Busy Busy Busy

Well these past few days well almost week now has got me pretty busy to say the least. Madison has kept me pretty busy between getting bottles ready, her med schedule and staying up all night because she's crying and won't sleep until after her 6AM feed. Since coming home it seems like there is no time in the day, because she eats every 2ish to 3 hours there isn't anytime for anything and everytime I look at the clock its her next feed. Where does the time go? She had her first appointment with her pediatrician yesterday and she is catching up with other babies but she ceded to get two shots...that was heartbreaking. She also saw her pulmonary doctor along with a nutritionist, social worker and an occupational therapist. She did see the doctor who did her laser surgery and said her eyes look great and it had only been 6 days after the surgery. So she will pretty much see everyone in a month. Nothing too much to complain about aside from the lack of sleep but it will only get better I'm sure.

126 Days

Today marks Madison's 126th day of her NICU/CCN stay.
It also marks her last day there.

In her car seat



Madison & Emora

 We got to the hospital for 10AM to check with the hospital pharmacy about her meds and get her car seat base to put in. We did that went out to eat with my husbands family because we can't leave with Madison to go anywhere yet and we returned to the hospital by 3:00PM...and she wasn't ready to leave. They wanted to space out her eye drops so I fed her again put her going home outfit on and just kind of enjoyed out last day there. So 6:00PM came around and it was time to get things backed and Madison in her car seat to go. I went of the meds with the nurses again to make sure I knew what I was doing and that was that. Madison & Emora had their pictures taken together. I can't believe I forgot to mention this but two weeks after Madison was born we got a neighbor named Emora who was born a few days after 24 weeks. So her mom and I have becomes friends and we decided that we would keep in touch and keep the babies together. She is just a couple days short from leaving now. So Madison came home on the Eve of the Eve :) December 23rd 2011 after 6:00PM. So was so good in her stroller ride and in the car but when it came time to go to bed (mommy and daddy) she wouldn't sleep and just crying and screaming. The only way she would be quiet is if you held her and patted her back otherwise it was screaming. So 6:00AM rolls around she gets her fed I wrap her up put her down and sneak away and she sleeps! An hour and a half later the visiting nurse came over and had to wake her up. Soo now we know she sleeps during the day and I'm hoping I can try and break her of that habit. She did do a bit better last night I got an hour of sleep in before she woke up...better then no sleep I had the night before. I love my little sweetie :) Sorry it has taken a bit to get back but I'm sure you all understand. Thank you for those who follow my blog and of course I will still continue to update. For those of you who are there, have been there or going to be there it is a VERY long journey but it will come to an end and it is worth it.

Is this it?

Well we started today early (December 22nd 2011). I was at the hospital by 9AM in order to catch the doctors and find out when Madison was coming home. I don't remember if I said but Madison did really good with her surgery and was eating practically everything after not being able to eat for 12 hours prior to the surgery. So after an hour and a half a resident comes over and says "well are there any questions or concerns you have?" and I'm like yes "When is she coming home?" and she reply "I can't really say she is looking good but I have to make sure all the doctors are in order with it." I interrupt her saying she is taking pretty much all her bottles and that was the only thing we were waiting on pretty much. So we took her notes and said she had to get all the doctors together and talk it over. Meanwhile everyone and their mom is coming up to me asking when shes going home and I of course STILL have NO CLUE. So she comes back with another nurse maybe 45 minutes to an hour later and says "I have good news!" "We are planning to discharge her tomorrow." Boy was I happy but cautious because as you know in the NICU & CCN things can change very quickly. So I wore a smile in the back of my mind that night. I was told she had one more steroid eye drops for her eyes so she needed her last dose before she left. We estimated after 3:00PM she would be on her way home. So we left early in order to get our room extra cleaned set up her playard and buy more diapers, pretty much get everything situated. So we went back that night visited her fed her left and that was that for that night.

