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.

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.

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 yesterday...it 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 ago...to 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.

Wednesday, November 30, 2011

Unmotivated

I seriously can't get motivated to pack here. I managed to whip out a bunch of things from our bedroom closet and well it's been sitting there for a few days. I've walked in and out of the bedroom just moving a couple things and I'm just not feeling it. There is WAY too much to get out of this place and I'm such a huge procrastinator and my husband just puts everything off, hes at school  now and I can't ask for his help. Ugh!

Tuesday, November 29, 2011

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.




Monday, November 28, 2011

Such a strong person or so you think

I lightened the little area so you can see the orb.
I haven't really had time to just sit and make an actual post about the craziness going on in my head...so here starts the rambling. Those who know me we'll say as in can see my face to face probably look at my and say wow with everything she's been through she is so strong and handles things well. Well I wish I could say the same when I'm alone or at work with my headphones on with hours and hours of thinking time. No one knows I wake up on my days off sometimes and just sit her and cry and its not like I can call someone up and cry to them because I'm not that person. However I would like to see a therapist but can't afford it. I think about how there are similarities between Madison and Dexter and how he would look if he were at Madison's point right now. I looked over pictures of Madison I've taken and how one specific one sticked out (its on here) the one where she is bottling and holding the bottle. Then to the left of the photo there is an orb there next to here and the only thing I can think of is that is Dexter there with his sister being the big brother he should be and it brings tears to my eyes just thinking about it. Going through the baby shower photos from a totally different camera there are orbs in those too, possibly Dexter and other family. Some of you may think I'm crazy but its worth thinking about. Now I'm freaking out about this whole moving issue. There's just so much to do so much to pack what we have room to keep and what we have to get rid of. We have less than 14 days...how are we going to get all this done with me working weekends and Adam going to should during the week in the mornings and working too. I'm really not looking forward to living in a box with the hubs and a baby.

I'm just going to call it, 5lbs

As of 8pm-ish last night Madison weighed in at 4lbs 15.4ozs...she is 5lbs to me. She had her last dose of antibiotics lastnight and is on full feeds 38ccs. She has only been taking 10ccs from the bottle the last day or so, so they are giving her some rest and just putting it down the tube. Her PICC line should be coming out today YAY!!! We got a little tour of the CCN (continuing care nursery) and was showed a possible spot for Madison with the best nurses :) so it looks like just a matter of days before she is moved over there. All we have left or should I say all she has left to do is take her full feeds by bottle and we are on our way home...that and I hope they can get her off the oxygen fully.

Friday, November 25, 2011

It's happen....

We got our eviction notice today. We only have 14 days to leave. Even though we called our apartment's voicemail saying we needed to figure something out and never got a response except for our eviction notice. So we owe October & November's rent at $675 so that's a little over $1300 I absolutely don't have to after we got the letter we again left a message saying they can keep last and security as payment and I guess we will leave it at that and my husband,baby (eventually) and I will stay at my parent's tiny apartment and all three of us will sleep in a 2x4. On the upside Miracle Babies sent us a check for for $350 to help with things for Madison so that is awesome...we just won't have any room for much but still good to get formula and other things. So Madison is up to 31ccs (1 ounce and 1cc) she is 4lbs 11ozs and they are lower her canula flow daily and are still upping her feeds 1cc every 6 hours and her new goal is 37ccs. She has a couple days of meds left and once she is at her goal for feeds her PICC line should be out. She had an eye exam and is starting to show some signs of issues with them so she is going to get another check this week. If there are any issues it is an easy fix they say its pretty much like getting lasiks.

Thursday, November 24, 2011

Every 6

After that minor set back we had Madison is back to where she was on her canula a quarter liter 100% oxygen and as of lastnight at 24ccs of formula the goal is 29ccs. They are upping her feeds by 1cc every 6 hours so by tomorrow around 6AM she should be at 29ccs and if that goes well her PICC line should be coming out then she might be moved to CCN. They will watch her feedings and growth after that and see how she does. I got trained on a couple meds of her lastnight and we signed up for a CPR class for her. She is 37 weeks 2 days and at 4lbs 9ozs which means her due date is in 2 weeks and 5 days...I'm really hoping she comes home on or before her due date hopefully off oxygen totally. So far so good.

Monday, November 21, 2011

Definitely an infection

Infection number....yeah I lost count. She was put on two strong antibiotic meds so it seems to be working and lowering her numbers. She was extubated Friday night and was put back on the low flow canula at 1 liter and she is at 26% oxygen the last I've heard. Last time they had her on 100% and was lowering the liters so I'm thinking they may just try and get her to room air (21%) and go from there. They started her feeds again yesterday at 3PM but she back at 5ccs and will hopefuls move more quickly this time. I fed her a 5cc bottle last night and she is still in the big girl bed. So we just really need her feedings to be up there and her gaining weight from them so she can get off her IV (PICC line) and come home. I'm really hoping they will start upping her feedings more quickly since she was doing good at 15ccs. As you know we did have the baby shower for here I will have pictures at some point. It went well but no one that I invited came : / just one friend of mine one family member (besides my parents and my husbands dad and step mom) and the rest were my moms friends...I was kind of dissapointed. Ah well...can't change it.

