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, November 23, 2011

Directions needed to a lighted path.

So this is it, tomorrow is... well, tomorrow - Thanksgiving... the start of the holiday season. It's been a little less than 10 months since I've held Stella, since I kissed her sweet face, and since I had to leave her in Norton Hospital and walk out of there alone, with empty arms. I've been through a roller coaster of emotions since that day (Feb 5) but none as low as I've felt the last few weeks. I feel overwhelmed by Thanksgiving, Christmas, New Years, Stella's up coming birthday, and up coming angelversary. It all seems to be happening so fast and I feel out of control. I have no idea what to do. I don't know how to act. I don't know how to incorporate my daughter into the holiday season in a way that I am able to handle. I can barely function, I'm crying all the time, the only thing that gets me out of bed is work and I'm off for the next five days. I'm not going to be shy about things on here... I didn't brush my teeth until after 5pm today and I only just took a shower because I couldn't deal with my smell anymore (but I didn't wash of hair, of course). I've spent most of the day on the couch somewhere between strangely calm to hysterical. I did call the credit counselor that the adoption agency recommended to us. Oh yes, there is some good news I should share: The adoption agency will not approve us until we complete a plan with a credit counseling agency and take a "get out of debt" class. So after taking a look at our checking account and finding that we have $200 to last us until John gets paid next Wednesday I promptly called to set up an appointment to get these finances straightened out. Like I pointed out on the phone with the counselor today, a full time professor and a full time teacher should not be living paycheck to paycheck!

Let's compound extreme money problems on top of grief and let's add in a little difficulty with our adoption agency -- sounds like a perfect recipe for dealing with the holidays! I keep trying to remind myself that people have been through worse! There are women who have lost multiple children or who have had their children murdered. There are families who are being put out onto the street because their house went into foreclosure when someone lost their job. There are couples who have been on the waiting list for a baby for years and years. I can recognize that there are others out there who are worse off then me - my question is, how do these people get up and continue to face the day?

John asked me what I really want to do tomorrow. He had to know that he was not going to like my answer! I'd like to lay in bed ALL day, watching NCIS, and pretending that it is just a regular day off of work.  I got that disappointed look and an "oh bun..."

We have been blessed with wonderful friends who have invited us to spend Thanksgiving with them tomorrow after our plans to volunteer at a kitchen feeding those in need. I wish I could be happy for what we have, I wish that I could be excited to spend my Thanksgiving this way. But all I can think about is how I want my momma and my brother and most of all my Stella! These thoughts have consumed me to the point that I am unable to do anything but think about these three things that I want so badly. Then as the wave of pain rolls in I cry uncontrollably when I realize that my momma and brother are not coming here for Thanksgiving and my Stella girl is never coming back here to Earth. How do I face the holiday then? How do I go through the motions of a day that is only bringing me pain? I need answers! I need to know how to function!

I miss Shanna... I miss the person that I was before my daughter died. I miss smiling and having fun. I miss my friends! I wish I could talk to my friends, I wish I could do something other than cry. I wish I had hope! I have lost my hope... hope that I will ever really be happy and hope that John and I will ever get to raise children.

If you know how I can get my hope back... TELL ME! If you have any idea of how to handle the holidays, please pass along the advice! I'm lost and wandering around a dark ally - I really need someone to find me and/or give me directions to a lighted path.

Wednesday, November 2, 2011

30 Days of Thanks!

Not too long ago in counseling I was crying hysterically because large chucks of my day consist of my wishing I was with Stella (in heaven). My counselor told me to tell her my blessings. I said loudly in a very funny Shanna cry voice, "I dooooon't haaaaave annnny blessssings!" I could tell by the look on her face that she wanted to laugh at me. If I wouldn't have been so heartbroken I probably wo...uld have laughed at myself. The truth is... my daughter died, yes. It is the worst pain that you could possible go through. Some days I want to die, some days hurt so bad that I can't think of anything but the pain, but I STILL have many blessings and many things to be thankful for. I'm starting this one day late, but I'll make up for yesterday:
11/1/2011: I am thankful that after 3 long years of infertility John and I conceived Stella. I am thankful for each and everyday of my pregnancy from the ones where I couldn't stop puking to the ones where I couldn't stop crying. And I thank God each and every day for giving me the opportunity to spend five amazing days with my daughter!

