Thank you

Some of you may know already, but many of you don't; Stella died last evening from complications in the NICU. I don't want to get really specific, but it was unexpected, sudden, and quick, she did not suffer long. We had a few moments with her before she passed to tell her how much we love her. We appreciate all of your prayers, thoughts, gifts, and words; they really have helped us so far and we really need them still as we are in an emotional state I really can't describe in words at the moment.
We will be here in Louisville until Wednesday handling arrangements and Shanna's care and then will be returning to Murray to try and regroup some. We have decided the best thing for us to do is have a service in Pennsylvania in a few weeks toward the end of the month with her ashes. We'll have more specifics on that later, but most likely it will be at St. Bruno Catholic Church in Greensburg (the same place as our marriage) on 2-26 (or some day near that time).
Many of you have already asked about donations. Shanna and I would like to help those that helped us. The Neonatal Intensive Care Unit (NICU) at Norton Hospital/Kosair Children's provided us with the finest care that is humanly possible. We would like any donations to be sent their way. Here is an online form if you are interested. Thank you. Perhaps your funding may make the difference between parents like us going home with their child instead of emotional pain and a hollow feeling.
One way to look at our loss is to ask "why" and have anger and question our faith. We are certainly having those moments. However, sometimes I have moments where I just believe God took her to be an angel. For me, personally, the one thing that has given me the most comfort came from Stella's Neonatologist, Dr. Cohen, who noted that he learned a new protocol in critical situations for micro-preemies Stella's size. If he can use it to save babies in the future, or if he can share it with colleagues who can save children, Stella may make more of an impact in her 5 days than most of us do in our entire lives. He then noted how 16 years ago when he began, certain classes of premature children were pretty much earmarked for death. Today, these same babies now survive in a large majority of cases. What he is saying, and what I believe too, is that she did not die in vain. Her pain and passing help us learn more.
Stella will also not die in vain if we never quit. Ever, at anything. She sure didn't. It truly was a miracle we ever got to meet her. We were told (indirectly) three times she wouldn't make it. Hey, she didn't...but she proved them wrong with her will to live well beyond expectations. That is what we all need to remember here. She lived a great 5 days and was not suffering. She was spunky and funny and was the star of the hospital. We both truly bonded with her. Nearly everyone reading this loved and prayed for her. She was taken from us for a reason, I just have to believe that. I don't know why, it makes me angry, it makes me cry, but there is a reason she couldn't be on Earth with us. None of us will ever know why. I am just going to go with the belief that she left to be with God, to be part of a greater place than we have here.
We love you all. Thank you so much.

The real work begins

I'd like to first start by quickly talking about our experience in Pittsburgh. I would absolutely like to say that West Penn is an amazing hospital - they saved my brother's life 27 years ago after he had a stroke. When we talk about what happened in Pittsburgh, we do not want to lump a whole hospital's staff together when really it was a feeling and an attitude about/from ONE doctor. I was given this doctor's name from the labor/delivery at West Penn as been the "high risk" doctor there. From the start the office staff seemed hassled about scheduling my appointment and the urgency that we were stressing. However, I was schedule, I traveled to Pittsburgh, and my mom and Dave took me to my appointment. The ultrasound tech was very nice and she did an excellent job. Then the doctor came in... he seemed less than interested in my reasoning for wanting to come to Pittsburgh and even less interested in what any other doctors had said. He spent at least 20-25 minutes ultrasounding me himself. This whole time he did not speak unless my mom or I asked him a question. When he was finished we went into an office so he could talk to us. I don't want to rehash all the details of the time that we spent in the office, but the bottom line is -- he did NOT want to take any recommendations from my doctor in Louisville, he had no interest in monitoring me or providing me with any kids of medications (including steroids that will boost her lung development), he told me to go home and if I want I can come back in in a week to see if her heart is still beating. Yes, that is why I left Pittsburgh in such a rush! He had no interest in being proactive in his approach to save my daughter.

BACK TO LOUISVILLE

John imedietly called my Perinatologist's office in Louisville and gave him a breif summary of what the doctor in Pittsburgh had told us. He reinforced his proactive attitude and his willingness to fight for Stella. He got us in for the next day, so he could get his own measurements of her (a week after the original appointment) and then he reported that he was going to admit me. I know that many of this is a repeat of what John had already posted, but I wanted to be clear about our whole approach. It was ONE doctor in Pittsburgh, but even though there are more amazing doctors at different hospitals our urgency to get Stella the correct care brought us back to Louisville. Wonderful, amazing, Janice road warrior drove me to Louisville where I saw the doctor and was admitted last night.

FINALLY WHERE WE NEED TO BE

Dr. P was very clear with us that we are not to expect the best, as her condition is very serious, but that we can certainly wish, hope, and especially pray for the best because that is what he is going to do. Stella has severe inter-uterine growth restriction. There are little ones with IUGR who are only about 2 weeks behind in growth and this happened in the early 30 weeks. These guys may be born about 5 weeks early but weigh as much as 4 or 5 lbs. My little one is 4 weeks behind and started her growth restriction before 20 weeks (which is really early). She will most likely be delievered (by C-section) between 26-27 weeks (meaning her development will be that of a 22-23 week old and we will be lucky if she is a pound).


Do we need a miracle? YES But God performs the most awesome miracles everyday! Why would we ever count my little Stella out as a possible miracle baby? We aren't!

SO WHAT ARE YOU DOING, SHANNA?

Last night we got some disturbing news from Dr. P, that her heartbeat is bouncing up and down indicating that the cord blood flow may be being restricted. If this continues we would have to deliver, otherwise she will suffocate in there. At 10oz she would most likely not survive and pass fairly quickly if we took her now. He put me on constant monitoring, which has proved difficult because not only is she so small and it's hard to catch her heartbeat but she is a mover and shaker! She likes to bounce all over the place hardly staying in one place for long. Anyway, after only sleeping an hour at a time, in a very uncomfortable position doing my best not to move it was reported to me this morning by my nurse that her heartbeat measured steady most of the night. We won't know until Dr. P comes to check in how good of a sign this really is. I've also had two steroid shots, antibiotics, and a constant IV fluids drip.

I'm still on constant monitoring and for most of the morning I was in a position where I couldn't do anything but stare at the tv and not move even my arms. The nurse and I recently got her and I in a position where we can keep her on monitor and I can type on the computer! :)

I think that's all I got in me today. Again THANK YOU for the support and prayers. This is so amazingly difficult that I could never fathom in my life that I would have to go through this!

Love,
Shanna and beautiful Stella

PS - I'm in Norton Hospital in Louisville KY... I keep forgetting my room number but I'll get it up here.