Thursday, November 17, 2011

Never does it end

Well yesterday was the day of big things. She too two bottles 15ccs, got put in a big girl bed and we were asked if we wanted to be interviewed by The March of Dimes and 22 News. Well I woke up to a missed call...Madison was intubated again. And what's today? Her baby shower...so let's just say we aren't in a good mood. They don't know what's going on, they are taking blood cultures to see if there is a blood infection checking vitals and all that lovely business. Waiting to see if she will Ned a transfusion since her numbers are low, given that information when the lady came in to do a blood gas she took the tube of blood and was done then it fell and blood was everywhere so she had to take more...kind of pissed me off a bit. She doesn't have any to spare really. And to top it all off the camera crew and everyone was coming in and saying oh do you want to move out of the way so the cameras don't get you because "your not the focal point," jee thanks. I would have been if she hadn't gotten sick and trust me with all this shit I've been through you would have had a damn good story.

Tuesday, November 15, 2011

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.

Sunday, November 13, 2011

Moving along

Madison ended up having a bit of a set back last week. They were increasing her feedings and she wasn't pooping so they lowered her feedings again and after 3 days of suppositories in a row she had a huge poop and are increasing her feedings again. She is up to 9.5ccs they are still increasing every day at 1.5ccs. She is up to 3lbs 14.8ounces so about 1 ounce or so from an open crib and 4lbs! The time has come for a baby shower so it is going down Thursday. It still doesn't feel real to me but I'm excited. She is still at a quarter liter on the low flow O2 and 100% oxygen and they took her off her inhaler meds and she is doing good with that.

Tuesday, November 8, 2011

On a happier note

Sorry for the downer. Yesterdays post was supposed to be about Madison but there was someone else on my mind. Miss Madison is 35 weeks today and will be 3 months old on friday. Not sure if I said this before but Madison is no longer in a heat controlled incubator, still in one but not heat controlled. She is 3lbs 10.4ozs and 15 inches long as of yesterday. She doesn't have a feeding tube in her mouth anymore it is down her nose. The nurse yesterday gave her a feeding by bottle! I got there at the right time because after my husband held her it was medication & feed time so I fed her by bottle and it was awesome! She was all swaddled (like a glow worm) and I was feeding her and all of a sudden she squished her hand up out of the blanket to help mommy :) it was adoreable. So here are some pictures from last week and ones from yesterday. ENJOY!









Monday, November 7, 2011

Is it my fault?

I find myself thinking about Dexter over and over. Wondering if I made the right decision. I feel like if I had kept the cerlcage for atleast a few more days there could have been a totally different outcome...maybe he would still be here. Its been happening a lot lately. Replaying his labor and birth. Now that I think about it maybe I should have spoken up more about what I was feeling...even though visually the nurse says I know what someone who is in labor looks like...but I knew I was. Maybe I should have said something more but what did I know it was my first time going through any of that and even still I feel guilty. I miss my sweet boy and seeing Madison growing and how beautiful she is he should be here too. I should have said something more about the contractions or when something felt off before his cord came out. I know when it was Madison's turn I made sure I let someone know about everything but it shouldn't have been at his expense. Should I have had the NICU do more for him even though he wasn't too responsive? Even though they could only get his heartrate to 80bpm with out chest compressions...should I have had them do everything to keep him alive not knowing if he was in a coma or brain dead do to lack of oxygen...I just didn't know what to do and I'm so hurt.

Sunday, November 6, 2011

Every 3 hours

Here is a bit of an update. Madison is doing pretty well she has been pooping atleast once a week on her own and with help. They have increased her feedings to 2ccs every 3 hours again and she seems to be doing a bit better with it this time. Today she is up to 3lbs 10.2ozs! Only 6 ounces away from 4lbs so crazy Haha. Anyway we got out power back yesterday so I have a bit of information for you all :) I finally got to kangaroo on Wednesday and we just swaddled her on Thursday and I held her again and this time the Mr held her for the first time! So sweet! At one day during the week we talked to the doctor saying she liked what she was seeing and Madison sunrises them everyday :) she said their goal is to get her onto the nasal oxygen that she would probably be going home with. She also said if (then) her feeings get to where they should and her pooping on a regular basis she would be ready to be sent to CCN (continuing care nursery) aka on the road to home! She right now is 34 weeks and friday she will be three months old, wow...time does fly. I remember at one point when I was holding her she was hiccuping on me it was so cute!! She makes those baby sounds now...adorable!! I will add updated pictures once I get the computer back up.

Tuesday, November 1, 2011

A lot of changes.

Since the last post as you know Madison did poop so I have quite a bit to catch you all up on. I can't really remember which day things happened on because of the storm that came through Saturday night but here I go. The were going another contrast test, this time through her poor bum and she almost pooped on the doctor, ha! So the next day they started feeding her pedialite so she how she handles it and they did that for a couple days and she ended up pooping sometime after that yay! Just yesterday they started feeding her a bit of my frozen breast milk drops, ha but she's feting some and seems to be doing well. OMG I almost forgot! Before all of this even havened she decided hmm let me pull out my breathing tube again so they but her on the cpap.that looks like subs gear. She had that for a few days maybe a week then moved to the high flow canula again and has been on it for almost three days (as far as I know she is still on it now) so Miss Madison is doing fairly well I'm so glad she's eating. BUT we tried to kangaroo yesterday and well it was nice for about 10-15 minutes and her heart rate kept on dipping : / so I don't know what's up with that but it was freaking me out. I was there for about 4 hours while hubby called to go into work (on our anniversary) yesterday. By the way we haven't has power since Saturday night. So I stayed at the hospital with Madison while he was working and since her heart rate dipped the last time while I was there in the beginning the next 3 hours she was fine so maybe she wasn't ready for it that day but she seemed more stable being back in her incubator.