11/2/2011: I am thankful to be able to call the most amazing man I've ever known my husband! He is strong, sweet, loving, and the best daddy ever! ♥
11/3/2011: Today I am thankful for my seven rescued bubs...Precious, Zeppelin, Sammie, Magellan, Pumpkin, Carmella and Tony. I am sure that God brought us all together for a reason and I love them more than I can describe.
11/4/2011: I am so very thankful for an amazingly supportive family. I know I have a shoulder to lean on always. I'm especially thankful that my mom, Trav and I are so close. ♥
11/5/2011: Today I am thankful that if Stella can not be in my arms, that she is in our Lord Jesus Christ's arms. (9 months today... love you baby girl)
11/6/2011: Even though we have yet to meet her, she has yet to choose us, and baby may not even be conceived yet, I am incredibly thankful for our Birth Mother. I am thankful that she will choose life, I am thankful that she will do the most selfless thing a person can do, I am thankful that she will provide us with the baby that we so desperately want. ♥
11/7/2011: Today I am thankful that I did not have to drive to work in the dark!
11/8/2011: Today I am thankful for the beautiful friends that I have, all over the U.S. Friends who prayed for us while Stella and I were in the hospital. Friends who cried and morned with us when Stella passed. Friends who have helped me put my pieces back together. And friends who have shared in the joy of our adoption. You are all heaven sent. ♥ And I am thankful for you!!!
 11/9/2011: Today I am thankful for a new car and the ability to put gas in it so that I can drive to work, trainings, the grocery store, etc...as some people have cars but no gas or no car and no one to help them get around.
11/10/2011: Today I am so thankful for God bringing me into my kiddos' lives! I know they need me and I'm here to love and support them as much as I can. If you have been around me today you have prob heard me saying "I'm not your mother" several time. The truth is that I love them and treat them like I am. Thank you, God for my special kiddos!
11/11/2011: Today I am thankful to all those who are currently or have served our country! I very much realize that freedom is not free and we are lucky to live in this country. Thank you!! Happy Veteran's Day. ♥
11/12/2011: I'm thankful that I woke up, next to my husband, in a warm bed, under a secure roof - as many people do not have a warm bed or a secure roof above them. I am truly thankful for having our basic needs met everyday!
 11/13/2011: Today I am thankful for a very comfortable couch and the right to sleep on it ALL day!
11/14/2011: Today I am thankful for the strength that I have deep, down inside me to get out of my bed everyday. Lord knows it is a challenge and only He knows the pain that I face everyday.
11/15/2011: Today I am thankful for massages!

Saturday, July 30, 2011

I'm going to be okay

"Don't ever lose hope and give up, everything turns out okay and the good guys always win." ~Anonymous

Last Friday I was sitting on the beach by myself. I had pulled my beach chair down to the water so that as the waves were coming in they would splash up my legs and cool me off. It was just me, my book and the waves (and a few dozen others who's condos were near ours). I was enjoying the sound of the waves, the sunshine, the kids who were boogie boarding near me, the sand in between my toes, and my book. Every couple of pages I would look up at the ocean and take it all in - the smell of salt water in the air, the way the sky mixes with the ocean out on the horizon, the peacefulness that comes with being close to water. This was our last day and I wanted to enjoy every second I had left. It was then, on that Friday, alone on the beach, that I finally realized - I'm going to be okay.

Since I lost Stella, so many people have told me that I was eventually going to be okay. My counselor has even made me say it out loud a few times during therapy. I never believed it. I continued on, tried to muddle through my life knowing that I had to keep living but never believing that I would ever feel alive again. If, even for a second, the thought of being okay crossed my mind I would quickly remind myself that Stella, my daughter, my only child had died in my arms. How could I ever be okay after that?

