Thursday, October 24, 2013
Ok, so we have really been home for a week and a half, but I'm just now getting to write an update. Sorry! Actually, the last weekend we were in Denver Alexis was admitted into the hospital for observation. We took Alexis in for a swallow study to see if her paralyzed vocal cord was affecting her ability to swallow safely. During the study she became very gray and we could all tell something was not quite right with her. She passed her swallow study (yay!) but then we took her to the Heart Clinic to check her sats. When she was hooked up to the monitor she was in the lower end of the range that the doctors are comfortable with her being in. She started to dip into the 60s, though, so they decided to admit her for observation. Long story short, she needs to be on just a tiny bit of oxygen all the time to keep her in a good range. The day after she was discharged we headed for Albuquerque. ***** The day we were going to leave, Alexis had a follow up appointment at the hospital. My mom was going to get the car packed up while we were there then we were going to leave right from the hospital. Yeah, that didn't happen. The battery on my car went bad and we had a hard time finding someone to jump the car. One family wanted to help but they owned their cables to help fund their trip to Denver :-( Eventually we got it figured out and left three hours later than we wanted to. The drive home was relatively uneventful. Lexi did fantastic and only woke up twice on the whole drive. What a trooper! *****Once home, we had to try to find some kind of routine. We are still trying to figure that out. She had a couple of great nights but now we a struggling with lack of sleep. Because she has a feeding tube, we are trying to figure out how to feed her at night so that she feels full but doesn't get too much of her nutrition at night to where she doesn't eat during the day. Balancing all of her requirements is very tricky. She needs four medicines in the morning and two at night. She eats fortified breast milk so, not only do I have to pump enough for her but we have to add formula to it to increase the calories per ounce. This means, to make the math easier, we make a whole day's worth of food at once. Her g-tube dressing has to be changed daily, as does the bag we put her food in. We only have one large oxygen bottle in our house so that has to be lugged to her iron at night and into the living room during the day. We have to monitor her oxygen levels periodically throughout the day. Her oxygen nasal canola has to be changed every couple of days. Then there is all the normal newborn stuff... ****Levi has been another challenge. He absolutely adores his baby sister. He calls her "my Lexi." He is totally jealous, though. He knows exactly what to do or say to get my attention and I'm having a hard time figuring out how to teach him patience while also giving him the attention he needs. I don't want him to grow up too quickly by me constantly expecting too much out of him, but I also want him to learn to be helpful and that this is our new reality. I guess I need to be patient and I'll figure it out eventually. ***** Our prayers now are for her to continue making progress with eating orally. She needs to eat 75ml every three hours. She can eat up to 25ml right now, but it is rare and normally she tires out before that point. We also pray that she settles into a good routine and starts sleeping more at night. And, for her heart to function perfectly until her second surgery, hopefully not until January, and that we won't need to be at the hospital at all until then. Thank you!