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.

An update from the mama

Stella is three days old. If I had had a full term baby with a C-Section I would have gone home - with my baby today. That is a difficult realization. I will be discharged tomorrow and I will walk outside for the first time in two weeks and four days. John has already moved most of my things to the Ronald McDonald house, but I will finally sleep somewhere other than a hospital. My baby girl, however will not get to walk outside with me...

Stella's day started off a little rocky - her nurse was noticing a heart arithmea and contacted her doctor. Her doctor suspected that it could be from the IV in her belly button pushing on or just being too close to her heart. The IV was taken out and she was monitored for a few hours. Within an hour or two her heart returned to completely normal rhythm.

At noon today Miss Stella Mae was baptized by the Chaplin that was in the OR during her birth. She read a beautiful Psalm and blessed my baby girl. Stella was also given a pink rosary, a prayer shawl (her second in as many days) and a beautiful blanket by the Chaplin. I whispered to my angel that she will be sure to still have the chance to wear a beautiful white christening gown as soon as she is big enough!

Stella had her second head ultrasound today and we were disappointed to find that she does have some bleeding in her brain. There are four levels of brain bleeding in preemies... 1 and 2 are non threatening bleeds which are almost expected in very small preemies. Grade 3 bleeds are serious and cause concern, they can also result in developmental disabilities. Grade 4 bleeds carry a 100% chance of developmental disabilities most likely severe and also a fairly high risk of death. **Stella's bleed is a grade 2** Please pray that it does not get any worse, there is a risk of that.

Okay on to the MEDICAL GOOD NEWS: We all know that she has been pooing since night ONE... We needed to make sure that her heart artery was closed before we could talk about feeding her. Yesterday, we found out that it is closed. However, they still were only talking about feeding her. Today, she pooped a big giant important poop. I can't remember exactly what this poop is called but it is an important one. Her doctor said that because of this awesome poop she will start on my breast milk TOMORROW! Okay so we are talking like the smallest amount of milk in the world (like a drop and hour) but it will be so very important to her!

Mama got to hold her baby tonight for the first time! She also got to change her diaper, take her temp, and swab out her mouth. These things (among other more professional things) happen every four hours. It is called her "four hour check" and the nurses are letting us start to help with it. The reason I was able to hold my girl tonight is because she decided that she was going to pee when I had her diaper off. This of course got things all wet on her little pad. The nurse picked her up and handed her to me - I held her while the nurse changed her pad. It was only for a few seconds, but they were the best seconds of my life.

FAMILY VISITS
Grammy and Uncle Dick left to go back to PA today and made it home safely. There are not enough words to describe how awesome it was to have them here! I don't think I could have done this without my momma. Now Pap and Grandma Pat got here this afternoon - also great to have my daddy here now.

MAMA and DADDY
Mama is going to be discharged tomorrow and is eagerly anticipating being able to spend the night in Stella's room. The Ronald McDonald house will be our home until Stella can come back to Murray with us. Daddy is loving spending time with his daughter and will get a chance to do the midnight diaper change tonight! :)

Day 3 Update

Boring, and boring is great :-)
She is still stable and doing good. She was fussed with some and got a new IV in her belly button. Adding to the good news train, we found out that her ductus venosus is closed (yes, its wikipedia, whatever). This is a good sign as they would have to close it with a procedure should it not close on its own after birth. It is possible that it still may open, but this is a great thing. The reason this is so good is that she may able to take minuscule amounts of mom's milk in and digest them. The contents of mom's milk are like gold to her and digestive system and growth (0bviously). If we can do this, its a big step for sure.
As Shanna just said, its almost like its going to be hard when something bad does happen. But we are just enjoying the good right now. Other good things are that Shanna is moving around with just a few rails to support. She'll be discharged Saturday, if nothing else arises. This is amazing considering my wife did have a serious c-section with lots of incision and moving things around. Shes really doing great and feels much better :-)
We are all just sitting here enjoying our little miracle. Good night :-)

