Wednesday, September 5, 2012

Last night in Charleston

As of now, we're still on for going home tomorrow.  Bonnie still isn't gaining weight very well, but we're going to let her pediatrician (in *Greenville*, i.e. home) worry about that.  She's currently getting fed over an hour, every three hours.  They wanted her feeds compressed to 30 minutes before we left, but we're going to work on that at home too.  Bonnie's going home with an apnea and heart monitor to be used just while her feeding is going in, in case her NG tube misfires (i.e. ends up in her lungs instead of her stomach).  We're also taking home a feeding pump, which looks like this.  I got trained on the new equipment (monitor and pump) today, and it hit me how much stuff we're bringing into the house, and how much of a production it's going to be to feed her. Holy cow.  We'll get a routine down pretty quickly I'm sure, but I think the first few days are going to be a little insane.

Also, I'm trying to remember that when Bonnie's home, I am her *mother*, not her *nurse*.  The Helms house isn't turning into a hospital.  I plan on enjoying having my child home and not letting her medical needs overwhelm us.  And really, she's not *that* medically complex.  She doesn't eat, and she's on three medications.  That's totally manageable.

Bonnie had another echo yesterday, because they discontinued her sildenafil (Viagra!), which was started back in the dark days of ECMO to help with her pulmonary hypertension.  They wanted to see how her heart looked without the medicine.  Turns out, it looks *great*.  No evidence of pulmonary hypertension.  Miracle.  Pulmonary hypertension was her ticket to ECMO back in the day.  It's a beast.  And it is *gone*.  Praise God.  Also, they checked her urine yesterday and found that it had blood and protein in it.  This is likely a lingering effect of when she was in kidney failure, but we'll follow up with the pediatric nephrologist to keep an eye on it.

Things are likely to be kind of crazy for the next few days, but I will update with homecoming pictures when I can.  Until then, here are some cute pictures of Bonnie enjoying her pacifier (formerly a rare event, but becoming more common--which is a good sign for future eating endeavors!).  Please pray for an uneventful (3+ hour) trip home tomorrow and a smooth first night back on the home front.


  1. CANNOT WAIT to hear that she has busted out and is settled in at home. So happy for y'all!!!!!

  2. Oh my she looks so precious in these pics (and all of them of course)!! So glad to see that pacifier lingering in her mouth :-) She'll be eating before you know it! I can feel it :-)

  3. She is so beautiful! She looks so cozy with her paci. I just love that last picture of her! So happy for you all and will be praying for a peaceful and gentle transition home. Best of luck to you!