What started this whole mess!!

Friday, October 11^th, 2013 around 7:30pm our lives changed. We had started watching a movie as a family and had turned on the oven to preheat, we were going to have some frozen pizzas for dinner. Marty, my husband, was on the couch with our youngest and felt a discomfort in his right shoulder, so he decided to readjust his position. The next thing I knew, he was kneeling on the floor, gasping for air. After a few minutes of calming him down and trying to assess what was the cause of this and what “this” was, we all dressed and climbed into the car for a trip to the emergency room. I knew some of what was going on was a panic attack, which was in response to the not being able to breathe. OK, I get that part, but why was he having trouble breathing? Years earlier, around 12-15, Marty had a “BLEB” (bubble/blister of lung tissue, like a weak spot on a balloon or inner tube) pop on his lung that caused a pain similar to pulled muscle, just more intense. My first assumption this night was that was the case again, just the pain was making it difficult to breathe.

The car ride was difficult for him, the pain increased with the position in the car and vibrations of the road. We got to the Emergency room and they sprang to attention because he was having chest pain. We knew it was not heart related but they have to check that out first because of the possible complications. Again, fine let's go. So, they take him back and then ask me to fill out a slip of paper that just asks for his name and age. I sit with the kids in the waiting room and start trying to decide what to do with them. I made a call and got a church member to come get them. Got a chance to go back talk to Marty for a minute, tell him what the plans are for the kids and bring them back to see him for a minute before sending off.

All the immediate heart tests are negative and the staff have calmed down. Now we wait for a chest x-ray. The Doctor thinks he can go to x-ray, he seems healthy enough..... he's been given some pain killers and aspirin as well they had him on oxygen. Soon after getting back from x-ray the Doctor comes in to tell us, the lung is partially collapsed and it will require a chest tube to be inserted. He will also get an admission to the hospital as long as the chest tube is in. The chest tube will stay in maybe a day or 2 for the lung to heal up, the lung Surgeon will tell us more the next day. The process of getting information and then waiting for it to happen is frustrating. They give you the information, then take 1-2 hours to do the action. I got to sit/ stand in the room and watch the whole procedure, interesting and I'm not squeamish when it comes to other peoples blood, only my own. We then sit around waiting for another 1-2 hours before they come to take him to a room. We live only 10 minutes from the hospital, we entered the Emergency room before 8pm, yet it was going on 2am before he was settled in a room for the night.

I finally leave him settled in for the night and go pick up and kids. I then need to stop and get gas, find a drive thru for myself and get the boys home and to bed. Up the next morning and packing things for Marty, he's texting me a list and adding more! I get things loaded up and we're off to see him. He already has a visitor, another church member that I had called the night before, and seems to be doing well. They had taken him down for a CT scan of the chest and lungs, the lung Surgeon is supposed to be in later to talk. The boys take off with a church member to hang out with a friend and we continue to entertain visitors for church while waiting for the Surgeon.

Early afternoon, the Surgeon comes in. Yes, it's a BLEB that has popped and caused the hole in the lung. Bad news, the CT shows more that could cause more damage and he wants to do surgery to remove them. So, we now schedule surgery for Monday morning. They are going to remove these BLEBS and rough up the surface of the lung to make it stick better to the chest wall, this will help keep air out while it all heals. Think of 2 pieces of bread and spreading jelly on them, now stick them together so an air pocket can't form between them from the little holes in the bread. A new chest tube will be placed as well. After surgery he will be in ICU for at-least 1 day. Then it will be another 3-5 days in the hospital.

Wait, um did my world just stop spinning??? Yeap, life was just turned upside down. Marty, my rock, my dear husband who is almost always by my side is going to have a major surgery and be in the hospital.

No time to take that all in, at-least no time to let it slow me down. You see, I'm the one everyone depends on. I now need to go make the phone calls while Marty gets some rest. I have to find some lunch, it's almost 2:30 and the cafeteria closes for the day at 2:30. I grab a quick bite, no phone signal so can't make calls yet, so I rush myself. Then outside to call my mom, his mom and his sister. Give the church secretary a call so she can pass the word around there.

Back in to check on him and think about what to do with the kids. What is the polite amount of time to leave your kids with friends without over stepping? What's the best way to ask if someone will help by taking them for a few hours? Are they really willing to keep them longer or are they just saying it to be nice and should I know that? On top of that, I keep thinking of how strong I need to show I am for the kids. If I freak out, the kids will not handle this as well, they need a strong parent to feel safe and protected. I also am the person that never lets anyone see me break. (More on that in a different post!)

I go pick up and kids and grab some dinner. We take it back to the hospital room to have dinner as a family. We all watch some TV with Dad, like most nights, then head for home around 9pm. The next morning, the boys get a ride to church and I am to go have church with Marty, we're going to watch a sermon online. Andy forgets his bag of supplies, the boys are going to spend the afternoon with another church friend, so I now have to run by the church. Of course most folks who see me want to know how things are and whats going on, I talk for a few and get going to the hospital. We have a calm day and I again head out to get the kids and dinner, only to find they are still out eating a late lunch with friends and we make arrangements for someone else to drop them off at the hospital later. So I grab dinner for just the 2 of us and spend some more time alone with my husband. I haven't had this much time alone with him in years! The kids arrive via church visitors and again we leave around 9pm.

