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!
Sunday, October 6, 2013
Jason and Levi just left for Albuquerque with Jason’s parents and my dad. We are anticipating Lexi’s discharge tomorrow morning, first thing. It is very surreal thinking about taking her out of the hospital. We have been waiting for this day for 4 weeks, and even longer, but now that it’s here I find myself feeling anxious and unsure. There is nothing happening for her in the hospital that I wouldn’t be able to do for her at home, but there is a little bit of fear that something could happen. A good friend told me yesterday, “fear is not of the Lord, so don’t give in to it!” I pray about it all the time, and unfortunately I think it is just natural for parents to worry about their children. Please pray for us, that God would take our fear and anxiety away, and that we would be able to fully trust in Him for her care and safety. ***** There are so many new things that are going to happen once we get her “home.” By home, I really mean the Ronald McDonald House. My mom and I are going to stay there for a week because we have to have a couple of follow-up appointments here before we are cleared to go home. I think it will be a nice transition, though, to be close to the hospital but in our own space with her while we figure her out. I already know how to feed her and bathe her, but I still need to learn how to give her medicine and a couple of other small things. ***** There is not much else new in our world. Jason is going to try to get Levi back into some kind of routine this week, before Alexis gets there. We have been talking to the doctors a lot about how to transition back into a normal life. They said having a stream of visitors is probably not a good idea, and people that do come over have to make sure they are not sick and may or may not get to hold her. This was hard for me to hear because I want to share her with everyone, but they assured me that people will understand, especially because we are getting into cold and flu season. Part of the problem is if she gets sick, she will probably have to get admitted to the hospital, but that means being life-flighted back to Denver rather than staying in Albuquerque. Of course we don’t want her to get sick, but we definitely don’t want to have to come back to Denver before her second surgery (probably at the beginning of the year). ***** Thank you for the continued prayers and I will update as things progress.