First and foremost, Taylor has been doing fantastic! She is still on CPAP which helps with her breathing, but she has not had any oxygen being provided since the day she was born. She's breathing room air. She goes off the CPAP machine 2 times daily so they can change out the headpiece and make sure that the CPAP tubing is not irritating her skin or anything. Those 2 times a day are extremely magical for Michelle and myself, as we get to see Taylor's face and head. I'm obviously biased but she's pretty dang cute! Anyway, she does excellent during those times but they say that she would probably tire herself out if she was left off for a 1/2 day. So they leave her on it so that she doesn't. Everything they do is all about minimizing the amount of energy she has to spend so that the limited amount of energy she does have can be used to help her grow. For example, her bed is heated at the perfect temp so she doesn't spend any energy heating or cooling herself.
The CPAP machine though takes some getting used to. Its just plain hard to see her face all covered up. Its like she goes from being your baby to some alien life-form w/ some alien gadgetry to breath "our" air. On top of this, her biliribun was high and they had under white light from Friday to yesterday. The light will damage their eyes, so they cover them with some foam type padding. They try to make it cute by painting some sunglasses on the top of the foam, but to be honest it just kind of makes it worse. It adds to the alien effect. Sometimes I think she looks like an astronaut or a race car driver or other things. She doesn't look like my baby though and up until yesterday when she was taken off the light we couldn't see her eyes (except when for those 2 times a day when they took everything off). Some say that the eyes are the window to the soul, and when you see her eyes, it just makes you tingle...
She has been fighting through some sleep apnea problems which is totally expected. Her nervous system is not fully developed. When she stresses, or when she falls into a deep sleep, she sometimes forgets to breathe. She's wired to all sorts of monitors and these really loud alarms go off. Sometimes she recovers on her own (getting more common), other times she has to be rubbed pretty vigorously to get her going again. We were prepared for it, so it doesn't freak us out or anything. It can be unnerving though at 4 in the morning when you finally get to sleep and those alarms go off.
Overall, she's been kicking some baby booty... We were told that she would need to have surfacant (a soapy like substance that helps reduce friction in the air sacs so that the sacs can inflate/deflate correctly). She hasn't. That's good for 2 reasons: one her lungs are doing it on their own, and two because they would need to put a breathing tube in to administer it, and there's risk that the process could damage thing. She has a feeding tube and is continually taking milk from Michelle via it (Michelle pumps and gets it into vials which then are hooked up to machines to feed it). They keep upping her dosage everyday and watching how her guts handle it. So far, so good. Let's see what else.... She is off of anti-biotics now, but is still taking fats and vitamins and other stuff via IV. She will continue for at least a week on those. She is a fighter and anytime people start messing with her she lets them know she's unhappy about it. Everybody comments how feisty she is. I guess its not common. But hey we've known that even before she was born.
She so far does not have a PIC line (a special IV that delivers everything right near the heart) but has the peripheral form. Unfortunately the peripheral kind doesn't last very long. On Saturday they had to replace the first one. It was so sad. It took them about an hour and 4 separate tries to get one to work. As crappy as I felt for Taylor and even myself, I felt real bad for the nurses. These guys are incredibly compassionate and it was about killing them that they had to keep poking. Anyway, the PIC line has been a bit of a story. We were told originally that she would get one 2-3 days after being born. They tried doing it the day she was born and that rightly upset Michelle (Taylor already had been through so much). It was because of staffing issues. Michelle pleaded with them to do it another day (its not Taylor's fault they only have one person right now that can do it). As always Michelle wins people's hearts and the lady came in the next day (her day off) to do it. Unfortunately, it didn't work and they have to try again (sometime today). Michelle is really thinking hard about whether or not she wants it done at all now as it will hopefully only be another 6 days that Taylor would need IV. The PIC has some risks associated it and they are rather severe in some cases. I'm not totally sure where I stand, but don't want see what happened on Saturday happen again.