Monday morning arrives early, we are up and at the hospital by 6:15am. Our deacon and youth/children's pastor arrive in time visit and pray before we all to head down to pre-op. The boys and deacon to the waiting room, pastor and I with Marty. Short wait time, all the pre-op questions and last check in with the surgeon, it's now time for a last prayer before he goes into the Operating room. Now we head back out to join the rest in the waiting room. We all head down and get some breakfast. Then back to the waiting room. The surgery takes about 2 hours and the Surgeon comes out afterwards to give me a short consult. “It's done, he's doing good. They've got him in recovery and soon he'll be moved to ICU. They'll let you know when you can see him.” And that's about it. This Surgeon is a man of few words, really!

The boys and I were supposed to go to a Pumpkin farm with friends from church but it's rainy and cold out. I call them, the kids can just stay in and play together for the day. So I send the boys off with the pastor, he'll drop them off, and continue to wait for Marty to get out of surgery with our deacon. BTW, our deacon is great and we love him like an uncle. He also co-teaches the boys Sunday School class, so they know him well too!

While the surgery takes about 2 hours, the recovery and moving to the ICU, took another 2 hours! I send our deacon off after we finally get to see Marty. I then go grab lunch and make the phone calls. Marty's parents and sister are going to fly down the next day and stay through Friday. They are going to stay in a hotel, so I don't have to worry about the house being clean. I still have to make all the update calls to them and the rest. I also need to find out what time to go get the kids and what/where everyone was eating for dinner. “Some laundry needs to be done,” that thought flashes through my head as I am dialing the phone, along with the rest of the list that never seems to end.

Tuesday dawns and we again head for the hospital. Today we have brought along things to do because we are planning on staying all day, no going to visit friends. Besides, family is coming. It's a long day, they move Marty out of ICU to a regular room in the late morning, his family sends text messages to let us know they have landed and are dealing with getting a rental car, going to check in to the hotel and grab some food before coming to the hospital. They don't get there until almost 4pm. We all visit for the next 2 hours. They are tired and hungry so they head off before valet parking closes at 6pm. I run out and grab some dinner for us, then the boys and I go home for the night. Wednesday brings more of the same except the family take the boys down for a late breakfast, then they go back to the hotel for lunch and a nap. The Surgeon comes in and removes the chest tube. Marty's level of discomfort seems to be related to the pressure of the tube stuck in his side??? I guess that might be uncomfortable! His family gets back later as the boys and I are heading out for dinner at church.

Thursday brings a new day. Marty has been trying to prove he's well enough for a discharge. See, he has been on the Pastor search committee at church and there is a special meeting that Thursday evening in regards to that search. Once Marty's family arrives and the talk turns to this subject, it begins to spark disagreement. Comments are made that are not polite, some tears are shed and his family steps out for a moment. I make plans to leave, I don't want to continue this and cause any more issues. They step back in and ask to take the boys out for lunch and shopping. Off they all go. The conversation continues, just now through the phone and text messaging between Marty and his family.

Marty also does get the discharge order. But can't seem to find a supplier to get the walker to the hospital. We finally agree to have it delivered to the house and get out!! Drop off the prescriptions on the way home. Get him settled and the walker arrives! Then off to pick up the medications, pain level is high from the travel home. I'm back home in a flash with the medications, he is relaxed. The boys will be returned around 5:30pm, we need to leave around 6pm for the meeting. We're cutting it close but we make it. It's a great evening and Marty is happy.

That night we manage to get him up the stairs to the bedroom. After packing in the pillows around him to make him comfortable, I'm left with a limited space to sleep. Neither of us gets much rest. The next morning I get him settled downstairs and he tells me that his family is coming for brunch, he told them I would cook it! I panic for a minute and then start planning. Pancakes- got enough supplies, little bite-size sausages- got enough those. The the boys decide they want waffles! Ok, still can do. So, got the brunch stated and had a great time. They had a plane to catch so, off they went.

Marty needed a nap, he had decided that he was not going upstairs anymore, so the couch was made comfy for him. I took the boys and went to the pumpkin patch, we did the trip in under 2 hours since I didn't want to leave Marty alone too long. Made dinner that night and started our new lives of Marty's recovery. It was slow going, and he good days and bad. We never seem to leave the house except to take him to a doctor's appointment or church.

Andy had an appointment 2 weeks later at Scottish Rite, it didn't go as planned. It was with Neurosurgery, a Doctor I had never met before but the previous Dr. had left the practice and I didn't care for him anyway. This doctor decided to “tap” Andy's shunt, stick a needle in the reservoir for drawing cultures or checking pressure levels. He didn't like the pressure level, so he wanted us to go to the hospital and get further evaluation and testing done. That is another story, but we ended up staying in the hospital for 2 nights that we didn't need to! In the mean time, I got Ryan doing the cooking and feeding of his dad. Folks from church were great and offered to take Ryan, but he was needed to take care of Marty who couldn't stand long enough to cook, yet.

