Four years ago today I was prepping for surgery. Not just any old surgery, but one that would yield me a sweet, sweet reward! A baby!!! It’s 10:42 as I start this post and I remember being in the OR at this time not so long ago. It feels like yesterday in fact.
I did a post like this one last year for C’s birthday as I wanted to do a little record keeping and I knew that there were a couple people who would actually enjoy reading the whole shebang. I realized aside from my own personal journals that I enjoy keeping, I really haven’t put T’s story out there yet! So… again, more for my own record keeping, but if you’d like to continue reading you’ll find some interesting tidbits about my life and T and her birth and oh yeah… its also a doozy so get ready for some reading!
T was conceived in celebration of D’s finals FINALLY being over. Despite what some think, she was actually “planned” as much as you can plan for a child. It took me 5 months to get pregnant with her and I suppose that thought of D finally being done with school for the summer was enough excitement to spark something! The pregnancy with T was rough. From the beginning I was pretty sick and puked quite a bit. At about 6 weeks, I got to make a lovely trip to the ER for some abnormal bleeding. This was the first time I got to see my little peanut and while it was no fun being poked and prodded, it was incredibly amazing to see my little blob start out with a heartbeat and no noticeable form of a human being yet. That night after a very long 6 hours in the hospital, we were supposed to go to D’s parents house and announce our wedding date to his siblings. I was so sick and we ended up calling D’s mom and letting her know we weren’t coming. She in turn barraged D with questions as to why. At this point D’s family were the only people we HADN’T told! She reacted with sobs and sobs… unfortunately not sobs of joy. This began a long pregnancy(and really the last 5 years) full of awkward moments with his family and needless stress on me. Can I just say how glad I am that things in that direction have changed? No more awkardness, no more fake BS… Ahhhhhh its like a breath of fresh air after being stifled and suffocated for 5 years.
Anyway, back to the story. T’s pregnancy was full of puking… EVERY.DAY. In high school my father had Boerhaave Syndrome. I’ve always had a severe aversion to vomiting because of that. I suppose pregnancy really alleviated any of that. My mucus membranes went on high alert and if anything got caught in my throat it would induce vomiting. If I stayed in a steamy shower for more than 5 or 6 minutes, it would induce vomiting. At one point, if my toothbrush hit my back molars it would start me gagging, and then, you guessed it….more vomiting. Every morning I’d go through a ritual of eating breakfast, puking it up and then eating it again…. I think partially why I gained a whopping 80 pounds!
At about 11 weeks we went in and saw our little blob again, only this time to my surprise and delight she was looking more like a person and less like a blob! She had a fully defined head, hands, fingers, legs, and toes! She looked like a person! We watched for a few minutes and in one of the most incredible sights I’ve ever seen, this little thing inside of me was playing! She’d kick herself up the placenta wall and slide back down with her hands in the air. It sounds absurd, but I have D’s word and the doctor’s that indeed this actually happened! It was so fun to watch and absolutely fascinating to me as I could feel nothing. This sweet memory stayed with me throughout the next 7 weeks until I could actually feel her playing those crazy games inside of my belly!
While the first time I could really feel T move on a regular basis was around 18 or 19 weeks, though I did feel her move once before. On the 4th of July D and I were driving home from a very weak attempt to view fireworks. It was really busy and we’d just merged onto a very crammed freeway. Finally we started to move some and all the sudden a car darted right in front of us. D reacted with slamming on his breaks and we were nearly hit on the side as well as hitting the person in front of us. I about had a heart attack, but I also felt the weirdest reaction from inside- like someone had mini-kicked me in the stomach. I later began to know this feeling quite well. Tori was a very active baby in utero! When I really started to feel her move it was a lot of fun. She’d get the hiccups frequently and while the novelty of those wore off pretty quickly, it still is a very fond memory for me. I worked full time when I was pregnant with her up until two weeks before I delivered. People at work would have the funnest time watching her re-position herself ; it would literally move my entire stomach! D felt her move quite a bit. In the beginning it was almost as if she’d tease him. She’d be kicking regularly in one spot- he’d place his hand there and she’d stop. Towards the end though, when D and I would cuddle at night she’d start kicking wherever he put his hands. It was so neat and something I still miss!
