I think (hope) this will be my last update for a while. I may also be more active again, since I don’t really have anything else to do atm.
Our oldest girl (Allie is her nickname) is doing well. They were able to take the PDA down from “significant” to “moderate” and so have decided to wait to see if it will close the rest of the way on its own. I know that it is “serious”, and the doctor told me as much, but In don’t feel all that stressed out about this. They told me that this is common for preemie babies, and that Allie reacted well to treatment.
Our youngest girl’s health (Di is her nickname) is much more uncertain. She had two brain injuries, which may have occurred at the same time (the NICU doctor thinks it was the same time, but the neurologist think’s based off of the amount of healing between them that either the brain bleed “healed fast” or they occurred separately). She had a brain bleed at the ventricles, then a “watershed infarct”... basically a stroke (I think, please correct me if I’m wrong, but if I understand it right it’s a technical term for oxygen depravation) that affected the deepest/outer parts of her brain. The doctors are telling me that baby brains have a remarkable ability to heal after these injuries, and so we may see nothing. The neurologist says he’s seen worse damage, but that obviously any damage isn’t ideal, and that it will take a year to tell. Even the MRI can’t really tell due to a lack of resolution. From the MRI scans he showed me, one showed lots of little dots around the ventricles, which I guess is iron signatures (blood remnants), and then there was another filter which showed tissue damage as “white” and to me it basically looked like her brain was glowing. I read long term studies on infants with these injuries, and they found that they usually resulted in lifelong impacts (everything from reduced verbal and motor skills, cerebral palsy, epilepsy, and reduced intelligence). However, the outcomes are spread wildly, meaning that they still cluster around being average.
As for me, I feel totally powerless and unattached to Allie and Di. They are basically locked in a box. They were born almost 2 weeks ago, and I’ve only held them three times. Di is locked in reverse quarantine until they can rule out infections as the cause for the watershed infarct. Just holding them is a production, because they have their ventilator, an IV, feeding tubes, and something like 5 different cords. They only let me do it while they are feeding which takes over an hour, and so it’s very hard to be there at the right time with a clear schedule. The NICU is a massive room with something like 30 babies in it, it’s constantly beeping and there are nurses and people everywhere. I now have two psychologists pestering me because they think I have postpartum… but I think the way I feel is perfectly rational given my babies are basically locked in boxes at an airport terminal, and I’m being told that there’s a chance one of them might never be able to even talk. All I do all day is wake up in a small hotel room, go to the NICU, stare at them for four hours, hear more bad news about Di while being told “not to worry”, try to talk to them… sorry I mean I talk to Allie because I can’t even get close to Di anymore, and then go I get lunch (because I can’t even cook anymore), then I go back and stare at them until dinner, and then I go back to my hotel and try to relax and sleep. If I decided to skip a visit, then the whole time I’m gone I just feel anxious, guilty, and very worried that something bad is going to happen while I’m not there. This whole situation is really frustrating.
Anyway, sorry for venting. These circumstances won’t last forever, and I am trying to remember that and remain positive.
RT: https://poa.st/objects/4a35d148-ac86-4497-b637-7b57cb6df87e
Our oldest girl (Allie is her nickname) is doing well. They were able to take the PDA down from “significant” to “moderate” and so have decided to wait to see if it will close the rest of the way on its own. I know that it is “serious”, and the doctor told me as much, but In don’t feel all that stressed out about this. They told me that this is common for preemie babies, and that Allie reacted well to treatment.
Our youngest girl’s health (Di is her nickname) is much more uncertain. She had two brain injuries, which may have occurred at the same time (the NICU doctor thinks it was the same time, but the neurologist think’s based off of the amount of healing between them that either the brain bleed “healed fast” or they occurred separately). She had a brain bleed at the ventricles, then a “watershed infarct”... basically a stroke (I think, please correct me if I’m wrong, but if I understand it right it’s a technical term for oxygen depravation) that affected the deepest/outer parts of her brain. The doctors are telling me that baby brains have a remarkable ability to heal after these injuries, and so we may see nothing. The neurologist says he’s seen worse damage, but that obviously any damage isn’t ideal, and that it will take a year to tell. Even the MRI can’t really tell due to a lack of resolution. From the MRI scans he showed me, one showed lots of little dots around the ventricles, which I guess is iron signatures (blood remnants), and then there was another filter which showed tissue damage as “white” and to me it basically looked like her brain was glowing. I read long term studies on infants with these injuries, and they found that they usually resulted in lifelong impacts (everything from reduced verbal and motor skills, cerebral palsy, epilepsy, and reduced intelligence). However, the outcomes are spread wildly, meaning that they still cluster around being average.
As for me, I feel totally powerless and unattached to Allie and Di. They are basically locked in a box. They were born almost 2 weeks ago, and I’ve only held them three times. Di is locked in reverse quarantine until they can rule out infections as the cause for the watershed infarct. Just holding them is a production, because they have their ventilator, an IV, feeding tubes, and something like 5 different cords. They only let me do it while they are feeding which takes over an hour, and so it’s very hard to be there at the right time with a clear schedule. The NICU is a massive room with something like 30 babies in it, it’s constantly beeping and there are nurses and people everywhere. I now have two psychologists pestering me because they think I have postpartum… but I think the way I feel is perfectly rational given my babies are basically locked in boxes at an airport terminal, and I’m being told that there’s a chance one of them might never be able to even talk. All I do all day is wake up in a small hotel room, go to the NICU, stare at them for four hours, hear more bad news about Di while being told “not to worry”, try to talk to them… sorry I mean I talk to Allie because I can’t even get close to Di anymore, and then go I get lunch (because I can’t even cook anymore), then I go back and stare at them until dinner, and then I go back to my hotel and try to relax and sleep. If I decided to skip a visit, then the whole time I’m gone I just feel anxious, guilty, and very worried that something bad is going to happen while I’m not there. This whole situation is really frustrating.
Anyway, sorry for venting. These circumstances won’t last forever, and I am trying to remember that and remain positive.
RT: https://poa.st/objects/4a35d148-ac86-4497-b637-7b57cb6df87e