Day 2 Update

Hey everyone,
Sorry for the delayed Stella update (mom and dad updates below this)...dad slept all day! First thing first, Stella is not only alive, but thriving at this point. Huge disclaimer: Premature babies typically go through what the doctors label a "honeymoon phase". Like all humans, babies can run on adrenaline. Of course, stress like the premature birthing can cause a baby to come out roaring and then settle down.
Now that the disclaimer is done...our girl is doing great, she really is a blessing from the Lord. Here are the highlights from today:
(1) No brain bleeding. This is massively positive. She is still at risk for this (especially in the first 10 days), but most brain hemorrhaging occurs in the first three days. This is great news.
(2) She is doing a majority of breathing on her own (!!!). Infact, the staff is considering removing her breathing tubes for the moment (knowing that she will most likely need it later on). Removing the tubes from her tiny body helps avoid some scarring.
(3) Her "pick" line was put in today. This is like a central IV line that gives her what she needs medically. This was a big technical hurdle because of the size of her veins and arteries.
(4) She is full of spunk. Generally moving around, doing funny things (biting respiratory therapists finger while in her mouth, sucking her thumb, pulling her temperature monitor off her belly regularly). She is developing quite a reputation with the NICU Nurses for her spunk and fight (of course)
Lowlights from today:
None, really. Her biggest challenge remains blood. She needs it transfused every day because she needs lab work done. The lab work shows blood platelets are low, her tiny veins and body really aren't allowing her to produce her own blood. Compared to the challenges of internal or brain bleeding, this is less serious. Of course, she risks getting infections and things from the new blood products, but this is being managed and is under control for now.
It is super important to remember this thing can go sideways at any time...we still need your prayers, we still are going to have some scares for sure. One thing is clear, we have been blessed with a miracle and she could not be off to a better start. Lets just enjoy this today and hope for the best tomorrow.
Below are some videos I shot with my phone. Thank you all so much for the overwhelming support. I simply am having a hard time getting back to you all individually, so please don't take it as a slight.
http://www.youtube.com/watch?v=dvZv4axFqcw (Stella's Birth Time)
http://www.youtube.com/watch?v=VcQJHenAiMg (Stella meets mama)
http://www.youtube.com/watch?v=ZwlNJ1JLly4 (just moving around)
http://www.youtube.com/watch?v=6KhKMsWPDRQ (Holding hands again)

MOM UPDATE

Lost in all of this is the fact that my wonderful wife went through major surgery yesterday. C-sections are tough to begin with, but she had to have an especially involved one. She's struggling with the pain some, but is walking some today with the wheelchair to support her. All of her IV's are out, and she is doing ok. Ok because of course it is hard to go through this and it is hard because she no longer has Stella inside of her. But she is recovering and remains overwhelmed and overjoyed with the support provided to her by family, friends, colleagues and many wonderful people who barely know us :-)

DAD UPDATE

I get the lucky break in all of this not having to go through surgeries and things. However, I did have some rough moments too, but feel great now. Toughest thing, hands down, was the 2-3 nights in a row sleeping on hospital chairs. I awoke to some unreal neck pain and then went back to the room at the Ronald McDonald House and slept all day pretty much. A shower, a cup of coffee and some rest have me recharged...of course its 9:30 and I feel like I can run through a brick wall. I remain overjoyed by our blessings and all of the support. I especially thank my wife for her character and strength, and for giving me the greatest moment of my life yesterday, when I reached into Stella and she immediately grabbed my index finger with her whole hand and held on tight. It was sent from heaven.

Thank you all so much

Birth Day

Without a doubt, the most insane day of my life. I can only imagine how Shanna feels.
In case you haven't heard yet, Stella Mae Spinda was born at 10:27 AM today via C-Section. At the moment, she is in the Neonatal ICU and is stable, yet very critical. The next 24-48 hours will be massively important. Lets start with the good, her lungs seem to be as well, or better than expected. The bad, Stella is about 12.34 ounces. The objective right now: survive, plain and simple. Mom is resting, with some pain, from the surgery and is getting ready to finally see her girl (for more than 2 seconds). This is nearly 10 hrs after birth; this gives an idea how serious she is right now. Its gonna be a roller-coaster ride. We have to trust that her fate, in the Lord's hands, is to make her part of his kingdom.
Updates as we can get them to you, promise. Here is a picture (many of you already have seen), but it is priceless. A 2-hr old girl sucking her thumb. Keep the faith and prayers our way, please.

