Amelia is taking her sweet time, getting recovered. She deserves all the time in the world, but I just want to be passed all the roller coasters. Everyday is a roller coaster. She is either not awake enough(because of meds) to cough and clear her lungs, or she is too awake and could stress her heart out. So finding the balance is really hard. If her lungs stay gunked up, her sats drops and doctors stand over her bed. If she is awake and crying for more than 10 minutes, they rush to give her some morphine, because they don't want to risk her getting too stressed and needing to go back on the ventilator. As I typed this, her alarm started going off. It's usually her SATS, but this time it said apnea, meaning she wasn't breathing. This never happens, so I got nervous and a nurse came in and assured me that it's because her breaths are really shallow(meds make her sleepy), so the monitor just wasn't picking it up. The adrenaline rushes never stop.
They're constantly tweaking something with her meds or oxygen. One med can come down slowly, only to realize that it drops her blood pressure, so it needs to come back up. Another one will spike her blood pressure, so go down on that one, oh wait...go back up, her blood pressure dipped again. They'll start to wean her oxygen a little and she will do fine and then she'll have to go back up because her SATS drop. It's just a frustrating struggle. Poor Amelia, I can't imagine how frustrating it is for her. Luckily, they're doing cluster care, meaning, all nurses and doctors come in at once and take a listen and mess with her, instead of coming in whenever and disturbing her right after she falls asleep.
It will be a slow recovery, which I understand. It's just hard, because she recovered so fast last time. We had a meeting with all her doctors and nurses, and her surgeon said that the worse time to open a baby back up after heart surgery is 3 to 6 weeks after surgery. They reopened her at 3 weeks after her surgery. So not ideal at all. I understand that we need to be patient with her and just let her slowly recover, but I am just having such a hard time being patient .
Her surgeon said that she needs a good amount of time to not be recovering from a surgery. She needs to just be a baby in a blanket for a while, before they'll consider the Glen surgery. It was mentioned that possibly the end of March she could go for her second surgery, which is what we're waiting for. I am in no rush. I just want to wake up at home, with Amelia right next to me, recovered from her second surgery.
Life is going on all around us. I can't believe that it's almost February. Emma is about to be 2! Amelia is about to be 2 months old. I have gone home a couple times now, just to spend time with Emma in our normal setting. It's nice to do that, but it makes me miss it so much more. David went home last night and there was a big hold in our kitchen ceiling from the toilet running upstairs. When it rains, it pours. Literally.
Prayer requests:
For Amelia is gain weight. They have her feeds fortified to 27k cals an ounce and that is super thick stuff. They add formula to the breast milk, so it's super thick. Her tummy doesn't like it a whole lot. She just needs to consistently gain weight everyday before they'll come down on the k cals.
She is really touchy with her medicine. It would be nice if she could start weaning off of stuff, and stay off of it.
For her to be alert and happy more, so they can come down on sedation meds. She is so sleepy that she isn't coughing, which is bringing her SATS down.
Our kitchen ): There is an ugly hole in the ceiling. Pray that there isn't too much water damage.
AND FOR THE WEATHER! It's cold!! I am not asking for much, just maybe temps in the 30's would be nice. No more -30 wind chills, please.
Thanks for all the prayers, y'all.
Love,
Kelly
No comments:
Post a Comment