things and they are sending us home early in the week. We have to go home with the ng feeding tube. I'm so excited. Well I will add the pics when I get back to the RM house.

Tuesday, April 20, 2010

more care

today was a pretty uneventful day. We are still waiting on one genetics test so please keep praying all will turn out well...though things are looking better everyday. Lane finally got back on full feeds this afternoon...he wasn't taking all of them since his surgery. Tomorrow we are gonna start working on the bottle, but the doctors warned me that he will most likely have problems with aspiration. They are also gonna start kangaroo care tomorrow. it is where i will hold him with skin to skin contact. this is to help my milk come in as i am going to try to breast feed. They are also gonna work on non-nutritive sucking. I had never heard of this but it teaches him to go to breast without feeding fully while trying to work out his sucking problems. Its amazing the things they do around here. Roger and I started doing Lanes catheter's today. I started the morning by doing it and it was so much easier than i had anticipated. Roger did his afternoon cath and did quite well. I hate that he has to be cathed every three hours but hopefully by the time we go home he wont need it or at least not as much. Well it is late and i need sleep. I will try to do better tomorrow on a more thorough update! :)

Monday, April 19, 2010

moving forward

Things are going good today. Lane had his surgery and that went well. He was still groggy tonight but he has had such a long day he needs his rest. Rogers dad is staying at the hospital which puts my mind at ease so hopefully i will sleep. My body is nearing exhaustion and i know i will not heal and get better without rest, but its so hard to be away from him. This week we start working on all the little things that are keeping him from going home . Tomorrow we start learning to cath him and he is suppose to start trying to bottle feed. I hate that he has to be cathed right now but only time will tell if that is going to be permanent. We are praying it is not. I handle the cathing better than roger, but he will do fine...he is great with him in every way.  We also will be working on keeping his temperature so he can move from a warmer to a crib. There are some other things but from what i hear roger and i will be doing his complete care while we are there very soon. it is very late and i must sleep so i am going to add some photos and head to bed. i will be posting tomorrow.

with mommy

peeking..isnt he cute

looks big for a five pound baby

he loves his binky

during bath he looks scared but his eyes r open


So sorry my updates have been few and far between...i have discovered that weekends are going to be rough on us and i may not update much until the week begins again. Lane is doing really good. He is taking his feeds really well and they keep increasing the amount. Hopefully we  will be able to start bottle feeding this week. Roger and I have been participating in Lane's care more and more every day. Yesterday we gave him a bath and started caring for his cuteous subplasia. We are still doing diapers, temp, oxygen monitors, and other small stuff.During his bath today roger was holding him up while I washed it and Lane thought it was humorous to poop in his Dad's hand. I laughed so hard! We are praying that he takes off on his feeding so we can come home in a few weeks. He is still not holding his temperature, which is going to be a problem for us to go home so im hoping that he starts after we get his shunt in. Roger is doing so good with Lane, he is the best dad and husband anyone could ask for. Right now Lane is in surgery to get the shunt put in. Please pray for him. It was one of the hardest things I have ever had to do this morning as I kissed him goodbye and watched the nurse take him in the operating room. No mom should have to feel the way i did just then... he is only six days old! It is hard to think about what he has to go through...he is so strong. I'm on a hospital computer right now, but when we get back tonight I have pictures to add. It is amazing how much he has changed in just six days. Well I must go to the waiting room to wait for the nurses to come update on the surgery. I promise to do better updating. :)

Saturday, April 17, 2010

Day 4!!!!

Things are really starting to look better. Lane is doing so good. The neurosurgeon was just in and said she is "pleasantly surprised" with how well his back is healing. She really wasn't sure it would turn out well. Lane is right now getting more fluid drained off of his head so that everything stays stable until his surgery on Monday. He is tolerating his feeding really well and hopefully we can start working on the bottle after he gets his shunt in. Roger and I have had the privelage of being able to start helping in his care, which I think has really made us both feel good. We are doing diaper changes, temps, and helping in the feedings. Daddy is sure having fun with those poopy diapers! We have so far been able to hold him pretty well whenever we want, and that is such a blessing. We are really getting some opportunities to bond as a family and it's amazing to feel the love netting in between the three of us. As for Roger and I, we are so thankful to be here. We got a room yesterday at the Ronald McDonald house just a few blocks away from the hospital and it is so nice to have someplace to call home for the time being. The house itself is so nice and homey, we have a place to cook, store food, etc. There is also a house in the hospital and we have been going there to eat. Places bring in dinners quite often and we have been enjoying the generosity. People are so nice around here. It really makes us feel good to be here, which may sound crazy but is very true. Lane is getting the best care possible and our family is doing great. I hope to update with more pictures soon but right now I'm going to go hold our little angel.