So we got to talking about how between Marty's hospital bills and now Andy's, our out-of-pocket maximums would now be met and that hernia that he had been dealing with for the last couple of years should be addressed. He was already on short term disability and this way he wouldn't have another stretch of missed work. So we talked with the lung surgeon and got the go ahead from him. Met the general surgeon and scheduled the surgery, 2 weeks after Andy's hospital stay. It was supposed to be a spinal block with a little sleep juice, no full anesthesia, and day surgery. Ended up with the spinal taking longer to wear off and pain that was difficult to control that first night, so he spent the night.

So now I have had one of my guys in the hospital every other Friday night over the last 4 weeks. I'm ready for a break at this point. We make it through the next 3 weeks and break the streak. Marty is now focused on his hernia recovery and the lung recovery is almost complete. In the mean time, the short term disability insurance has only been covering about ½ of his normal wages since we have to pay his employer for our portion of the health insurance. Now the insurance company has decided that Marty should be recovered enough to return to work, unless he has the Surgeon fill out a form. We take it to the Surgeon, he fills it out, we fax it in. Then we wait. About 1 week goes by and we receive a check with a note, “It has been calculated that you should be able to return to work on Dec 20^th. This is the wages for the Dates of November 28^th through December 19^th. Your case has now been closed and should your situation change, please contact us.” That's it! BTW, the form the Doc filled out, “Estimate date return to work- January 15^th.” The letter stating the same came 2 days later with an added line that they would require addition statements from a Doctor if we disagree with their decision. “A note from a Doctor would not be enough proof.” So starts the phone calls, they keep asking for more notes from the doctor's office, they keep sending it to them. So far, I guess the doctor didn't write enough notes to satisfy them. We even got copies of all the records and faxed them in ourselves since they said they didn't get them all. Since faxing in the records, we have heard nothing.

Marty's side a week after the lung surgery.

The other hat that dropped during this whole adventure, Marty's employer informed him that he needed to get his Texas nursing license. Now, we knew that it was needed and dropped the ball on that before all this happened. At the same time, he is completely legal to work under his North Carolina license which is still good until October of 2014. So we start working on it, they then make it clear he can not return to work until he receives the license. That is a problem. The Texas board of nursing can be very slow at issuing the licenses. We sent the paperwork and the fee in November. They cashed the check and sent an email, they had changed the application and he needed to fill out the new one and mail it in. BTW the old form had the wrong fee, we had over paid by $20 but they have a no refund policy! He does that, and nothing. As time gets closer to him returning to work, he sends an email back and gets an automated response, “out of office until January 6^th.”

Because of the disability insurance no longer paying, we push up the Doctors appointment and ask for a release to work. He gets a release back to work for January 7^th, just 2 months after having the hernia repair and 3 months after having lung surgery. So he takes the release and copies of the email into work on Fri before the 7^th, “Anything else I can do, is this enough proof that the Texas license is coming?” Everything looks good and it's all accepted. He meets with his direct supervisor and plan his schedule. Then Monday the 6^th arrives with a phone call, “We've changed our mind. You need the full license. You can not return to work.” So, they have changed their mind. Then on Tuesday, they call and tell him that they have decided to give his position away, but they will find a position for him when he returns. Ok, still a chance to return to work, but maybe time to start looking for a new job. Maybe one that respects their employees and understands when health problems arise out of the blue?

  The latest, we received a certified letter from them. “Since you did not get your Texas license, we are going to accept that as your resignation. We are terminating your employment as of January 20^th, 2014 and any benefits you have, i.e. health insurance, will end January 31^st, 2014. You'll be receiving COBRA information in the mail at a later date.” Again, UMMM WHAT???? So, now because the nursing board hasn't issued the license, he quit? Yet, “We are terminating....” says, they decided. While we already got the idea that he needed to look for another job, we thought we still had a chance if the license came through before another job did.

Now it is late January and the bills are piling up. I have started to ask others for help.... big stretch for me. We are surviving, but I have applied and are now receiving food stamps to help. Not sure where we stand on receiving Medicaid yet, but it's also been applied for. Was told that are car (only 1 car for the family) is worth too much money to qualify for the “traditional” assistance funds. There are some hoops I go jump through to fight that, but is it worth it? Marty has been filling out applications everywhere, and had 1 interview and couple of phone calls, another interview is scheduled for next week. We'll see how it all works out.

It's a LONG story!!

So, it's been awhile since I've done a blog post. It's been over 3 long months. The last time a post went up, it was a series of scheduled pre-written posts. During the time those posts were going up, our life was going down! 

It's a LONG STORY, one of those- "Been There, Done That, Got the T-Shirt to Prove It" types of story's. I am working on a series of LONG posts to help catch you up. The first one is almost ready, may even be later today or 1^st thing tomorrow.

