So I have a mix of updates from yesterday and updates from calling this morning.

Liana had about 4 or 5 episodes yesterday where she dropped her heart rate and at least 2 of them she had to have moderate stimulation. I have had a lot of people ask me what these episodes are like so here is my best way to describe what she does: Liana finishes drinking her milk and for some reason (burping, trying to poop, etc) she has milk come back up her throat and it kind of sits there. She stops breathing and basically looks like she is choking but becomes very still and turns blue. She won't take any breaths and I have to stimulate her which is either pat her on the back pretty hard, flick her foot, rub her chest, anything to try and get her to take that first breath. A lot of times I have to do a mix of all those things to get her to breath but finally at some point she kind of gulps in some air. It still takes some time for her to get breathing steady, but afterwards she is completely wiped out and just falls asleep. It is hard having reflux.
So for the good news, Liana dropped her heart rate at 2 am and at 8 am, but both times she recovered on her own (no stimulation needed)! We are making some progress. If she keeps recovering on her own we can take her home soon. It is the ones with stimulation required that are keeping her there. My prayer has been that she will stop having the ones that need stimulation today and by next Thursday (she has to go a week) we can take her home! Please everyone who is praying for our girls pray for that specific prayer.

In Adleigh land everything is looking awesome. She is at 50 ml right now every 3 hours (10 ml away from 2 ounces) and she is being a champ eating it. She will reach full feeds (54 ml) tonight. The nurse told me that they are planning on taking her CVL out today. That is the line they surgically put in her chest that goes to a very large vein. All her IV fluids have been going through that but now she doesn't need it! Once this is taken out they are more than likely going to send her over to progressive care and let them give her the immunizations and she can be discharged from there. It definitely costs less per day for her to go to progressive! They are also checking her bili levels. This is jaundice but she got it because she has been on the hospital nutrients for so long. That IV fluid is harder on her liver. She will more than likely have to take a medicine (the lights don't work for this jaundice) to help her break down her bili and she will be on that for a little while. I think that is all the news. Keep praying, we are nearing the end of the hospital days!


Tasha Via said...

We will be praying for those specifics. Thank you for sharing!

Karen said...

I will be praying for those specific things...Thank you so much for the updates! They will be home so soon!!

gretchen lynn said...

aww i'm definitely praying for your little girls!
i miss you!!

Kristin from Michigan said...

Ferris - I have been following your story for quite some time now (found it through Kayleigh's blog) but don't remember if I've posted before or not. I've a feeling you've already been told this by your doctors, but reflux can be caused by food allergies. What kind of formula is Liana on? If you haven't already tried it, I wonder if she would fare better on a hypoallergenic formula? My third daughter has both a milk and a soy allergy and her reflux only stopped when we put her on EleCare (an elemental formula). She's now 13 months old and still on it but her reflux cleared within days of starting it - we had tried both Zantac and Prevacid with her but they brought absolutely no relief.

My older two girls both had reflux. My first responded well to Zantac. My second needed Prevacid to get relief... she used to stop breathing and would start to turn blue (she also developed Sandifer's syndrome from her reflux). It's so terrible for them - poor babes. Both were initially breastfed but ended up on a hypoallergenic formula.

Well, I've gone on too long as it is. I just wanted to make mention of that just in case.... oh, and there are other hypoallergenic formulas (nutramigen and alimentum) on the market that are more easily accessible and cheaper than EleCare and NeoCate.

God Bless,
Kristin from Michigan