Well haven't posted anything in awhile so I figured I would put something up here!! Addy is doing great!! They have started feeding her by bottle using the Haberman bottle used for babies with cleft lips and palates. She seems to do pretty well with that as long as she is in the "mood" for it LOL It's either hit or miss with her bottle feedings. She either takes it or she doesn't!! She's only getting 5cc right now but hey its a start!!
The only down side as of right now is that she scares the crap out of me when she has her apnea spells. She stops breathing and desats with her oxygen levels. My nurse assures me that it is all positional since she does so well when she is in her bed. So I just have to find a position that is comfortable for both me and her. Hopefully I find that or she grows out of it quickly!! My heart drops to my feet and I start sweating under the gown and gloves I have to wear. Her little face just gets "dusky" looking. It gets pale and starts to turn a shade of purple in some places. I try to get her to breathe and she takes like two or three breaths and then stops again!!
But she is still doing so well on nasal cannula!! Two days ago I changed her diaper, gave her a bath, and weighed her all by myself!! The nurse was next door with another baby and said whatever I felt comfortable with so I did it all!! Minus putting on the new leads since I had to have gloves on the stupid things would have stuck to my gloves. LOL She weighs 4 pounds 14.1 ounces now and is 42cm long however many inches that is. LOL Well that's all I have for now but I will post more as she progresses!! She's so close to coming home now and it's scary!! I'll post some more pictures soon!!
Monday, February 25, 2008
Wednesday, February 20, 2008
Addy Update! 2/14/08
They took Addy off of ET/CPAP today and put her on nasal cannula!! She is now breathing on her own with the help of steroids. She only has 21% oxygen which is what you and me breathe!! This is so exciting!!
I can't wait till I go back and see her!! Wendall flew me home so I could be with him for Valentine's Day and could be at home. She is gonna be so different now that she is off of the vent! I will be able to hear her cry! LOL She has also been off of heat since yesterday! She has been doing great with that as well! She is just all around great. She won't have to have her test on her trachea now since she is breathing on her own!!
I guess as soon as the steroids wear off as long as she's breathing good they'll start trying to feed her. Not sure when they're gonna try. They said about three days after the steroids start wearing off they usually drop with they're breathing so she may end up on CPAP or even back on the vent. So hopefully its neither but if either one I hope she never goes back on the vent!! She's just too big for that now!! She just looks miserable with it. Plus I would hate for her to have to get a trach put in and her have a feeding tube for so long!!
They started putting clothes on her since she isn't on heat anymore!! It's so cute!! It's funny they float on her even though they only fit up to 5 pounds!!
Well that's all I have for now!! See you guys later!! And Happy V-Day!!
I can't wait till I go back and see her!! Wendall flew me home so I could be with him for Valentine's Day and could be at home. She is gonna be so different now that she is off of the vent! I will be able to hear her cry! LOL She has also been off of heat since yesterday! She has been doing great with that as well! She is just all around great. She won't have to have her test on her trachea now since she is breathing on her own!!
I guess as soon as the steroids wear off as long as she's breathing good they'll start trying to feed her. Not sure when they're gonna try. They said about three days after the steroids start wearing off they usually drop with they're breathing so she may end up on CPAP or even back on the vent. So hopefully its neither but if either one I hope she never goes back on the vent!! She's just too big for that now!! She just looks miserable with it. Plus I would hate for her to have to get a trach put in and her have a feeding tube for so long!!
They started putting clothes on her since she isn't on heat anymore!! It's so cute!! It's funny they float on her even though they only fit up to 5 pounds!!
Well that's all I have for now!! See you guys later!! And Happy V-Day!!
Sunday, February 17, 2008
Addy Update 2/9/08
Hi again everyone!! I went to see Addy today and when I got there I found out she is on ET/CPAP which is still the tube but it is not breathing for her and she is only on 21% oxygen which is what we breath!! So she is doing so great!! I'm betting it was from me holding her!! She was on 20bpm (Breaths Per Minute) and 25% oxygen and her SATs were all over the place.
I just don't know any other reason she would be doing so well!! She hasn't had a change in awhile and didn't seem like anything was gonna happen! It was like day and night overnight!! Well I got to hold her again today!! So I guess i'll be able to hold her once a day again!!
So now that she is 4 pounds 4 ounces they can do a test on her to see what is affecting her breathing!! I hope they do it Monday before I leave to go back home for a little while. The dr. said it is either bad lungs, Bronchomalasia(sp), or Tracheamalasia(sp). I hope its bad lungs since they can just give her steroids but if it is either one of the other two I hope it would be bronchomalasia instead of tracheamalasia. If its Bronchomalasia she will come home on CPAP. If its Tracheamalasia then she well have to have a trach put in if her trachea doesn't mature fast enough and harden. With the trachea will come a feeding tube or gtube with a button .