Friday, April 16, 2010


So I will let you in on our worry for the past few days now that it is over. They told us that because Lane had birth defects they strongly suspected he had a chromosome problem. They were certain that our precious little guy had trisomy 13...the prognosis for this is just awful, only giving him about six months of life. Well guess what doctors, the tests are back and our little boys chromosomes are perfectly normal! His defect is just spina bifida. They worried me for no good reason. I am discharged now and we are staying at the ronald mcdonald house. i dont have much time now but i will update in a few hours, just wanted to share the good news real quick

Thursday, April 15, 2010

Day 2

So today had many ups and downs....started off with some hard stuff for us to swallow and we were feeling pretty down. Lane had some of the fluid drained off his brain in hopes of preventing damage until his shunt surgery on Monday. We spend the afternoon with him and it really helped raise our spirits. I got to put his diaper on and Daddy and i worked together to feed him. He has the iv's out of his feet so tonight we get to put socks on him! And the best present of all.............WE GOT TO HOLD HIM!!!!!! He is doing great...swelling is down today. You can see in the pictures from yesterday to today. It was the best feeling in the world. Pictures are posted below. We should have some test results back tomorrow so we shall see how things are going....please keep us in your prayers.

first time being held

holding daddys hand

Lane today
Doesn't He look good today

Being held for the first time

Daddy holding lane


Please pray for our little boy. I will update with information as it is confirmed....which is why I have not been updating much....waiting for definate information for you all. Lane is having fluid removed from his head right now. Pray that goes well and that he is fine. Thank You

Wednesday, April 14, 2010


For today im just gonna add to this post as things progress...i will put times with everything

7:00 a.m.- Lane is off the vent. He pulled it out, guess he decided he was through with that lol. breathing is perfect and im getting ready to go see him as soon as they get my iv out.

10:00 p.m.- Lane is doing good, i on the other hand have pushed myself too far and am in worse shape than i should be. I hate that i did this to myself and now i cannot go see him when i want to...i feel like im not bonding with him enough. Dr's gave me a good scare. We are waiting for some tests to come back to try to find out why he has the problems he has. He started a feeding tube this afternoon and is doing really well on that. They are cutting back the sedative drugs. We are waiting to see when they are gonna do his shunt surgery. I will update again soon. Sorry its taking so long but its been a rough day.

Our Miracle Has Arrived!!

We welcomed our precious angel yesterday morning. Daddy watched as they pulled our baby lane out into this world, his face was amazing to watch. Lane Payton Deisher came to the world weighing in at 4lbs 12oz. I do not know his length just yet, but am hoping to find out soon. He met the world butt first in the breech position with the cord wrapped around his neck. They rushed him straight to the "island" which is a room made to stabilize him, and I did not get a glimpse of him then. They finished the surgery, Roger stayed with me during this time, then took us to recovery. After about twenty minutes they brought Lane in to meet us for the first time. He looked like a perfect angel, all wrapped up in plastic, the worlds greatest present! His head is mildly swollen due to the hydrocephalus, but that will go down with the shunt surgery. Our precious little guy has big blue eyes and RED hair. I have not seen his hair clean yet, but his Daddy assures me its a strawberry blonde/red color. The doctors have not given us a prognosis yet. His breathing is excellent and his apgar score at birth was a 9 out of 10. He is on the ventilator for now because of his surgeries, but may be off that by this afternoon. He had his first surgery to close the lesion at 1:34 yesterday. He was only a few hours old then. The neurological part of the surgery went very well, but the skin was very difficult for the dr to pull closed because he is so tiny and the lesion was much larger than anticipated. They may have to do a revision surgery if the back pulls open...I hope and pray it heals. He is scheduled to have a shunt put in on Monday, unless his fluid on his brain gets worse. He was born with an open spot on the back of his head and they are not sure why or what this is so they are doing some tests to make sure its nothing serious. He has a catheter in right now because of the surgery so we are unaware how his bladder and bowel function are as of right now. He is moving his hips and knees pretty well, and his daddy said he was tickling his feet last night. The doctors told us they didnt think he had sensation in his feet, but we are gonna prove them wrong:) I will update as i know more today but thank you all for your prayer. Lane is the most precious thing in the world to me and all of your prayers got him here safe. I owe you all. Visitors over eighteen are welcome, just let me know when you are coming so we dont get overwhelmed all at once. I love showing him off and have showed his picture to everyone I see. Here is some pictures and I will update later today. Take a look at our beautiful little boy.
Yesterday evening