As for us... Michelle is getting discharged from the hospital today. Basically we are just moving her stuff to Taylor's room. We have yet to figure out how to work this out. We do know that somebody will be with Taylor at all times. We love the staff so far and trust them, but there's only so much comfort that they can provide and we are the most important people in Taylor's life. Babies need their parents. There are babies here that have no-one with them. Its very sad, especially at night. It's a weird environment. It seems that the place comes alive at night with alarms sounding everywhere and babies crying. Its probably just because you are visiting with other people during the day and don't notice it as much, or because you are trying to sleep a little at night, but it gets real noisy at night. I say that, but as I'm typing I've heard alarms going off in other rooms. Anyway, I am so, so, so glad that we made the move to this hospital. These private rooms are so nice. We can control the lighting and can shut the door which blocks off a lot of the other noise. We can also sleep (or least pretend) here at night. At Emanuel it was just one room with 38 babies and their alarms and their company, etc..
Except for a few bits of time here and there, I have been with Taylor since she was born. Michelle comes over during the days to be with us. She wasn't able to be here much the day Taylor was born because Michelle got really sick, but since then she's been living over here during the day. She'll move in today. Anyway, its been surreal but wonderful at times. I haven't got much sleep at all. Last night was my best night of sleep and that was about 4 interrupted hours. The alarms will go off or Taylor will start fussing, etc... and I'll be up for a while with her. The nurses are also in here continually checking on Taylor, and doing routine jobs. I think my usefulness at night though is fading a bit. The lack of sleep is catching up and my response times to alarms is slowing. The nurses come running anyway, but its not quite the same at least to me. We are here for our baby girl... Anyway, sometime today or tomorrow I'll probably go home and see if I can crash.
Its been very emotional for us these last few days. We've been through so much that we are constantly bouncing around emotionally. Taylor has won our hearts but I would be lying if I said that we've dropped our walls. Everything has been going so great, and I want to believe that we're through the worse, but I can't do that yet. Every time I've done that in the past something has always gone wrong. The first 2 days were especially hard. Michelle was emotional and mad at herself for being so. She got so much better when she was able to come over with Taylor. Those 2 days were really hard for me to get out of my fog, but Taylor is working on me and like her mom she's pretty persistent. Friday morning around 2 in the morning, she was fussing pretty good. I was trying to calm her and all that and I just kind of smiled.... Behind all that alien gear was a baby. A baby that was no different than Tristan or Haylee, except that she is so much smaller and needs us more. It woke me up. Yesterday morning at 4:30 in the morning I got to hold her in my hands for the first time. It was just for a minute or two, but it was real special. Last night, I got to hold her in my arms for a couple hours. I can't describe the feeling and won't even try.
I'm not sure how much I'll be online today. I'm really tired, we have to get Michelle discharged, and Michelle and myself have got to try and come up with some kind of plan from here on out.
The CPAP machine though takes some getting used to. Its just plain hard to see her face all covered up. Its like she goes from being your baby to some alien life-form w/ some alien gadgetry to breath "our" air. On top of this, her biliribun was high and they had under white light from Friday to yesterday. The light will damage their eyes, so they cover them with some foam type padding. They try to make it cute by painting some sunglasses on the top of the foam, but to be honest it just kind of makes it worse. It adds to the alien effect. Sometimes I think she looks like an astronaut or a race car driver or other things. She doesn't look like my baby though and up until yesterday when she was taken off the light we couldn't see her eyes (except when for those 2 times a day when they took everything off). Some say that the eyes are the window to the soul, and when you see her eyes, it just makes you tingle...
She has been fighting through some sleep apnea problems which is totally expected. Her nervous system is not fully developed. When she stresses, or when she falls into a deep sleep, she sometimes forgets to breathe. She's wired to all sorts of monitors and these really loud alarms go off. Sometimes she recovers on her own (getting more common), other times she has to be rubbed pretty vigorously to get her going again. We were prepared for it, so it doesn't freak us out or anything. It can be unnerving though at 4 in the morning when you finally get to sleep and those alarms go off.
Overall, she's been kicking some baby booty... We were told that she would need to have surfacant (a soapy like substance that helps reduce friction in the air sacs so that the sacs can inflate/deflate correctly). She hasn't. That's good for 2 reasons: one her lungs are doing it on their own, and two because they would need to put a breathing tube in to administer it, and there's risk that the process could damage thing. She has a feeding tube and is continually taking milk from Michelle via it (Michelle pumps and gets it into vials which then are hooked up to machines to feed it). They keep upping her dosage everyday and watching how her guts handle it. So far, so good. Let's see what else.... She is off of anti-biotics now, but is still taking fats and vitamins and other stuff via IV. She will continue for at least a week on those. She is a fighter and anytime people start messing with her she lets them know she's unhappy about it. Everybody comments how feisty she is. I guess its not common. But hey we've known that even before she was born.
