NICU - Day 16 (Part I)

Wow. The last few days have been crazy. Migraines, Mastitis, NEC, oh my. I'm pretty sure I've aged a bunch of years. It is a very good thing that I had low blood pressure when this started.

I decided to post because sleep and I currently aren't seeing each other anymore. I woke up at 1 pm on Friday and since then have slept less than four hours. Everyone I talk to says I should eat, sleep, pump and spend time with Maddie (and since the first three things can be done in her room, the fourth could be continuous). In reality, sleep is a great thing, that I'm sure I will return to enjoying someday, but I have a distinct feeling that it won't be something I will be relaxed enough to do without drugs for a long while in more than 1-2 hour shifts. I feel like I'm doing fairly well considering the lack of sleep and stress of the last few days. (Partially thanks to Diet Mountain Dew!)

I'm not going to lie. Yesterday (Saturday) was the worst day of my life. There is nothing like being all cuddled up in your bed and getting a phone call that your daughter's life is in danger (I'm assuming getting a phone call of your son's life being in danger would be equally devastating). I am grateful that I was such a short distance away and could be here and healthy all day yesterday for Madelyn. There were several times that I thought we were going to lose her. I considered posting her "before" pictures from surgery on here, but I don't really want people seeing how terrible she looked. In reality, the pictures I took were between her two surgeries and she still looked pretty scary. Renae posted yesterday that the doctor described it as living "minute to minute" with her yesterday and we certainly felt it. I believe Renae claimed to have checked the clock several million times between 11:45 and 11:55 yesterday morning while we awaited her surgery. I'm sure my count was right up there with hers. I go through periods where I feel fine, other times I don't really want to talk about it and just want to be distracted, and then the times when I sob and no one can understand a word I say (a lot of it is irrational anyway due to sleep deprivation, so that is probably best).

I have decided though that Maddie and I have faced steeper odds together. At our 12:45 am pep talk this morning, we talked (okay I talked, as she is still pretty drugged up and does not even have energy yet to open her eyes) about our joint determination that we have shown over the last six months. From being told that we would both be dead to our successful delivery and her first amazing 14 days in the NICU, we pretty much gave the finger to the original residents that looked at me stupified when I told them I wasn't terminating way back in June (which by the way feels light years ago). It has been a long time since I was a quiet, shy little girl and I don't think I can ever go back to that. I am grateful that Madelyn is already the girl I didn't become until freshman year of high school - a take no prisoners, stubborn, spunky and fiesty little girl who will except nothing but the best from those around her. We don't accept excuses. We will be heard. Dan is a big Katy Perry fan (he does not read the blog, so please don't tell him that I outed him on this!) and I sort of think her song "Roar" will be our theme song for Maddie's fight. She refuses to go down without a fight. For those unaware of the song, here is the chorus:

I got the eye of the tiger, a fighter, dancing through the fire

'Cause I am a champion and you're going to hear me roar

Louder, louder than a lion

'Cause I am a champion and you're going to hear me roar

(it is then followed by many "oh"s which I find less powerful for this comparison)

Maddie would probably be roaring now if she weren't on so many medications to keep her relaxed and calm and a ventilator that keeps her from telling people how she's feeling with her cat (or tiger, or lion) cries. Maddie and I have decided that we are the Derek Jeter and Joe Girardi of our Yankees team of doctors. She's the captain and I'm the manager. We will not go down without a fight. Sure, she has had a big setback with this diagnosis, but we are not ready to quit. We will continue to bring on new players to our team, which we will be meeting over the next few days, weeks and months and we will win this fight, if it is all that we have left. We are far from quitters and we are so, so, happy to have all of you as our fans (because, honestly, even people who hate the Yankees often still like Derek Jeter or at least respect what an awesome person he is). Maybe someday we will meet our two heroes: Derek Jeter and Ellen and we will be able to tell them how they got us through this tough fight through encouragement and laughter. Right now, we are focused on an hour to hour basis, but I truly believe that we can overcome this because we are two of the most stubborn Irish-German girls you will ever meet.

We continue to accept the well wishes, good thoughts and prayers from everyone. Without all of you, this journey would be millions of times harder. Please continue with the comments, emails, and texts. We may not respond, but know that we are reading and appreciating them.

And for those that are worried about my not eating regularly enough, this entry was written from the Marketplace at UIHC where I ate a pretty unhealthy, but much needed middle-of-the-night snack.