Meeting Lane for the first time

In Recovery room

Look how tiny compared to my hand!

Lane Payton Deisher

Is this not the most precious angel you have ever seen ? :)                                     

Monday, April 12, 2010

The Last Day

It's hard to belive that today is my last day pregnant. I'm meeting it with feelings of every shape and kind. Looking back this has been a difficult, unusual pregnancy that i should be more than happy to kiss goodbye, but i have embraced it and will be so sad to see it go. I know I will miss having him tucked away inside me..all to myself. LOL. Those little kicks and punches will be a memory I will hold on to forever. It's crazy, as the nurses here call it Stolkholm sydrome, but I'm gonna be a little sad to leave this place. Don't get me wrong..I am SOOOOO ready to go home, but I have made friends with many people here and I know I will miss them....they have been my family the last month here. :)
I was looking back at some of my belly pics and I will be glad to get my old body back. My belly is not over large now, but boy can you tell the difference. lol
6 weeks                                                                     35 weeks

Looking at these pictures I feel I must relinquish the fact that I HAVE gained weight... but the 10 weeks of bedrest have aided me in that. I'm am interested to see how long it takes me to get back on my feet and back to my old activity level....I'm guessing quite a while.
Well, the doctors should be coming in soon to lay down the OFFICIAL game plan for tomorrow. I will add an update to this post this afternoon to let all of you know exactly what that plan shall be. God Bless!

Sunday, April 11, 2010

2 days to go!!!

I can't believe Roger and I will be parents in just two short days! We are feeling every emotion you could imagine right now...excitement, fear, worry, etc. We don't know what to expect although the people here have tried to let us know the best they can, no one really knows how things will be until Lane is born. They did say I have a ninety-eight percent chance of getting a short visit with him before they take him to Riley. The neonatoligist did warn us that he is premature, but she seemed optimistic about his lungs. She really doubts he will need to be intubated, probably just a little oxygen until his surgery. I'm praying so much he had enough fluid during his lung development stage because they warned us if they didn't he could have more problems, but I'm pretty certain it was at an ok level then. They are concerned about his small size, but she said the biggest concern there is temperature regulation and blood sugar, so he may be in an incubator for a while to keep him warm. I wish i could just cuddle him close! They warned us it may be a few days before we can hold him so i will be anxious to see what they say about that. All in all we are simply waiting to see how he is, but it was nice to know what to expect. I'm so ready to get this started and meet little Lane, yet dreading it all at the same time. I will get information on here as quick as possible and hope you all enjoy hearing about our upcoming bundle of joy. :)

Saturday, April 10, 2010


I saw this poem and felt like it really hit close to home so i wanted to share :) P.S. i DONT think i will be a better mom than anyone else...it does say that in the poem