Early on we knew we wanted to find out T’s sex. D’s family is all boys- he has one sister and at the time, had 3 nephews. No girls. I told D that I was sure we’d have a girl just as the universe’s humor to his family. His family, who were outspokenly not fans of mine, would now get a little girl but only through me! D and I joked about this the whole pregnancy. When we’d discuss it logically though D always said he was sure it was a boy, because his family isn’t capable of making girls. Around 10 weeks, I woke up in the middle of the night after a dream, rolled over and woke D up and told him, “Its a girl” and went back to sleep. We discussed it the next morning and I was still dead set that it was a girl. Around 19 weeks my truth was confirmed! We were SO excited. Before D and I met I had already had the name picked out and it was something that we’d agreed to before we’d even thought about trying for T. I told him this was going to be the name of my first daughter and if he didn’t like it then it probably wasn’t going to work out! =) Thankfully he loved it and even came up with her nickname, which is what she goes by most often now. That day, we celebrated over a bagel sandwich brunch at our favorite place, The Bagelry, which has now gone out of business. =( We called all of my family(where it was no surprise it was a girl… I have 2 sisters, and my mom is one of 5 girls) and they were happy for us! That day we also went over to D’s parents house and office to show his parents the sonogram video. I specifically remember being infuriated because at a time when D should have been with me and holding my hand and loving on me, his mom wanted him next to her while they held hands and watched OUR baby on the video. When we showed D’s dad he was pretty indifferent with very little reaction. Both things that still to this day bother me.
I was determined to have as normal a pregnancy as possible. No weird things to crave, no real emotional breakdowns… of course I must have been nuts because there were plenty of odd things I craved and MANY emotional breakdowns. In the beginning I wanted steak ALL.THE.TIME. There was one week we had steak 4 days out of 7 and of the other 3, at least 2 had some sort of beef in them. As we found out early on, I was severely anemic. When I took the iron supplement(which aggravated my stomach) my cravings for steak would subside some, but it was a regular meal during those 10 months. Something that was also regular were hot wings! I HATED spicy food before I became pregnant, but if I wasn’t craving steak I was craving hot wings; the more hot, the better! I’m nearly positive that not a week went by where we didn’t eat hot wings AND steak at least once. My other favorite thing was dark chocolate and ice cream, preferably matched together. During my pregnancy Ben and Jerry’s had a “Chocolate Therapy” ice cream. We really should have been purchasing that in the cases. I probably went through 1-2 pints of that a week. Yet another reason why I gained 80 pounds! While none of my cravings are really that odd, it was the combination of things together that I’d want. I REALLY liked chocolate milk and steak at the same time. Chocolate milk was also something I drank constantly. I never liked milk previously and all the sudden I was drinking 4 gallons a week!
Emotional breakdowns were pretty common. As much as I think I certainly was pretty moody, I attribute a lot of it to the fact that I was in the middle of some pretty heated familial issues. D’s family were not happy we were together, thought that T was a “mistake” and “unplanned”(lets face it, a LOT of people did), oh yeah and throw in there that I got married when I was about 4 1/2 months along! There was so much stress, so many issues and if I had it to do all over again, I would have exed the marriage part of it! It was too much stress, too much drama, and really, I don’t think a certificate or piece of paper makes the love between two people any stronger. All that said, there are plenty of funny stories D could tell about my terrible indecisiveness that often led to outright bouts of sobbing. He has about 5 top favorites, one of which is this one…
One night after we’d both finished work, we went to get dinner. Deciding what to eat(besides steak, hot wings, and ice cream) was often my biggest problem. It would frustrate me so much that I’d get really hungry, really cranky, then REALLY bitchy… REALLY fast. So after an evening of driving around- literally for about 2 hours trying to decide what I wanted to eat(this is when gas was “absurd” at 1.80/gal) we just went home. We got up to the apartment and I proceeded to flop on our bed and sob my eyes out. D came in and asked what he could do and I yelled at him to just leave me alone. I didn’t know what I wanted, why I couldn’t figure it out and more importantly why I couldn’t talk to D about anything, even what I wanted to eat! So, he got frustrated and just calmly said, “You have until 10pm to tell me what you want. I’m not going out after that.” It was about 9:20 at the time. I continued to cry for another 20 minutes, then finally figured it out! I wanted lasagna! Not just any lasagna, but Stouffer’s meat and cheese lasagna. I called D in the room and like a little kid, with the pouty lip and all I told him, “I want lasagna. but ONLY if its Stouffer’s” He breathed a sigh of what I believe to be a mixture of relief, pissed off-ness, and perturbed-ness. It was 9:45. =) As I’m writing this D is nagging at me to mention that not only was it 9:45 but this was after we’d drove around for forever(I mentioned that already!) but also that we were in the Fazoli’s line and right before ordering I decided I didn’t want Italian and we drove straight through the drive-thru without even ordering! Only hours later did I decide I wanted lasagna…and not just any lasagna, but the kind that takes an hour to cook. By the time we ate that night I think it was 12:30am. Tee hee hee! This makes me laugh to this day. If you ever get the chance- ask D to tell this story from his perspective. Its priceless.
