Thursday, December 29, 2011

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.

Sunday, December 25, 2011

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.

Wednesday, December 21, 2011

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.

Tuesday, December 20, 2011

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!

Sunday, December 18, 2011

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.

Saturday, December 17, 2011

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.


The last I heard Madison took 70% of her feedings by bottle, that was said friday. And they predict that she will be bottling over the week. So to try and get her home my husband and I are doing an overnight with her Sunday night at the hospital in hopes that she will just start taking them all. My mom is saying she could even come home Monday....we will see but I'm hoping this will help her out because she is doing a little more each day. Her due date has come and gone so we are hoping now that she will be home by christmas. I did end up taking the severance package from work so my last day of work is the 30th. So I technically only have 3 days of work left including tomorrow.

Tuesday, December 13, 2011

December 13th 2011

Today is my due date. Madison is now 40 weeks old but close to 4 months now. Not sure if I updated about the contrast test but if I didn't she doesn't have any narrowing or scar tissues in her intestines she is just a slow digester. When I talked to them they were thinking about giving her meds to speed it up or just leave her that way, it was a question I forgot to ask. We had the oxygen & monitor training was scary but again its something we need to know. Hopefully by the time she comes home she wont need it. She she STILL needs to get her eating in order...the last 3 or so days she took her whole bottle for the morning feeds. Today she only took 4ccs....not a lot at all. I don't feel like they sit there and give her a chance to eat they probably rush her through it and is like oh well we will put it down the tube. I can't be there every second of the day to feed her and I wish I could it also doesn't help that this whole house is sick so we all can't see her. She is never going to come home if they don't give her a bit more time. But what is stupid too is that when she comes home they say feed her when ever she wants and how ever much she wants to eat but in the CCN its she needs to eat it all in this amount of time and at this specific time...really frustrating.

Friday, December 9, 2011

We are moved.

and when I say I HATE packing / moving I mean it. We are now snuggled in our 2x4 and have yet to really unpack. We started at 8:30AM and didn't finished getting everything out until 10PM. Well I shouldn't say everything because there is still a computer chair and a bike left but that's it. I'm pretty bummed because I have no clue where that free voucher for the free night and the B&B went and I really wanted to book a night now I look like an ungrateful ass. Well anyways Madison had to go for another contrast test because of how much spitting up she's been doing and the residuals she's been leaving. The last I heard she had 2 large poops since the test began so things were moving. I'm here at work miserable because I didn't get to sleep until pretty much midnight and I had to wake up for 4:45AM. On top of that I think my period has officially started (well hello friend I have seen a real one since I started puberty) if well this is inface what it is because since the babies I had some blood on and off but this was the dark red kind. It doesn't really touch a pad just a couple drops here and there but is nasty when I wipe...real thing? I think its possible. Anyways I'm at work I do have a pad on but feel gross because I don't have anymore and I'd much rather tampons, I stuck my figure through my pants some how pulling them up now I have a huge rip in them and I'm starving because I haven't eaten much. I have money but this cafeteria doesn't take cards and I have no car so I can't get anywhere. Ugh we did Ger the details of the severance package and I think I'm leaning towards signing this bad boy band getting out of here with perks while I can. So I have 9 hours of PTO and I am going to leave this place for 12:30PM use 6 of those hours and get myself together for tomorrow, ha. On the plus side I can go side that's makes me able to see my babes :D

Tuesday, December 6, 2011

Infant CPR

My husband and I had our Infant CPR class and it is really scary thing to think about, being your child in that position let alone your premature child who fights for her life daily...but I can say I am somewhat prepared...can't say how I would handle things in that situation but hopefully I can react when needed. The dolls we used to practice were huge. I was telling the nurse they should have preemie dolls to use. We went over the proper way to give CPR to an infant and how to check is he/she is responsive and what to do in either case. We also went what to do if your child is choking and what not. It was a lot to take in and I hope I'm never in that situation. One of the nurse managers came up to me today after class while I visited Madison for a few and said she had a few vouchers given to her for a free night at a bed & breakfast that is across the street from the hospital and I thought it was the sweetest thing! We will surely take her up on the offer a free night alone outside of our house and next to our daughter who is only a hop, skip and a jump away. We just have to figure out when exactly. We ended up getting all the couches out of here and a dresser now we have some cabinets we have to unpack and clean up a bit. we have our bed another dresser, a TV, stand, and my computer to get out of here and we should be set...I can't wait until its all done!

Monday, December 5, 2011

Endless I tell you!

I'm sitting here packing and everytime I turn around it's like nothings changed. Theres just way too much crap and we have to be out thursday including cleaning up this place a bit. Adam should be home a little after 1:00PM to help out. We have to go see Madison for her 3:00PM feed then meet my parents to go see this out that is for rent, it sounds really nice but they probably won't be able to afford it so we will be still stuck in their tiny apartment, then we come back here grab some stuff to unhaul at various families basements. Ugh.

I'm not even going to get excited anymore....

this is how it ALWAYS happens. Back to the Oh so lovely Feeding issues! Grrr. So yesterday before a feeding. With the tube that goes down her nose they take a syringe and draw back to check her residuals...and there was 16ccs of food left that she hadn't digested from the feeding before. So with her next feeding they had to give her what the remainder of her feeding would be minus the 16ccs still left which pretty much lowered her feeding. So I don't know whats going on now. It's pretty irritating knowing she "was" closer to home and now there is more of a set back. So on top of not taking all her bottles all the time she isn't digesting much now either. Her due date is 8 days from today....I don't see her being home by then or even being home for Christmas', what the fuck?!

Friday, December 2, 2011

All the December Babies are appearing

11 days from today would have been the twins' due date. I would have loved to know what pregnancy would have been like past 23 weeks. Up until 23 weeks I had no issues (aside from my cervical issues and random bleeding episodes). I didn't have any pain, only threw up once I was just careful and didn't have much of anything to complain about. Now all the December mommies are having their December babies and I missed out on it all. But let me tell you I am wiser. Even though I am sad I didn't get to enjoy my pregnancy or have the opportunity to do the things every pregnant women does. I had the opportunity to witness something more amazing that not many women get to. I saw my baby develop before my eyes. Madison had paper thin skin, no ears but a holes in her head for them, no butt just her anus, her eyes were still fused shut, no nipples or eye lashes. Then all of a sudden things changed in the matter of 2 weeks and she looked completely different then when she was born and her eyes started to open. She went from not being able to handle any kind of touch to keeping her levels where the should be when I or my husband would touch her. She went from kicking around a bit with her eyes shut most of the time to being very alert, looking around while bottling and being content. Everyone talks about new born photos but I've been taking photos of her since she was 23 weeks 3 days, 100+ days me that is when she was newly born. She has been through everything and she doesn't even know it. One day she will read my posts if she is at all interested in how she got here and how hard she fought to stay. She makes me so proud everyday.

A tough decision

Well that time has now rolled around again at my job. We were split apart and sold to a different company and now there are layoffs yet again, this time all over the company. They are giving us the option, yet again. Voluntarily quit and be paid normal pay for a while and after that runs out you are able to collect unemployment, get involuntarily laid off and collect unemployment or maybe keep your job. Last time this happened I so wanted to leave the place take the package and do something better...but never did. I think this may be my second chance. Oh last option maybe keep your job? So it is a tough decision...I think we could handle it. I can get a part time focus on school and we will be living with my mom so we wont have to pay rent or electric just credit cards our cellphones and car payment. Hmm. Got this information from a friend...our meeting about this is today.