There are women that become mothers without effort, without thought, without patience or loss and though they are good mothers and love their children, I know that I will be better.
I will be better not because of genetics, or money, or that I have read more books but because I have struggled and toiled for this child.
I have sat in the NICU and waited.
I have cried and prayed.
I have endured.
Like most things in life, the people who truly have appreciation are those who have struggled to attain their dreams.
I will notice everything about my child.
I will take time to watch my child sleep, explore and discover.
I will marvel at my surviving miracle every day for the rest of my life.
I will be happy when I wake in the middle of the night to the sound of my child, knowing that I can comfort, hold and feed him and that I am not waking to a nurse taking another temperature, an alarm going off, another round of meds or because I am crying tears for fear of the unknown.
I will be happy because my baby is alive and crying out for me.
I count myself lucky in this sense; that God has given me this insight, this special vision with which I will look upon my child that my friends will not see.
Whether I parent a child with physical challleges or medical issues, I will not be careless with my love.
I will be a better mother for all that I have endured. I am a better wife, a better aunt, a better daughter, neighbor, friend and sister because I have known pain.
I know disillusionment as I have been betrayed by my own body.
I have been tried by fire and hell many never face, yet given time, I stood tall.
I have prevailed.
I have succeeded.
I have won.
So now, when others hurt around me, I do not run from their pain in order to save myself discomfort. I see it, mourn it, and join them in theirs.
I listen.
And even though I cannot make it better, I can make it less lonely. I have learned the immense power of another hand holding tight to mine, of other eyes that moisten as they learn to accept the harsh truth and when life is beyond hard. I have learned a compassion that only comes with walking in those shoes.
I have learned to appreciate life.
Yes I will be a wonderful mother.

Author Unknown

Weekend :)

Wow, I was just looking back at some of my older posts and saw that at the first ones I was so excited to have only sixteen days to go....now we are down to three. The last weekend before we become parents has started off on a good foot and I am so ready to get through it. Heart monitor was great this morning and the doctors have approved for me to get out and about today. I'm hoping for some tasty food and a walmart....we shall see. I know we will be stopping somewhere as daddy HAS to find some "It's A Boy" cigars to hand out on Tuesday. He is so excited to be a dad!! Lane and I love him so much....he has been so supportive through all of this, staying by my side every day and worrying himself constantly. I will say that his medical terminology has much improved since we started this journey!

As for my quest of the day, I am hunting down nursery books! A music therapist is coming on Monday to make a CD of me reading so they can play it to Lane when I'm not there. I love that he will be able to hear my voice, as I have been worried sick about not bonding with him right off because of all the surgeries and such. I want him to know mommy so bad, yet I do know its going to be nurse after nurse at first... but as soon as they uncuff me from this jail they have had me at for a while now they won't be able to kick me out of the NICU.

We did find out that our dear resident Dr. who has seen me every morning bright and early at 6:30 since we arrived here is leaving on Monday! Thats such a disappointment that she is missing the delivery by 1 day, but thats ok...she really needs time off! I have discovered that medical school is not for me through her...way too much commitment. LOL

I believe  I shall close on that note and wake my husband so we can start getting ready to get out of here. I have to pack up a bunch of stuff to send home too! Please continue to keep us in your prayers that the next few days go by worry free and Tuesday we have an easy delivery. Not that a c section is hard on anyone but me...LOL! God Bless you all and you shall be seeing our baby soon!

Friday, April 9, 2010

New Delivery Day!!!!!

The delivery day has been moved up!!! Because of our very low fluid levels the doctors have decided to deliver our little guy on Tuesday April 13th. Only four days away! We are so excited to meet our little guy and finish this short pregnancy section of our lives. I will keep updates until Tuesday, but may not update till Wed. on his conditon. We are scheduled for c-section around 10 that morning and our little guy will go straight into surgery after birth. They have said the surgery could take up to six hours. Shall we get our five pound baby?? I'm guessing him at four and a half...we shall see who is right. Roger and I are exstatic and cannot wait...little sleep will come our way between now and then I am sure....so much to do! :)

Thursday, April 8, 2010

Thank You

I wanted to take a moment to thank everyone for reading this blog and commenting. The comments really show how much people care and are interested in what our family is going through. Every prayer, thought, and concern is much appreciated. I hope each and every one of you are as blessed and thankful as my husband and I are. Sometimes life is hard but the people in it help you get through the hard times and all of you that are taking an interest and care are helping us through our trials. Again thank you so much, I hope to somehow return the kindness to each one of you someday.

Belly Casting

Still waiting to see if they are gonna do anything about the fluid level, but i did get my belly cast today. I'm ready to see the finished product...it still needs sanded and painted. I have attatched some pictures so you can see too...

Ultrasound !!

