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.

70%

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.

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?!

On the road to home we go...

but who knows exactly how long that will take. Madison is a 38 weeker

That TINY thread was thee oh so famous PICC line.

meaning her due date is in exactly 2 weeks from today. Her PICC line was removed yesterday and I was there to witness it. It literally looked like a thread, which was going into a major artery right above her heart. This morning around 6:30AM she was moved to CCN and its so different there. Everything seems a bit more quiet and no so fast paced. There were a few dings here and there but even then it seemed really calm. I went in for 3:00PM to do her usual feeding and they had already fed her. She took 18ccs and the rest down her tube. I was a bit upset because I woke the hubby up from his nap to rush and get down there to feed her and it was already done. The nurse did say to me she was up and looking for a bottle so I guess it was good they are trying to do it on her time more so than on an exact schedule. She is making me a bit nervous lately. When I've held or or my husband holds her after a while her heart rate drops a bit and her O2 levels and she sometime self corrects it and she seems good and it happens again then I get freaked out and I put her back in her bed and shes better. Last night I was holding her and she was acting up and her was dinging for a while and there was a nurse near by and didn't even turn around to see if she was okay. She was dipping into the 50s for her O2 level which should be 91+ and she didn't come over until I was like "Her oxygen is really low," and she was like "Oh shes coming up." By then she was in the 80s still dinging and shot back down to the lower 70s still dinging so I put her back, and I could have sworn her lips looked a bit blue to me. How am I going to know whats happening when we go home? Or if she is home on oxygen and a monitor how will I even enjoy being home with her when I'm just going to stare at her monitor making sure everything is going okay.







36 weeks (3 months 4 days)

Madison took an 11cc bottle from me yesterday, it took her a bit and with a nipple switch she took all the formula :D the doctors are going to increase her feedings to two times a day now at 1.5ccs, so she should be at 12.5cc now and at 14byt noon. I am hoping she will continue doing the way she is now with feeds even when they get higher and higher. I want to see her get to her goal of 29ccs which is almost an ounce.

I was told once she is taking in enough to gain weight she will be taken off her IV and all the meds she is on can be mixed in her formula. She is on the oxygen she can go home on. I don't think she even needs it because half the time the prongs aren't even in her nose.

Oh I almost forgot! Yesterday she was weighed at 3lbs 15ozs...so I'm thinking if she gained 30grams she would be 4lbs today...let's hope! I want to see her in an open crib. So what really are we waiting on? Its pretty much feedings. The doctors are worried about the PICC line because it can be a very susceptible for infection and we want to get that out asap. She has to keep her temp up and not have any respiratory.distress or anything like that. She is 36 weeks today...maybe all of these things will happen in these last 4 weeks I can Onlyhope.

Back home, the focus her belly

Madison made her journey home yesterday after 10AM and was back at a little after 12PM. Her PDA is fixed :) now the focus is on her belly. They put a contrast solution and did an extra to see if the solution would flow through nicely. Well the contrast flowed and then came to a stop. It is good that it didn't come outside the intestine so she doesn't have a perforation (anymore?) So their plan last night was to try a suppository to try and get things moving then did it in Boston and nothing so they tried back home and said if that didn't work they would try an enema which I think would work better...I hope it did. That is best case scenario. Worst case scenario another surgery...if the intestines did have a whole and healed over the scarring may have narrowed her intestine so much that nothing can pass through so in that case they would have to remove that portion and maybe reattached but that is unlikely because they wouldn't want the scarring to do the same thing so they would (I forgot the medical term) but a bag on the outside of her intestine to poop that way until she were a bit bigger to reattached her intestine with out that scarring issues, that is what I'm hoping DOESN'T happen whatsoever. So when I call for an update today I'm hoping the enema worked beautifully...