We are the Spinda family (John, Shanna & Stella Mae) from Murray, KY... on February 1, 2011 at 10:27am our beautiful baby girl, Stella Mae Spinda, was born at 26 weeks gestation. She weighed 12.34 oz and was 9 in long - Stella suffered from Intrauterin Growth Restriction (IUGR) which caused both her extremely small size and her being born premature. Stella spent five days in the Neonatal Intensive Care Unit (NICU) at Norton/Kosair Hospital in Louisville, KY. She passed away late on February 5, 2011 from complications of her extremely small size. This blog was started when she was 23 gestational weeks old and we discovered her condition. It's original purpose was to keep family and friends updated on Stella's journey - we now hope to use this blog as a way to continue Stella's journey by honoring her memory and also as a way to support others who are struggling with infertility or have lost a pregnancy or baby.

Wednesday, February 23, 2011

A new normal

"You will need to find your new normal" - is what I keep being told. I'm not sure that "new normal" even begins to describe what we need to find. I know that I need to find peace, happiness, and a way to continue my life without my daughter.

I may not have written on the blog for a while, but I have been doing a lot of writing. I wrote and then bravely read a eulogy for Stella at the memorial service for her last night. I wrote our story and then submitted it to Faces of Loss, Faces of Hope (www.facesofloss.com). And I have been writing a lot on Facebook. I've been updating my status, trying to return emails, and commenting on posts and friends' pages. But I don't want to stop blogging! Stella's journey did not end with her passing. John and I have a duty to our angel to keep moving forward and to live our lives for Stella.

I feel overwhelmed by the love and support that John and I have received. I know I've said that before and I'm sure I'll say it again. You can not do something like this alone. Even though as long as we have each other, John and I are never alone... you need more than one person to lean on when you are grieving. It's been difficult to talk on the phone, but the support that I've gotten from texts, emails, and Facebook is unbelievable! Many people keep telling me how strong I am. When you are laying in bed at 3pm, haven't brushed your teeth yet, and haven't showered in two days, you do not feel very strong. But I do feel fortunate that I am not plagued with a barrage of negative emotions along with my sadness. Emotions like anger, regret, or guilt. I think the absence of these negative emotions have given me the ability to attempt to find my "new normal."

Strength has never been something that I have believed that I have. I just do! Especially now, I just do. I get up and walk down the street because I can't stand to look at the walls in my bedroom any more. I go to Walmart with John because I know that I need to eventually get used to being around people . I get up in front of my colleagues, John's colleagues, and our friends to eulogize my beautiful baby girl because I know how much I would regret it if I didn't. I don't think about being strong, I think about surviving and living for Stella.

Speaking of surviving... I survived the Kentucky memorial service. I'm now about 99.9% positive that I will survive the Pennsylvania memorial service. I plan to read my eulogy again on Saturday, as I feel that my friends and family who will be attending that service deserve to hear about my amazing Stella. I'll be nervous and I'll need to do a lot of praying to even get me up and in front of everyone, but I'll do it... for my Stella.

Sunday, February 6, 2011

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.

Friday, February 4, 2011

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.

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 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! :)

Thursday, February 3, 2011

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 :-)

Wednesday, February 2, 2011

Finding us

Hey there,
Lots of you have wondered where we can reach us address-wise. Well, mom is on one floor. Stella is on another, but we are going to be staying at the Ronald McDonald House here in Louisville.
I was somewhat aware of the great things this charity has done, but I was floored with all the blessings we have there. So, if you need to reach us via mail, here is the address:
Ronald McDonald House
550 S. First Street
Room 409 c/o either of us
Louisville, Kentucky 40202

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)

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 :-)

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

Tuesday, February 1, 2011

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.