So I hope its one of the others!! Thanks again!! Your words of encouragement help me get through everyday!!
I just don't know any other reason she would be doing so well!! She hasn't had a change in awhile and didn't seem like anything was gonna happen! It was like day and night overnight!! Well I got to hold her again today!! So I guess i'll be able to hold her once a day again!!
So now that she is 4 pounds 4 ounces they can do a test on her to see what is affecting her breathing!! I hope they do it Monday before I leave to go back home for a little while. The dr. said it is either bad lungs, Bronchomalasia(sp), or Tracheamalasia(sp). I hope its bad lungs since they can just give her steroids but if it is either one of the other two I hope it would be bronchomalasia instead of tracheamalasia. If its Bronchomalasia she will come home on CPAP. If its Tracheamalasia then she well have to have a trach put in if her trachea doesn't mature fast enough and harden. With the trachea will come a feeding tube or gtube with a button .
So I hope its one of the others!! Thanks again!! Your words of encouragement help me get through everyday!!
Addy Update 2/8/08
So I get to the hospital yesterday and walk into Addy's room. Her primary nurse Trish that I love so much was not there. Instead she had assigned Kim to her case while she was off. I always forget that Fridays start her weekends. Anyway I just got straight to the point and asked if I could hold her before I talked myself out of it. I told her Trish told me I could. Kim said yes that I would have to be very careful so she doesn't get extabated. Then she let me know that Addy has extabated herself before!!! Of course that scared me half to death the thought of her being extabated while I held her and them all rushing in and taking her from me to be reintabated right in front of me! This is why they always have her swaddled.
So first she asks the Dr. first if it is ok that I hold her and asks me if I have held her before. I have held her but never while intabated!! So she comes back and tells me that I can hold her for like 20-30 min cause she'll have to stay close by and has another baby she is taking care of as well. I'd take any time I could get. So she calls the RT to come in and help her move her into my arms.
I put on my gown and gloves and look like a freak!! I sit in the chair with my arm propped on the blankets they put on the chair for me to hold her. I start getting anxious as I watch them get all of her wires together and detach her from the vent for a split second as they move her to my arm. They taped the tubes to the chair that I was sitting in.
So I'm holding her!! It was so odd to have someone so tiny in your arms that barely weighs anything and yet feels so heavy!! It was so nice to finally hold her again! Last time I held her was a month ago. She was 2 pounds 4 ounces then so big difference. I sat there with her and she started opening her eyes which she never does. They are dark blue right now which I know every baby's eyes are dark blue for awhile but I still can't help but hope that she gets her daddy's bright blue eyes instead of my brown ones!!
She desated for awhile which is normal since she doesn't like to be touched but as soon as they stoped messing with her and she was in my arms she shot up and started high sating like 95-97. Her parameters are 82-94 right now. She was on 25% oxygen and they ended up having to take her down to 22% while I was holding her which is amazing!! We breath 21% so 22 is so great!
She seemed to love being held. Spoiled already LOL I just started at her forever. She was passed out cold! Every so often she would start squirming and turn red which is when she would of course desat. She had so much gas haha. Once she was done with all that though she was hi sating again. So I look up at her monitor and i've been holding her for 30min already. Kim just asked if I was alright and then went back to her charting. I ended up holding her for the whole visiting period I was there which was like an hour and a half!! It was so great!!
She did so well with it and really seemed to enjoy it! I can't wait to hold her again and can't wait for dad to be able to hold her!!
Well here's some pictures!!
So first she asks the Dr. first if it is ok that I hold her and asks me if I have held her before. I have held her but never while intabated!! So she comes back and tells me that I can hold her for like 20-30 min cause she'll have to stay close by and has another baby she is taking care of as well. I'd take any time I could get. So she calls the RT to come in and help her move her into my arms.
I put on my gown and gloves and look like a freak!! I sit in the chair with my arm propped on the blankets they put on the chair for me to hold her. I start getting anxious as I watch them get all of her wires together and detach her from the vent for a split second as they move her to my arm. They taped the tubes to the chair that I was sitting in.
So I'm holding her!! It was so odd to have someone so tiny in your arms that barely weighs anything and yet feels so heavy!! It was so nice to finally hold her again! Last time I held her was a month ago. She was 2 pounds 4 ounces then so big difference. I sat there with her and she started opening her eyes which she never does. They are dark blue right now which I know every baby's eyes are dark blue for awhile but I still can't help but hope that she gets her daddy's bright blue eyes instead of my brown ones!!