The rest of the pregnancy went by with very little out of the ordinary daily puking ritual and monthly, then bi weekly, then finally weekly weigh-ins to which I often went home and cried about my ever growing belly, and would then proceed to drown myself in another pint of Chocolate Therapy…looking back now there are two things I wish I would have done- #1, not eaten that much ice cream, and #2, been more grateful for the fairly normal pregnancy I had. I was so lucky that the bleeding did not end in miscarriage. On top of the early bleeding, I also had two pretty major falls on the ice. We lived in a complex with terrible parking lot maintenance and I slipped and fell twice within a week before going into labor. Both times we were lucky that nothing horrible happened, though I did get some pretty bruising!
My due date with T was originally February 12th. It was then moved up to the 8th, then the 6th, then the 2nd… About a month before my due date I was still working and got very sick. I kept going at work until I physically was not able to speak anymore. My last day of work was January 14th 2006. I called in sick for a week straight and then used what vacation I had. At that point, I’d pretty much decided even if I wasn’t deathly ill, I was so miserable I was not going back to work until I had this baby! D was working a later shift and didn’t have to go in until 1pm, so we were able to spend our mornings sleeping in together. This particular morning was a Tuesday. I’d just had THE BEST sleep of my entire pregnancy- probably my whole life, and felt so well rested and energized. I suppose that should have been my first clue. D was making breakfast and I’d just finished a bowl of HoneyComb cereal(breakfast of champions right??). I stood up to bring my bowl in the kitchen and after taking two steps, my pants, and the whole floor below me were soaked. Our place was very small, but I just started yelling, “D? D?! D?!?!?! I THINK MY WATER JUST BROKE!” He asked me if I was sure- as if I’d really pee my pants or something?! I looked at him and said, “POSITIVE!” I changed pants, got cleaned up a little and we both just looked at each other-frozen with fear! It was January 24th, still 10 days away from my due date! I could NOT be in labor!! Neither of us were ready and I just looked at D and said, “Let’s just stay home. I don’t want to go to the hospital ok?” He looked at me and got my bags and off we went.
I immediately called my family. Neither of my parents answered and my little sister was in school. I texted her and she was so excited! She said something like, “ARE YOU SERIOUS?! THATS AWESOME!” A couple hours later I was able to get in touch with my parents. My mom was at home in OR and my dad was on business in TX. Labor was pretty uneventful and I was heavily induced. At the highest point I received 24 units of “Pit” the labor inducing synthetic hormone oxytocin. I went 6 hours without any pain medicine, but when I reached about 18 units of pitocin, I was ready to kill someone. It was so painful and it was as if my body was being forced into something it wanted no part of… come to find out later that’s pretty true. I’m now a big advocate for natural labor and delivery and believe it’s entirely possible and a much more gratifying experience then a “normal” western medical birth. The last 4-5 hours of my birth were spent doped up on an epidural, an experience I’m really not a fan of. I can handle the pain and the big needle and all that goes with that, but the dopey feeling and the inability to control anything from my waist down was what drove me insane. And it didn’t really even take away the pain- dull it and make it less noticeable? Yes, but by no means was it painless.
After about 10 hours of pit I was dilated to only a 4. Not very promising for being on that much pit if you’re familiar with birth and its processes. At about 9:30 pm my OB came in and just said that it was not doing my body or my baby any good to keep prolonging this and that “we should have done this hours ago”. In all actuality, I think he really just wanted to get a decent night’s sleep, and being that it was creeping up on 10pm, it was time to get the ball rolling. I was so upset. The LAST thing I wanted was a c-section! I asked if we couldn’t wait a little longer and see if anything had changed. One hour later we were no further ahead and it was decided a c-section was now necessary and becoming emergent as T’s stats were not looking as strong as they previously were, and I was exhausted from the up and down game of induction. We went in for surgery around 10:30.