After I get you all caught up, I am working on writing a series about our life events from the past. I have had so much going on, that I started to reflect at how I have handled past issues compared with how I am handling the current ones. I need to write it all out, so I can reflect better and get a grip.  

I know that we have not had a life that came anywhere close to be called “normal” but maybe I can share some insight that can help someone else on down the road. So bear with me, as my posts may start to seem like a big pity party. I am not meaning for it to make you feel bad for me, I am just being truthful to you and myself. Every detail counts as a possible learning experience, so if I leave any out, then I am not telling the whole truth. That's my promise to you and to myself!

Yard work!!!

So, we live in a rented townhouse. We have great space and like our neighbors. The problem is the HOA lawn care. It's awful and has been causing problems with bugs, ants in particular. The last time they trimmed between the driveways was in the beginning of July. The ants have been a huge problem and we have found them attacking dead bugs in the garage so it is safe to assume that any dead bugs in the grass/ weeds are also feeding the ant population. So, we have been treating the ground around the house with any bait stations, but they have become in-effective. While on a shopping trip to Lowe's/Home Depot, Marty purchased a string trimmer. He then spent a few hours cutting all the grass around the house and between the driveway.

Once he was done, I realized that he couldn't get everything really good because the neighbor had some pots with weed growth wrapped around them and making it hard to trim around. So, we left a patch un-trimmed and I talked to the neighbor a few days later. After being told that only 1 pot had a real plant in it, I asked if I could remove them and clean the area more. That started the fun. As I pulled a huge weed out of a half empty pot, I found out, (real quick) all the dirt had been replaced with a Fire Ant NEST! So, I quickly dropped the pot and weed, grabbed the ant/bug spray and soaked it all down. I did this several more times, after stirring up the dirty and pot more. Then I moved the 1 "plant", it was sitting up against the house and had what looked like a dirt piled up on 1 side. Nope, another Fire Ant Nest! So, more spraying and stirring.

Now, I started to find that we needed to do something bigger to control the weeds and the ants. So, I started to dig up some granite tiles the neighbor had put down years earlier, she was hoping to control the weed growth. Then I got out my landscape fabric and went shopping for rocks! The boys and I spent about 2 days and under $50 to clean up the space and cover it with rocks. We even washed the tiles off and re-used them. The color of the rocks looks great, after a good washing!
Yes, I used a fireplace screen to help hold down the fabric while pouring the rocks.


We are still trimming the space between the driveways, even went ahead and cut the neighbors weeds on the other side of their driveway, found another Fire Ant NEST over there, but we treated it quickly. Before the project, I was getting bit at least once per week while just sitting in my garage watching the kids play. I can report now, I haven't gotten bit since we did this work. That's $50 well spent!

Why and How We HomeSchool!

Why do we homeschool?

Because it was the best for our family at the time Andy was supposed to start Kindergarten. We had decided to start traveling with Marty and we could not get Andy into an online learning program. From that moment, we knew we had made the best choice. Ryan has a bit of Dyslexia, mild but has some trouble, and he was not ready to sit and do desk work until around 8 years old. If he had been in public school, they might have labeled him a ADHD kid and demanded medications. He also would have been in trouble a lot. Andy has lots of trouble with his hand writing and creative thinking, he's very logical and likes to follow directions....to the letter!
Both boys get the extra attention they need and I have been able to be creative in finding what helps them each, given their personal limitations. With Ryan, I used games. If he could read a word correctly, he got a chance to shot a basketball. He could bounce around the room, on the couch, as long as he tried to read the word on the flashcard. Not sit at a desk and do desk work. With Andy, we were able to find a handwriting program that worked for him.
Another bonus to homeschooling for us, the boys know what makes a friend a good choice. (or bad choice!) They have learned that they have the freedom to choose friends and have the right to refuse to be friends with others that could be a problem. They also know how to socialize with kids not their age. They both enjoy helping and playing with younger kids as well as sitting back and spending time with older kids. They are learning about age-appropriate behavior and skills. It's fun to watch them change their own actions based on the age of the child they are playing with. I watched Ryan with a 3 year old child at church on Wednesday evening. The little one was swinging around a pole near the beverage table, Ryan put himself between the table and the pole and gave the child an arch to go through. While it made it fun for the young one, Ryan was blocking the child from being able to accidentally bump the table and make a mess. Smart kid!!

 

Even chores can be an learning opportunity.

