One of those bad days they tell you about

Today started as it normally would well my "now" normal life. I got up around 9am to be ready for the visiting nurse. So we decided after that was done we'd go for a drive maybe visit my mom or my husband's grandmother and wait to see Madison because my moms close friend, well kind of a family friend wanted to see her around 5pm. So we visited his grandmother she took us to breakfast and we visited with her a bit. We came home I pumped then we went out again grabbed some bedding for our ferret. We went back home and I pumped again (not getting much milk in so im trying to help it along). Then it was about the time to go see Madison. So we got there and my parents were there seeing her so they came out and the lady at the front desk was like let me check with her nurse. She came back and was like go wash up and I will page the doctor because I believe she wanted to talk with you. So immediately we were like well that's not good. So we go in and the nurse informs us that her morning wasn't great at all. There was suspicion of infection like you may know. So they sent out a blood culture which came back positive for yeast in her blood, so they removed her PICC line which really was needed and are trying to keep the two IVs they have in her hands going as long as they can, because like mommy Madison has no veins either. So that equals a scary big deal for a baby that small. So they started her on the meds needed to try and kill the bacterial infection and a fungal infection. So they will do a culture everyday to figure out if it is a bacterial or fungal infection and choose which direction to go in. They said it takes a while to kill an infection like this up to 4 weeks. The nurse says she's seen babies come out of this and die because of this but because Madison is her normal feisty self they don't see it really messing with her so they are hoping they caught it early enough to treat it. So she was up and down with her oxygen and respirator and for some reason they decided to try a different machine on her and apparently she likes it alot. Instead of her oxygen being at 80% to 100% it is at 35% which is great. Oh oh oh! And I saw my babies eyes! So precious I almost cried everytime she opened them. Now it wasn't full on eyeballs but she open her eyelids just a bit so I can see them sparkle :) and that was the highlight of my day.

So yesterday after countless calls to see my MFM doctor to take a look at my incision and change the dressing a nurse finally got in touch with me after the office hours were over (thanks a whole lot) what she told me was well I didn't get the messages we can't see you today you will have to make an appointment for tomorrow um no. I've had these openings packed for over 24 hours and I don't think they need to be in any longer. So she says well let me call some doctor that is there to see what he says. (he's the one who had me go to the trauma place the night before) so I hang up with her. Then I get a call from a different nurse I tell her the story and she's like well you need to be seen today (thank god) so she says go into the office. After I hang up with her the other nurse calls back and tells me to go back to the trauma area and I tell her are you sure...I just talked to so and so...she says yes there is no room so as I'm walking out the door the proactive nurse calls back and like she said go to the office not the trauma area (thank you) so I do. They don't have any room but do fit me in and use an ultrasound room which is cool. So we go in there she tells me it doesn't look like infection but the drainage does need to come out. So she cleans me up packs the parts of the incision that are open and that kills like usual. After she tells me we Ned to set up appointments with a visiting nurse because it does have to be cared for so after calling a bunch of people who don't do "postpartum" visits, which by the way wound care has nothing to wound care. But anyways he finally found a company that made an acception to come help me out yay! So after all that we saw Madison some positive news is they said he murmur is now considered small and that they won't do anymore for it unless there is a need for it. So it needs to stay this way. Otherwise she's been up and down on her oxygen and respirator like usual. She blood gases still iffy but what can you do. She still looks sweet :) today is actually the first day im fully on my feet. The only downfall is my back is killing me. I also had my first visit with the nurse today she was really nice and actually came in hugged me...really sweet.

The hurricane, Incision, Hospital & Madison

Well I woke up this morning to pee as usual still having a hard time getting out of bed but that is usual now. I didn't take any pain meds and it was well over the 6 hours. Anyway I went to the bathroom pulled down those horrid face hospital underwear removed the pad that covered my incision and well it wasn't pretty it had a lot more stuff on it in an area I thought was good. So I peed stood up put a new pad over it and suddenly I felt a warm sensation and some salmonish discharge came pouring out onto the floor so I immediately put more pressure on it and was kind of in a freak out mode. Woke up my husband told him what happen and of course he's like oh its probably nothing (because he's freaking out about going out in the hurricane, tropical storm whatever it is) but it was serious enough for me. He's the one who had to clean up the mess on the floor. So we call the on call doctor again he says you can come in or wait like he did yesterday so today I felt I couldn't wait until Monday. So we go in (they said we were expecting you) ha yeah. So I go in get changed into the johnny and the nurse looks at it and says oh you do have a lot going on there so I'm like yeah its gross. I can't really see the incision myself so I have to rely on others. So the doctor comes in and looks at it and agrees with what the nurse says. She takes some q tips and checks the incision so see what parts look good and where the draining is coming from. She says some parts need to be packed in order to heal. So where there was a lot of drainage she kind of clears it with a q tip and it hurts so bad and this is coming from someone with an oddly high pain tolerance. She says she sees some redness and there is obviously pain there so she packs that first and that's when the tears start flooding it was terrible. The other ones I didn't notice but man that was bad. So she sends me home with a different pain med and antibiotics to take for 2 weeks and some hospital dressing which im sure work a hell. Of a lot better than the pads to cover it. So after that we figure since we are at the hospital already we would go up to the NICU to see our Madison. They ended up taking the little tent off her in the incubator now she is just in the incubator no extra coverings. The nurse did say she had a bad morning but she is stable now and has started her second round of meds to get rid of that murmur. She looked fine I hate how they put in the breathing tube with my babies mouth all stretched...ah well. It is day number 9 Madison has been NICU bound and counting.

