Baby Tjader's Journey

A life undefined by pPROM, prematurity and Cerebral Palsy.

Welcome to Holland June 28, 2011

Filed under: Family — Aimee @ 7:39 am

I’m so happy to be living in Holland with the love of my life, my best friend, my husband. Happy third anniversary, Tyler Tjader! Thirteen years of togetherness. I love you every single day.

Welcome to Holland
by Emily Perl Kingsley

I am often asked to describe the experience of raising a child with special needs to try to help people who have not shared that unique experience to understand it, to imagine how it would feel.

It’s like this … When you’re going to have a baby, it’s like planning a fabulous vacation trip — to Italy.

You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?!” you say.”What do you mean, Holland? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around … and you begin to notice that Holland has windmills … and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy … and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.” And the pain of that will never, ever, ever, ever go away … because the loss of that dream is a very very significant loss.

But … if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely … things about Holland.

This is the first photo we ever took together. It was Tyler's 18th birthday. I was 16.

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Happy Father’s Day June 20, 2011

Filed under: Photo/video updates — Aimee @ 3:43 pm

 

Part III: A Year Later June 15, 2011

Filed under: Bedrest,Lila — Aimee @ 9:52 pm

There isn’t much to say about the next leg of the adventure, except that it was horizontal, emotional, tiring, and filled with lots of bad television, amazing support and longing looks out my bedroom window. Indeed, every time the sun came out I was reminded that I was missing an entire summer.

I had planned to continue recounting the journey today, but I don’t have it in me. Maybe tomorrow. Yesterday and today has been harder than I thought. We had Lila’s 9-month NICU follow-up appointment yesterday and I will just share with you what I shared with my fellow pPROM moms.

Lila had her 9 month NICU follow-up appointment today with Dr. Hoekstra of the famous micro-preemie study: http://www.youtube.com/watch?v=7tVXAfkTdpc It was wonderful to see him as he was there the night Lila was born and grew to really love her while she was in the hospital. He’s one of our angels in all of this.

Lila was “tested” by… an occupational therapist and scored well on the cognitive, social and behavioral pieces, but is lagging quite a bit behind on her motor skills. She has increased tone in her legs, but good range of motion and flexibility that should serve her well. She also has increased tone in her right upper extremity, which is why she prefers to use her left hand. She has a head tilt, but it’s not a true torticollis, because she changes the sides that she tilts to. It’s more of a weak trunk/midsection issue.

She weighs about 14 ½ lbs, is 25 ¾ inches long and her head circumference is 16 1/2 inches. Going by her corrected age, that puts her in the 24th percentile for head, 30th percentile for height and 9th percentile for weight. Dr. Hoekstra is happy with her weight gain and does not want us doing anything special to fatten her up.

I guess we already knew Lila was behind motor-wise. I see your babes doing things that Lila’s not even close to doing. It’s tough knowing that she may very well end up with a diagnosis of Cerebral Palsy, but you know what? I’m ok with that. Everyone has been so impressed with her cognitive skills and that’s what really matters to me. I remember back in the hospital all I was focused on were her lungs and she’s kicking butt in that department. Dr. Hoekstra believes she will walk unassisted, but probably not by 18 months. She may also be a candidate for botox injections to relax her stiff muscles.

Educating myself on Cerebral Palsy is something I’ve avoided like the plague, because I was so afraid. But I think I’m ready. I’m ready to take this on. I wouldn’t change anything about Lila. She is who she is because of her past and she’s perfect. I always said I’d rather have a killer personality than be picked first for the kickball team. And Lila definitely has a killer personality. She charms the pants off everyone she meets and she’s a very good baby. She has not been sick ONCE — knock on wood – she sleeps through the night and she likes guacamole. My kinda girl, what’s not to love!

These follow-up appointments are difficult and nerv-wracking. I was such a bundle of nerves by the time we left, I bawled my eyes out. Tomorrow’s the day I pPROM’d a year ago and I took the day off from work. I’ll have to figure out a good way to celebrate with my girl.

Much love to you all and your sweet babies as we all go through varying degrees of strife. Every single one of our babies is here to teach us something important. I talk about oblivion on my blog. Remember what it felt like to be oblivious? Yeah, me neither. But I also never thought I would feel so important. I’m in the throes of the most important job of my life and that’s making sure Lila gets every opportunity to do whatever it is she wants to do in this world. She’s a warrior and I’m just her cheerleader.