They also do housework/ chores and know how to grocery shop. My kids are going to be able to live
independently and successfully when they turn 18.I use a chore chart. Each child has duties to do every day and they both have the same chores on different days. Even chores can be an learning opportunity. They know how to do the laundry and help with that every week. With my kids, they learned colors sorting the dirty clothes, learned some counting and pairing with socks. They learned to carry the folded clothes and helped me put them away. They can put a shirt on a hanger and put away sock balls. Now they can fold almost anything and put everything away.
My kids know how to cook some basic things and are learning more cooking skills all the time. They are responsible for lunch almost every day. Either they make it or they are helping make it after planning it. They are learning how to clean the bathroom and already help with cleaning the rest of the house. My kids help with sweeping floors, yes not perfect but when they practice they get better. When younger, they held a dust pan for me or got the broom out for me. I had them practice sweeping in garages, not a big deal if they miss some but nice bonus of having a “cleaner” garage.
They also have a checklist of the daily routine things like brushing their teeth or taking their pills. They know what they are supposed to do but the checklist helps to remind them and get them in a habit/ routine. They also learn how to make lists, as well as following through them.
Most of you know, I am a coupon shopper. My kids know how to coupon shop as well. How much math skills does that take? I have been teaching them budgeting skills too. They also help with long term project planning and inventory. While all of these things are not classic "school work," they certainly help to teach them how to be well rounded grown men! I know, I am training good husbands and their wives will thank me, (and their father) one day.

Andy's Birthday, remembering back to the pregnancy 11 years ago!

My baby is growing up too fast! He was born 11 years ago, on Friday, May 24th at 10:03am. He weighed in at 3427 grams (7 1/2 lbs) and 48cms (19 inches) On Saturday May 25th at 6:30am he had his first or 14 surgeries. They said he might not ever walk, or would need assistive devices like braces and walkers. Today he runs and walks with no assistance, is very smart (spells better than me!) and is above all, a happy, God-loving child. My miracle, (Dr.'s said I would never have children), my oldest, my son!
 When I started my journey into mommy-hood, I didn't know what to expect. I knew that I always wanted to be a mom, but was told so long that I couldn't have children I was starting to believe it. It was an unusual start to the pregnancy. The first weekend in October of 2001, Marty and I went camping, we were checking out a time-share campground. The whole weekend we kept talking about how nice the place was and since it had an adult only clubhouse and activities, we could find ways to be happy and enjoy spending time without having children in our lives. We had been told, again, earlier that spring that we could not get pregnant. So all summer and into the fall, we had been spending time together finding a way to make a life without children. For the 9years before that summer, every choice we made was with the plan of how this or that would work with children in the picture. Now we had accepted that there would be no children. 

A month after that camp-out, I got up on a Monday morning and decided to take a pregnancy test. Don't know why but I had an old one sitting in the cupboard so I took it. It had a faint 2nd line! I called Marty in to look at it, he didn't even know what having 2 lines on a pregnancy test meant. (this was before nursing school) Off to the store we went to get a new test kit. After letting Marty read every box in the store and choosing what one he thought was the best, we head for the checkout only for Marty to ask, "What happens if this is negative?" I answer, "Wait a week and re-test." We do a u-turn and head back for a 2 pack! After we get back home I re-test..... positive!! After all these years of trying and not getting pregnant, I want a blood test and Dr.'s confirmation! So I call the office and get in that day. They re-test and take blood, tell me to stop taking my medications and hand me a prescription for pre-natal vitamins. I also need to find a different Dr. as that one was a General Physician, need a good OB. So I call around, find one in Raleigh and have an appointment for the next week. Get the lab results back on Wednesday, I am 2-3 months along??? That next appointment they do a Ultrasound, I am 10 weeks along. Everything looks and good and we set up the appointments for the next 2 months. 
The next few months are great, we tell my folks, call Marty's folks and tell everyone else! We celebrate Christmas, my Mom fills a small pink stocking with gifts and a blue one. There are gifts for the new baby under the tree. My mom and Marty are convinced that it will be a girl, I tell them it will be a boy since they think it's a girl! LOL We decided that we don't want to know the sex until birth. I am having an easy pregnancy and no problems.
The week between Christmas and New Year is my lab appointment for a "tri-panel" blood test, it is now a "multi-panel" test. This test looks for indicators of Trisomy 18, Downs Syndrome, and Neural Tube Defects. I didn't think anything about it at the time, just another test for me. A week and a half later, I get a call. The lab results are not normal, they want me to go to a special Ultra Sound clinic and meet with a genetic councilor. I ask what do the lab results indicate, "possible Spina Bifida." I had never heard of it before. We start researching and go talk to a friend at the health department. Everyone tells us not to worry, there are false lab results like this one all the time. 
January 10th, 2002 we go to the Special clinic and meet a genetic councilor. She talks with us for awhile and asks us if we want to abort if there is something wrong with our baby. We know at this point that Spina Bifida doesn't affect intelligence, only physical problems. We let her know that if there is the slightest quality of life for this baby, it's ours and we will not throw it away. We then go back into a room for a "level 2" ultra sound. The technician is very nice but very calm, she does the looking and we can't see the screen. She leaves the room for a few moments and brings back in a Doctor we have never met. He says, "We see the Banana Sign and the Lemon Sign but we can't see a defect clearly. We know this baby has Spina Bifida just not exactly where. We still want to do an Amniocentesis to confirm, so please sign this release form." He hands me a pen and a form, then starts to get ready for the procedure. We start mumbling, and he says, "Well I guess we can give you a few minutes to talk it over but we need to do this." He leaves the room and the tech steps out for a few after handing me some tissues. I am numb at this point. I try to talk but everytime I open my mouth I just cry more. Marty is standing next to me and just looking at me asking, "What does this mean?" I want to answer him, but again I just keep crying. I calm down, the tech comes back in and we sign the form. The Doctor comes in and does the procedure then asks if we have any further questions or would we like to schedule an abortion. We tell him no, we are not aborting. He directs the tech to help by showing us the pictures and do further measurements with the ultrasound and he leaves. She is great, she showed us the pictures and explained the findings. We are now feeling better, so back into the genetic councilors office we go. Again we are asked if we want to schedule an abortion. "No!" We answer again. We don't stay long, talk very little, I remember asking her questions and she kept just telling us to go home and wait for the results. 
A week later she calls with the results, our baby has Spina Bifida. During this time we have been doing some research. I had asked her about a surgery that could be done while still pregnant at that 1st appointment. She had responded with, "Oh you don't want that surgery, those babies die. It doesn't work." Well, in our research, it does work. In fact there was a national study getting ready to start to compare the benefits to the risks. So when she called I asked her why she had lied, "Well, I thought you didn't need all that info. You just needed to go home and deal with the new news. And I thought you might want to abort the baby anyway!" Really??? I told her that no, I would not abort. I also would have like more info, how can we make informed decisions without the information? I then asked her for the sex. She says, "Why do you want to know? I thought you both wanted to wait for birth to find out?" "We want to name the baby. We want to talk of our son or daughter has Spina Bifida and this is what we are going to do for our baby!" So, it's a boy! "Great, that means Andy has Spina Bifida and who do we need to see now to learn our next steps to make Andy be the healthiest kid we can?" She is stunned, she is expecting us to crumple with grief. Not us, we are ready to meet it head on and make plans for a great future with our miracle baby! We looked into doing the surgery, no insurance would pay for it, and we would have had to pay $34,000.00 up front. There would be travel to either San Fransisco or Philly and lots of other restrictions on top of that. Andy's level of defect (L5-S1) was still being debated on... benefit verses risks. The risks were high... 90-100%, preemie birth 30-35 weeks, gestational diabetes, not to mention possibly loosing the ability to carry another baby ever again or any future pregnancies would then carry high risk for preemie as well because of the surgical scar tissue. We decided against it, the benefits for his level were not that great and we could give him a stronger start if we could "cook" him longer.

