Wow, almost a year later, and I find that I still feel the same way about insurance companies. Don't get me wrong, I'm grateful we have insurance, but they are sneaky. However, I am grateful to have had it. Buddy Blue (confirmed a boy on Sept. 27 along with a scary diagnosis) probably wouldn't be with us today if it were not for modern medicine and insurance.
The routine ultrasound seemed normal enough, except that after the tech told us it was a boy, she kept trying to get pictured of his back, and I noticed a bubble there. I asked hubby about it in the waiting room while we were waiting to get the all clear from the Dr. He saw it too, and thought it was just a bubble. No big deal. Ok, sounds ok. Just a bubble. The nurse finally calls us back to an exam room where we wait for another half hour. Hub says he's going to take off, as rush hour is fast approaching, and the office is on the opposite end of the metroplex from the house. I ask him to just wait a few more minutes, and he stayed. I'm so glad he did. The doctor finally came in, and said yes, it is a boy, and then she said "A few things..." She started talking about something in the scull not being perfectly symmetrical, but lemon shaped, and the cerebral vortex being more elongated like a banana rather than a perfect figure eight, and then she mentioned his back. My heart stopped. The bubble. It wasn't just an air bubble. Something was wrong. My precious baby wasn't just fine. He has spina bifida. I felt like the air was being squeezed out of my lungs. The doctor kept talking and I tried to pay attention. She said it could be anything from he would just have headaches the rest of his life to being basically a vegetable. I tried to ask questions and pay attention to what she and my hubby were saying, but all I could think about was the little girl I used to babysit who had spina bifida and was confined to a wheel chair. My little boy was never going to walk or run or jump or chase his older brother around or do the physical things that Bug could do. I broke down and cried.
The next three days were a blur of emotions and doctors appointments. The perinatologist we saw the next day did an ultrasound and had us meet with a geneticist. I know I have the right to terminate my pregnancy if I want to, but I there are only two situations where I would ever even consider doing that, and this is not one of them. I really felt like the geneticist was pushing me to get an abortion. It really made me angry. The only reason I am sitting in this office is because I need to start making plans for my baby’s future. What special care and needs is he going to need? What treatment options do we have? What is going to be the best for him and for our family? This is not a situation that warrants even the mention of termination.
Moving on… The ultrasound didn’t show any signs of brain damage, which was a major concern. The baby was also moving both of his legs and articulating all of the joints. It was such a huge relief to hear that. They did mention a study that was going on for the treatment of this birth defect, but they told us it would involve moving to Philadelphia, Nashville or San Francisco. We had just purchased our home last Christmas, so that wasn’t going to be an option for us. They scheduled us to have a fetal MRI and meet with a doctor who specializes in spina bifida diagnosis and treatment. Everything she told us was very encouraging and she also gave us more information on the MOMS study. We decided we would look into the study; a decision based on faith, and was scheduled to go out to the Fetal Treatment Center right after Halloween. (By the way, amniocentesis SUCKS!!!) Hubby and I really were looking at it as a free mini vacation since we weren’t planning to participate. The risks just seemed too high. Before we left, we talked to our bishop and let him know what all was going on. He wished us the best, told us we would be in his prayers and gave us a small piece of counsel. He said that the spirit would speak to us at the same time whether or not this study was something the Lord wanted us to participate in.
So, we left Bug with Mimma (I am grateful that she was able to come down and help us, but it came at a very big cost. I’m still struggling to deal with it) and headed to Frisco. I had never been there before, and OH MY GOSH!!! AMAZING FOOD!!! I think hubby and I gained about 7 pounds each during the two days we were there. We talked to lots of doctors and specialists, but it was when we were talking to the Neurosurgeon, Dr. Gupta, that we felt just at peace. A true peace like we hadn’t felt since the ultrasound. We knew we had our answer. Fortunately we randomized to the postnatal surgery. The prenatal surgery would have had a much higher risk of premature delivery, around 32-36 weeks. And it would have meant bed rest for the remainder of the pregnancy and all future deliveries would have to be by c-section. Bug would have had to stay at my parent’s house for the remainder of the pregnancy, hubby would have been by himself for five months and I would have been stuck with Mimma. (Yeah, in hind sight I am SOO glad this isn’t where we randomized to. I think the Lord knew that it would have been a toxic combination)
So, home we went and had the holidays together with Bug and Mimma. Bug was much more into the opening of presents this year than he was the last two years. If anything he was banned from the living room where the tree was. The poor tree did get knocked over a few times. Mimma is really too slow to be able to keep up with a super active two year old. We pulled Bug out of the babysitters shortly after coming home from Frisco and Mimma stayed with him while I was at work. I had a calendar on my wall with the days marked in a countdown till my maternity leave would start. The girls at work threw me a fabulous baby shower on my last day. And the cake was beautiful. Tasted great too, and I was able to keep it down. (For the first time in months, they get a cake on the 15th of every month for the birthdays and I hadn’t been able to eat it since August since it made me sick every time). My car was completely stuffed with all of the wipes, baby wash, lotion, towels, clothes, laundry soap, nursing pads and blankets I received. (We didn’t have to buy wipes for two months after Buddy was born, and that was with two kids in diapers.)