Surgery No. 2

Today started with an early wake up call. We showered got to the hospital and visted with Madison a little after 8:00AM only to find out once we got there the surgery was pushed back an hour. So instead of 9:30AM it was 10:30AM I didn't mind much I got extra time with my babes. When we got to the NICU and to her bed she was screaming her little head off : / midnight was her last feed so she hasn't eaten much so I held her and tried to get her to sleep a bit before he surgery and she did. She sleep through transporting her from bed to bed and slept through our walk to the other end of the hospital where she was having the surgery. When everything was situated they said it would take an hour so it would be done by 12:00PM. It was 11AM then. So we walked back to the other side of the hospital where the cafeteria was grabbed some food and tore it up. So then it was about 15 minutes until surgery should be finished so we walked back slowly sat in the little room to wait. So 12PM came and gone. By 12:10PM the doctor came in and said there were no suprises and the surgery couldn't have gone any more perfect and that they are waking her up now. Keep in mind she had to have a breathing tube put in for the surgery which I didn't like at all. So all the nurses and people that were with us to take her to the operating room was standing in the hall waiting for her to come out. One nurse said "What they can't wake her up or something?" So I heard that and was like whatttt? Then I overheard another nurse saying "Do we need to get respitory to help?" So after that a nurse came over and said everything was fine they extubated her and they are just waiting for her to wake up more. So I was like thank you for telling me' and she was saying that she was wondering why they didn't tell them that until after 12:30PM. So we waited she got back to the NICU and crying...poor hungry baby. So after that she fell asleep again so once she wakes up they will start half feeds and gradually increase...again. So I will be back there later on and hope to feed her a couple feeds tonight.

The Overnight.

It was nice. Kind of short lived because she had to be brought back into the nursery because she had a doctors appointment at 6:00AM to get her eyes checked out. So we gave her back after her 3:00AM feeding. Which by the way she took all her bottles from me so I fed her 3 times. I didn't sleep at all. I was up that morning at 4:50AM for work on Sunday and still up at 5:00AM the next morning(Monday). It was either her monitor going off for no reason or her crying but it was great just being there alone in a room with her. I did her meds a couple times and it wasn't too bad.

Anyway the doctor's appointment...not so well. Here eyes are getting worse. So at around 4PM we went to meet with the specialist and he of course was an hour and a half late...anyway bottomline she needs surgery. She is borderline for REALLY needing the surgery and is at the point where they don't want to do nothing and eventually have her retina detach and ultamitaly be blind. So all the good feeding she has been doing will be stopped today inorder to be prepped for surgery and we will have to start all over again BIG BUMMER. So tonight she will spend back in the NICU and they are going to start an IV...all the things we moved away from. Wednesday morning sometime will be her surgery. I'm not too worried she has gone through much worse.

ANYWAYS here are the Christmas pictures I promised!

Our First Night

I figured since I knew we would spend the night tonight at the hospital I should use up my last 3 hours of PTO and leave work early to see the hubby for a bit and then go. So I did. We got to the hospital at about 7:50PM got our things situation and gazed at the cutest little girl in the world. So we put our stuff in the room which is a sauna by the way, ha then came back out. I did her meds and fed her. She took all but 2ccs which I don't think the nurse even wrote down. So 42 ccs total. So she was put back to need and wheeled in our room so I'm just kind of sitting her waiting for her next feed at 12AM but it will probably be a bit sooner. She has been fairly quiet aside from a couple cries here and there. I feel like I just had her and its our first night together well it is our first night but I didn't just have her. I'm excited but sweating ha I won't be able to sleep I don't think but its all for her. Hubby is here too. I asked one of the nurses what happens if she takes all her bottles for me but doesn't for anyone else and she just said if she does it for me then she should do it for the nurses...but like I've said before she does this thing where she sleeps or rests for a few then goes back to eating and I feel like when they do that the nurse just goes well I guess we are done and gives up with her. She does that to me a lot. The nurse was like well I guess you will need to commit yourself her which I kind of took offense to. I don't always have a car and when I do I'm here I feed her and if I'm not here I call.

Christmas Pictures

I can't believe I almost forgot about this. Thursday night my mother and I went to the hospital to take Christmas pictures of Madison. We weren't too prepared and because of being in the NICU before we weren't sure what she could and couldn't be exposed (props wise) so we. get her dressed up. Have the nurse clean off the counter we wanted to use and we put up a white blanket as a backdrop. We tried laying her on her back didn't work so well them we tried her belly same thing. So a nurse took her and sat her up and held her behind the blanket. Then my mom was like too bad we didn't have mini presents and a nurse was like or a big teddy bear to lean her against and all of a sudden someone pops over with a couple presents to add to the picture. I did an okay job with crappy lighting. I think round two will be on Monday. BUT unfortunately I can't showcase the photos because I'm on my cell phone so that will have to be another day when I have internet.