Wednesday, October 26, 2011

Gestational Age: 33 weeks Adjusted Age: 2 months 1 week and 5 days

We saw Madison a bit late lastnight. Day two of being clothed and looking extra cute. She is up to 2lbs 10ozs just 6ozs away from 3lbs. They took out her little suction tube that goes into her belly to see how it will do since her belly hasn't changed. Her settings have been relatively low yay! 24 oxygen it was lastnight (she was also on room air for a while) the nurse told me and was only on 14 for the vent. So I'm thinking after a bit more time on these settings they may try the switch again to the high flow canula. I also asked about when the would attempt feeding her if not surgery is to happen yet and she said they would probably like to do the contrast test again. So overall she is doing okay and I'm happy with that. My small/big 33 weeker...I can't believe it.

VOTE VOTE: http://photos.parents.com/american-baby-cover-contest-1/43/2011/81

Voting for Madison.

The link changes everyday because her place does. Here is todays link. http://photos.parents.com/american-baby-cover-contest-1/43/2011/91 I will post the new one everyday. Thank you all who have voted and who will vote!

Monday, October 24, 2011

She has done it again

About 45 minutes after we saw Madison today my mom calls me to tell me she pooped! Yay for poops! We are hoping this continues. The nurse told us, when we got there that while she was moving Madison she felt her pass gas awesome! So it seems our little girl is digesting something and moving things a long a bit. She is at 2lbs 9ozs. Just thought I'd share. The nurse even dug it out the trash to show it off, Haha everyone is very proud of her. Oh and she actually had clothes on today :D so cute will get updated pictures posted. Also if you all could. Please vote for Madison in the baby cover contest. She was chosen this week in the running for $250 we could really use! http://photos.parents.com/american-baby-cover-contest-1/43/2011/295

Not now.

So not surgery isn't going to happen. For now atleast. The 4 to 6 weeks after her belly drain was put in would be the 27th but it is called off for now. Last week when I saw her I believe on Monday the nurse was like oh on the 15th or 16th Madison had a large bowel movement...and I was like no one told me! Now that is good news seeing as she hasn't gone in atleast 6 weeks. Well now its obviously have been a bit since then but that is good we are all hoping it will continue that way but who knows. Anyways the surgeons think she is still too small and want to wait it out. Her stomach measurement have been reading at around 24cm as she's been gaining weight. Yesterday she got up to 2lbs 9ozs and her belly measurement was near 21cm which is good too. She is back on low oxygen. Last night while I was there they put her at 23 oxygen and the vent was set at 16. Those were close to the settings she was at when they decided to take out her breathing tube...hopefully she will handle it better when they take it out again. Also I forgot to mention the night before last Madison has been getting even more active with moving her head a lot and pulled out her breathing tube "ah." They tried to keep it out and see how she would do but her heartrate got too low I guess and they re intubated her. They also highered her caffeine they thing she was out growing the smaller dose so this will hopefully help when the time comes. The hubby starts electrical school today which leave me home. So I'm hoping I can get back to sleep for a bit more.

Wednesday, October 19, 2011

On the book for Oct. 27th

Nothing too much has changed since getting her breathing tube put back in. She was really high on the vent a bit lower on oxygen but now its starting to level out and they are weening her again. They are hoping for Oct. 27th as surgery date and earlier if they can get it. I was taking some pictures of her yesterday and she was all looking around and reaching her hand out like she wanted me to touch her. So I did I put my pinky in her little hand and she would squeeze it every now and then which was nice. I liked that she was alert and her eyes were open while she squeezed me. She had a new little hat on and I rubbed her head through the hat and she'd kind of closed her eyes a bit sooo nice. BUT anyways here are a few images for the mind :)







Monday, October 17, 2011

Two missed calls.

The past few days have pretty much blended into each other. I started work on friday. Woke up at 4:45AM to be to work for 6:00AM and got out at 6:30PM. The first couple days weren't so bad but Sunday went on forever. It was so slow and my hands and shoulder were killing me from not doing that work in a long time. Ah well it is over now which leaves me time to update you all. Yesterday while grabbing my phone after waking up it says two missed called and a voicemail, 6 hours ago from no other place but the NICU. I was like ummm. So a doctor left a message saying we had to intubate your daughter again because she needed more support than what the cpap was giving her. It suspected that she may have pneumonia so antibiotics was started the night before last. Ugh as if I need more shit added to Madison's list. All that right before going to work, stressful day much? On top of that I can't remember when but its when I took a pee break I decided to check my phone and guess who it was NICU again so I was really worried. Listen to the message that said "you need to call us back right away," now what would you think in that situation? well my heart stoled and I started shaking. So I call "hi NICU," I say "hi this is Cecelia I was told to call back right away," she says "oh yes! Let me transfer you to so and so," "okay." And she finally picks up "hi so we just needed a consent for blood." Really all that and that couldn't be said in a voicemail... Well after I got out of work we went to go see her I life up the blanket on her incubator as I always do and there it was...something I've never seen before. She has a MASSIVE head! I say to my husband..."is this the wrong baby? Did they switch them?" Haha I was kind of serious but wow two days makes a difference. It really is big it went from a pear to like a small pumpkin size. And her little ears aren't so big and fit nicely with her massive head Haha. She looks so different. I have no clue where her eyebrows went and her forehead grewwww. Haha but wow.

