My Life Upside Down: The Beginning

So now I have a baby, my son George. Life is all about him. I wake up when his first feeding is and I go to bed when he has fallen asleep for the night. The middle of my day is spent sitting around with him in my lap with his pacy because that is what keeps him happy.

For me the birth was easy. A scheduled C-section. I was starting to have contractions but I was not feeling them. They injected pain medicine into my spine and pulled a curtain infront of my shoulders so that while I was laying down I could not see them cutting me open to get the baby out. The whole operation was a blurr. My husband sat next to me holding my hand. They asked if he wanted to see the baby and then a nurse yelled that wouldn't be a good idea the baby wasn't breathing. Jarrod started to feel dizzy at that point and had to be escorted out for some water. They finally got George to breath but he was striderous (which meant when he breathed he squeaked) this was due to a floppy airway. My son could not breath on his own. They asked if I wanted to see him. I gave him a kiss in my loopy confused state and he was taken away.

When I came back to feeling I was in a sterile room with my husband and my nurse. My legs were straight but because I did not get them in that position when I lost feeling they felt bent and uncomfortable. I kept yelling at poor Jarrod to fix my legs make them straight. Eventually I was carted down a floor to my room. They rolled me onto a bed.

I didn't feel pain right away. I was uncomforatable and nauseous but I didn't feel the slice in my lower abdomen. I spent a lot of time watching HGTV and sleeping. I could see the other mom's waddling though the halls holding or carting their child and I was so jealous. There was no baby in my room. Jarrod went up to the NICU to see the baby but I was not even well enough to go see him. Then to make matters worse, our dog Heidi had run away and was found by a neighbor. Jarrod had to leave me and go home. It felt empty and awful alone in my room.

A long day of nothing

Today feels like such a long day of doing nothing. It takes me an hour to get to my doctor and it took an extra half hour to be able to see her because she was on call the night before and a patient went into labor. Maybe it is from growing up in Arlington but I just don't mind waiting. All those years of traffic and overcrowded stores have made me be at peace with waiting. So I just sat patiently in the waiting room enjoying the quiet working on a sudoku. I was amazed when an elderly woman came in complaining that she came with plenty of time to see her doctor and had to wait 10 WHOLE MINUTES! She was flipping out on the poor nurse whose job was just to escort her to her waiting room. Apparently she didn't notice that everyone was waiting not just her. I will never understand some people's sense of entitlement.

My appointment lasted maybe 10 minutes and I was back on the road. All is well with the baby and me as usual. I won't get to see him on an ultrasound for another 2 weeks so no clue about the hydrocephalus but I have noticed all the same movement and hiccups so I dont feel any change. My doctor realized that she scheduled her vacation to start the day that my C-section had been scheduled for (she is a bit of a scatterbrain sometimes). So now thank goodness, she will be coming in to do my operation and then leaving for her vacation because "she really wants to do this section". Which helped me greatly in my confidence in her and my choice to stay in Roanoke for all the operations. If she had sent me to someone else I probably would have had a nervous breakdown.

I finally got out of there and went over to the mall. I made the mistake of going into Motherhood. I have a little bit of a shopping problem. As long as I stay out of the stores I am okay but once I go in and see stuff I like at good prices? Im lost. It was an entire store of clothing that was comfortable even in my enormous state. I ended up buying two extremely comfy dresses and two comfy t-shirts. I was going to buy yoga pants but I held off because Im done in 4 weeks and the dresses and stuff I have already will be plenty. And then the nice lady at the register was nicely surprised at how far along I was (yes I am well aware she may of been faking) but she told me I looked amazing for how far along I was. I guess most 35 week pregnant ladies are an absolute mess? Who knows. Jarrod doesn't let me indulge myself too much. And actually I love him for it. With the wrong guy I would be bedridden eating dumplings and raspberry sorbet while watching cable all day. Jarrod makes me eat better and at least try to work out. Trust me I need it.

On the way home from the mall I ran out of gas so I stopped by a gas station on my route that I have never been to. I will never go back there again! The trash cans were stuffed to the brim. I put the gas pump on auto and the shutoff didn't work. I was watching it wondering why it hadn't finished yet when the pump started making weird noises. I went to take it out and my legs were splashed with gasoline and my car. I went to get the windshield cleaning brush to wash off my car and there wasn't one. All I had to clean myself and my car were paper towels. And I ended up paying for a quarter gallon that just ended up on the ground. I was pissed but being my usual passive self I just stormed into my car and drove off so I could get a shower. But obviously to make myself feel better I had to go get a blizzard from DQ. :)

When I came home I took a nap until it was time to help Jarrod get ready for work. I hate when he has night shifts, it makes me feel so lonely. I don't want to do any work around the house, I don't want to feed myself, I just mope around and feel sorry for myself. This time wasn't very different. I tried to go to walmart to get my prescription for my poison ivy (yes it does make being pregnant more annoying when your entire massive body is covered with an itchy rash). Of course I didn't have a prescription card so no I couldn't get my prescription. I wanted to scream but instead stocked up on icecream, fruit snacks, cereal, and tortellinis. All things I have been craving. :)

Baby is almost here

Things have seriously brightened up since my last post although they have become a hectic mess. When we went to the prenatal specialist the next day we found out that our babies condition, while it could still be severe, is not necessarily hopeless. Yes he has spina bifida but he does not have Hydrocephalus which is great and we pray it stays that way. He only has one club foot and he can open his hands. There are no signs that this is anything more than a back malformation. He could still possibly walk and he will probably be just as smart as any other children we decide to have.