That was written yesterday when I feeling happy, positive and strong. Today? Not so much. It’s been a tough day. Lila had her 9-month appointment with her pediatrician and I’d planned to ask him about when and if we’d receive a diagnosis of Cerebral Palsy. I’ve gone back and forth about sharing this information, because I don’t ever want Lila to be labeled with anything. I do not want anyone to feel sorry for us or treat Lila any differently than before. However, I think by sharing our story, it may help others and might even open up your hearts and minds to what disabilities look like. If diagnosing Lila with CP were necessary to get her medical services, then she’d already have the diagnosis. But because she’s already receiving the services she needs, there’s no need to give “it” a name. Because of Lila’s brain injury and her increased tone, that pretty much puts her in the camp of having CP. HOWEVER, the umbrella of CP is HUGE! For many, the term “Cerebral Palsy” conjures images of severely disabled children in wheelchairs. Sure, that exists, but there are also many people with mild forms of CP who get along just fine and lead happy, productive lives. This is what we’re hoping for. Besides, Lila’s going to have the highest IQ of anyone in her class, not to mention a darling personality.

It still makes me sad. No mother wants this for her child. I’m angry that Lila may struggle to do things that come easily to other children. Tyler and I are both pretty athletic (when we want to be) so it’s hard to imagine her not being able to do something that she wants to do. I’m sad now, but I know that tomorrow morning when she wakes up, that smile will make all these feelings disappear. Her uni-tooth grin has a way of doing that.

So now, we wait and continue doing what we’re doing. The weekly therapy and doctor appointments are draining at times, but the hospital has been a part of our lives for a whole year now. We don’t know any different. On tomorrow’s to-do list: keep the faith, carry on and remember to smile. Tonight? Cry it out and finish that bottle of wine.

Goodnight my loves! Here’s a quick video from Lila’s doctor appointment to show you that happiness and love can be found in any situation … you just have to look for it.

 

Part II: A year later June 14, 2011

Filed under: Bedrest,pPROM — Aimee @ 9:29 pm

After a night with no sleep, I was wheeled over to the high risk doctor’s office for my ultrasound. Tyler and mom were with me. The ultrasound tech pointed out the spine, head, fingers and toes. We listened to the baby’s heartbeat — strong and awesome — and even saw the baby yawn. The tech took measurements of amniotic fluid surrounding the baby and, even though I had no idea what to look for, I knew before the high risk doctor came into the room that things didn’t look good.

Dr. Fairbanks was very serious when she came into the darkened room, the only light, a glow from the monitor machine. She quietly took control of the wand and moved it across my barely pregnant belly. Based on my account of what happened, the positive pH test and the low level of fluid showing up on the ultrasound, it was clear that my water had broke prematurely. What to do, what to do. Fairbanks placed her hand on my leg as she explained in very sober terms the importance of amniotic fluid and the nil chance for the baby’s survival without it. Without it, the lungs don’t get a chance to develop, and the baby isn’t able to swim freely and stretch out the arms and legs.

Most women go into labor soon after their water breaks and if this happened to me, there would be nothing they could do. Termination was certainly an option, but not one that Fairbanks recommended and not one that sat well with me. How could I possibly make the impossible decision to end the life inside of me? The baby’s heartbeat was beating so strongly right there in front of me, yet what was going to become of this tiny life without the essentials for growth and development? Then Fairbanks offered some hope.

“If I were you, I’d go home, get in bed and stay there, and hope for the best. That way, you’ll have no regrets,” she told me. “There’s a reason I do what I do. I’ve been doing this a long time and know a lot of kids who wouldn’t be here had their mothers decided to terminate their pregnancies. There’s a chance you could have a baby home with you for Christmas.”

Tyler and I didn’t even have to discuss it. We knew by looking at each other that that’s what we’d do. Fairbanks finished up the appointment by explaining what I was allowed to do and not allowed to do on strict bedrest. She assured me it wouldn’t be easy. Any images I had of putting on a cute top and heading to Target to shop for baby things … well, I’d better just get rid of them, because I wouldn’t be able to do that. I couldn’t work. I couldn’t meet my friends out for lunch. I couldn’t walk the dogs. I couldn’t use the stairs. I’d stay home for six weeks, then I’d be admitted to the hospital until I delivered the baby. I was looking at a possible four months of total bedrest.

After being discharged from the hospital with a prescription for antibiotics and instructions for bedrest, I walked into my house, greeted my dogs and slumped into my mother’s arms. I was unable to process what the future had in store for me, but I was so damn scared. I had one last good cry, then I wiped my tears, got in bed and prepared myself to fight the good fight.

 

Part I: A Year Later

Filed under: Bedrest,pPROM — Aimee @ 7:53 am

One year ago, I was hospitalized for Preterm Premature Rupture of Membranes (pPROM). I’d never heard of it before, but I’d spend the next 95 days engrossed in medical literature, Google results and online forums with other fearful moms who had nowhere else to turn but to each other. I want to take some time over the next few days to reflect upon the last year and celebrate the present. Thank you for reading and following our journey.

Wow, a whole year gone by. 365 days. 12 months. I see numbers differently now. I guess it was the year of numbers measured by days spent in the hospital, centimeters of amniotic fluid, weeks of gestation, weight of the baby, oxygen saturation levels, grams gained in a day, and so on and so forth.