Thursday, October 13, 2011

I'm really not wanting to go back to work tomorrow. I'm not looking forward to people coming up to me asking about my births, what happened, how it happened, how I felt and what happened to Dexter and why...I'm just not ready. Its not like it will be a short shift either...12 hours a day for 3 days straight...maybe it will get easier and maybe some people with realize it wouldn't be appropriate to ask such questions just yet. I'm scared and not so sure I can deal with it yet. What if I really can't handle it, then what? I would be the only source of a bit more income. A lot has changes since leaving work back at the end of June.friends of mine have left due to shift changes and finding new jobs. Its going to be like starting all over again, but in a familiar place. I don't see myself being around people much (like lunch) probably just heat up my food and bring it out to my car, like I used to do at times. Maybe on my lunch break I'll call and check up on Madison. Ugh too much to think about.

Tuesday, October 11, 2011

Shes what!?

900 grams aka 2 lbs! She has gotten to two pounds! I knew I noticed some extra chunkiness on her arms and legs. Shes getting to be a big girl now! So she is still on the nasal oxygen and vent. The brought her vent down to 15 again like last time(when the decided to switch her to just nasal oxygen). Apparently over night her belly got a bit bigger because (they assume) it was filling with air because it has no where to go since she is no longer on the breathing tube. The nurse says she sucked out 9CCs of air yikes! So they put a larger tube in her mouth to her belly to hopefully be more successful at sucking out that yucky stuff. She was very vocal today with the nurse messing with her but didn't peep for me changing her diaper :) Mommy points for that :P I was hoping to hold her today the nurse was too but that want to watch the belly a bit more before they let me again, booo! I did touch her a lot today it was nice. I was lighting rubbing her palm with my hand and every now and them she would clench my finger :D and I was rubbing her leg for a while over the blanket...I think she liked it she didn't destat once :) Well we are bring family there tonight and hopefully things stay the same and or are better...like lower oxygen and talks of taking her off hmmmm.

Monday, October 10, 2011

Caught me off guard a bit.

We went to see Madison for the second time around 7:00PM. It wasn't too eventful the first time we saw her today and she was pretty much out cold so we let her be. Walking in the second time her primary doctor was there and checked her over. Listened to the lungs and felt her belly making sure there isn't too much air getting in since she isn't intubated anymore and all in all he said she looked good. The he goes to the other side presses on something closed the little door and walks away. All of a sudden I hear this cry I look down and its her. No doors are open you could hear her through her incubator. Kinda made me feel sad but its good she can cry poor baby but she got over it quick. She doesn't seem like she will be a big crier just a little here and there and stop.

Extubated...

On purpose thus time. They removed Madison's breathing tube the night before last because she was doing so well in the low setting and her blood gas were coming back great. So they had her on nasal oxygen only and eventually switched her to room air and was doing great. We got to see her little face finally and she is adorable! Unfortunately a little while after we left they had to ad the vent back (still on relatively low setting) because she got tired from doing everything on her own but the good this is she isn't intubated again, its still through her nose. Atleast we know she is capable of doing it, it will just take some getting used to but I am proud of her :) and I'm sure they ail try once again. On a crappy note (for me atleast) I am to return to work on friday...boo! With my nursing hours. Am I a nurse? Nope but I have their hours ha. 6:00AM - 6:00PM friday - Sunday oh joy! But in the end I suppose it would be good for Madison when she comes home being that I will have Monday through Thursday off. I just wish I had more time and we weren't struggling with money issues otherwise I probably wouldn't go back.

Sunday, October 9, 2011

Wow...20,000 views

Well I don't know what's been going on with me, well my uterus lately. I've been cramping on and off for a little over a week. So I think to myself maybe its my period that I never ever get with out medical intervention FINALLY! But then I go to the bathroom there is nothing there or its just a bit of old stuff from the baby having days. I actually did take a "test" yesterday because well...what else could it be? It was negative...bummer but maybe my period is coming along slowly or maybe i'm too early eh who knows but I'm hurting : /

Friday, October 7, 2011

Saturday or Sunday...

The nurse informed me tonight they are thinking of taking out her breathing tube and switching her to nasal oxygen which is completely awesome! She was only on 17 for the vent so I guess she seems to be breathing a lot on her own now and just needing a bit of oxygen support :) the date for the surgery is still unknown and this information came as a shock. I was expecting these changes to only be made after surgery but it seems they are happy with how she is progressing respiratory wise which makes me happy! That was my quick update for the night.

Thursday, October 6, 2011

Two hours.

Well I got a call from my Mom. She had just seen Madison and wanted to see what I was up to (still in bed half awake) and she goes on with the usual lines. "Madison is adoreable and cute and well you know." Of course she is :) so anyway to the point she was talking to the nurse and the nurse told her we could try and kangaroo care again, so I was excited and dragged the hubby out of bed to go. So we went and start walking to her pod and the nurse is like "are you ready?" ...she already knew, ha. I was so nervous. I changed and got in the gown sat in the nice recliner and I started freaking out. The replay of last time was coming back to me. Sitting there just waiting for something to happen...well something did. They placed her on my chest and I held her. I felt her little kicks and her hand kind of grabbing at me and her belly moving with each breath. 30 minutes went by, and that turned in to an hour, and an hour turned in to an hour and a half...and that turned into two hours and it was great. She had only a couple destats and that was it. She had a pretty big airleak and it sounded like snoring but other than that it was very sweet. She'd open her eyes here and there and close them right back up. It was an awesome two hours. I was telling the husband, one day she won't even want me to hold her. BUT I will enjoy it while I can. Oh and he changed her diaper today and I got to also. I finished up baby shower invites and have my registries up. Friends & Family here are the registry links!

