Baby Tjader's Journey

A life undefined by pPROM, prematurity and Cerebral Palsy.

Why I fired my kid’s therapists August 28, 2013

Filed under: Constraint therapy,Lila,Sunny days — Aimee @ 11:06 pm

Ok, that’s a lie.

Nobody’s been fired, but after some very deep soul-searching and many conversations with her top cheerleaders, I decided to pull Lila out of therapy for the next 30 days. Yep, even her beloved horse therapy. She/we have had a busy summer and soon she will turn 3. The next round of constraint therapy begins Sept. 30. Then preschool starts. Wow, that’s a lot. So I made a very conscious decision to give Lila (and us) a much needed and deserved break. For the next 30 days, Lila will be trading therapy and clinic time for visits to the zoo, water park, Dairy Queen, museum … well, you get the picture. Somewhere  during that time we’ll throw in a flamingo-themed birthday bash for good measure.

As much fun as all of that sounds, it wasn’t an easy decision to make. When  you have a child with developmental delays, you feel like your best is never enough. “I should encourage her to use her right hand more.” “Lila should spend more time weight-bearing and less time in her chair.” “I should get up before Lila to clean the house so I don’t have to do it while she’s awake.” “I should explore more alternative therapies.” Those thoughts — and the guilt — fade away over time. But they never completely go away.

There came a time when I started to feel more “normal” in a clinic or hospital setting than I did out in the real world. No explaining to do. No telling Lila that she can’t jump in the bouncy house with the other kids, or leaving social functions early because my back can’t handle the constant “walking” Lila insists on doing to keep up with the other kids. (God, I love her for that, but ouch, my back.)

Therapists, as well-intended as they are (and we have some of the best), don’t always know what a day in the life of Lila is like. So when they suggest this therapy or that piece of equipment, my heart sinks and my mind races: “How can I juggle the schedule to fit in one more appointment? Where can I trim the family budget to allow for one more thing that our wonderful health insurance doesn’t pay for?” *bangs head on table * hugs my kid * guilt * repeat

I’m at peace with my decision after experiencing a therapy-free life the past week. Mornings are fun and fancy-free. There’s time to drink of cup of coffee while we make waffles (Lila stirs the batter and even uses her right hand). She says hi to everyone at the local waterpark with her Dad. She shocks everyone by getting the hang of this potty training thing. She meets her preschool teacher and checks out her locker … her very own locker! She stays up later because I can’t resist “Mommy, play with me?” coming from those sweet little lips and those big blue eyes.  She samples new fare at Costco where we practice sitting in the cart while holding on with two hands.

You see, therapy is everywhere. Sometimes you just need a break to see it.

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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!

 

Reminders May 19, 2011

Filed under: Sunny days — Aimee @ 4:43 pm

I’ve had a very good week considering all the peculiar messages that have come my way. You know when you take notice of something that you’ve never seen before, then suddenly it appears everywhere? Well that’s been my week in a nutshell.

I returned to work on Monday and felt really good about it. Of course it was tough leaving Lila again, but we both are in much better places this time around, so I feel a sense of peace. I got to work and checked my mailbox. I opened up a press kit and the words stared at me: “Preemie Parents: 26 Ways to Grow with Your Premature Baby.” Huh. The blue folder contained press materials for a new book mostly about getting through the NICU experience. Did some PR company know about me? Is someone trying to tell me something? No, probably not. A co-worker probably received the materials and passed them on to me. No big deal, but a gentle reminder nonetheless of the past eight months.

Next up: “Why having kids is bad for your health,” a TIME magazine article about mothers being unhealthier than non-mothers because they have less time to exercise and eat well. Well isn’t THAT stating the obvious.

And for the kicker, the words that sent shivers up my spine and took my breath away. “Baseball league for disabilities where one of the kids has hypotonia (low muscle tone; she didn’t start walking until she was 3 1/2 and still can’t run or jump) and speech apraxia (“where the brain and lips don’t talk to each other.”) I stared at the screen, leaned back in my chair and called my husband. As a follow-up to baseball great Harmon Killebrew’s death this week, I was going to be writing about the Miracle League that he generously supported. The organization gives EVERY kid — no matter their ability — the chance to play baseball. I was going to have to attend the next game and watch children with varying special needs play my favorite game. Could I handle seeing kids in wheelchairs? With splints on? Unable to talk? No doubt, there would be several kids with Cerebral Palsy, which Lila is at risk of developing due to her PVL (brain injury). I made up my mind that I can’t live my life in fear. There is beauty in ALL living things and it’s time to embrace our situation for all that it is. I went to the game.