Winning Battles

Tomorrow, Stella will be 26 weeks old. When we arrived in Louisville, our specialists estimated she would be born at 26-27 weeks. The past two weeks since we've been here, all we could think about is the hope that Stella would reach a large enough size to be viable in the NICU. When we arrived, she was estimated to be 10 0z. Two weeks is needed to truly determine if a child is growing due to inaccuracies. So our ultrasound today was a huge moment of anxiety and hope. According to the measurements, she has gained up to 12-13 ounces (350-370 grams). We were told recently that we would be lucky/happy to reach 350 grams. We'll she did it. Its a small victory.
To clarify, development is the bigger issue over size. If a baby is developing (e.g., brain, lungs, digestive systems) and is large enough (to fit breathing and feeding tubes, etc), that is better than being large enough to be in the NICU, but not having the "tools" to survive out of the womb. I hope that makes some sense. In sum, we are happy for winning a small battle, which is getting her to a size that (barely) viable. We can only pray her "tools" are good enough to make it when she comes out, which should be in the next 10 days or so, from what we are told.
A few members of the staff have used the "war" analogy to describe this time, as in "you have to be ready for battle at any time, any day, because the doctors may make the call to deliver at anytime". It seems cliche. Actually, it is; but what the heck. But I am going to go with it and take it a step further and use the "battle" within the "war" analogy.
Right now, we are all about winning battles. Some battles are won in losing wars, some battles are lost in winning wars. Some battles shift the axis of a war and alter it completely. I am hoping today's victory is one that shifts the balance towards Stella. We've been winning the small battles daily with her great scripts (30m heartbeat monitoring 2X a day). We've also been winning with our ability to keep it together as parents in the face of so much adversity and anxiety (although we both have our moments). We are winning in that we both have enhanced our understanding of God; me more than Shanna. I had yet to have a watershed moment in my life that the Lord came to me, but he has and I am thankful. This is more than convenience and will persist no matter the outcome he has determined for Stella.
I want to thank you all so much for the prayers, support, love, and time. We are thankful. I want to especially thank my sister Christine, who traveled 8 hours each way from Raleigh to be with us this weekend in Louisville. I also want to thank Brian and Rachel for coming by when they were in town yesterday. You are great friends and we are happy to have you (and the unreal ice cream!).
Who knows what the outcome of this war is? All I know is I am ready for battle daily, and I feel like I have a great army of supporters in each of you that read this or send us your love in some way. We need it, the time is coming where we will be tested. We are thankful more, now than ever.

NICU Tour

Last night I broke down - all I could do was hold on to John and cry. The evening nurse heard me and came in to see if there was anything that she could do for me. There wasn't - but it was so nice of her to check in. In the morning one of my favorite nurses came in, sat down beside my bed, and asked me if I wanted to talk. The evening nurse had told the morning nurses that I was upset last night. Normally this type of invasion of privacy would have bothered me but I find it so sweet and touching. Theresa (the morning nurse) and I talked for a while before she asked me if I had toured the NICU yet. We had not and I was very anxious to see how things go in there. She set up a tour for us and walked us across the pedway to the Children's Hospital. Once we were over there I could barely breathe. There were colorful walls and cheerful nurses but I knew that each and every one of those little ones were in the fight of their lives. The nurse that took us around explained protocols for visiting and having other visitors come in. She showed me the lactation room where you can go to pump and then give them the breast milk to tube feed to baby. We walked around the different pods while she explained which each one of the tubes, wires, etc. are for in the baby. She showed us the "giraffe" which is most advanced incubator. Just looking at the little one in the giraffe holding on for dear life, with all the tubes coming out of him was really difficult. I needed to take a minute to cry and let it all sink in. Once I calmed down she continued the tour, showing us two new renovated pods. These pods are much more homey - each baby gets their own "room" that you can decorate, there is a sleeping bench and a recliner in the room as well. We were informed that the smallest babies are put in these rooms, so hopefully they have a bed open when Stella is born.