I spent a lot of time crying the week that we were at the beach. We decided to bring Stella's ashes with us - just looking at and holding her urn brings me great comfort. I cried on our way to North Carolina in the car, I cried when I set her urn next to the bed in the condo, I cried at the beach, in bed, in the shower and while laying on the couch. Of course I had fun - I enjoyed being with family, eating the amazing food that Chris prepared for us, and riding jet skis. But I missed my Stella! I don't know what changed on Friday - I don't know why God chose that day, that minute... But what I do know is that it has been 8 days later and I still know with all of my heart that I am going to be okay. For the first time in 6 months I feel optimistic. I know that the pain that I feel today will never go away but the severity will lessen. I know that Stella will be with me in my heart until the day that I die and I get to finally see her again. I want her to be an active part of my life, but in a joyful way and not a sorrowful way.

On Friday evening John and I took Stella down to the beach. I always feel a little closer to God while I'm standing in the sand beside the ocean - and I felt a little closer to Stella then too. We both took a pinch of her ashes and as a wave was returning to sea we sent a little piece of Stella to sea as well. John and I hugged and cried - we talked to Stella - we promised each other that we were going to get through this. As we were standing there a beautiful seashell washed up between our feet. John picked it up, turned around and wrote Stella's name in the sand. As he was writing none of the waves rolled in far enough to even touch our feet. When he finished we just stood there, holding each other, looking at our daughter's name... just as we were taking a step away from her name and the ocean a large wave rolled in and washed the writing away. I felt as if that wave took a tremendous amount of my pain with it as it retreated back to the sea.

Since coming back from the beach John and I have been busy getting ready for the upcoming school year. I went back to work on Tuesday, Wednesday and Thursday for our professional development days. John had a lot of work to do for his online class and some research he has been working on. We have both been looking forward to the future. We know that with everyday that passes we are getting a little bit stronger. That is why we have decided that we are ready to expand our family.... John and I are going to adopt!

This week has been sort of a whirl wind of information seeking, paperwork and immediate excitement.
Monday - I contacted Catholic Charities of Owensboro, KY and spoke to a women about our interest in adoption and our wanting to go through their agency. (We had already done the research before leaving for the beach.) She had her assistant send us out the paperwork that day.
Tuesday - We received the paperwork in the mail and I immediately filled it out. When John came home from bingo at the Knight of Columbus he signed on the dotted lines.
Wednesday - The paperwork was back in the mail on it's way to Owensboro.
Friday - We received a letter in the mail inviting us to the adoption workshop for August 20 and 21. Basically we bypassed the waiting period and we were accepted as an adoptive family right away. As soon as the workshop is over Catholic Charities will begin our Home Study - a lengthy process meant to determine if John and I are stable individuals capable of raising a child.... I think we just may pass ;)

After our Home Study is complete it may be a few months before a birth mother chooses us as her child's adoptive parents. However, Catholic Charities does not have workshops if they do not have birth mothers to match up with those invited to the workshop. So from what we understand the process should not take years but hopefully only a few months, a year at the most.

We can hardly contain our excitement. We finally feel like there is something to look forward to and something to get out of bed for. Four months ago - hell, even one month ago I was not ready to be anyone but Stella's mom. Today I know I'm ready to be the mom of an angel and a mom to a little one right here on Earth.
Please pray for us - we will need God's guidance as we take one this tremendous undertaking... adoption.

