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, January 19, 2011

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).


D
o 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.

3 comments:

  1. Shanna, John just informed me of what's going on via email. I want you both to know that I'm praying SO HARD for little Stella. God really can and does perform miracles, and it's inspiring to me that you two have gone to such great lengths to find the best of care. I hope you have confidence in that, and as I emailed John just now, I've read that every single day that a fetus stays put can make a huge difference in her chances for surviving and thriving. Take care of yourself!

    Erin (Kleman) Hollenbaugh

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  2. Your entire family is constantly in my thoughts. If I had the right words I would add them here but cant possibly feel what you all must be going through. Good luck to you all

    Jeffrey Bolt

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  3. I didn't realize until this morning that you updated your blog. I kept checking back, but I was going back to the one John wrote (not sure why),and didn't see the update.

    ANYWAY, I'm glad I know more. I never want to overwhelm you with questions, so I'm just glad to get the blog update.

    Please tell Stella that Aunt Meggers loves her SO MUCH.

    ReplyDelete

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