When God Changes Your Plans

Welcome to our blog. This post has a lot of background information, but I felt it was necessary for this post. Bare with me. Read it. Not all posts will be this long. <3

What many people, even some who we consider close friends, don’t know is that Shane and I have been open to the possibility of children for quite some time. Without going into too much detail, I came off of birth control early on in our marriage. I had been taking it for several years for irregular cycles, and wanted to see what my body did without the unnecessary hormones. Let’s just say it took a while for my body to “adjust” to this change. Our insurance was always so terrible that I could never bring myself to pay to go to the doctor, even though all the people in my life (mainly Shane) encouraged me to go. If you know me at all, you know I’m a little stubborn and quite a procrastinator. In October of 2016, I felt that my body had finally adjusted to coming off of birth control. Shane and I at this point had pretty much come to the conclusion that having children naturally was probably not going to happen for us (since it hadn't in 3 years) and we were not going to pursue fertility treatments, but instead had discussed the possibility of adoption. We finally had good insurance (thank you, public education system) and I was going to pursue finding a doctor in Huntsville to get my body healthy.

On Monday, December 5, 2016, I woke up feeling AWFUL. I hate calling in sick to work, but this morning I strongly considered it…until I remembered I had an IEP meeting that afternoon. You see, working with snotty-nosed, precious children every single day meant one thing was certain: germs. The flu had been going around both schools that I teach in and I was convinced I had the flu. I was nauseous. I had chills. I had the mother of all headaches. I couldn’t eat. I text Shane all day telling him I needed to go get a flu test. I just needed to make it through my afternoon IEP meeting. Then I could go home if I needed to. I also had a strong desire for Campbell’s Minestrone soup. I choked down something for lunch, felt a little better, and toughed it out until 3:00. Shane convinced me that Olive Garden Minestrone soup would taste better than canned soup, so we went to Olive Garden. I had never tasted anything more delicious in my life. Because I was feeling ok, we went to a few other stores and ended up at Taregt where it hit me again. Nausea. Headache. Irritable. Flu. I remember Shane asking “Have you taken a pregnancy test recently?” Well, no, I hadn’t because you can only take so many pregnancy tests for them to come out negative before you never want to take another one. Shane finally convinced me that I should take one. So we went next door to Dollar Tree and I grabbed 2 pregnancy tests (I knew right where they were as I was a frequent flyer to these) and some other random item (am I the only one who hates only buying pregnancy tests?). We drove home. I tried not to vomit the whole way home. Luckily I was successful.

We got home and I went quickly to take the pregnancy test so that I could finally convince Shane that I HAD THE FLU. I took the test. Set it down on the counter to wait the required two minutes. Washed my hands. That was when I glanced down. Expecting to see the one line that I was all so familiar with. But wait. Gosh I was so sick I was seeing double. There were two lines. Two lines meant pregnant. Surely I was confused. I checked the box. I started ugly crying. Side Note: Ladies planning to get pregnant soon and want to tell your husband in a cute way: make sure you have that plan ready, because in the moment your perfect plan doesn’t work and you blurt things out. I ran out of the bathroom holding the test. All I said was “I’M PREGNANT!!!!” Shane laughed…I had played this trick before…except this time it wasn’t a trick. I was pregnant. Or so this little pee stick said. I showed Shane the test, and the box, and the test again. I’m still ugly crying (and by ugly crying, I mean I broke blood vessels in my face that night crying so many tears of happiness). Shane is hugging and kissing me. I am still ugly crying.

We were elated. We were also slightly terrified. We knew the chances of miscarriage, especially after waiting so long for this to happen. We were almost afraid to get our hopes up too high, just in case. I had already asked a friend for an OB/GYN recommendation, so the next day I called and made an appointment. They calculated that I was about 6 weeks and didn’t usually see new patients with a new pregnancy until 8 weeks. So they scheduled me for December 21. I’m sorry, that’s 2 weeks away and I wanted to know right then how my baby was. Did it have a heartbeat? Was this a false positive? Am I really pregnant? Is this real life?

I spent much of the next 2 weeks with my face in the toilet. Morning sickness, afternoon sickness, evening sickness, middle of the night sickness. Any time of day, I could (and often would) throw up. If I wasn’t throwing up, I was nauseous. I broke more blood vessels in my eyes from being so sick and made up excuses to people who asked about how I had allergies, about how I sneezed too hard. It was ridiculous.

Finally, we made it to December 21. We were supposed to be at the office 30 minutes early. I think we got there an hour before our appointment time because we were so anxious. We finally got to the ultrasound room and a little blob popped up on the screen. The ultrasound tech immediately said, “You see that flutter? That’s your baby’s heartbeat!” Obviously, I cried. This was real. I was pregnant. Something I had spent my entire life dreaming about and praying would happen to me was happening. I was still in shock. We agreed that even though I would only be about 9 weeks pregnant on Christmas, it would be the perfect time to go ahead and tell our family. We only had to wait a few more days to spill the beans. It was torture. We told our family when we celebrated Christmas with them. You see, the one good thing about living in a different city than all of your family is that the holiday is not over after one day, but you get to keep on celebrating for several days. Finally, all of our family knew. We were so happy to be able to talk about this gift, this miracle baby, with our family now. A few weeks later we told our youth group, then our church family, and from there we let the news travel.

On Valentine’s Day we went for our gender ultrasound and found out that we would be having a boy, Nehemiah “Nehem” Thomas. We were so happy. This precious gift finally had a name and we could refer to him as such. We were already so in love with this sweet baby. Even before we knew his gender we prayed for him. That he would grow strong and healthy, that he would grow up loving the Lord and that the Lord would use him in mighty ways. The first time I got to pray for him by name was one of the best days of my life. I was praying for MY son. Thank you, Lord.