Not flesh of my flesh, Nor bone of my bone,
But still miraculously my own.
Never forget for a single minute,
You didn't grow under my heart - but in it
--- Fleur Conkling Heylinger

Wednesday, July 6, 2011

What I've learned

Yesterday was the five month Angelversary of my beautiful daughter Stella. Somewhere around 7:00pm on February 5, 2011 Stella's Doctor, Dr. Cohan, looked up at me - looked right into my eyes and said "Shanna she is not going to survive this." That event was preceded by about an hour of chaos... beeping machines, doctors and nurses running in and out of her room, etc. When all is quiet and dark in the middle of the night my brain goes back to that exact moment... "Shanna she is not going to survive this...Shanna she is not going to survive this... Shanna she is not going to survive this." plays over and over in my head like a broken record. Right now if I close my eyes, I can still see Dr. Cohen clear as day: he is in jeans and an old sweatshirt (because he was called in when her stats began to fall), with a little scruff like he hadn't shaved since yesterday, but with his honest and kind eyes looking right into mine. At the same time as he was saying those words to me I was remembering the night I checked into the hospital almost three weeks before. He looked at me then with those same honest and kind eyes when he promised that he would do everything he could to save Stella. He also promised that he would always tell me the truth about her condition and if/when all hope was lost he would tell me straight out and allow me the honor of holding her as she passed.

Tuesday, June 21, 2011

Precious

Nine years ago almost to the day my Big Shannon (big sister in the sorority) and I were laying around the sorority house bored out of our minds. She had been wanting to get a dog for a while so she had the bright idea to head to the Humane Society of Clarion County to see if there were any puppies that caught her eye. I very reluctantly went with her - I had never been to a Humane Society because I didn't feel like I could leave and not take a dog with me. I was nervous but a little excited at the possibility of her getting a dog. We went in and right over to the "puppy" section. All the dogs were barking so loud and it echos in there so it sounded like they were all right next to me. I was very overwhelmed by the noise and all the dogs jumping at their cage doors. We sort of skimmed the cages ... just looking. I don't remember which one of us noticed her but before I knew it we were pulling this beautiful Chow/Shepard mix out of the back of her cage and hooking a leash up to her collar. Her tail was tucked tightly between her legs, she was shaking, and her large ears were pressed back against her head. We sort of dragged her outside to the small grassy patch that the shelter had for the dogs. We sat down on a bench and watched her tentatively sniff around. She never really came over to us - we had to reach out to pet her as she would turn away, afraid of human contact. It broke my heart to put her back into the cage and watch her backup and attempt to shrink into a tiny ball. She never barked, never jumped at her door, never made any attempt to get our attention after we put her back in there. We left the Humane Society with one goal: getting our landlords to give their consent for us to take that pretty girl home.

The next day we went back to the Humane Society, proclaimed that she was going to be "our" dog, and took that frightened pup back to the sorority house. The adoption papers had a spot for the name of the dog. We had not even thought about what to name her. I looked at Shannon and all we could say was that she was so very Precious. So I wrote Precious under her name and off we went. Now Precious didn't trot out the Humane Society sure that she was about to go to an awesome home. I believe that Shannon held the leash while I picked her up and sort of drug her out the door and to Shannon's car. She then took over and picked her up and put her in the backseat. I sat back there with her while we drove back to the sorority house.

It took Precious a few days to come out of the corner of the living room, about a week to bark, and months to show anyone but Shannon and I any love. She was scared out of her mind about everything... the tv, a loud car outside, if you moved suddenly, and especially men! Days turned into weeks and weeks into months and before we knew it Precious and I had formed a bond that could not be broken. Neither Shannon or I ever discussed it... it was sort of obvious - Precious had become my dog.

Fast forward nine years... throughout that whole time my girl was with me as I graduated from college and moved into an apartment, fell in love with John and she insisted on living with him instead of me and then moved to Akron with John. She was there to mother the two tiny kittens we found (Sammie and Magellan) and she took to Zeppelin right away as if she knew that he needed a good home. She helped to show him the "dog" ropes and what it took to be apart of the Spinda family. May of 2009 I reached my goal of one day getting a huge yard for Precious to run, play, and just hang out in. I can't describe what it feels like to watch her and Zeppelin run and play or for Prec to just lay in her yard and watch the neighborhood. Precious became a "mom" for the forth time when we adopted a week old kitten and bottle fed her until she became the terror that she is today, Pumpkin. Precious sat gaurd of Pumpkin's cage while she slept, she growled at anyone (person or animal) who attempted to go near the cage, and sat closely to watch over John and I as we were feeding her. We recently added babies six and seven to Precious's broad with Tony and Carmella (the bunnies). She is the matriarch of the Spinda's clan... it is amazing to watch the cats rub up against her, it is so funny when Zepp follows her around the backyard, and so touching when she goes in and licks Carmella's head/ears.