So we had another ultrasound today to check fluid levels and dopplers. I'm waiting on the doctors to come tell me how his dopplers looked as the tech did not tell us and I cannot tell based off the numbers. It looked iffy but again I'm not a professional so i will just wait and see. His fluid level was down again...only 1 today. Again waiting on the doctors to see what they are gonna do....I'm guessing nothing since thats their usual plan. Maybe they will just decide to deliver next week...it would only be a few days earlier :) I'm feeling great today which does not compliment the weather :( My incubators meeting starts in half an hour. I'm excited...I love talking to all the other moms in here. Well it's hard to believe we have been here a month already and it is almost gonna be bittersweet to leave. I have become quite close to a few of the nurses here. I will update later today if the doctors decide to come talk to me! Only 11 days till we meet our baby boy :)

Wednesday, April 7, 2010

Boring Day!

It's been a boring day so i have drug my feet to post. I walked to Mcdonalds today which was a major accomplishment, its the farthest i have walked since being here. i started some bedrest excercises which roger thinks is crazy but he gets a good laugh out of watching me. i know its a little late now to start excersing but it makes me feel better about myself. We get an ultrasound tomorrow and i get to go to the incubators meeting. will post more tommorrow. only 12 more days!!

Tuesday, April 6, 2010

Rough Night, Hoping for a Better Day

Last night was a very rough night. Started having chest pain before bed and tried to sleep it off till about 4:30 when i could not stand it anymore. We had blood work and an EKG which turned out normal, thank goodness. Hoping it's just a flu bug or something of the sort. It looks like its gonna be nice so im gonna soak up some sun and hope to feel better. Our little boy only has 13 more days of cooking to do!! Can't wait to see him:)

Monday, April 5, 2010


We had our last growth ultrasound today. Our little guy is weighing in at four pounds now!!! He is still behind a few weeks but we never thought he would be that big! His fluid was still a five which is what it has been. It's amazing it can be that low and he still keeps going. Umbilical dopplers were still the same, I am not real sure about how they are measured so I dont have numbers. I know they are high but again not getting worse. Roger and I got to see Lane take practice breaths during the ultrasound, so sweet. It's funny he hides the lesion on his back, they worked hard to measure it but he just kept it pressed up against my bladder, he has to be stubborn in one way every time. :) Two weeks from today Roger and I will be mommy and daddy. I'm so excited, yet very scared. I know it's not gonna be easy at first not seeing him and him having to go through so much, but I can't wait to see his face and know I actually got him here ok. It's beautiful outside so I'm gonna try to drag Roger out. Only 14 days to go!

Sunday, April 4, 2010

Happy Easter!!!!!

Happy Easter Everyone. We had a wonderful day today. Thanks to vergie and denise who hosted Easter dinner at their house this year. We were given a "pass" to leave the hospital for the day and enjoy our Easter with our family away from this hospital room. The food was Wonderful and i enjoyed sitting outside watching the kids play. It made me ready to go home :) I have been thinking about all the things i have to be thankful for. God has truly blessed me, I realize now that even when it seemed like he was punishing my family and I, he was just working his magic. Sometimes it's the things that seem the worse that turn out to be the biggest blessings. Lord thank you for all you have given me...family, friends, and everything. Hopefully the next two weeks play out simple and we have our little guy in 15 more days!

Saturday, April 3, 2010

Excited for Easter Weekend

Feeling a good weekend this weekend. Today mom and grandpa are coming up and bringing us some cracker barrel...yummy!!! The closest thing to home cooked food i have had for a while. Our nurse last night was the best one yet. She taught us so much stuff...like what to do if his heart rate drops to keep from having an emergency delivery. I really liked her and she reminded me of Frankie, Hussey's mom, because she was from Germany too :) A little piece of home! The weather was beautiful yesterday and I am hoping today will be much the same and I will get myself outside. Tomorrow is going to be Great!!! I'm so looking forward to a few hours away from this hospital, and a home cooked meal with some family. It may just be the best Easter yet. The countdown is on now.......16 DAYS TO GO!!!!!!!!!!!