Target: http://www.target.com/baby/registry/pFRXvgFZj7vQqOS_-gEKcg
Walmart: https://www.walmart.com/giftregistry/gr_detail.do?registryId=80542771061
Babies R' US: http://www.toysrus.com/registry/search/index.jsp?_flowExecutionKey=_cADBAA69A-F176-F3F3-229F-FC2F5C4EE556_kB530377B-3513-E0F9-4E64-BD968993BD4C&overrideStore=TRUS

Here is the shower invitation design I did. It would look better without the scratched out address but look past it :P
Oh, and Madison & I.





Awaiting surgery date confirmation.

So the doctors and everyone (after the holidays + vacations) they will have a date next Monday. They went down a bit on her setting 28 oxygen and 22 on the vent, awesome! She is about 3 ounces shy of 2LBs. Now it just seems that once the belly is resolved she can't really eat and hopefully grow a lot more and maybe even get her off of the breathing tube and vent.

Tuesday, October 4, 2011

Today would be 30 weeks...

if I were still pregnant that is. I still get those daily emails and weekly notifications every Tuesday reminding me how far along I "should" be. If I were to have the babies now I know they'd be fine...probably only a couple weeks NICU stay, well that won't happen will it.
We saw Madison again lastnight, no eyes this time. She must have been extra tired. We found out the circumference of her head did get bigger and she grew close to 2 inches. From what the doctor said before she was sent out to Boston she was around 600ish grams and now shes 820ish grams so she is growing and the meds seem to be working for her liver. I got to changed her diaper! When I said changed her diaper last time that only meant wiping her and putting the diaper under her and the nurse did the rest. This time the other nurse walked away, I wiped, put the diaper under her fastened one side and ripped off the other fastener...so I got a new diaper and did it all again while sweating from being so nervous. It took wayyy longer than changing a diaper should, haha. My arm was pretty much on her breathing tube and I was trying not to touch her too much. I think it was the most time I spent in here touching her and moving her around a bit and she really didn't destat. After that her O2 started going up...I guess she liked mommy changing her diaper, ha :)
After seeing Madison we had to stop and get soap so we went into CVS and I was saying outloud something along the lines of "Crap I still have the prescription the doctor put in for me, ah well I don't need birthcontrol yet anyway." The doctor wants me to have a couple periods a year since I don't get any and to lower the risk of cervical cancers. And the hubby is like I hope your pregnant (I highly doubt, but wouldn't mind it) and I'm like why? He's like "I want my boy again," kind of sad. I would be extremely suprized if it "could" happen without going through another FET cycle, but again I don't think I would really know if I were.

Monday, October 3, 2011

My mind is going crazy

We ended up seeing Madison pretty late last night after having some family over for dinner. We got there at around 9:45PM. She seems to becoming more alert. She was sleeping then I opened one of the little doors you put yourhand through (as I normally do) and talked to her and she moved around a bit and opened her eyes for me...so cute. And we kept on doing that as we both talked to her it was really sweet :) so no changed really with her. She was on 33 oxygen last night and had 25 for the vent. To kind of switch up things lastnight while I was sleeping I had a really freaky dream about Madison. For some reason she was about the size of a kiwi and was crawling around but she wasn't breathing or something like that and I was like is someone going to do something and they were saying something like do you see how her brain caved in on itself? She isn't responding to the oxygen we are giving her. And I remember holding her trying to give her some suction. Well I guess it wasn't a weird dream but nightmarish...freaky. I hate having dreams related to my babies because earlier in this pregnancy I had dreams about bleeding and they've happened that and I had a dream about having the babies really early and that happened. Ugh. Anyway onto another note we will be going to see her soon so I printed out a mini picture of Dexter to put with her to look at :) along with a picture I took of her to put on the outside. Also yesterday we came up with a baby shower date which will be November 17th since we are hoping she will be home sometime in december around her original due date. I started designing the invites and will post photos :)

Sunday, October 2, 2011

The verdict.

After seeing Madison yesterday and speaking with the nurses and doctor the only option left now is surgery. The contrast still isn't moving and still no poop. I found out yesterday that the IV nutrition they have her on is now messing with her liver so she is taking a new medication for that...the longer she is on that the more it will mess with her so as soon as the surgery is done hopefully they can start feeding her. They wanted to wait 4 - 6 weeks since the drain was put in her belly so the irritation can go down so that brings us to the middle of October. This is going to be her 3rd surgery : / I hope it will be the last and everything goes well after.

Saturday, October 1, 2011

The Scrapbook/Baby book

I figured I would get some pictures flowing I have only the cover and one page almost done just have to add some writing. I do look terrible in these pics BUT they are the only ones we took of the special day. So here they are, enjoy :)

TRANSFER DAY! March 28th 2011
We even have the ultrasound picture of the transfer :) This isn't the orignal I had to copy it and make a smaller print to fit but I'm glad I asked for a picture :)

Friday, September 30, 2011

Wow...

