Tuesday, February 05, 2013

Becca's Story a.k.a. I Should Have Typed This Up a Looooong Time Ago! a.k.a. The Really Long Version

My first pregnancy started just as my college career ended. I was barely pregnant when I graduated with my Bachelor's Degree in Family and Consumer Sciences. In fact, I didn't even know yet. I didn't take the test until after we came home from a friend's wedding where we saw a lot of family because I didn't want to have to not tell them. I was super duper sick for most of Becca's pregnancy. We had neighbors that smoked (they weren't allowed to, we lived in student housing at USU) and my allergies flared and it was quite a miserable summer. If I showed active CMV symptoms, it would have been hard to tell them apart from everything else.

Our very old school OB (he had delivered my husband's older brother) didn't do ultrasounds himself. He had someone come in and you could sign up to get one. So, he does one and as he's measuring and he says that his machine must be off and that we should go to the local hospital and get an ultrasound there. At the Logan Hospital, weirdly, their machine's measurements were off, too, and we were sent to Ogden to McKay Dee Hospital. At this point, I started to freak out. I was so completely nervous, I couldn't think straight. Of course the ultrasound tech can't say a thing and so we waited for the Radiologist. He was a smallish, brownish man with glasses. He wheeled his stool over in front of me and looked me square in the face. He said something like this, "Something is wrong with your baby. Her brain is too small and there are some other problems. Are you going to abort this baby?" After a very strong NO from us, he continued to outline the damage that he saw and then he said something that got me through the rest of my pregnancy, "She is the same baby you walked in here with." There was nothing to do, but wait until she was born. I was already in love with her, I couldn't deny that. I continued to talk to her and sew for her and picture her in my mind. Disability and viruses didn't cross my mind. She continued to grow on her own curve. She would do this thing where she would stretch out really, really hard, like board stiff and then relax back. Looking back, I'm pretty sure those were seizures.

I had some really strong Braxton-Hicks contractions the night before she was due. I remember thinking that I would try and go to sleep and if I could sleep through them, they probably weren't real ones. I was rather disappointed to wake up the next morning without having gone to the hospital during the night. The next day was her due date, January 12th. That night, I had really strong Braxton-Hicks again and went to bed, again, hoping to be woken up. Around 4 in the morning, I woke up because it hurt and I got up and walked 3 steps to our living room without waking up Geoff. I drank something, ate something and turned on a movie on our teensy TV. Around 6 am, I woke Geoff up. We wrote down contractions and finally went in. She was born around 9:30 am, January 13, 2000 weighing one ounce shy of 8 pounds! A really good weight for a first full-term baby. She'd had a little bit of meconium, but otherwise wasn't under any stress at all. Her small head had made for a very quick labor and the doctor, who had attached a vacuum, couldn't get it off fast enough as she came out in such a hurry!

She was so tiny. So soft. So pink. So perfect. She had fuzzy dark hair and long, skinny fingers.

The nurses got after me the second night because she came back to the nursery too cold. I had to unwrap her and play with her toes to get her to eat. She was such a sleepy eater. The morning we were supposed to go home, I woke up and asked them to bring her to me. They didn't. I waited. I asked again. I waited some more. They finally told me they'd had to put her on oxygen the night before because she couldn't keep her sats up on her own. When Geoff got there and we finally got to go down to the Nursery, she was in a head box. Meaning there was a plexi glass box over her head with a higher concentration of oxygen swirling around in it. They don't usually do this anymore because it can damage the baby's eyes. They kept her a couple of extra days in the Logan hospital because she just couldn't keep her oxygen up. Walking out of that hospital was one of the hardest things I had ever had to do. I didn't get to ride in a wheelchair holding my brand new baby. I walked out, leaving her behind.

After a few days with no changes, they decided to send her up to Primary Children's Medical Center. She rode in an ambulance early in the morning and we followed in our car a little later. My eyes were wet most of that ride thinking of her in a big scary ambulance without me. When we got to Primary's she was finished being checked and she was squeaking as the nurse was doing something for her. She had this little squeaky high pitched cry. I went over (after endlessly scrubbing up) and talked to her and tried to comfort her. When I reached down to stroke a wiggly foot, the nurse told me I was touching her wrong. I immediately stepped back and sat down in the nearby rocking chair and bawled. I didn't want to cry in front of someone I didn't know who was touching MY baby, but telling me not to, but I couldn't help it! She tried to explain to me why she'd said that and how to firmly, gently touch her, but I really felt like the peon at that point.

We got to hold her a lot while we were there. She wasn't there to "fix" anything, they were just trying to figure out why she couldn't breathe the same air we did and keep the oxygen in her blood at high enough levels. IVs changed sites every couple of days and the worst one was the one they started in her head at her temple. She took my milk well, always from a bottle. She had plenty of wet and poopy diapers. She just couldn't seem to get the hang of breathing consistently.