I also want to add that a friend of mine I have made while in the hospital is in the need of thoughts and prayers. After being here two months, she delivered her baby Tuesday at 35 weeks. The little one weighed in at a whopping 6lbs for one so early, but was having a lot of problems breathing and was in critical condition. If you would, just send a few words to God for her to be able to bring her little one home soon, she has been through so much. Prayers have helped us and I know your prayers help others too. Many thanks :)

Friday, April 2, 2010

Our Story

I want to start by telling you we started this post to inform and update everyone on how our family is progressing. Married in June of 09, we found we were beginning to grow our family in August. This was exciting news although slightly stressful because I had just began nursing school. We made it through Christmas with no complaints. After Christmas, we started to realize that our world was starting to be turned upside down. A few days after Christmas we went for a routine 20 week ultrasound and were so excited to find out the sex of our little one. It turned out that Daddy was right and we were to have a little boy, but the Dr wanted us to see a specialist as he saw excess fluid on our baby's brain. We were upset and scared, but were assured it could be nothing. Two weeks later, at 22 weeks pregnant, we traveled to a maternal fetal specialist to get a level 3 ultrasound. We found out then that our precious baby boy had spina bifida. We recieved tons of information and had an amniocentesis done to check for chromosomal abnormalities such as down syndrome. It was a painful procedure and involved a needle being inserted through the stomach into the uterus to withdraw amniotic fluid. I was terrified because there is a risk of miscarriage from the procedure but was assured it was the best thing to do for the baby.

The amnio results came back normal so after much consideration we opted to try to have prenatal surgery to try and correct the fluid on the brain before birth. We were flown to the Childrens Hospital of Philadelphia for three days of intense testing to check for eligibility. After the three days we were told our baby had other problems making us ineligible for surgery. We were devastated and came home feeling hopeless.

When we returned from Philidelphia we went back to the doctor around 26 weeks and were told our baby had Intrauterine growth restriction and was measuring behind in size. Our umbilical cord blood flow was also abnormal. I was put on bedrest and for the next 5 weeks monitored our little one as he got worse and our fluid level started to decline. At 31 weeks his cord blood flow became dangerous to him and his amniotic fluid level dropped to severely low levels. We were sent to Indiana University Hospital and have been here for the last three weeks. We are monitored three times a day and although things are looking good now they could change anytime causing a need for immediate delivery. Our baby who we have decided to name Lane Payton, will be born no later than April 19th and shipped to Riley Childrens Hospital to start repairing his spina bifida.

I will be updating frequently.....thanks so much for your time :)

All About Spina Bifida

What is Spina Bifida?
Spina bifida is a birth defect that involves the brain and spine. There are three types of spina bifida. Spina bifida occulta is the least severe and many people never realize they have it. It effects the vertebrae in the back with little to no symptoms. Spina Bifida Meningocele involves the bones and tissues but not the actual spinal cord. Spina Bifida Myelomeningocele is the most severe and involves an open spot on the babies back that has nerves and the spinal cord showing through. Surgery after birth is very important for this kind of spina bifida. Our little guy has myelomeningocele as his nerves and cord are pushing out of his back. Most people effected with this type of spina bifida also have hydrocephalus.

What is Hydrocephalus?
Hydrocephalus is common in people living with spina bifida. It means that there is fluid on the brain. This happens when the fluid filled ventricles in the brain do not have a way to drain causing a buildup of fluid. This is commonly due to something called an Chiai II malformation where the brain is pulled back and down "corking" the back of the neck so that fluid may not drain down the spine. To correct this problem a shunt is put in the brain and ran down into the stomach to permit the fluid to drain off the brain.

What does Spina Bifida effect?
Spina bifida effects every person on different levels. Physical disability ranging from mild to paralysis is the one thing every person deals with. Along with the physical problems (e.g. walking), bowel and bladder control, sexual function, and latex allergies can also be a concern. Spina Bifida does NOT effect intelligence, although attention disorders tend to be more prevalent in people with spina bifida. People with spina bifida vary so much it is hard to say how a child will do until they are born although the lower the opening is on the back, the better the prognosis. Our baby has a low lesion and we are told to expect weak ankles probably needing ankle braces to walk, possible loss of sensation in the feet, and there is a very small chance he could have bladder problems. This is all subject to change as damage to the exposed nerves is very possible until the lesion is closed. For more information on spina bifida i like the website www.sbaa.org

What Causes Spina Bifida?
The exact cause of spina bifida is unknown. It occurs within the first 28 days after conception and has not been linked to any specific factors. The one thing that researchers have found is that a folic acid deficiency increases your chances of having a baby with spina bifida. It is encouraged that women trying to conceive take folic acid supplements and this could reduce the chance of having a baby with spina bifida by more than 70%