You may have read this touching history of Precious and I and then asked yourself: what does this story have to do with "Stella's Journey?" I can't talk about Precious without talking about Stella... I feel... no, I know that Precious knew when I was pregnant. She started barking more at things that were outside (cars, people, etc), she was a little more territorial, and she was very lovey with me. Throughout John and I's fertility struggles we would always mention "we have to have a baby while we have Prec, she will be so good with him/her!" We could not contain our excitement to bring Stella home and watch Precious's motherly instinct kick in. Our only fear was that she would get a little too protective and not let anyone but us hold her. :)

When I was in the hospital with Stella Precious went to stay with my mom. My mom sent pictures daily of Precious laying on the couch with her, playing in the snow, and looking sad missing her mama and daddy. It was very difficult to be in the hospital, as I have expressed before, so far away from friends and family. However it was even more difficult to be away from Precious. I was so used to Prec cuddling up with me when I was sick or sad. The days leading up to my admittance into the hospital, Precious stuck close to my side. She laid on the bed or couch with me while I was on bedrest at home and made me feel so loved and comforted.

After Stella passed away she stayed with my mom until we came up to PA for Stella's Memorial Service. We had Zeppelin back from the kennel and Sammie, Magellan, and Pumpkin were here the whole time, but something felt wrong... we didn't have our main lady - Precious! When we showed up at my mom's house a few days before the service Precious must have heard us outside as we walked to the door. She ran down the stairs so fast and hard that she pulled a muscle in her front leg. Our poor girl limped around for a few days all because she had missed her mama and daddy so so much! Once she was home and we had the gang all together we felt like we could begin to put the pieces of our lives back in place. Having pets after you lose your child can be so therapeutic... the dogs forced us to get up and out of bed and the cats came up and cuddled with us when we were crying. When we just need to sit in Stella's room and look through her things, Precious is always there to sit beside us and show us support in the only way she knows how... to love on us.

I'm writing this blog post while my Precious girl is getting her tooth removed... she had a full physical (with bloodwork) about a week ago. She is a very healthy ten year old pup but I'm still nervous! Save for a months that I was "homeless" after college (when she stayed in the care of her wonderful Aunt Sarah) Precious has been the only constant in my life, everyday, every moment living with me for nine years! John and I haven't even been together that long. After the horrific six months that we have just been through, losing our Queen our Angel Babe our Ronie Girl (pronounced with a long O) would probably completely break us... not like losing a child doesn't break you, but to have such a tremendous loss and to be right in the middle of attempting to find your new normal and then to lose such an amazing pup... ugh I can't even explain what that would do to us!

So while my girl is currently in surgery, taking it like a champ (I pray), I am sitting here on the recliner. I am unable to do anything else but write about my Precious babe and I know that that is okay. I wait anxiously by the phone for her Dr. to call me and let me know everything is okay and I pray that I can bring my babe home tonight and take care of her like she has taken care of me for so many years!

Friday, June 17, 2011

What I Want

God never asked me what I wanted. If he had, I would have told Him to fix her, to make her all better so that I can bring her home and love her more than anything in this world. God never asks us what we want. We learn that the world just doesn't work that way, that He just doesn't work that way. I know there is a plan... I know that God doesn't "do" things to us - He does them for us. And when the things that are done hurt us, He is there to cry with us. This doesn't stop me from thinking about all the things that I want.