We were only at Primary's for a total of one week. Sometime in the middle of that week, after looking at an ultrasound they had done of her brain through her soft spot, the nurses were encouraged to get a urine sample to grow a culture from to test for some things. They also re-moistened her umbilical cord and took blood samples from there. We were then informed that she tested positive for a virus called Cytomegalovirus and that that is likely what had caused her brain damage. The spaces in your brain are called ventricles, they're supposed to be there. Becca's ventricles were enlarged, meaning extra fluid and less brain matter. Also, the left side of her brain is smoother than the right side. She also does not have a corpus collosum. There were also little white dots on the pictures they showed us that showed calcifications, or where the brain tried to heal itself and left little calcium deposits behind. Her brain was damaged quite severely, but nobody ever said it that way. The wonderful neurologist we were put in touch with just happened to have been studying CMV for nearly 20 years. He gave us a pamphlet or two and told us what to watch for (hearing loss, Cerebral Palsy, vision loss, etc.) and gave us an optimistic, "We'll just have to wait and see what she can do!" I have been forever grateful to him.

The night before we were supposed to go home, a child came in during the middle of hte night with a mysterious illness. By the next morning, he was found to have RSV and all of the babies in Becca's little corner had been exposed! She tested negative and we were able to take her home to Logan, but the next day at the doctor's check-up, she turned blue in his office and we were admitted to the Logan hospital with RSV. Geoff was able to go to classes, having only missed a day or two, so it was somewhat of a blessing. He would drop me off at the hospital, go to class and come get me when he was done. Here, she was still on oxygen (a cannula in her nose) and breathing treatments (nebulizer). After a week, she came home for good, but still on oxygen. We hooked her up to an apnea monitor and oximeter at night to keep her breathing and measure the oxygen in her blood. We kept people away even though I had contracted RSV, too and sounded like I was coughing up a lung!

She got her first hearing aid at 3 months old. They used to do hearing tests in a modified picnic cooler. We had this incredibly nice audiologist (whose picture was in the Ensign one time) whose voice Becca really liked. He was the one talking when he first turned on the hearing aid and my beautiful little 3 month old turned towards his voice! And then when I started talking, she turned right towards me! Miraculous! We used to lose it all the time on account of how tiny it was and we had chosen a clear ear mold. After that, we always chose fun colors! At around a year, we tried another hearing aid in her other ear and glasses. She wore the glasses okay, but it was always so hard to tell if they did her any good. She rarely made eye contact and it always looked like it was a huge effort for her to focus in on anything. Around the 18 month old mark, I finally asked the Pediatrician if she had Cerebral Palsy. She not only wasn't walking, she wasn't sitting or even rolling over. He said yes and that it was there in her file, but nobody had ever said anything.

We had Early Intervention pretty much from the beginning. The regular BabyWatch program came to visit me after she was born and when things weren't following a "normal" schedule, we got set up with a Physical Therapist, Occupational Therapist, Vision Therapist and Hearing Therapist. I had people coming to our tiny student apartment nearly every day it felt like!  She got her first real wheelchair at 3 years old, just in time to start special needs preschool. She got a feeding tube at 6 years old because I started asking about one. She wasn't gaining weight fast enough and obviously wasn't always being hydrated enough. We gave her supplemental calories at night to begin with and she ate by mouth up until she was 9 and we started the Ketogenic diet to manage her increasing seizure activity. We eventually gave up on the second hearing aid as she had never shown any hearing in that ear. We also gave up the glasses because she didn’t look through them as much as she looked peripherally around them. When we tried to strengthen the prescription, she wouldn’t wear them anymore, even when we switched back.

I used to wish really hard for twins. I always wanted twins! Heavenly Father granted me the "blessing" of having twins every time I had a new baby. My other babies passed Becca up right around 4 months old, when they started rolling and sitting. She has grown in her own ways and has a special place in our hearts and the hearts of her 4 siblings. She turned 13 on the 13th of January 2013! She doesn't have a reliable form of communication and still needs 100% support to sit or stand. She is such a pleasant, peaceful presence in our home.

I have always felt like Becca was supposed to come to me just as she is. By all definitions, I should have had CMV long before I ever started my own family. I didn't. And as much as I want to hate CMV and curse it's name forever, I have made my peace with it. It didn't take a perfect daughter from me, it gave me my perfect Becca. That doesn't stop me from teaching and informing and encouraging pregnant Moms to know their CMV status and to follow the hygiene guidelines that prevent it from happening to someone else. Go to StopCMV.org and educate yourself! Let Becca be an example and do all you can to prevent it. But please know that we love her just the way she is and that we're okay with it all.

1 comment:

Carissa said...

I love this! Thank you for sharing it. <3