So today started as a nice venture to ihop to get our grub on. We invited the husbands grandmother, mom and brother and the plan after eating was to go visit pretty eyes :) so we both go in first to get an update. Turns out the contrast hasn't moved at all and that means no pooping either so now they are talking surgery. They will reasses that tomorrow, if they want to when, where and how. Then the nurse was talking about kangaroo care and saying how its good for the baby and all and I was like yeah I've heard. So after about 10 minutes she was like I want you to do it and I'm thinking ummm...sure. She is like if you want to we like it to be for an hour so I was like okay, thinking to myself this isn't going to last at all. So they plan was while I'm kangarooing we would let his grandmother in and switch to mom. So I get in my gown walk over and sit. The nurse brings down the side of the incubator picks her up has the other nurse follow her with the wires and the nurse puts her on my chest she was so warm and I could cry. I felt her little hands grabbing at my chest and her little head moving, then as soon as it came I hear she's extubated in a concerned void and I'm like what does that mean they grab her put her in her incubator calls over one of the respiratory people her stats went up and it turns out she wasn't extubated (breathing tube came out). I figured it was that her tube got moved which messed up her stats but it turned out she was good. The experience was nice until my heart sunk. I thought her heart stopped or she wasn't breathing. It was bitter sweet. Well the sweet part comes first :) I' starting a baby book for her I will post pictures eventually. I'm also going to start selling customs baby books on ebay too :)

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...

Wednesday, September 28, 2011

Surgery went well.

Madison did well with the surgery and there were no issues. I kind of feel like the people here really sugar coat what they say. The first night here which was Monday we witnessed her destating a few times. Then yesterday before surgery they were like she had a great night and was awesome whereas our normal hospital nurses would have been like overall she was fine BUT this and this happened...you know? Anyways I'm glad she did good. So after seeing her we decided to check in to the hotel early, shower and take a nap. That nap was a little over two hours Haha. We were supposed to meet up with the hubby's dad and step mom once they got to Boston and we were to meet them at the hospital and they said they were going to treat us to dinner, awesome. Our hotel is about a half hour give or take. So he calls them to see when they are leaving to come or if they are close and it turns out they've already seen Madison. So I was like okay...weren't they supposed to call? We could have been ready so when they got here we could leave. So hubby got up got dressed I stayed in bed a bit longer...the sleep made me extra tired. So we got on the road started driving they call and say well we are going to grab something to eat and the husband hangs up. So I'm like what are we doing then? Call back and see what's going on. So he calls back and his dad says oh it looks like we are going to miss you guys, really? So we wasted gas and time waiting on them when we could have been enjoying the city. They originally said oh we will be there in 3 hours and left much later. I was so pissed you don't even know.

Tuesday, September 27, 2011

The day is here.

Tonight was interesting to say the least. We stayed in the parents sleep "suites?" They weren't very sweet. The room was the size of a closet and a half with a twin bed to share and a nightstand. There was no personal bathroom just literally a room. But anyways Madison was cute :) so after no sleep and tossing and turning and getting up to go to the bathroom at 6:00A after maybe falling asleep around 2AM I get all call from her nurse around 7:35AM saying they will be taking her in for surgery for 8AM. So we rush down there everyone is doing their thing to her and we didn't even get to visit...which was the whole point of us going down there so quick...was very irritating. So they got her all set she went in and was out a little over and hour later. They said everything went well and she did good. So now we are waiting to see her.

Monday, September 26, 2011

Today it happened...

Today, 38 days old before getting moved into the portable incubator.
...i watched as Madison was unplugged, switched to the transportable incubator. I watched as they disconnected her from her vent and oxygen as the rushed to try and hook her back up, but the piping was too short so they had to bag her for a few seconds and I started tearing up. In no time they had her all hooked up again and things were cool. It was right then I decided I wanted to be there with her tonight if I could. It all comes down to the hospital having a room for us tonight with their "one bed" bull. Just a night wouldn't then we would go to the hotel the next two nights. So they took her away and by the time we left the NICU so was nowhere to be found. The nurse I LOVE said when ever she goes to Boston I will go with her (so very sweet of her). She is having surgery and will be out for a couple months so she didn't even need to come in and do this but she did. So we started driving out of the hospital and saw the ambulance she is in start to take off and I started crying a bit not so much as balling but when your eyes start to water and tears fall...that kind of thing. I hurt not being there : /

For those of you who always wondered "What does this Madison look like anyway? Here are a few photos from the beginning until now.
August 19th, 5 hours after birth midnight August 20th


9 days old

12 days old

2 weeks

3 weeks

4 weeks 5 days

 



Sunday, September 25, 2011

Everything changes last minute.

Today is the second time we've had to change our hotel arrangements. First was because we didn't have the the $500+ to pay to stay in a hotel for a week in Boston, to be with Madison. That is every penny we have. So we lowered it to two nights which comes to about $270 and that is a half hour from Boston. The next change was today. We were told yesterday she might not go to Boston on Sunday because they changed the minds about it because of her belly and all that then they got a call from the hospital saying they have no beds. So instead of going up Monday a day after she is there we will go up Tuesday because she is now "supposed" to go Monday but again that can all change again. Another thing that aggravates me, your a "children's" hospital and have a place for parents to stay but can't guarantee the room and the room only has one bed for one of the parents to sleep on...seriously? AND there are near by hotels with a reduced rate for parents/families to stay at but the rooms still even then are $200/night...ridiculous. So now I can only stay a couple nights a half hour away from her because the hospital doesn't have the right set up or can for sure say we have a room. The social worker even called yesterday and was like yeah we had to give your room away, boy was I glad I decided we weren't going up the day she will be going up. This whole thing is really just a big mess. If it were up to me I'd say leave her here until her belly is under control and send her when she is a bit bigger, but really what do I know...