At first I had a hard time looking at these children in the eyes. Then they started talking to me. One of them sang “Take Me Out to the Ballgame,” my all-time favorite song to teach any little kid; one little boy didn’t want to play the game, but when he finally got up to bat, he hit a homerun; and a girl in a wheelchair stopped just before crossing home plate and waited for the crowd to cheer her on as she finally rolled past the base. They all had such light in their eyes, such happiness. In a week full of curious signs, these kids left me with the most important reminder of all — as Dr. Hoekstra once told me, they, too, have a purpose in this life. Every single one of them.

Picture courtesy of Renee Jones Schneider, Star Tribune.

 

Hi again, it’s me May 3, 2011

Filed under: Lila,Milestones,Sunny days — Aimee @ 11:03 am

I think it’s finally time to return to writing. A lot has happened over the past few months, more than I can possibly start to describe. I guess things had to get harder before they got better. I didn’t think it could get worse than watching your baby struggle in a hospital bed covered in tubes and wires, but there’s so much I didn’t know back then. Despite Lila’s success, things continued to pile up in my world. I was obsessive over her feedings and weight gain. No, REALLY obsessive. My happiness was non-existent and the smallest things seemed to be so incredibly difficult. I wasn’t nice to the people who love me the most and for that, I’m so very sorry. I wasn’t taking time for myself and never really acknowledged all that I’ve been through.

I’ve been hard at work trying to pull myself together over the last couple of months. There’s a lot that I’m not ready to talk about, but I’m happy to say that things are getting much better. I have a wonderful therapist who’s helping me and most important, amazingly supportive family and friends. I have been taking some time off of work to focus solely on my health and care for Lila. I’ve stripped away all of the extras in my life — I call it: “Mission Back to Basics.” Things are a lot brighter in my life, but there’s still a lot of work to do. I’m starting to add back normal things and am hopeful for the future. One day at a time, that’s all I can do.

Lila is doing AWESOME. We are seeing occupational therapy once a week to work on her feeding issues and will see a private physical therapist starting next week. She has made a lot of progress. She drinks her bottles awake and feedings are no longer fraught with tears and anxiety. We started her on solids a few weeks ago and she really enjoys eating. There are still a few challenges, but she’s come so far and we definitely have reason to celebrate.

The best news is that Lila is a happy and content baby. SOOOOO happy! She smiles at everyone and has stolen the hearts of many. Her personality has really come through the past couple of weeks and she is a darling charmer. I am so proud of her. I don’t know what the future holds for Lila, but I do know that she has the personality to get her whatever she wants in life. Her smile alone will take her far.

I hope I can find the strength, energy and time to update you on a more regular basis. No promises, but I have good intentions. Thank you for hanging in there with me.

Working with her occupational therapist, Kelly.

Yes, we were THAT happy!

Our team for the March for Babies who helped us raise more than $3,000!

Doing big girl stuff because she's tough!

 

New year, new outlook January 7, 2011

Filed under: Lila,Sunny days,Updates — Aimee @ 11:38 am

2011 couldn’t have gotten a much better start for the Tjader Family. Lila is doing incredibly well. Everyone told me things would start to fall into place and we/she’d find our happy place. Of course, I didn’t believe any of you. Things would never settle down. I’d have a fussy baby for all of eternity. The house wouldn’t unpack itself. Enough sleep would never be had. And our sweet Lila would be hooked up to wires and dependent on medication forever. Turns out I was wrong about EVERYTHING!

First of all, Lila turned a corner with the Colic and I’m happy to report it’s GONE! Just like magic, just like everyone said. I credit this to either nature taking its course and Lila maturing, or our move to Lila’s earlier bedtime. Whatever it was, it’s amazing. Our happy, content, sweet-demeanor, well-adjusted baby is back.

Speaking of bedtimes, Lila is quite the little sleeper lately. After our routine of bath and/or massage, breathing treatment, music and a bottle, Lila falls asleep around 8 p.m. and sleeps THROUGH THE NIGHT until 7 a.m.!!!! We put her in her bed, drowsy but awake, and she puts herself to sleep. Most of the time. We’ve tried putting her to bed even earlier, but 8 p.m. seems to be her sweet spot. This newfound sleeping skill gives my husband and I a chance to reconnect after a long day. For that, we are both very thankful. I sure do miss him!