My life has become a hectic mess of course though. A baby with Spina Bifida means a baby with lots of doctors. I have been hounded constantly about my choices by the MIL and its frustrating because there is no way to know whether or not I am making the right choice. I had decided to go with the OB who delivered the bad news, she has been doing this a long time and the C-section should be cake for her. I decided to go with a Neurologist from the area because I had heard good things about her and all I have heard about the amazing one at UVA has not been that great. I still have to pick a pediatrician, a urologist, and an orthopedic surgeon. I am not looking forward to it. Especially since people in the Spina Bifida Association here did not have good things to say about the urologists and othopedics in this area. I have lots of traveling with my little newborn to look forward to.

I got the recommendation for my neurologist however because my husband ended up in the hospital for his knee. (What else can we go through is what it feels like some days.) Only Jarrod would end up with a staph infection because he popped his knee hiking then got an infected midge bite on his shin. Does it get any more random. So here I was driving an hour every day to see him at the hospital when I was 33 weeks pregnant. I was too big to have to take care of someone. And yet there I was bringing him clean clothes, and books, and snacks. He was extremely frustrated because he was stuck in a bed, fully aware and awake, stuck watching tv in a bed that was uncomfortable. After a week of this he was told it would take 6 weeks to fully heal. Just in time for my C-section.

Despite his condition, Jarrod still managed to finally hang drywall in the babies room, (we are really running out of time) with his grandfather. Hopefully I will still be able to paint when the walls are ready, they still need to be mudded but there is hope now that this room will be ready when the baby gets here. Not so much for the baby but so I have a place for my mom to sleep while she is here helping me recover and deal with a newborn.

Tomorrow is yet another doctors visit and I am so excited for this baby to get here. We are nervous about what the future entails and what his condition will be but I have lots of hope. No matter what he is like he will be loved and have a warm home and big accepting family. We are so lucky to have been able to learn about his condition and get over our shock ahead of time. This way we can learn as much as possible about his condition and prepare as much as we can for his needs. I just hope that God is watching over us and helps our son to have a wonderfully fulfilling life here.

Our Joy turned Sorrow

Monday was one of the hardest days of my life. I woke feeling like it was Christmas. At 20 weeks pregnant today was the big ultrasound, we were going to find out if it was a boy or a girl. In my heart I was thinking boy definitely. Why else would I have been craving things like donuts and barbecue potato chips.

It was a good morning. Jarrod's friend slept over because they were planning on doing a quick morning hike (which of course did not happen because his friend got in at 4 in the morning). The furnace was out of propane but with one quick call a guy was on his way to finally end our weekend of cold. And lastly Jarrod's oldest brother came by with his two children. It was a morning of video games, coloring, and snacks.

We finally left the house at 1230 to get to our doctors by 2 (it was an hour and ten minute drive and we needed gas). The drive was pretty noneventful. The usual curves and mountains we see everytime we travel to Roanoke. I had a new doctor and the center and I sat on a different side after checking in. The woman who came to bring us to the ultrasound knew Jarrod through his family and asked him to say hello. Everything seemed like a little blur I was so excited to see our baby on the monitor.

Immediately our baby showed that he was a boy. Then he proceeded to wiggle and roll all over the place making it difficult for the ultrasound technician to follow him. I was so happy that I was right he was a boy. It just was a feeling I had had. And watching him move all over the place was such a joy. I purchased a DVD of the ultrasound so when we were finished she gave us the disk and some pictures.

We went to our new doctors waiting area. I used the restroom because I just couldn't hold it anymore. We were unsure of what to expect, my OB/GYN had transfered to New York. He has said that this new doctor was good but a little all over the place. I hoped it would be a good fit because at this stage of the game I had no desire to find a new doctor. Her nurse showed us to our room and took my weight and blood pressure. Of course they needed a urine sample after I used the little girls room so I was going to have to give one before I left. Then she left us alone and we joked and laughed while Jarrod scanned through a book of names.

My doctor came in. She was very pretty for an older woman. "I am your new doctor. I have been doing this a long time. I'm a lot older then most of the other doctors here but I have a very good plastic surgeon." I chuckled at her introduction, still unsure of what to think of her and then the most horrible, awful thing she could possibly say came out of her mouth.