Hubby and I headed back out to San Francisco in the middle of January for delivery. If you have never flown Virgin America, I highly recommend it. Awesome service and super comfortable seats. (Not to mention you each get your own TV, just remember your headphones.) The day after landing, we headed to the hospital for the worst amnio in the world. After two needle sticks, some fishing, and moving to a seven inch needle, it was determined that Buddy’s lungs weren’t ready to meet the world. So we got to sit around for a week and wait for the 31st to meet our baby. I did a lot of sleeping while Hubby was filling out the insane amount of paperwork required to apply for a government job. We did hit up one of the local malls, trying to find a tie for him and a dress for me so we could go to church. I didn’t pack any of those things since I was planning to have just had a baby and spend most of my time at the hospital. For some reason, there are no maternity stores in most malls of San Francisco. Kind of a sad testament to the low birth rate and high maternal age there. The only young people we saw with babies or being pregnant were either Asian or Hispanic. I finally found a dress that would cover my watermelon belly and also work for after I lost all the weight (yeah, that still hasn’t happened) at a store that specializes in plus sizes and drag. I saw my first man trying on a pair of glitter high heels. Interesting. And that’s all I have to say on the matter.
On January 31, 2011, Buddy Blue was born. As soon as he was out, they rushed him the the ICN. They brought him back into the or almost as they were finished closing me up. He looked just like Bug. Like a carbon copy. I was too drugged to really know what all was going on, but Hubby told me that there was a lot of meconium and the membrane sac on his back had ruptured. About 7 hours after delivery, I was able to go see him. My poor little boy was absolutely beautiful. All 7 lbs 3oz of him. With dark hair and best of all….NO CALIC!!! My chunky little monkey man. (He was really hairy; maybe what they say about heartburn is true, because I did have a lot of it.)
The next morning, he was scheduled to go into surgery to repair the opening on his back at 11am. By 9am I was feeling really stressed because hubby wasn’t there yet to give our baby a blessing beforehand. He told me later, that for some reason, he felt like he needed to hurry up at get there before 9:30. It was a good thing he did too, because they moved his surgery up to 10am. Less than 24 hours after being born, Buddy Blue was going to undergo major surgery. The emotional stress and angst that accompanies watching your tiny baby being wheeled away from you and into surgery is not something would wish on anyone. It is truly heart wrenching. Hubby did give a beautiful blessing to him for strength and that the doctor’s hands would be guided as they worked on our little boy. I was supposed to be about an hour and a half to two hour surgery. After four hours they finally sent a nurse to my room to let us know that the neurosurgeons were done and now the plastics team was closing the repair. Six hour from start to finish. About an hour after they take Buddy back to the ICN, the neurosurgeon comes to talk to me and hubby about the surgery and why it took so long. Apparently the spinal cord and fused to the membrane sac and that all had to be dissected away from the tissue and put into a column. Since there was no hollow for the column to go into, there was going to be a very large bump on his lower back. He also forewarning us that he was very swollen from all of the fluids they gave him because it was such a long surgery. I’m glad he did.
When they finally took us to see him, it broke my heart. He didn’t even look like the same baby. He was covered in tubes and wires, and his back, oh his poor little back. The repair site was about as big as one of those giant Easter eggs cut in half length wise. The original defect was about nine centimeters long by seven centimeters across at the widest point. So they had to close up a gaping hole with the last of his spinal column sticking up. It was shocking. The doctor told us the swelling would go down in time and has he grew; it would appear smaller in proportion to his body. (Currently, at just over three months, it is the size of a Cadbury egg.)
Buddy Blue stayed asleep for about five days after the surgery. Once he woke up, all of his feeds had to be done through a bottle because I couldn’t hold him in any way that would put any pressure on his back. So I was constantly pumping to make sure he would have plenty of breast milk. Hubby and I got lots of practice cathing him, because we weren’t sure what his bladder function was going to be and we wanted to protect his kidneys.
After two weeks in the ICN, we were discharged and ready to go home. We did an urodymanics study and found his kidneys and bladder to be looking great. The flight home was uneventful, and we walked in our front door around 1am. Buddy’s crying woke up Bug, and he didn’t recognize his daddy. He had been three weeks without shaving and was a good four weeks past due on his haircut. I giggled over that one.
There were lots of doctors’ appointments in the weeks after we came home. Biweekly ultrasounds of his head to watch for hydrocephalus. (Because of his Chari II malformation, there was a chance that his body wouldn’t be able to correct and control the flow of cerebral spinal fluid and it could build up in his brain.) Poor Bug has been dragged to all of these appointments with me. And then on May ? I had an appointment with the neurosurgeon in town. Bad news. The swelling in Buddy’s ventricles had crossed the danger threshold, not leveled off like we were hoping. He was going to need surgery to place a shunt to drain the excess fluid and protect his brain.
After talking it over and praying about it, Hubby and I decided this was going to be the best course of treatment for our baby. We scheduled the surgery for Monday morning when he would be off and able to stay home with Bug while I was up at the hospital. The night before the surgery, hubby again gave a blessing. I remember he said that the doctors would find the procedure very routine and that he would heal quickly and continue to grow and prepare to face the challenges ahead of him. I also specifically remember him saying that Buddy was the trial for his parents to change the way we think of things and to grow and learn to trust and have faith. After I had told my mom about the need for the shunt surgery, she said something that has stuck with me. Buddy has had a very blessed diagnosis for all that would have been wrong, and it has been easy for me to forget that he is a child with special needs.
It was an operation that only lasted about an hour and required one night in the hospital and then we came home. He's been doing great so far, but we had to go back to the bottle since the shunt is on the side of his head and he can only nurse on the other side. But it is very low profile, I doubt by the time he is two you will even be able to see it under his hair.
I have to admit that I am very grateful for the opportunity to be the mother to my two little boys. They are a constant lesson in humility and gratitude and the mercies of our Heavenly Father. I have been blessed more than I deserve, and for my children’s sakes, I will be eternally grateful.