I have never been the kind of person who could ask for things. I am the one to meet others' needs and if mine get met in the mean time - great, if not - I muddle through. Lately I have been really struggling. (I laugh as I type that) That phrase is about the best way that I can express myself to anyone. My way of reaching out is to say "I have been struggling lately." Not a very direct way of reaching out, huh? Maybe it is because I'm not used to reaching out. Maybe it is because I don't want to be a bother. I think that part of the reason that I don't want to reach out is because I am afraid that I will be rejected. Not asking hurts much less than asking and being rejected. I guess writing my feelings in this blog and then hoping that people read it is about as indirect as saying "I have been struggling lately." (I laugh again at myself) Although I know that I'm being very indirect, that writing in Stella's blog is not the same as actually calling someone and telling them what I need - I feel that this will get a lot of things off my mind. I haven't written in a long time. I've let Mother's Day come and go, Stella's Due Date come and go, and all of the very bad and very good moments in between come and go without writing. I hope to write a special post for the love of my life on Father's Day, but today's post is just about me. My needs... what I want!

I want my daughter back! I want to hold Stella. I want to sing to Stella. I want to read to Stella. I want to give Stella a bath and dress her in a pretty dress. I want to wake up at 3am because Stella is screaming and hungry. I want to sit in Stella's room and feed her until she falls asleep. I want my daughter back. I want her to go to preschool and kindergarten. I want her to make her First Holy Communion. I want Stella to go to school and I want to help her with her homework. I want to watch my daughter grow up. I want Stella to graduate from High School and go off to college. I want her to come home on the weekends and ask me to do her laundry. I want to watch Stella fall in love, succeed at her career, and start a family. I want Stella to be a mother. I just want Stella back in this world!

I want my pregnancy back! I want to travel back in time, back to December 21, 2010 8:00am - the exact time that we were first told that something was wrong with our baby girl. I want to go back to that day in the ultrasound room. I want Stella to be the exact size that she was supposed to be. I want to finish out the next 20 weeks of my pregnancy without complications. I want to have a baby shower, to paint her room, to wash her clothes, to put her crib together. I never had a baby shower - instead I had a memorial service and a lunch at the restaurant where my shower was booked. We didn't get a chance to paint her room - we wanted to wait until after Christmas. I never had a chance to wash her clothes - I took all the tags off and put them in a laundry basket, but I didn't have any baby laundry detergent yet. Her clothes are still in the laundry basket waiting to be washed. We never had a chance to put her crib together - John was going to do that the week before he went back from Christmas break. We were in Louisville already during that week. He crib now sits in the box, in her closet. I want to have heartburn, swollen feet, and no energy again. I want to sing in the car at the top of my lungs and feel Stella kicking me again.

I want to feel something other than deep, painful sadness. Even when I'm smiling I can still feel such horrible pain. I want someone to come sit with me when I'm sad and crying. I want someone to hold my hand. I want someone to reach out to John and help him through this difficult time so that he doesn't have to be so strong for me. I want people to understand that I'm not "over it", I'm not "better now", and I never will be. I want people to understand that four months is NOT a very long time. I often wake up and think that it has only been a few days since I lost Stella.

I want people to know what this is like without actually having to lose a child. I have nightmares every single night. Every night! I haven't been able to actually fall asleep on my own (without medication) since I went into the hospital in January. I have to have at least one TV on, sometimes two, at all times. If the room gets silent I start to hear my screams from the night that she passed away. I replay the last few hours of Stella's death in my head at random times - while I'm watching tv, driving in the car, or even when I'm grocery shopping. I have to remember exactly what nurses where in the room, who was doing what, and what they said to me. If I can't remember I start to panic. "Grief comes in waves" - that's the quote that everyone uses to describe grief. My waves knock me over, punch me in the eye, and leave me for dead... if it wasn't for my wonderful husband, I may just lie there and let those waves kill me. I ask God to take me at least once a day. I try to bargain with Him - He can take me if He gives John Stella, or sometimes I just ask if He can take me so that I can be with Stella up there. I often just yell out "I don't want to be alive" or "I can't live without her" I feel that these statements are true. Please note: I do not have any plans on killing myself. I just do not feel like I can live without Stella. I do not have the ability to deal with anything emotional. I can't process and reason. Things get jumbled up in my brain and I can't get them sorted out. I can barely talk on the phone, I can't read books, I spend most of my time playing Farmville on FB because it distracts me, I watch the same cop shows over and over again and sometimes they are the only things that keep me calm. I want everyone to know that I am not nor will I ever be the same person.