The next few months went along with preparations for Andy's arrival. We had lots of extra Doctors appointments, changed Doctors to a Fetal Maternal Specialist. Delivery was planned for June 11th at UNC Chapel Hill. They have the NICU and the important Pediatric Neurosurgeon Specialist that will need to perform Andy's first surgery within 24-48 hours after his birth to close his back. We met with the head of the NICU to discuss the details of his hospital stay, how things work and what to expect. We met the Spinal Bifida clinic staff and the Physical Medicine Specialist at UNC.  We had lots of ultra sounds to check his development and to watch for possible complications that can effect Spina Bifida kids. And asked close to a dozen times, "Do you want to abort?" and answered everytime, "NO!"

My in-laws came to visit in March and we re-painted Andy's room and painted the extra bedroom. Marty and his Dad worked on tiling the bathroom we had started to redo before the pregnancy. Marty and I finished the rest in April. My folks came back to North Carolina from Florida in mid-April. The baby shower was planned and happened on May 19th.
   
We started calling around and looking for a Pediatrician that could handle a special needs child and would be able to work with all the specialists Andy would have.We found a great practice in Raleigh and were told that there was a meet the staff event for new parents on Monday, May 20th in the evening. So we drove down and got to the office to find the event had been cancelled. When we explained our situation and what we were looking for in a Pediatrician, the desk gal went to talk to a few of the Doctors. She came back and said that 2 of the partners wanted to meet us and talk. We spent only about 20 minutes talking to them but walked away knowing that these were the Doctors we wanted.


On Thursday, May 23rd, we went down to UNC for our 37 week check-up and twice weekly BPP (Bio-Physical Profile) an ultra sound that measures growth, breathing, movement and fluid. We had been doing these visits twice a week since the 32nd week. We had the ultra sound and were at the appointment when my Doctor starts the conversation with, "We had a meeting Monday about Andy and we want to make some changes to the delivery and schedule." Well, it seems that they are concerned with how big he is growing and that he is not going to wait for June 1th to be born. Because of the opening in his back, they do not want him to go through labor, they want to do a C-section instead to be able to control the birth. According to the ultra sounds, he is around 7-8 lbs already and can gain 1/2 to 1 lb a week during the last few weeks. My Doctor is also going be out of town the week before his scheduled delivery date and wants to deliver him herself. So the plan is to do an Amniocentesis and confirm his lung development, then plan the C-sections for the following week. We agree to this plan and they find that we can do the Amnio after lunch time. We grab lunch and go in for the Amnio. My Doctor is able to do the procedure herself but has to have the Attending covering that department review and sign off on it. So this little 4 foot 10inch woman comes into the room to review everything and says, "I want to help deliver this baby too. I am free tomorrow morning, so let's do it tomorrow!" 
Ummmmmmm, Wait a minute. "The last I knew, the neurosurgeon was on maternaty leave, is she back? And we don't even know if he's ready to come out yet!"
She pats my belly and says, "Don't worry hon, we'll take care of this." 
Well, she talks for another minute to my Doc and leaves the room. My Doc is calm and says don't worry about anything, she'll call me later with the results. So we head home.

