Monday, June 3, 2013

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.