Well....today Gwen's heart started to act up a little (which means our hearts are all struggling too). This time, the arrhythmia is not caused by electrolyte imbalances. She snaps out of them and "tolerates" them (blood pressure is not affected, ect.) but she has had them on and off through out the day. The doctors seem to still be calling them "benign" - that they are the "kind" that you or I could have at any given moment and it's totally normal. However, they went ahead and put the IV back in (this time it is in her foot, so at least her hand doesn't have a gigantic gauze on it). Also now they are talking about possibly having to give her medication for the arrhythmia. My question now, is, if she goes on meds for the arrhythmia, does that mean they are not "benign" and they are a problem. I'm a bit confused.
The feeding tube is going to stay in for a while. The tube has breast milk fortified with formula to up the calories. The docs want her to gain more weight than she is currently (I keep trying to plant it in their head that Lil is small so not to expect too much - but they keep saying "heart" babies burn more calories because their hearts are working harder, so they need to off-set that). We won't offer the bottle as we hope she will learn to nurse. She did a tiny bit better with "nursing practice" but it is going to take a lot of faith and patience on my part...it could be a long time until she is into that whole thing.
To report some good news - Gwenyth, as of the last few hours, is off the oxygen and doing excellent! They will take the silly thing out of her nose sometime later today if she keeps on keeping on with "room air."
Time for her Hep B and Synagis (for RSV - a respiratory virus vaccine that will last for one month), then they her weight, and bath time where Myers and I will learn "wound care."
Subscribe to:
Post Comments (Atom)
-
Poetry. I don't know what else to do... I miss you seven years later my love. Your birthday is always a joyful time, even if I am welli...
-
Gwen was awake and looking at us for a little while. This is the first photo of her since her operation that doesn't look "scarry...
Aw, step forward step back it seems. I'm so happy she's off the oxygen. That is GREAT news! I will pray that the arrhythmia will disappear. Hopefully if it doesn't though it will be easily controlled w/ meds. Some of the truncus kids on the yahoo truncus group are on meds for arrhythmia so it's not unheard of. Hang in there with the feeding, it can drive you crazy to worry about weight though it sounds like you're not too worried. Sometimes the docs seem paranoid! They can get very obsessed w/ input, output, and weight!
ReplyDeleteBecca Chester
I agree with Becca, you should trust your gut about her weight :) You're her mama and I think you'd be able to tell best if she wasn't gaining well. And you're totally right, the size Lil is, it's crazy to worry about a five and a half pounds preemie, for gosh sake :)
ReplyDeleteShe has done so well and I believe she will continue to do well. As Elisa said, trust your instincts on what she needs. You guys are doing great at dealing with all of this. We are still praying throughout each day. We love you.
ReplyDelete-Jessie