"This is going to be hard to take from someone you don't know but the ultrasound was not good". I felt like she had punched me in the stomach. All I could do was stare at her while in my head I frantically searched my memory of the ultrasound for what she could possibly be talking about.

"The baby has spina bifida" All I could do was nod. "Do you know what that is?" Jarrod had moved to take my hand all we could do was stare at this horrible person trying to tell us our perfect baby was not. "There is an opening in his spinal cord, its actually not all that common in the United States, much more common in the British Isles. Also it looks like he has club foot and clenched hands which could be signs of mental disability. I don't know what your religious beliefs are but this baby will probably have a terrible quality of life." By now I have started to cry, in my head I was waiting for her to say just kidding and just be someone with a terrible sense of humor for her profession. But those words never came, she handed me a tissue and continued my new little nightmare.

"I am going to send you to a genetics specialist. I am just a little OB/GYN so I don't know exactly how bad this is, or exactly what diseases the baby has. I am only able to go by my experience with patients in the past. If you decide to carry the child to term it will probably never walk and possibly worst. Another option would be to deliver early and do an autopsy to find out if this is something genetic or just a random mutation. They will probably ask you to do an amniocentisis and I highly suggest you do. It will give us an idea of whether or not this is a chromosomal defect. You all just sit tight and I am going to see if the doctor can squeeze you in today." She gave my hand a sympathetic squeeze and left us alone in the room.

"Is it weird that I feel like someone punched me in the stomach?" Jarrod asked me. I told him no. I felt the same way. We both wanted to throw up. This was terrible. How could we have a disabled child when we were both so healthy and our families both had such healthy babies. Why is it that there were drunks and crackheads who could have normal babies and mine wasn't going to be able to have a good life. It seemed so awful and unfair. In my mind I was throwing out all my pregnancy materials and sending all the maternity clothes back to my sister in law who loaned them to me. I wouldn't be pregnant at my sisters graduation. We wouldn't need to worry about finishing the babies room it would be a guest room now. How would I ever be able to go through a pregnancy again?!

When the doctor came back Jarrod asked her what could have caused this? We both were a little fearful throughout the pregnancy that my drinking, birth control pill use and antibiotic use before I knew I was pregnant may have hurt the baby. "Possibly a difficiency in folic acid, but usually its more just a genetic thing or a random mutation. " When Jarrod asked her more questions about the baby and what this means she told us that really we should wait for our appointment with the geneticist but she just didn't think the baby would have a good quality of life. She had made us an appointment with the new doctor for tomorrow and told me to call her if I could after the appointment.

Jarrod had to check us out while I alarmed all the other patients by crying uncontrollably. We drove in depressed silence cursing the fact that we had to run by Jarrod's brothers house to pick up furniture we were taking and Jarrod's motorcycle. Even worse we had to stop by Jarrod's parents house to get the trailer and Jarrod's dada na brother had the day off. (Jarrod's mom always basically has the day off but she is usually running errands.) We didn't want to face anyone we were barely able to talk to eachother.

At Jarrod's parents house I waited in the car even though I had to pee like crazy. Jarrod went in to get the hitch and broke down when Jarrod's dad told him his mother drove off with it in her trunk. Jarrod's dad had nothing he could say, there was nothing to say. Nothing was going to take away our new nightmare. He helped Jarrod silently get the ball off of Jarrod's younger brothers truck and Jarrod proceeded to get the trailer hooked up to the truck. Sunglasses on to hide his tears.

Then of course because we didn't feel helpless enough a car pulled up. Out popped Jarrod's grandparents, great aunt, and great uncle. I panicked, I couldn't talk to anyone. I didn't want to be soothed or touched. I didn't even want to be here. It seemed that they read our being upset and thankfully went into the house without checking on us. Jarrod drove away and we were back to the solitude of our own awful thoughts and tears. I kept thinking how much easier a miscarriage would have been then to have to make the decisions that seemed to be ahead. And every time I thought that awful thought the tears would return and I would feel like a terrible person.

It was freezing as we loaded up the truck with what was ours. For once I lifted and helped, unable to see how any of it could hurt the baby worse then it already had. The cold wind felt wonderful to me. Almost cleansing me of my terrible thoughts. By the time we were done I had finally gotten a grip on myself and was able to be a human being. Jarrod and I talked a little the rest of the way home. In general we found our hands were tied on making any decisions until we met with the other doctor.

We went home fed the dogs and ran off to Walmart. We there purchased the next 2 seasons of the office and a couple pairs of pants for Jarrod. We spent the evening delivering the news to our parents and trying to find if this could be genetic. We watched the Office and ate girl scout cookies until at 10 I made some pasta in need of a real dinner. And at the end of the night we finally fell asleep exhausted from the terrible news and our tears.