February 12th, 7:46PM
We're all checked in at Walnut Creek Kaiser and Robyn has been attached to the machine that goes "bing." A few people raised concern over the lack of concern of our doctors in our last e-mail. We've spoken with the delivery doctor, who spoke with the neonatologist about Kathryn's ventriculomegaly, and they've told us what their plans are for testing Kathryn after she's born. Google tells me it's all pretty standard and about as much as can be done.
The nurses seem to think we might be here for a few days, but most of it will be sitting around waiting for the machine that goes "drip" to make the machine that goes "bing" do so a little faster. At the moment we're trying to slow the bings down however, and so we're walking through the hallways which I can only describe as unnerving. The screams, cries, and curses send chills up my spine and I wonder if we might have stumbled into some kind of horror movie.
February 13th, 9:54AM
Kathryn *just* arrived. Problems with upper respirtory, and definitely some kind of syndrome. Off to NICU.
February 13th, 6:05PM
All,
Let us start by saying thank you to everyone that has been praying, calling, e-mailing, texting, and dropping by to offer love and support for the three of us today. it has been a little overwhelming, to be honest with you. Thanks especially to Cia who stayed up all night with us, handling a barrage of requests for updates and being point woman for us. I don't think you know what a blessing you've all been to us over the past 24 hours.
We just now sat down with a few minutes to relax, so we wanted to update everyone with what we know. Sadly, it isn't much. Her ventriculomegaly is worse than originally expected, causing her head to be swollen and misshapen. One of the neonatologists confirmed that this is a congenital disorder, and not the normal molding caused by passing through the birth canal. This is the biggest concern right now, since the pressure on her brain is likely to interfere with her mental capabilities. She also has a malformed upper respiratory system (misshapen mouth, palate, and nose) which he thought might prevent her from breathing on her own. This later turned out not to be the case, and she is able to breath more or less okay. It does cause her trouble while feeding, however, we've already had some success there. Her ears are also a little lower than normal and each malformed in its own way. There is an MRI scheduled for 8:00PM tonight to look at her brain in more detail and determine the cause of the ventriculomegaly (clot?), but it isn't likely that we'll learn anything from it until tomorrow or Wednesday. Pictures have also been sent to a geneticist who will stop by at some point tonight on his way home from Kaiser Oakland and try to determine which syndrome she might have. Once we know these things, it's possible that we'll have a better understanding of the long-term effects and what type of lifestyle Kathryn will be able to lead.
We've had many offers to bring whatever we might need, but since my dad is close by Kaiser Walnut Creek (and doesn't have a job to attend in the morning since he's retired) we'll probably be leaning on him for most of that stuff, and the Bauers are taking care of the dogs. The flood of communication from you all has been overwhelming, and we're sorry if we haven't been able to get back to you quickly. Know that we're well cared for by the staff here (who are wonderful), and mostly what we need right now is time. One of the nurses stopped by and said she couldn't imagine what we're going through. I replied, "neither can we" before I realized the truth of that statement. None of it seems real right now, but it's slowly sinking in.
Originally posted to http://www.carepages.com/carepages/KathrynElizabethSchlichter
We're all checked in at Walnut Creek Kaiser and Robyn has been attached to the machine that goes "bing." A few people raised concern over the lack of concern of our doctors in our last e-mail. We've spoken with the delivery doctor, who spoke with the neonatologist about Kathryn's ventriculomegaly, and they've told us what their plans are for testing Kathryn after she's born. Google tells me it's all pretty standard and about as much as can be done.
The nurses seem to think we might be here for a few days, but most of it will be sitting around waiting for the machine that goes "drip" to make the machine that goes "bing" do so a little faster. At the moment we're trying to slow the bings down however, and so we're walking through the hallways which I can only describe as unnerving. The screams, cries, and curses send chills up my spine and I wonder if we might have stumbled into some kind of horror movie.
February 13th, 9:54AM
Kathryn *just* arrived. Problems with upper respirtory, and definitely some kind of syndrome. Off to NICU.
February 13th, 6:05PM
All,
Let us start by saying thank you to everyone that has been praying, calling, e-mailing, texting, and dropping by to offer love and support for the three of us today. it has been a little overwhelming, to be honest with you. Thanks especially to Cia who stayed up all night with us, handling a barrage of requests for updates and being point woman for us. I don't think you know what a blessing you've all been to us over the past 24 hours.
We just now sat down with a few minutes to relax, so we wanted to update everyone with what we know. Sadly, it isn't much. Her ventriculomegaly is worse than originally expected, causing her head to be swollen and misshapen. One of the neonatologists confirmed that this is a congenital disorder, and not the normal molding caused by passing through the birth canal. This is the biggest concern right now, since the pressure on her brain is likely to interfere with her mental capabilities. She also has a malformed upper respiratory system (misshapen mouth, palate, and nose) which he thought might prevent her from breathing on her own. This later turned out not to be the case, and she is able to breath more or less okay. It does cause her trouble while feeding, however, we've already had some success there. Her ears are also a little lower than normal and each malformed in its own way. There is an MRI scheduled for 8:00PM tonight to look at her brain in more detail and determine the cause of the ventriculomegaly (clot?), but it isn't likely that we'll learn anything from it until tomorrow or Wednesday. Pictures have also been sent to a geneticist who will stop by at some point tonight on his way home from Kaiser Oakland and try to determine which syndrome she might have. Once we know these things, it's possible that we'll have a better understanding of the long-term effects and what type of lifestyle Kathryn will be able to lead.
We've had many offers to bring whatever we might need, but since my dad is close by Kaiser Walnut Creek (and doesn't have a job to attend in the morning since he's retired) we'll probably be leaning on him for most of that stuff, and the Bauers are taking care of the dogs. The flood of communication from you all has been overwhelming, and we're sorry if we haven't been able to get back to you quickly. Know that we're well cared for by the staff here (who are wonderful), and mostly what we need right now is time. One of the nurses stopped by and said she couldn't imagine what we're going through. I replied, "neither can we" before I realized the truth of that statement. None of it seems real right now, but it's slowly sinking in.
Originally posted to http://www.carepages.com/carepages/KathrynElizabethSchlichter
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