Baby Tjader's Journey

A life undefined by pPROM, prematurity and Cerebral Palsy.

Back to the grind January 19, 2011

Filed under: Lila,Updates — Aimee @ 11:43 pm

I started back at work this week. I eased into it with three five-hour days, so it wasn’t all that bad. Next week is the true test when I have to be away from Lila from 7 a.m. to 6 p.m. Monday through Wednesday. Those days will be long and tiring, but I’ll try to go home for lunch as often as I can. I’m very thankful my company was OK with me working the three longer days. That’s really the only way we can swing childcare for Lila financially. So Tyler has switched his work schedule so that he works weekends and stays home with Lila Mondays and Tuesdays. On Wednesdays, my sister (Auntie) will come to the house to care for Lila. Tyler and I won’t have any days off to spend together and that’s going to be tough. But it’s not forever. Nothing’s forever.

It was a weird feeling to go back to work. There were constant reminders of what we’ve gone through and how far we’ve come. I was at work when my water broke sending my life into a constant state of fear. I remember the day so vividly — what I was wearing (skinny jeans I still can’t fit into, a maternity top and chunky sandals), what I was doing (on the phone fact-checking a story about chicken processing classes at a local farm), and even the bathroom stall I rushed to thinking I’d just peed my pants. These reminders put my mind back in that hospital room. I get a little freaked out, but then I just think of the miracle I have waiting for me at home and all is well again.

Most everyone I talked to at work was really great about things and didn’t overwhelm me with questions, but genuinely wanted to hear about Lila. I was worried I’d be emotional, but I was fine. I love to talk about her and I feel like I’m in a really good place right now. Even the lady in the parking office knew I’d had a baby and congratulated me. Of course there are the people who feel uncomfortable about the whole thing. I can tell they’re not sure if they should act like nothing happened or if they should say they’re sorry for what happened. My advice is to do neither. Say CONGRATULATIONS! For criminy’s sake, I had a baby and she is a LIVING, BREATHING, MIRACLE!

Four months

This child really is blowing my socks off every day. I look at her and wonder how the hell I got so lucky to be her mom? God chose me for her and her for me, and I wouldn’t have it any other way. I’d do the bedrest thing, the NICU thing and even the feeding tube thing all over again just to be Lila’s mom. At 18 weeks old, she weighs 9 lbs. 10 oz. She’s still just a squirt for her adjusted age of nine weeks, but she’s gaining adequately and the doctors say she’s thriving. Just in the last week she’s really taken off with her feedings. She came home from the hospital taking in about 60 ml’s every three hours. Now, she takes about 120 ml’s at each feeding! She even seems to be throwing up less, so I’m very excited to see how much she gains in the coming weeks.

Lila has been evaluated  by a team of people through our school system’s early childhood intervention system. She qualified for the free program because of her brain injury diagnosis. So far, she’s right on track for her adjusted age and is showing no signs of stiffness or increased tone in her lower extremities. Her pediatrician and pulmonologist also say she’s right where she should be and they don’t see anything troubling at this time. Signs of CP probably wouldn’t show up until six to 12 months, but it’s still good to know that all is well so far.

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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!!!