Fast forward to March 8. We had our anatomy scan to check out our sons developing organs and body parts. I had taken a personal day because I really don’t miss much school. Shane and I prayed over Nehem before walking into the doctor’s office, but trusted that everything would be very routine and normal. We had our anatomy scan. Then walked over to our doctor’s office. Still just in awe of this sweet little boy. Our doctor came in, just as happy as usual and gave us the list of his healthy organs: kidneys, bladder, heart, bone size, etc. ALL FINE. But his brain. There was something about his brain that she didn’t like. You see, we all have brain fluid (cerebrospinal fluid) that drains into our spinal cord. Well he had too much brain fluid. Not much, but a little. They also couldn’t find the area in which the fluid drained into his spinal cord. I held it together for as long as I could but didn’t get out of the doctor’s office before I was hysterical. My perfect baby boy who I had prayed over every single night was not as perfect as I had hoped(or so I thought, anyway). There was something wrong. What did I do? What could I have done differently? We were told we would hear from a high-risk doctor to be looked at more carefully. We were also told it could be nothing. We spent the rest of the day Googling (don’t Google) and consulting our medical friends. All of these friends told us this was a transitional thing that almost always works itself out. “Don’t worry” they told us. “This happens all the time” they said. So when the high-risk doctor called us and set up the appointment, we felt certain that this was all just a fluke. He just moved funny and they saw a shadow. Nothing could be wrong with this perfect little gift. God wouldn't allow that, right?

On March 13 I laid for over an hour on an ultrasound table for a second anatomy scan in a high-risk doctor’s office. They looked at everything. Even more thorough than the first anatomy scan. It also hurt more. When you have a baby who loves to move around, they poke and push a lot harder than when your baby is cooperative. Finally, the ultrasound was over (or so I thought) and the high-risk doctor came in. She asked us why we thought we were there that day. We explained that our doctor saw extra fluid on Nehem’s brain and wanted them to check it out. She immediately (and quite harshly) told us that it was much more than that. My memory gets a little fuzzy here because I kind of zoned out but I remember the words “Neural Tube Defect." I had no idea what this meant except (from what I understood when I left that doctor’s office)  that there was a “bubble” on the base of my baby’s spine where the tube that held the spinal cord was protruding outside of his body. I remember the words “mobility issues” “bathroom concerns” “learning disabilities” “fetal therapy” “fetal surgery” “specialists” and finally, “Are you sure you want to go through with this?”  Well, I can tell you right now, there were very few things I was certain of in that moment but what I was sure of was that God had entrusted Shane and I with a gift. A gift in the form of Nehemiah Thomas Perry and yes ma’am, I am sure we want to “go through” with this. This time, I was able to hold myself together until I got to the car and it was there that I lost it. This precious baby that I loved so much was now just a neural tube defect.

I spent the better part of March 13 crying and praying with Shane (as well as some Pastor friends). We called/texted our families and informed them of our news and had some family immediately jump in their cars and head to Huntsville. I Googled (don’t Google) “neural tube defect” and concluded (on my own) that this had to be Spina Bifida, which I had heard of, but didn’t know much about. Against my better judgment, I continued to Google (seriously, don’t Google) Spina Bifida and read all the horror stories that could be possible. I still didn’t understand. I was still so confused. Why me? We waited years for this baby. Why us? It didn’t seem fair. I made the comment to Shane that day that I felt like I was walking around in a dream world. It didn't feel real.

Within a few days, I had spoken to a lady from Vanderbilt who was the first person to give me hope for our son. She answered my questions and finally confirmed the diagnosis of Spina Bifida. She did tell me that there was a chance of mobility issues, a possibility of bathroom issues, but that people with Spina Bifida often had normal IQs and lived successful lives. Finally, some good news. Finally, I could feel like I was going to get through this. On March 20, Shane and I traveled to Vanderbilt for our first of many appointments. After another 2 hour long anatomy scan, a meeting with a high-risk OB, a neonatologist, and a neurosurgeon, we finally had an idea of what things were going to look like.

As of right now we know a few things for certain:

1. Nehem has  Spina Bifida. His defect is at L3 of his Spinal Cord.
2. I will deliver via-c-section around 39 weeks at Vanderbilt.
3. Within 72 hours of Nehem’s birth, he will be taken into surgery to close his back.
4. He will spend about 2 weeks (give or take) in the NICU at Vanderbilt.
5. No one can tell us what Nehem is or isn’t capable of. We will celebrate every milestone and ensure that he gets all the help he needs to live a “normal” life.
6. Nehem is fearfully and wonderfully made and we already love him more than anything we could ever imagine.
7. Nehem’s life might be more difficult than we originally had expected it to be, but in our eyes, he is perfect and other than the Spina Bifida, he is growing and developing just as he should be.

Shane and I made plans. We made plans for our future children. We began making plans for Nehem on December 5 when we found out that he existed. Our plans changed quickly. From devastation to hope. We know that not everyday is going to be easy. But God never promised us easy. He only promised us that He would always be with us; and let me tell you friends, He has been faithful in that promise. Through people, through stories, through doctors, through seeing our sweet baby’s face in an ultrasound, He is here. I’m not going to pretend, I’m praying for healing for Nehem. I serve a God of miracles and I know that He CAN perform a miracle on my son. I also believe that if He doesn’t, He’s still good. Still, my prayer is that God will do mighty things through Nehemiah Thomas Perry despite anything anyone is going to tell him he can or can’t do. 

I pray that every single day of Nehem’s life, God receives all the glory, all the honor, and all the praise because no matter what Nehem can or can't do physically, that’s what He deserves.