Always something

Today hasn't been too great of a day I planned to go see Madison but one area near my incision from the c section has been killing getting up or moving off and on. So I thought since I haven't been able to shave the hair is getting long and maybe the strips I have along the incision may be pulling at the hair. So I decided to shower to make me feel better so it doesn't feel too tight and it does. But then I put my hand in the area and feel something gooey. I haven't had anything happen like that and it is day 8 since the surgery so I have no clue what it is or if it is normal. There is absolutely no smell to it at first it looked a little orangey maybe a couple yellow areas around the orange stuff. So then I put a paper towel there for a bit again and it was pink salmonish with a speck of goo. So I called up the on call doctor and as he said its hard for me to say without seeing it. (Apparently he's tried to get intouch with me for hours, damn phone) just heard from him now. So he said to go to Womens & Infants trauma tomorrow because its getting late tonight or even wait until Monday, but if I'm really concerned to go anytime. So I think I may wait it out until Monday. I feel bad not seeing my baby though : / I really feel robbed of my pregnancy experience there was never a time where I could be happy because everything went wrong. I never got to have that baby belly or wear maternity clothes. I never got to have my own baby shower before the babies came. There was never any reassurance things would be okay I was worried every second and that will continue until Madison comes home then there are other things to worry about.

A bit of a scare

Went to go see Madison around 2:00pm today and we got the semi good news about the murmur. It got smaller from the first round of meds but is still there. So they started a second round which we hope will do the job if not we have another round to try then there will be talk of surgery which I hope doesn't need to happen. So when the murmur DOES close it should help with her lungs and they should be able to ween her off the respirator and oxygen a bit better. When I went in I was told they were able to lower her settings a bit which is good so about 10 minutes after hearing that we were told her blood gas wasn't too good (which is normal) so they would have to higher it again but it wasn't d one soon enough. We were standing there when her heart rate dropped significantly and I was on the verge of tears the nurse just walked away and I was begging my husband to get someone and she walked back over. I saw her heart rate go from 150 to the low 100s even dipping to the 70s. The nurse had to go in and reposition her a bit and move her and it took forever but she did get back up where she should. I was just thinking to myself we got this far and I couldn't handle loosing her too. But on a positive note she had another head ultrasound and it came back negative. She is still having a bit of blood in her tube but they said her blood cloying isn't an issue and its not bothering her so that is okay. We still haven't found out much about the mysterious infection that is or isn't...they did put in her PICC line and are going to remove the umbilical cord lines so that infection can be reduced in that area a whole lot. I didn't get to see her eyes earlier being that they were covered and she was under her light so we will be going again in a few hours so I can see what I've been missing.

how are you feeling losing one baby and having the other in the NICU?

My answer remains the same. Nothing. I'm still in shock and it doesn't feel real. And since I've had the time to think about I really hadn't had much time to grieve for Dexter being that I was trying to stay positive for Madison and it was really only one day I had to cry my eyes out and everything was then focused on her and trying to carry her a bit longer so she would have a chance. And then it was about her for the remaining 2 days until she came and since then it has been all about her. I mean sure we have to figure out when his funeral will be and get his stone situated but I'm really numb to it all. I don't know if I should be feeling this way. My mom keeps saying you know if you need someone to talk to or want to talk I'm here but I don't have anything to say...she says she doesn't want me to hold it in...but I have no clue where "it" is going I just don't know. I'm not depressed I don't think I'm just going about my day each and every day.

On to day 6 of being in the outside world

We went to go see Madison today I didn't go see Madison for the second times yesterday because I think I may have been out too much and was in a lot of pain, but anyways we saw her today and she has the usual ups and downs of oxygen. I dropped of milk they will freeze for her until she can eat it. She completed her medication for the heart murmur thing and she had her echocardiogram so we will have to call for the results. The nurse did say the doctor listened to her heart and still thinks he can hear the large murmur. So hopefully the meds will eventually take effect so she doesn't have to go through surgery.