We just returned from the pulmonologist (lung doctor) and Lila checked out very very well. The doc almost seemed surprised at how well she’s doing. She was taken off of oxygen during the appointment and she kept her sats up the entire time! She could very well be ready to come off of oxygen completely, but the doc doesn’t want to push it that quickly. She was weaned from 1/4 liter of oxygen to 1/8 liter. In three weeks, she’ll have a sleep study done. If Lila’s in need of any supplemental oxygen, she’s going to show us that she needs it when she’s sleeping. The doc will see her a week after the sleep study and if she passed, we can all kiss that damn cannula goodbye! Until then, it’s good to know that Lila can be without her oxygen for awhile without being affected. If she’s off oxygen in a month, I’ll be ecstatic. That’s much quicker than I ever expected.

With the exception of her breathing treatments twice-a-day, she’s no longer on medication. Oh, except for a new one prescribed today for Thrush, which she may or may not have. Thrush is a very common finding in infants. It’s basically a yeast infection in the mouth. It appears as white, cottage-cheese-like spots. Lila does have some white spots, but most of it scrapes off indicating it could be breast milk. To play it safe, we’ll give her the meds and see if it disappears.

And as of today, Lila is officially free of her apnea monitor. So you see, all those things that I thought would never happen, are slowly happening one-by-one. Except for all of these damn boxes. They’re still not unpacking themselves!!!

 

Baby likes her bottle December 17, 2010

Filed under: Lila,Milestones,Sunny days — Aimee @ 2:01 pm

Lila turned three months old this week and decided she’d had enough with the feeding tube. She took matters into her own hands and got rid of it! She didn’t pull it out as I’d been warned she was likely to do, therefore being very diligent to keep her little mitts covered. Nope. Instead, she threw it up. Her Auntie Meg was holding her when it happened. First came a good dousing of breast milk, then the tube. “Uhh, Aim?” I look over and there’s the tube hanging out of Lila’s mouth. The expression on her face indicated she was clearly very pleased with herself. Dec. 15 marked the official last day of the dreaded feeding tube.

Lila had been doing very well with her feedings. She was almost taking in the volume she was “supposed” to take. For the past few days, we’d only tube her in the middle of the night, mainly out of convenience. The kid sleeps through the night, so why wake her when we can just shoot the milk right on into the tube and go back to bed!? Totally selfish on our part. Anyway, as long as Lila keeps up the good work, the tube will stay out for good.

And yes, I did say, “Sleeping through the night.” It’s amazing. She’s a tough baby to get to sleep, but once she goes down at Midnight, she sleeps until 8 a.m. We’ve tried numerous times to put her to bed at 8 p.m., 9 p.m., 10 p.m., etc. But she raises her voice in a fit of protest, almost as if to say, “I will not go willingly one minute before 12 a.m.!” We’ll have to work on this over the next month, because I return to work in exactly one month and cannot have a child awake until Midnight.

We are adjusting to all of the changes in our life, slowly but surely. We’re settled into the new house and are loving it. Tyler’s very busy at work. He’s in retail, so this is the busiest time of year for him and he puts in some long hours. Still, he manages to come home and relieve me of baby duties or make a meal. He’ll even get up with Lila if she wakes in the middle of the night. I couldn’t do this without him. Really, I couldn’t.

We’re making our first road-trip with Lila for Christmas. We’re going to pack up her oxygen equipment and head to our parents in Bemidji. I’m a little anxious about the long drive, but Christmas wouldn’t be Christmas if we weren’t in Bemidji. The day after my water broke, Dr. Fairbanks was laying it all out on the table and said the outlook for us wasn’t good, but having a baby home with us at Christmas time was a possibility. I spent a lot of time on bedrest, envisioning Christmas Eve at my parent’s house with our new baby. I guess miracles do happen and dreams really do come true. Merry Christmas, everyone! We have a lot to celebrate this year.

 

Day 67 November 20, 2010

Filed under: Lila,Photo/video updates,Sunny days — Aimee @ 1:55 pm

“Let’s blow this popsicle stand!”

-Lila Tjader, Nov. 15, 2010