She so far does not have a PIC line (a special IV that delivers everything right near the heart) but has the peripheral form. Unfortunately the peripheral kind doesn't last very long. On Saturday they had to replace the first one. It was so sad. It took them about an hour and 4 separate tries to get one to work. As crappy as I felt for Taylor and even myself, I felt real bad for the nurses. These guys are incredibly compassionate and it was about killing them that they had to keep poking. Anyway, the PIC line has been a bit of a story. We were told originally that she would get one 2-3 days after being born. They tried doing it the day she was born and that rightly upset Michelle (Taylor already had been through so much). It was because of staffing issues. Michelle pleaded with them to do it another day (its not Taylor's fault they only have one person right now that can do it). As always Michelle wins people's hearts and the lady came in the next day (her day off) to do it. Unfortunately, it didn't work and they have to try again (sometime today). Michelle is really thinking hard about whether or not she wants it done at all now as it will hopefully only be another 6 days that Taylor would need IV. The PIC has some risks associated it and they are rather severe in some cases. I'm not totally sure where I stand, but don't want see what happened on Saturday happen again.
As for us... Michelle is getting discharged from the hospital today. Basically we are just moving her stuff to Taylor's room. We have yet to figure out how to work this out. We do know that somebody will be with Taylor at all times. We love the staff so far and trust them, but there's only so much comfort that they can provide and we are the most important people in Taylor's life. Babies need their parents. There are babies here that have no-one with them. Its very sad, especially at night. It's a weird environment. It seems that the place comes alive at night with alarms sounding everywhere and babies crying. Its probably just because you are visiting with other people during the day and don't notice it as much, or because you are trying to sleep a little at night, but it gets real noisy at night. I say that, but as I'm typing I've heard alarms going off in other rooms. Anyway, I am so, so, so glad that we made the move to this hospital. These private rooms are so nice. We can control the lighting and can shut the door which blocks off a lot of the other noise. We can also sleep (or least pretend) here at night. At Emanuel it was just one room with 38 babies and their alarms and their company, etc..
Except for a few bits of time here and there, I have been with Taylor since she was born. Michelle comes over during the days to be with us. She wasn't able to be here much the day Taylor was born because Michelle got really sick, but since then she's been living over here during the day. She'll move in today. Anyway, its been surreal but wonderful at times. I haven't got much sleep at all. Last night was my best night of sleep and that was about 4 interrupted hours. The alarms will go off or Taylor will start fussing, etc... and I'll be up for a while with her. The nurses are also in here continually checking on Taylor, and doing routine jobs. I think my usefulness at night though is fading a bit. The lack of sleep is catching up and my response times to alarms is slowing. The nurses come running anyway, but its not quite the same at least to me. We are here for our baby girl... Anyway, sometime today or tomorrow I'll probably go home and see if I can crash.
Its been very emotional for us these last few days. We've been through so much that we are constantly bouncing around emotionally. Taylor has won our hearts but I would be lying if I said that we've dropped our walls. Everything has been going so great, and I want to believe that we're through the worse, but I can't do that yet. Every time I've done that in the past something has always gone wrong. The first 2 days were especially hard. Michelle was emotional and mad at herself for being so. She got so much better when she was able to come over with Taylor. Those 2 days were really hard for me to get out of my fog, but Taylor is working on me and like her mom she's pretty persistent. Friday morning around 2 in the morning, she was fussing pretty good. I was trying to calm her and all that and I just kind of smiled.... Behind all that alien gear was a baby. A baby that was no different than Tristan or Haylee, except that she is so much smaller and needs us more. It woke me up. Yesterday morning at 4:30 in the morning I got to hold her in my hands for the first time. It was just for a minute or two, but it was real special. Last night, I got to hold her in my arms for a couple hours. I can't describe the feeling and won't even try.
I'm not sure how much I'll be online today. I'm really tired, we have to get Michelle discharged, and Michelle and myself have got to try and come up with some kind of plan from here on out.
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