Baby Tjader's Journey

A life undefined by pPROM, prematurity and Cerebral Palsy.

Finally, tube-free February 1, 2011

Filed under: Lila,Updates — Aimee @ 11:27 am

When we brought Lila home from the hospital Nov. 21, we were told she’d likely be on oxygen the rest of the winter. I’d accepted the inconveniences of having a baby attached to 50 feet of tubing that wound through the house like a long stretch of hose in a burgeoning garden, constantly getting caught up on one thing or another. The dogs accepted the tubes, too, tripping over them on their next quest for a treat or drink of water. So imagine my shock when the doctor called Friday morning to say that Lila no longer needed the supplemental oxygen.

We put Lila to bed Thursday night with a pulse oximeter attached to her foot with two little sensors reading the level of oxygen in her blood. A monitor showed her oxygen concentration (85 to 100 percent is good) and heart rate, and I watched that thing like a hawk. We had a tank of o2 sitting nearby and in case she dropped below 85, an alarm would sound and I’d hook her up. Every time I woke up in the middle of the night, which was often, those blinking red lights gave me a sense of security and pride. There, for the first time, lay my baby breathing effectively, efficiently, in her deepest sleep without any support.

After waking up in the morning it was clear to me she’d passed her overnight sleep study. Now what? I thought we’d have to wait a week until Lila’s next appointment with her pulmonologist to remove the oxygen. Maybe he’d want to keep her on just in case or during certain times of day? I made a call and much to my surprise the doctor gave us the okay to remove the oxygen for good.

Finally, a wireless baby! We had a great weekend carrying Lila around the house without any worry about making sure that the tubing was following behind. I was on edge all weekend, however, still in disbelief that my 31-week pPROM baby no longer needed oxygen support. I slept much more restlessly than before, but every time I’d check on her, there she was sleeping peacefully with very even breaths, pink as ever.

I don’t want to make it seem like having Lila on oxygen was the worst thing in the world, because many preemie parents have to do so, especially those who suffer pPROM. If you have to have your baby home on oxygen, it’s just something you do, and to be honest, it really didn’t bother us. It’s all we ever knew. Many babies with serious lung problems like Lila need supplemental oxygen well into their toddler years. I knew this could be a possibility for her, so I’m so very thankful that her lungs are improving and growing that healthy lung tissue that we dream of!


2 Responses to “Finally, tube-free”

  1. Sheri Says:

    All that I can say are prayers were answered!!! Lila is one lucky little girl too…

  2. Jessica Gessner Says:

    Look at Lila go!!! She is such an amazing little baby!! It brings me so much happiness to hear of these wonderful milestones b/c I realize that whatever the future holds on future pregnancies for me, there are wonderful, miracle stories out there! That is my piece of hope to hold onto 🙂
    THANK YOU for sharing your journey!!!
    Lila, you are a strong &amazing little girl !!

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