Things were uneventful yesterday, which is a nice change in pace. We spoke briefly with the neonatologist, but there wasn't much to say and that's great news. Kathryn's biliruben levels seem to have plateaued, and it looks like she won't have to spend any time under the bili lights for jaundice. If the biliruben counts get too high they can affect her brain development, so we're happy to hear they've leveled off. That's pretty normal newborn stuff though, and we're happy to have something like a normal experience for a day.
He also said that the only thing she needs to do before she can leave is prove that she can eat well. He doesn't want to see her in NICU again after she goes home, and I told him that the feeling was mutual. :) He wants to see her taking about 2oz of milk at each feeding though, which is a very high benchmark for her. The nurses and other doctors think he's a little crazy. Right now she's taking around 30ml; half of what she needs to do. Feedings have gotten a lot easier though, and she's getting into more of a rhythm today. We both have hope that in a week or so she'll be eating strong and ready to go home. Dr. Anderson also told us that the geneticist wanted to take more blood to run some additional tests. He was concerned because they want to take about 12% of her total blood volume. I asked him if there was an urgency to it; if they identify the syndrome, is it something they could treat? His response was that, if she has a storage syndrome like they think, it's not something they can do anything about. This morning we were told that they took the blood to run the tests, which is fine but a little strange.
Robyn commented that she felt like the doctors were dancing around something. "Do you get the feeling that, when the nurses and Dr. Anderson talk to us, they know something we don't and they don't want to tell us?" I do get that feeling. There's a heaviness in the air, even when all the news is good like today. Maybe I'm just a pessimist though.
I staged a prison break this morning for Robyn and took her to my dad's house to shower and get out in the sun. We only had about 45min, but it was wonderful and I could see a marked improvement in her spirits. Her hair was washed for the first time in almost a week, and when she came out of the bathroom she exclaimed "I forgot that I'd had a haircut last Friday!" That was a nice treat for her, like a mini-makeover and the time under the sun, even though it was in the car, did a lot for her mental state.
On the way home we talked about how happy we were to be doing this together. There isn't anybody else I'd rather be doing this with and, as we looked back, we realized it all started with a bathroom break. About five years ago Robyn saw a flier in the women's bathroom at our church for a young married's game night. The afternoon of that social event we had been looking at houses in Livermore, and found what was eventually to become our house. It was close to the church, with plenty of space for hosting gatherings with access to a park for kids and even huge parties. At the game night we found a group of people that were fun to be with, were genuinely interested in us, and who cared for each other. You could see it in how they interacted with each other. We knew right away that it was a group of people we wanted to be with and we started attending their bible study regularly soon after. At the time it was about seven couples, but over the next year grew to about 35, and eventually to around 50 couples every Wednesday. That's 100 married people getting together on a Wednesday night, learning how to improve their marriages, swapping tips, bond, and build a community. I've seen people make cuts in their budgets and sell things they own to put food on another family's table. I've seen couples who were living separately and working with the lawyers to divorce turn around, save their marriage, and how have another kid. Serving this community for so many years taught Robyn and I a lot about how to worship God with everything we do and keep our relationship with each other strong. As we talked in the car on our way back from her shower, we thought of couples we've seen pass through our community that might not be able to handle this type of stress in their life. But we've been in training for five years now, and, at least so far, our spirits are strong and we're as in love as ever. God works in mysterious ways I guess.
So, Barnetts, Butlins, Dos, Joneses, Petersons, Sprayberrys, Stockhauses: THANK YOU FOR OPENING UP YOUR GROUP AND HOSTING THAT FIRST GAME NIGHT. I'm sure it hasn't always been easy for you, but you can't know how many lives have been changed by the community God built through your service. Kathryn's is just the most recent in a very long list.
Originally posted to http://www.carepages.com/carepages/KathrynElizabethSchlichter
He also said that the only thing she needs to do before she can leave is prove that she can eat well. He doesn't want to see her in NICU again after she goes home, and I told him that the feeling was mutual. :) He wants to see her taking about 2oz of milk at each feeding though, which is a very high benchmark for her. The nurses and other doctors think he's a little crazy. Right now she's taking around 30ml; half of what she needs to do. Feedings have gotten a lot easier though, and she's getting into more of a rhythm today. We both have hope that in a week or so she'll be eating strong and ready to go home. Dr. Anderson also told us that the geneticist wanted to take more blood to run some additional tests. He was concerned because they want to take about 12% of her total blood volume. I asked him if there was an urgency to it; if they identify the syndrome, is it something they could treat? His response was that, if she has a storage syndrome like they think, it's not something they can do anything about. This morning we were told that they took the blood to run the tests, which is fine but a little strange.
Robyn commented that she felt like the doctors were dancing around something. "Do you get the feeling that, when the nurses and Dr. Anderson talk to us, they know something we don't and they don't want to tell us?" I do get that feeling. There's a heaviness in the air, even when all the news is good like today. Maybe I'm just a pessimist though.
I staged a prison break this morning for Robyn and took her to my dad's house to shower and get out in the sun. We only had about 45min, but it was wonderful and I could see a marked improvement in her spirits. Her hair was washed for the first time in almost a week, and when she came out of the bathroom she exclaimed "I forgot that I'd had a haircut last Friday!" That was a nice treat for her, like a mini-makeover and the time under the sun, even though it was in the car, did a lot for her mental state.
On the way home we talked about how happy we were to be doing this together. There isn't anybody else I'd rather be doing this with and, as we looked back, we realized it all started with a bathroom break. About five years ago Robyn saw a flier in the women's bathroom at our church for a young married's game night. The afternoon of that social event we had been looking at houses in Livermore, and found what was eventually to become our house. It was close to the church, with plenty of space for hosting gatherings with access to a park for kids and even huge parties. At the game night we found a group of people that were fun to be with, were genuinely interested in us, and who cared for each other. You could see it in how they interacted with each other. We knew right away that it was a group of people we wanted to be with and we started attending their bible study regularly soon after. At the time it was about seven couples, but over the next year grew to about 35, and eventually to around 50 couples every Wednesday. That's 100 married people getting together on a Wednesday night, learning how to improve their marriages, swapping tips, bond, and build a community. I've seen people make cuts in their budgets and sell things they own to put food on another family's table. I've seen couples who were living separately and working with the lawyers to divorce turn around, save their marriage, and how have another kid. Serving this community for so many years taught Robyn and I a lot about how to worship God with everything we do and keep our relationship with each other strong. As we talked in the car on our way back from her shower, we thought of couples we've seen pass through our community that might not be able to handle this type of stress in their life. But we've been in training for five years now, and, at least so far, our spirits are strong and we're as in love as ever. God works in mysterious ways I guess.
So, Barnetts, Butlins, Dos, Joneses, Petersons, Sprayberrys, Stockhauses: THANK YOU FOR OPENING UP YOUR GROUP AND HOSTING THAT FIRST GAME NIGHT. I'm sure it hasn't always been easy for you, but you can't know how many lives have been changed by the community God built through your service. Kathryn's is just the most recent in a very long list.
Originally posted to http://www.carepages.com/carepages/KathrynElizabethSchlichter
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