That NICU visit was Thursday and I have just now been able to finish writing about it (Saturday evening).

Thursday was a pretty uneventful day other than visiting the NICU. I did get an amazing package from a wonderful sorority sister - thanks Sarah!! In it was a beautiful blanket that she made Stella, a book, a framed prayer, candy, pens, and a journal. The colorful paper with the thoughtful gifts really helped to bring a smile to my face. No change with Stella, my mood was a little lower than the day before but we finished Thursday with a wonderful prayer to St. Jude (that my mom had sent me in the mail).

FRIDAY

We were sure that Dr. P was going to get Stella's weight at Friday's ultrasound, but he told us Thursday night that he wanted to wait until Monday. I guess the best time to get a good determinate if they have gained weight is 2 - 3 weeks (and it will be 2 weeks on Monday). He said that it doesn't help to "cheat days." Friday's ultrasound came late, which kept me in nervous knots all day. Once in there she gave me a good scare by not moving at first!! She was good and curled up in a tight ball. The tech gave her a couple good shakes to wake her up and she started kicking back. The tech got her so agitated that she did a nice roll on her belly and took some practice breaths with it. Her u/s looked as good as we can hope that it could.

The reality of Stella being born more than three months early is starting to sink in. The first night in the hospital both Dr. P (perinatologist) and Dr. Cohen (neonatologist) told us that she will most likely be delivered between 26-27 weeks. After that time she may suffer brain damage or even death inside me. As the 26 week mark is drawing close I'm getting more and more scared. The uncertainty of when Dr. P will decide to take her and then how everything will happen is killing me. He was great today when I asked him about it, but even he can't give me a definite answer on when he will decide to take her. He said that he has to see her u/s Monday and make a serious judgment call. If my girl has not grown and is still only 10oz her chance of survival drops significantly below the 60% that she was given at the beginning of the week.

I don't think I'm ready for this! I don't think that I'm ready to deal with the possibility of losing my daughter. I'm not even sure how you get ready for something like this. I'm not ready for her to be away from me. Right now I have her in me where I feel I can keep her safe and sound. Once she is out I won't even be able to hold her. I cry just thinking about only being able to sit beside her and hold her hand or foot. How do you prepare yourself for that? How do you prepare yourself for the possibility of going home without your daughter?

Roadblock

Going to try to make this fast because there is so much to do. First and most importantly, Mom and baby are doing well physically (but Mom is frustrated, as am I). Shanna was seen at West Penn Hospital today by another specialist. Unfortunately for us, he (and this supposed "family friend" that runs the NICU - and broke his word to us) were nowhere near as compassionate or interested in going the extra mile to help our situation as our previous specialist was in Louisville. The way it was summed up to me is that the West Penn staff basically ignored the advice given to them in Shanna's file (by a specialist that has TAUGHT neonatal care as a professor at the University of Louisville for 18 years) and had a "what do you want us to do" kind of attitude.
So we are left with two opinions...two choices. Both hospitals are top-grade (level III) NICU units. One choice involves staying at West Penn with a crass, reactant specialist who is only going to admit Shanna when something is wrong (and potentially too late), or going to Louisville where the specialist is interested and passionate about giving Shanna and Stella constant, proactive care. I love my family and close friends in the 'Burgh, but this is an easy decision. Janice, being the great big sister she is, will drive Shanna to Louisville first thing in the morning and I will meet them there in the afternoon. This is a decision that Shanna considered before going to Pittsburgh because she liked the specialist. Chalk it up to a "mother is always right" and go with your first instincts.
Is it rational to drive your wife 10 hours home and then have a family member drive her 6 hours the other way? Of course not, but we have one priority and one priority only here. We are going back where we should have gone all along. Louisville it is. We'll keep you updated.
There are so many of you that have offered help, support, and prayers. I want to let each of you know that I thank you and I do appreciate your kindness. I simply haven't had the time to let you know how much this really means to me.