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.

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.

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.

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.

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.

If finally hit me last night...

After weeks of just going and focusing on other things, worrying about this and that. I'm burying my child. The first I gave birth to, who was alive...who was put through hell. When I finally had that chance to lay down to try and get to sleep that's what flooded my mind. I started crying. Those days in labor which I had no clue about really. His prolapsed cord, pushing through no contractions and him actually being born. Seeing him on ultrasound that last time to check progress with my pushing. NICU grabbing him to try and stabilize him to bring him upstairs to the NICU and me hearing how his heartrate is low and how it keeps dropping. I knew as soon as he came out I would loose him. And when he was born I started bawling...because that was it. NICU came down a short time later and said this would be the time to pull support because he isn't responding well at all. So we went up to see him, we decided and that was that. We held him, family held him and he was gone. They told us he was pretty much in a coma...he didn't respond to anything physically. He was born August 16th at 2:48PM and was gone by 5:20PM. I remember having him brought to our room and just having him lay next to me on the bed...he looked so sweet and peaceful. He looked so much like my husband. I can say, I am glad he held out as long as he could inside me to give his sister a chance at life, and I know he's watching over us all.