She desated for awhile which is normal since she doesn't like to be touched but as soon as they stoped messing with her and she was in my arms she shot up and started high sating like 95-97. Her parameters are 82-94 right now. She was on 25% oxygen and they ended up having to take her down to 22% while I was holding her which is amazing!! We breath 21% so 22 is so great!
She seemed to love being held. Spoiled already LOL I just started at her forever. She was passed out cold! Every so often she would start squirming and turn red which is when she would of course desat. She had so much gas haha. Once she was done with all that though she was hi sating again. So I look up at her monitor and i've been holding her for 30min already. Kim just asked if I was alright and then went back to her charting. I ended up holding her for the whole visiting period I was there which was like an hour and a half!! It was so great!!
She did so well with it and really seemed to enjoy it! I can't wait to hold her again and can't wait for dad to be able to hold her!!
Well here's some pictures!!
Addy Update! 2/6/08
Well Addy's new and unimproved condition is that she has Methicillin Resistant Staph Aureus(MRSA). Its pretty much a staph infection. She is not symptomatic but has tested positive from her nose.
So she is now in her own room and will be there until she leaves. It's kinda cool that she has her own room but it sucks now that I have to where a gown and gloves if I want to touch her!! OMG how does that even feel like you are touching your baby?? I won't be able to feel her skin. This just sucks. The baby that was across from her also has it and is also in containment in the room next to her.
So she is 3 pounds 14 ounces now and gaining. Her feedings are at 7cc/hr continuous and they are having to put her OJ tube further down her intestines and put in another tube to drain the bile out of her stomach cause for some reason it is coming back up and they said the only way that happens is if her intestines is blocked.
They already changed the tube from 8 french which was huge to 6 french. They did have her on the NG tube but put her on the OJ tube cause she was having reflux.
As of right now we are waiting for her to go up to 2 kilo which is 4 pounds 4 ounces so they can check her trachea. They said the breathing problem is either bad lungs which I am hoping what its is since it can be treated with steroids or it is something called either Bronchomalasia(sp) or Tracheamalsia(sp). If it is Bronchomalasia then she will only have to be on C-PAP maybe even when she comes home because she'll need extra pressure so keep open the smaller tubes that brach out open for her to breath. If it is Tracheamalsia then she will require a trach to be put in for her to breath until the trachea matures and gets hard so it does not collapse when she breathes.
So it is a wait and see game right now with her. I am just glad that I know what is going on and what I am looking at dealing with. I have been told that she can't go to daycare because she can only be around one other kid at a time when she comes home which I am very relieved with!! My fiance wanted me to go back to work but I didn't. She also has to be the only baby that the person is taking care of. So I won't be able to work for the first 6 mths to year which is great!! I won't miss anything!! So I have also been told that she will have at least 6 dr.s!!! OMG I will be so busy with her lol
Well that's all I have right now.. Thanks everyone for checking on her and asking how she is!! It's great to know that it's not just me that is caring about her!!
So she is now in her own room and will be there until she leaves. It's kinda cool that she has her own room but it sucks now that I have to where a gown and gloves if I want to touch her!! OMG how does that even feel like you are touching your baby?? I won't be able to feel her skin. This just sucks. The baby that was across from her also has it and is also in containment in the room next to her.
So she is 3 pounds 14 ounces now and gaining. Her feedings are at 7cc/hr continuous and they are having to put her OJ tube further down her intestines and put in another tube to drain the bile out of her stomach cause for some reason it is coming back up and they said the only way that happens is if her intestines is blocked.
They already changed the tube from 8 french which was huge to 6 french. They did have her on the NG tube but put her on the OJ tube cause she was having reflux.
As of right now we are waiting for her to go up to 2 kilo which is 4 pounds 4 ounces so they can check her trachea. They said the breathing problem is either bad lungs which I am hoping what its is since it can be treated with steroids or it is something called either Bronchomalasia(sp) or Tracheamalsia(sp). If it is Bronchomalasia then she will only have to be on C-PAP maybe even when she comes home because she'll need extra pressure so keep open the smaller tubes that brach out open for her to breath. If it is Tracheamalsia then she will require a trach to be put in for her to breath until the trachea matures and gets hard so it does not collapse when she breathes.
So it is a wait and see game right now with her. I am just glad that I know what is going on and what I am looking at dealing with. I have been told that she can't go to daycare because she can only be around one other kid at a time when she comes home which I am very relieved with!! My fiance wanted me to go back to work but I didn't. She also has to be the only baby that the person is taking care of. So I won't be able to work for the first 6 mths to year which is great!! I won't miss anything!! So I have also been told that she will have at least 6 dr.s!!! OMG I will be so busy with her lol
Well that's all I have right now.. Thanks everyone for checking on her and asking how she is!! It's great to know that it's not just me that is caring about her!!
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