Thursday, September 22, 2011

Off to Boston we go.

It is official Madison will be headed to Boston for her surgery and my husband and I will follow. Supposedly we can stay at the hospital which is good that way we can be with her. She looked to beautiful when we saw her yesterday. We saw so much of her eyes this time and for quite the while.I took one of the best pictures "with my phone" unfortunately...which I could have used my Canon without blinding her with the flash BUT those days will come. My husband changed her diaper this time...was funny to watch. He fed her a bit of colostrum and I fed her the other half...it was weird when I was feeding her, her eyes were open this time and she was looking at me...I never had that before. When the nurse was doing things and getting her situated she was crying :( but without sound because the tube is between her vocal cords...still sad to see. I saw her belly and to my husband and I it looks terrible...to the nurses its a tad bit better? I don't know I just hope the color gets back to normal and it comes down to a more normal size...she has no belly button because of how much it sticks out. But she is more stable now it seems to the meds for the infections seem to be working. There hasn't been a positive blood culture since the 12th. She can tolerate handling better. Her respitory settings are lower than before. Now they seem to be in the 20s and 30s. We are hoping after this surgery she will start to eat and handle it well.

Wednesday, September 21, 2011

Update here!

My husband and I have been sick for a little over a week which means we haven't gotten to visit Madison which is do to the lack of real updates. We are going to see her today but I thought I should update since I just got off the phone with on of her doctors. Respitory wise she is still good, head scans still coming back negative also good. They did remove the drain from her belly and are currently kind of waiting to see with that. They waited a week did a follow up echocardiogram and are still seeing the PDA (murmur) as being a moderate size and also finding a chamber of her heart becoming enlarged because of it. So because of her belly she can't try the final round of medicion they want to send her to boston to surgically ligate it, and well it will have to be done. They figured while she still isn't getting feedings they would take this time to send her out, get it fixed and then try and feed her. I've been told she has grown an inch which is awesome. I wonder if she will look any different since I haven't seen her in a while. There will be more updates to come.

Sunday, September 18, 2011

I do miss it!

I really miss being pregnant and I can't help thinking about our next pregnancy. I never fully got to enjoy this pregnancy at any point because from 16 weeks on every doctor appointment was a constant let down and I knew it was coming. I remembered thinking to myself as I worked overtime one night, I'm not going to be coming back to work...and it was true it was the start of strict bedrest for me. After having my babies and talking to the doctor and him saying "I want to plant the seed about birthcontrol," saying it wouldn't be impossible for me to get pregnant now fairly quickly because I could have a period in a couple weeks. I'm like well I don't get periods ever without being medically induced, so guess what no birth control is happening here I would love to be proved wrong but unfortunetly I doubt I will get pregnant on my own, it would have to take another FET I'm sure. But on the otherhand I always have a glimmer of hope. I was talking to my husband the other day saying if we didn't go through with IVF and FET at all I don't think I would've known I was pregnant, and if we were to get pregnant on our own because of everything that has happened I would be terrified. So the plan would be to check every month ha but then I would drive myself nuts doing that. Its a lose/lose situation really. As for a Madison update...there hasn't been much her once negative yeast culture has come back positive again so they switched her meds back to everyday instead of every other which I don't know why they did that in the first place...whatever. They think the murmur got bigger, oh joy. Her belly is still relatively big and she hasn't pooped on her own since the last time over a week ago. She is no breathing less on her own when she should be breathing a bit more and had to have her settings turned up a bit as of yesterday otherwise she is pretty stable...I really need something to be good that is more consistant.

Thursday, September 15, 2011

A good day, haven't had one of those in a while

Yesterday was good for Madison. Yes she still has the heart and belly issue but overall she seemed god. Her oxygen is still low on the machine awesome. They switched vents and apparently she loves that one. On the only one every breath she took it would shoot in 90 breaths for her which was very high. On this machine I guess she stopped breathing on her own for a bit which they didn't say was bad because she did need some rest. When she does breath on her own it is between the 20s and 40s which is pretty much in normal baby range. Her blood gases where coming back ideal now which really wasn't happening before everything happened so they think between the new vent and her recovering from the infections she seems to be tolerating more. The nurse said she can pretty much do what she needs to do to her leave, come back hours later do what else she has to do and leave again. She says she can pretty much leave her alone. Her belly did go down a tiny bit. Unfortunately we can't go see her because my husband is sick and I may be getting sick also...I'm hoping everything continues in this direction because it looks like a good one.

Wednesday, September 14, 2011

And we wait.

First of all I want to thank you all for your comments, thoughts and prayers. After talking with the doctors to try and understand the situation a bit more with putting the drain in her tummy they did complete their goal of removing the infections from her blood by draining whatever was in there and the proof was in her negative blood cultures. The next goal is to get this belly thing fixed. They did irrigate her belly again and the fluid came out clear, which is good and they are hoping whichever puncture it came out of hopefully has sealed itself up. They also made sure I knew that before she gets better it will get worse. So I'm hoping the whole belly looking worse is it. The nurse and doctors also failed to let my husband and I know that they hear the heart murmur again...I wish I would've known then. They can't do one more round of meds or surgery on it because of the state she is in with her belly. It seems once there are somethings out of the equation others seem to work their way in. I also found out while her oxygen settings are low her vent is high...had no clue about that. The important thing is with all this she hasn't crashed or become horribly visibly sick which is a good sign, I will hold on to that. So we wait and hope the belly will fix itself.