    About 2 hours later, 10 mins after walking in the door, the phone rings. It's my Doctor, "Yeap, he's fully cooked! Why don't you be here at 8am and we'll deliver him?"
"Ummm, Ummm???"
"We know he's ready to come out, why not get it over with. We'll see your then, bye!"
Stunned???? I was! Well there starts the whirl wind. I now have to call my parents, Marty has to call his. We have to double check and make sure we have everything packed for the hospital, make arrangements for the dog and cats to be taken care of. I call my mom and just tell her that Andy's birthdate has been changed, she asks for the date and I just tell her the date, May 24th. "Ummm, Ummm, UUUMMMM...... That's Tomorrow!!!!" Yeap, dirty trick I played!



So, the next morning, we left the house at 6:30am to make the drive down. My folks met us there and at 10:03am, Andy was delivered into this world. He was passed across the room by his legs, they didn't want to touch his back. Then I got to catch a glimpse of him before the NICU team whisked him away to the NICU. Unfortunately for me, the maternity floor was filled and I had to wait in the recovery room until 5pm to get a room. That meant I couldn't go to the NICU to see Andy. My folks and Marty got to visit and hold him all day, I had to wait. When I finally got into my room, lactation was there and I had to learn about and use the pump. So, it was 5:30 before I got to the NICU. I got to spend the evening holding him, loving on him and enjoying him. The next morning they took him to surgery before I got there (15 minutes early). After surgery, he had to stay on his belly and we could not hold him for a few days. 
During surgery, Andy started crashing. They had to put a temporary covering on his back and flip him over to start CPR. He responded quickly and was fine after that. I don't remember how long that first surgery took, but we didn't get to see him until late afternoon. The rest of the week went un-eventful, and by Wednesday, he was ready to go home as soon as he gets his circumcision. A mix up in scheduling, he has to wait for Thursday afternoon for the circumcision. So one more night. Everything goes well with that and we are home before dark on Thursday!
So, there is the start of Andy's life and my Mommy-hood!! I'll try to write more soon about the surgeries and the experiences we have been through. Life has not been easy, but we have come through it all together and stronger for it.

Spina Bifida..... What is it?????

So, I had promised a few years back to write more about Spina Bifida and what it is. Well, I'm finally getting around to it! 

Wikipedia says, is a developmental congenital disorder caused by the incomplete closing of the embryonic neural tube. Some vertebrae overlying the spinal cord are not fully formed and remain un-fused and open. If the opening is large enough, this allows a portion of the spinal cord to protrude through the opening in the bones. There may or may not be a fluid-filled sac surrounding the spinal cord.

Other neural tube defects include anencephaly, a condition in which the portion of the neural tube that will become the cerebrum does not close, and encephalocele, which results when other parts of the brain remain unfused.

 Spina bifida malformations fall into three categories: spina bifida occulta, spina bifida cystica with meningocele, and spina bifida cystica with myelomeningocele. Spina bifida can be surgically closed after birth, but this does not restore normal function to the affected part of the spinal cord. Spina bifida is one of the most common birth defects with a worldwide incidence of about 1 in every 1000 births.

Myelomeningocele;  This type of spina bifida often results in the most severe complications. In individuals with myelomeningocele, the un-fused portion of the spinal column allows the spinal cord to protrude through an opening. The meningeal membranes that cover the spinal cord form a sac enclosing the spinal elements.

So, now you know what the technical description is.... Andy has Myelomeningocele. It is a hole in the spine and the cord/ nerves come out the hole, and then go back in. They are damaged during pregnancy as the amniotic fluid becomes acidic to those nerves around week 25 of pregnancy. The actual opening happens  during the first month (weeks 3-4) of the pregnancy,  before most women know they are pregnant. Before I knew I was pregnant!

What causes Spina Bifida???

 Lots of different things are believed to be the cause. Medications such as some anticonvulsants, diabetes, having a relative with spina bifida, obesity, and an increased body temperature from fever or external sources such as hot tubs and electric blankets may increase the chances of delivery of a baby with a spina bifida. Research has shown the lack of folic acid (folate) is a contributing factor of neural tube defects, including spina bifida. Supplementation of the mother's diet with folate can reduce the incidence of neural tube defects by about 70%, and can also decrease the severity of these defects when they occur. The recommended amount of folic acid for women of childbearing age and women planning to become pregnant is at least 0.4 mg/day of folic acid from at least three months before conception, and continued for the first 12 weeks of pregnancy. Women who have already had a baby with spina bifida or other type of neural tube defect, or are taking anticonvulsant medication should take a higher dose of 4–5 mg/day.