During this whole time I’d been in frequent contact with my family. At about 3 pm my dad had called and said he was in a business meeting in Dallas when I’d called. He sounded very excited, with also a twinge of nervousness. At this point I hadn’t had any drugs and I remember him specifically telling me, “Don’t try and be tough, just get the drugs, you’re not going to be able to handle it.” If I’d only known it wasn’t about “being tough” and that really, with the right support anyone can handle it AND embrace it and most importantly enjoy it! Anyway, the second time my dad called D answered then said, “I think she wants to talk to you” I got on and he just said, “I’m on my way!!!” I was so excited. More than anything I wanted someone from my family to be there for me. I knew D’s family was not going to be there for me. I was nervous because D often was steamrolled by his parent’s manipulation and I knew I needed someone in my corner. My dad got to Salt Lake and then took a taxi to the hospital. He arrived while I was in the OR, and just minutes before T was born! I won’t go into the gory details, but surgery was no fun. After they got T out of me, D left with her and I was left with no one. The docs were preoccupied and discussing cars from the 60’s, Woodstock and the Beatles. No one was there for me and I was left alone with my arms strapped to a table wondering what the hell was going on and how long this was going to take. Specifics aside, it really was the most humiliating, degrading and lonely experience of my life and one that I will never repeat again in that fashion. None the less, T was born at 10:51 on January 24th weighing in at 8 lbs 2 oz and 20 inches long. She screamed right away and continued to scream until D went over and talked to her. He’d talked to her my whole pregnancy and and immediately, she recognized his voice and calmed down.
After finally being wheeled into recovery my dad was able to come in and I was able to really see T for the first time up close and for more than a few seconds. My dad gave me a huge hug and asked how I was doing. I think I responded with something along the lines of, “Other than being sliced and diced, I’m fantastic!” D’s parents also felt free to walk in and be there as well. Awkward because I had no control over my limbs, was in a fairly revealing hospital gown and had never really been any sort of intimate or close with these people in my life. My dad called my mom and told her I was out of surgery and said that he was there with me. He then handed me the phone. Forgetting I had no control over myself because of the extra meds in the epidural for surgery, I took the phone and proceeded to poke myself in the eye with it. No bueno… so my dad held the phone for me as I talked to my mom for a few seconds. I remember the sheer joy in my mom’s voice. She was crying and was so excited. Even now, it brings tears to my eyes. To my dad’s credit he realized that it was getting late(past midnight by this time) and that I had yet to spend any alone time with this baby and D! He asked if I wanted to start feeding her and that I could have some privacy if I wanted. I just laughed and said I wouldn’t be feeding her until I could control my own arms! To this day the next comment infuriates me. D’s dad then promptly interjected, “Well someone has to start taking care of this baby” I sat there for a few seconds stunned. D did nothing, and it was a weird silence for a minute or two. I could not believe someone would have the audacity to say that after all that I’d just been through! I looked at my dad with tears in my eyes and asked him if he would go and hold my daughter(who was in a bassinet at this point) for me, since I was not able to. He got pretty choked up and then brought her over and leaned close to me so I could feel her. My dad has never really been the most sensitive person, and often times can be pretty brash when it comes to emotions. Never before had I seen this or felt this way. It to this day is a memory that I hold very close to my heart. This little girl had changed something in my dad. And she’d changed a helluva lot in me. Thankfully when I recollect that whole experience, the bitter is quickly followed and trumped by the sweet tenderness that my Dad showed to me and to T.
A couple days later my Dad left and my mom came. They saw each other briefly when they passed in the airport terminal! My mom came up to the hospital every day and sat with me and D and held T and relished in being called “Nana”. It was so sweet. My mom and I have always had a pretty comedic time and I remember begging her to stop making me laugh because my incision would hurt so bad! It was such a relief to have someone there to help pass the time away. Her job quickly came to be the forewarner… never before in my life had I felt so intruded on! Dave’s grandparents showed up once while I was alone and feeding T- completely topless might I add. Dave’s family all came over- children and all- one night. The snack cart boy walked in two evenings in a row and got a full frontal view! There was a nurse who I deemed, “The boob nurse”, who thought that her services were needed to facilitate the feeding between me and T! I was mortified and my mom often laughed at my reactions then quickly filled the obvious need for door guard/forewarner!
After 5 days we finally went home!!! After an eventful drive home where D had to save our lives on more than one occassion, I climbed the 3 flights all the way up to our apartment. My sweet mom had made sure everything was picked up and cleaned up. D had scrubbed my amniotic fluid out of the carpet and it was SO nice to be home! After feeding T, my mom suggested Dave and I take a nap and she’d come get my when T woke up and was hungry. I was so excited to be in my own bed. I crawled right in and just as I was falling asleep my mom came in. This was my reality check and welcome to motherhood. I nearly started bawling when she told me she was hungry again! It had been a half hour! I got up, fed T and the next thing I knew I woke up to my mother holding my boob. My mom and I have a completely different version of this story. She claims that T was suffocating because I’d fallen asleep and hunched over, leaving her no room to breathe and that she saved T’s life. Really, I just dozed off for a few seconds and she started to breathe like a hoss, so my mom got scared and came over. As soon as she touched my boob I woke up- I’d just escaped the boob nurse… no way was my mother now becoming that!