It was Tuesday June 15, 2010. We had spent the previous weekend in Bemidji for a friend’s wedding. I was 18 weeks pregnant, finally outgrowing my jeans and getting excited to shop for some new maternity clothes to show off my baby bump. I was in the midst of the best part of pregnancy – the second trimester – and blissfully unaware of what the next year would bring.

I remember what I was wearing. I remember what I ate for lunch. I was at work fact-checking a story I’d been working on, and while on the phone, I felt a gush. I finished the conversation and headed for the bathroom. I thought I’d lost control of my bladder and was experiencing an embarrassing side effect of pregnancy, but once I got to the bathroom, I became confused. I didn’t know what it was, but it wasn’t urine. I’d need to run home to change clothes and I’d call my midwife on the way … just in case. I left the office intending to be back in 20 minutes. Little did I know I wouldn’t be back for seven months.

“You better go to the hospital.” The nurse on the other end of the phone line spoke with concern. Still, I was oblivious. Oblivion. That’s a state of being that I sure do miss. Once I got checked into the hospital, a nurse did a pH swab test to determine if I had indeed lost my amniotic fluid. The test came back positive, but because the tests can be wrong, she also did an ultrasound. The ultrasound showed low levels of amniotic fluid, but a healthy heartbeat. I didn’t know what this meant, but I knew it wasn’t good, so I called my husband and he came right away.

An OB came into the room to explain the situation. He told me he sees this once-a-year at the most and the baby never survives. It’s not common and it’s not good, he said. There are a few options, he told us. We can either “admit you and take care of this tonight, however you will have to deliver the baby and at 18 weeks there’s no chance for survival … or, you can go home and let nature take its course, and come back when you go into labor.” He explained that most women deliver within 24 hours of their water breaking. I began asking questions, trying to piece together what little information I had. Without saying it in so many words, the doctor urged me to terminate my pregnancy despite the strong heartbeat of the baby inside. He said the risk of developing an infection if I chose to carry on with the pregnancy could put my life at risk. And, he said, “Sometimes this is nature’s way of weeding out the weak … there may be something wrong with this baby and this is your body’s way of ending it now.”

That’s when the severity of the situation set in. I was about to lose my second pregnancy; everyone KNEW about this pregnancy and I would have to explain this to everyone. How could this happen to me? Why us? Why? What is wrong with me? Why can’t my body carry this baby that we want so badly? I called my mother and shared the heartbreaking news. She got in the car immediately.

Next, a high risk doctor came in the room and took over the ultrasound. She actually thought the fluid levels looked OK – low, but not dire – and wasn’t convinced that my bag of waters had ruptured. I stopped crying and had a glimmer of hope, but I kept leaking fluid as I lay in the hospital bed and I knew – I just had a gut feeling that this was not going to be OK.

We finally had a plan. I was going to be admitted to the hospital for monitoring and a round of IV antibiotics. The next morning, a level III ultrasound would hopefully rule out the loss of amniotic fluid. I called work to say I wouldn’t be back for the rest of the day and would keep them posted. That evening, my mom and husband exuded positivity, but I had no hope. I just knew.

 

NICU reunion June 4, 2011

Filed under: Lila,Sunny days — Aimee @ 1:54 pm

We went to the Baby Steps 3k/NICU Reunion for Children’s Hospitals and Clinics Minnesota. It was a fantastic event and I’m so happy that we decided to go. We were hoping to run into Lila’s nurses and doctors. Ironically, the only nurse we saw was the one we REALLY didn’t like and asked for her to be removed from Lila’s care team. Awkward, yes. I give her a lot of credit for going to the event and have been questioning my opinions about her ever since.

We saw one of Lila’s doctors, but didn’t get a chance to talk to her, because she was swarmed by people and Tyler had to get to work. Dr. Nina Perdue is solely responsible for Lila getting out of the hospital when she did and being allowed to come home with an NG tube vs. a G-tube. It was the difference between surgery or not and Nina trusted us enough to take care of the NG tube and give Lila a chance to prove she didn’t need a tube surgically placed in her tummy.

We decorated a card with Lila’s picture, which will be used to make a quilt that will hang outside the NICU. We ate a great lunch, took lots of pictures and enjoyed a warm sunny morning as a family. These are things we’ve waited a long time to do, so now that we finally get to experience IT ALL, we try to make the most of every moment. There was an isolette set up with preemie-size diapers and socks and it was crazy to see all that again. We perched Lila on top of the glass and she flashed her signature toothless grin. Here’s a peak at the day:

Enjoying her stroller "big-girl" style!

At the starting line ready to walk!

Taking a break for breakfast.

Lila's square for the NICU quilt.

Look how far she's come!

She doesn't appear to have an PTSD from seeing the isolette, but I sure do!