Tuesday, September 13, 2011

Now would be the time for a miracle.

The central line ended up getting put in, good. The draining helped with the infections, good. The belly got bigger and is even more discolored then before...horribly bad. She is stable through all this but all those good things mean nothing if she is still very very sick and no one knows what's going on. Her nurse even said she doesn't know is she can come back from this...I don't know what I'm going to do...what can I do. She's gone this long so she has to make it. If you covered her belly you wouldn't even know she were sick otherwise. I just hope if the surgeons decide to go ahead with exploratory surgery they find something they can fix and Madison make it through. We have plans for her to come home. We have plans of being her mommy and daddy...to show her the world and teach her how to be a good person...I want that chance. I'm writing this as we drive to the hospital to meet with her doctor.

Monday, September 12, 2011

12 days of infection...

and no change. We just got off the phone with the surgeon and her belly and infections aren't getting any better. From the ultrasounds they can't really see any free fluid so they don't want to risk it with exploratory surgery on her. Based on what they "think" they would rather put a little hole in her belly with a drain to see if anything comes out. They "think" she may have a hole in her intestines which may be causing a build up which is keeping her blood cultures positive and not letting the antibiotics do their job. So we okayed that procedure. They did it and she did well with it. With the drain they did get a lot of discharge and pus which could be a good thing, since really nothing is supposed to be in there. That could be the source of her infections. They switched antibiotics and are hoping she will start getting negative blood cultures since they were able to drain some stuff. Her belly did go down 1cm afterwards which is good. They called us early today as ask permission to bring Madison to the OR to try and get a more permanent IV placed because all of her other IVs that have been placed have blown or just aren't good and don't last very long. I was hoping she got her Daddy's veins, but she got mine instead. So we agreed to that after the risks were told...possible punctured lung...blood cut off from her arm but she needs a way to get the meds she needs. After a couple hours they called back and said we we want something more temporary because her blood culture is still positive and we don't want to keep housing the bacteria in the line because then we would be going in circles, which is true...I'd rather if possible her culture be negative before anything more permanent is introduced into her blood. So that is where we stand.

Friday, September 9, 2011

Possible exploratory surgery...

I can't remember if I posted about how Madison's tummy is extended and they found a possible fungal ball or cyst by her liver BUT her blood culture has been positive for 2 different bacterial infections and she's been on the best antibiotics for it and there hasn't been a change. On top of that she hasn't pooped in over a week so if something doesn't happen by Monday they are thinking about doing exploratory surgery to see if they can find something they could fix. They think it could be a bowel infection. The positive for today she is still stable and pooped on her own *yay* So hopefully things will be looking up now. Meanwhile they are waiting on results from her belly scan earlier to see if things have changed and are looking into maybe a different antibiotic that could help. I did decide today after 3 weeks of trying, that this breast feeding well pumping thing just wasn't working out for me. I have about 70 bottles at the hospital with my drops in them and that should hold her off for a little since she isn't getting any feeds now and when she does they will be extremely tiny so they would work out for her in the beginning. I just can't do it and I do feel bad for giving up but its so stressful for me. I would have to run home every two hours to get nothing in return for my time and effort. I feel like it would be a different story like I said before having the baby with me. So next pregnancy (that will be fullterm) I will try again and hope for a different outcome.

Our final Goodbye

Today was the day. It was set. Friday September 9th @ 11:00am would be the time we would say our last goodbye. I woke up at 7:00am to my antibiotic pill alarm and couldn't get back to sleep after taking it. The time of our actual wake up was 8:30am, the time I woke up my husband. We started the day with a nice shower, waited for my parents to get here to start food for after the service and got ready. My husband started writing a poem for Dexter and let me tell you reading it almost made me cry, but I couldn"t I just did my make up and finished getting ready. Once my parents were here we waited for other family to get here so we could follow each other to the cemetery. 10:45am came along and it was time to go. Since it wasn't a "normal" funeral we didn't get those flags everyone gets to put on their cars to be able to go through red lights and all, we got the frustration of trying to keep up with everyone and stay together. Luckily the cemetery isn't too far from our place. So we took the right into the cemetery then took a right, and another left and I see this white tiny box all propped up, and my eyes start swelling with tears because that's him right there in the box all out for everyone to see. This is the last time he would be around us physically. My mom brought with her butterflies to let go along with a few balloons and roses for myself, my mom, dad and my husband. The funeral director asks us if we want to be here for the burial. Of course I say yes...If I weren't it wouldn't feel finalized to me. So it begins with my husband reading the poem and it makes everyone bawl. It was truely a great poem...publish worthy. He made it so it sounded like Dexter telling everyone how he feels and that things are fine. After that we released the butterflies. My butterfly didn't want to leave but eventually did. We released the balloons. I didn't say anything aloud but did in my head while releasing the butterfly and balloon. My husband actually was given the chance to but Dexter into the grave. I told him he should put his poem in the grave with Dexter so he dropped it in and we each dropped our red roses in and we watched as the grave was covered with dirt and grass was put back over. Now all we are waiting for is his stone to be made and put on his grave. I'm glad my baby boy can now rest and be at peace. Dexter Rylan will be forever missed.