Ok, so now we know what it is, how it's caused, but what problems does it create???

Physical signs of spina bifida may include:

Leg weakness and paralysis
Orthopedic abnormalities (i.e., club foot, hip dislocation, scoliosis)
Bladder and bowel control problems, including incontinence, urinary tract infections, and poor renal function, Neurogenic bladder resulting in the need for Intermittent catheterization several times a day to empty the bladder,  constipation requiring medications and sometimes surgical interventions.
Pressure sores and skin irritations
Abnormal eye movement
68% of children with spina bifida have an allergy to latex, ranging from mild to life-threatening. The common use of latex in medical facilities makes this a particularly serious concern.
The spinal cord lesion or the scarring due to surgery may result in a tethered spinal cord. In some individuals, this causes significant traction and stress on the spinal cord and can lead to a worsening of associated paralysis, scoliosis, back pain, and worsening bowel and/or bladder function.
  

Neurological complications

Many individuals with spina bifida have an associated abnormality of the cerebellum, called the Arnold Chiari II malformation. In affected individuals, the back portion of the brain is displaced from the back of the skull down into the upper neck. In about 90% of the people with myelomeningocele, hydrocephalus also occurs because the displaced cerebellum interferes with the normal flow of cerebrospinal fluid, causing an excess of the fluid to accumulate. In fact, the cerebellum also tends to be smaller in individuals with spina bifida, especially for those with higher lesion levels.The corpus callosum is abnormally developed in 70-90% of individuals with spina bifida myelomeningocele; this impacts the communication processes between the left and right brain hemispheres.
Several studies have demonstrated difficulties with executive functions in youth with spina bifida, with greater deficits observed in youth with shunted hydrocephalus. Unlike typically developing children, youths with spina bifida do not tend to improve in their executive functioning as they grow older. Specific areas of difficulty in some individuals include planning, organizing, initiating, and working memory. Problem-solving, abstraction, and visual planning may also be impaired.
Individuals with spina bifida tend to have better reading skills than mathematics skills. Children and adults with spina bifida have stronger abilities in reading accuracy than in reading comprehension. Comprehension may be especially impaired for text that requires an abstract synthesis of information rather than a more literal understanding. Individuals with spina bifida may have difficulty with writing due to deficits in fine motor control and working memory.

Social complications

 Compared to typically developing children, youths with spina bifida may have fewer friends and spend less time with peers. They may be more passive in social situations. These children have also reported feeling less close to their friends and feel they do not receive as much emotional support from their friendships. However, not all studies have found social difficulties in these youth compared with their typically developing peers.

Treatment

There is no known cure for nerve damage caused by spina bifida.To prevent further damage of the nervous tissue and to prevent infection, pediatric neurosurgeons operate to close the opening on the back. The spinal cord and its nerve roots are put back inside the spine and covered with meninges. In addition, a shunt may be surgically installed to provide a continuous drain for the excess cerebrospinal fluid produced in the brain, as happens with hydrocephalus. Shunts most commonly drain into the abdomen or chest wall. However, if spina bifida is detected during pregnancy, then open or minimally-invasive fetal surgery can be performed.
Most individuals with myelomeningocele will need periodic evaluations by a variety of specialists:

• Physiatrists coordinate the rehabilitation efforts of different therapists and prescribe specific therapies, adaptive equipment, or medications to encourage as high of a functional performance within the community as possible.
• Orthopedists monitor growth and development of bones, muscles, and joints.
• Neurosurgeons perform surgeries at birth and manage complications associated with tethered cord and hydrocephalus.
• Neurologists treat and evaluate nervous system issues, such as seizure disorders.
• Urologists to address kidney, bladder, and bowel dysfunction - many will need to manage their urinary systems with a program of catheterization. Bowel management programs aimed at improving elimination are also designed.
• Ophthalmologists evaluate and treat complications of the eyes.
• Orthotists design and customize various types of assistive technology, including braces, crutches, walkers, and wheelchairs to aid in mobility. As a general rule, the higher the level of the spina bifida defect, the more severe the paralysis, but paralysis does not always occur. Thus, those with low levels may need only short leg braces, whereas those with higher levels do best with a wheelchair, and some may be able to walk unaided.
• Physical therapists, occupational therapists, psychologists, and speech/language pathologists aid in rehabilitative therapies and increase independent living skills.

Spina bifida is one of the most common birth defects, with an average worldwide incidence of one to two cases per 1000 births, but certain populations have a significantly greater risk.
In the United States, the average incidence is 0.7 per 1000 live births. The incidence is higher on the East Coast than on the West Coast, and higher in white people (one case per 1000 live births) than in black people (0.1–0.4 case per 1000 live births). Immigrants from Ireland have a higher incidence of spina bifida than do natives. Highest rates of the defect in the USA can be found in Hispanic youth. Although, the rates are only partially accounted for because some fetuses are aborted when tests show signs of spina bifida.