Wednesday, May 28, 2014

pH probe

Waverly just got taken back for an upper endoscopy and pH probe test. The test is to determine if she is experiencing reflux and will need further intervention. The reflux could be responsible for some of her recurring respiratory issues. Please pray for her as she will have general anesthesia and will stay overnight inthe  PICU. 

Even though you'd think I'd be used to procedures and tests by now, it's still hard to let two nurses wheel your baby away in a bed into a room and have to go out in a waiting room away from her. I'm thankful, though, that her Heavenly Father is always with her, not hindered by policies and doors and confined to waiting areas. She is in His hands, even when she's not in mine. 

Tuesday, May 6, 2014


For 3 years now I've had to turn off the radio when this song has come on. I was so terrified of being the woman he mentions in the beginning. But this morning when it came on I let the song play, crying the whole way through yet again.

There were many times that I did not think we'd make it to this point, celebrating Waverly's 3rd birthday. It's still 2 days away, and as she showed us yet again this weekend, even the next day is not a guarantee.

But I am so profoundly grateful that God has chosen to allow us more time with our precious girl than we thought we'd have.

But know this: even if she hadn't made it to her 3rd birthday, and no matter what the future holds for her or any of us, we believe and know that always, ALWAYS, our Savior never fails.

And He is with us, always.

(For an interview on the story behind the song, go here.)

Monday, May 5, 2014

Pneumonia again

Well, the little stinker has done it again. Another pneumonia. Right before her birthday. Thankfully we caught it early. After debating Saturday evening whether to take her to the ER or not, we decided to try to keep her home to sleep in her own bed and take her to the doctor Sunday morning. She did ok thru the night but was definitely feeling rough Sunday so we paid him a visit and he said she sounded like she had pneumonia. So she's on an antibiotic for that and so far she's been able to maintain her oxygen levels ok at home on the cannula and bipap. 

Thanks for praying for her!  Pray that she feels better by her party this weekend especially! 

Saturday, May 3, 2014

Feelin' rough

Waverly got really junky this afternoon and has been coughing a lot tonight. It's a little before 1a.m. and I'm rocking her right now. I just gave her her second dose of morphine. She's acting very uncomfortable like she needs to vomit so I'm scared to leave her room and she keeps startling awake. Her breathing had settled a bit but her saturations are still low and she's on 5 liters of oxygen (I took her bipap off in case she did vomit so it wouldn't push it back down into her lungs). 

Thankfully nights like these aren't too often, but they are really tough when they come. It's always a reminder that even when she's having a good few days or weeks, her life is just one sickness away from being over. And it can happen so quickly. 

Please pray for our girl. I am not sure if it's her tummy bothering her or her lungs or what. Pray that the meds and interventions help and that she's able to go back to sleep and rest and stay home. 

Formula switch and UTI

Last week we decided to try to switch Waverly to a new formula I've been wanting her to try. It's made from real foods, which I liked. We did two days of half old, half new formula and have had her on the new stuff since. She seems to be tolerating it well. Her stomach is much less distended. She is pooping less, which we will have to keep an eye on and stay on top of. 

We also noticed that her urine had been looking pretty bad when we cathed her at night. So we got a sample taken and it grew ecoli so she's on an antibiotic for that now. 

We've also noticed an increase in seizures, including the kind where she stops breathing. I'm not sure if it's due to being off the ketogenic diet or the uti. So please be praying about that. I hope it's just because of the uti and they will decrease once she's done with treatment for that.