After two weeks my mom left and went back home. D and I adjusted to life with T and things were going pretty smoothly…. then colic set in. I thought I was going to die. T would scream for 5-6 hours a day. Once, she’d woken up a few minutes after D left for work and literally screamed for 7 hours. She’d eat for 10 minutes once an hour and then continue to scream. Every time she’d eat I’d sing to her and beg her to stop screaming. No go. I finally called D at work and asked him to come home. I was at “that point” where I figured only terrible moms went- where you’re ready to kill yourself or your child because you just can’t handle any more screaming. Thank God D worked across the street. He came home and I left the house for a little while. T had colic for about 3 months and while they felt like they were the longest months of my life, I think it gave me a new kind of patience, but also a new kind of compassion for others. So many moms are not willing to admit they get to that point. so many people end up hurting themselves or their children. Its a highly stressful situation and I’m now the first to tell any of my local friends that I’ll be over at the drop of a hat if they need something. I know now that it makes you a better mom for asking for help when you know you need it instead of acting like you’ve never felt and thought terrible things.
Early on I noticed T had some issues with her eyes. She had a really hard time focusing and I felt like when I looked at her she’d be trying to focus on me but couldn’t. I brought this up to her pediatrician at her 6 week appointment. He brushed me off and said that its normal and it would straighten out. Again at 2 and 3 months I brought this up and how nothing had changed. She’s sit in her high chair and move her head sideways to look at things. I videotaped this as well as brought pictures. After discussing the pictures I told him he could send us to a specialist or I’d find a new pediatrician. He sent us to a specialist… Who took a 5 minute look at her and he sent us to a pediatric specialist. At about 6 months T was diagnosed with ONH, or Optic Nerve Hypoplasia. A seconday condition that happens occassionally is called SOD, or Septo- Optic Dysplasia. T had an MRI done at 6 months to rule out SOD and to take a look at the glands in her brain. It was very frustrating but its been something that has been a growing experience for me so much. I’ve realize all the hopes and dreams that I have for T can still be possible. Its a little (ok a lot sometimes) more work then a “normal” kid, but T is not a normal kid. She is so stupendous and amazing and incredible that any relatively small thing like this we have to go through, is no big deal in the grand scheme of things. Do I wish she’d been born normal? Certainly. Do I think life would be easier? Of course it would, especially for her. But I would not trade T or her “baby eye” for anything. She’s such an amazing girl. Right now she does gymnastics and often times the subject of her eye will come up with other parents. Always when I tell them that she’s legally blind in one eye and has only hand-motion vision in the other, they are nothing short of floored. T has done an amazing job at adapting to and making the best of what she has. She’s an example to me every day.
The first couple years were pretty difficult, not being able to tell what she could see and what she couldn’t, going to doctor appts, checking out the other specialists available and their opinions… in the end we were left with little to go on. The “solution” to ONH is sometimes a surgery to straighten the eyes out so they appear more normal, but there is ultimately nothing they can do for ONH patients. I was infuriated. In the last year I’ve found an investigational treatment offered in China using stem cells. Beike Biotech is a leading company in China that many parents with ONH kids have gone to. Its been most frustrating living in a country that is supposed to be one of the best in the world, but yet I have to take my daughter to a third world communist country in order to receive the medical benefits she needs. Right now this is the only option out there. Its about $30,000 plus the cost to get over there and sustain your life for 30 days. The treatments are via lumbar puncture and IV and are spread out over a month. I hope to one day be able to see this treatment here so that we can start offering not just ONH patients, but all patients this amazing opportunity and chance at a new life. What a relief that would be to hear “There’s something we can do for you though”.
I cannot believe today is 4 years since all this crazyness started!!! I wouldn’t trade a minute of it. T is such an intelligent little girl with so much to offer the world. I’m so lucky to have this cute little spitfire as my daughter. She’s incredible. She keeps me on my toes and makes me proud every day. She’s the best big sister and the best helper in the world when it comes to the kitchen!
To my sweet T- Thank you for coming into my life. Thank you for putting things into perspective for me and for loving me all day, every day. I’m so sorry for the times I fall short of being less than everything you need. You are my sunshine. I’m so glad we’re buds and please always remember how much I love you. You’re beautiful and I’m so happy that you’re part of my life and my family. Thank you for being you. Thank you for all your silliness and giggles. Always remember who you are and where you came from. I love you so much! Happy Birthday T!!!!!!!!!