I want people to know that I need help! NOT medical or mental help... I'm going to counseling, I've talked with my priest, and I'm pretty open about my feelings with John. But I need help! I need someone to help me take care of things. I need someone to just sit with me. I need someone to help me get back to working out. I need someone to tell me that sleeping till 3pm and then watching tv the rest of the day is okay and normal. I just need help!

I wrote at the beginning of this post that I am not able to reach out. My counselor suggested to me this week that I begin to reach out to "safe" people. I find writing a blog to be safe. This is about as much reaching out as I can do...

Friday, April 8, 2011

Without Stella...

Two months and three days ago I walked out of the new NICU Pod J without Stella, I walked off the Labor & Delivery Floor without Stella, I walked out of Norton Hospital without Stella. Two days later I went to a funeral home and signed papers allowing them to take Stella. I was walking around the world without Stella. Two days after that I went to the doctor's office to get my staples out without Stella. Other women were in there for checkups with their babies. John and I sat in the waiting room without Stella. That evening after my appointment we left Louisville without Stella. I had come there three weeks before with her and I left without her.

I walked into my house in Murray, KY without Stella. John carried in her things - stuffed animals, clothes, blankets, cards, flowers, and much more. But we never carried Stella into the house. I didn't leave the bedroom for days. John brought me coffee and cereal in the morning and dinner at night. I mostly slept through lunch with help from the pain pill I was given for my C-Section. When I finally walked out of the bedroom a few days later I walked into a house that Stella did not live in. The days came and went without Stella. I started taking showers and brushing my teeth. I started riding in the car with John to go places. I didn't get out of the car at first, but at least I left the house.

I started going to lunch with friends. A mere three weeks earlier I had given birth, but I went to lunch without Stella. I started to function without Stella. The thought of functioning without her sometimes put me back into bed for a few days. But with the strength that she gave me I got back out of bed and faced the world without her.

I have done so much in the two months that I have been without Stella. I often wonder how...
How do I get out of bed without Stella?
How do I go back to work without Stella?
How do I laugh without Stella?

The first few days after she passed, while we were still staying at the hotel, while I was showering I would sometimes feel this overwhelming calm. For 30 seconds or so I could breathe, my eyes would dry up, and I felt like someone was hugging me. I told John about this after the second time it happened. I told him that it had to be God telling me that I was going to be okay. Those 30 seconds have turned into hours. The only way I can function is when I am feeling that "hug." When I'm not (which still happens several times a day) I feel like I can't breathe, I can't stop crying, I have this aching pain in my chest and upper arms. I'm not sure that I ever want that feeling to completely go away. That is my reminder that I am living my life without Stella. It's not enough for me to look into the mirror after taking a shower and see the scar where she came out of me. It's not enough that I do not have a car seat in my car, or to walk past her room and know that her crib is stuffed in the closet. It's not enough that the only toys laying around my house are dog toys or that the only two things that wake me up are my alarm or the dogs. The physical pain of losing her is something that I never want to go away. I never want to feel like I can completely function without Stella.

I wonder if God thought that I wouldn't be a good mom - so he took Stella from me. I wonder what horrible thing I could have possibly done to deserve years of infertility, years of aching to be a mom, to hold my baby and to look into her eyes and know that I created such a perfect thing. How could it be that I deserve to have all that taken away from me? Really what did I do? I don't just think, I know that I will be a good mother! There is no doubt in my mind. Maybe God doesn't think so and I guess that's all that matters.

I HATE that people that I don't know look at me and have no idea that I created a perfect angel. I hate that the checkout lady in Walmart doesn't know that I have tears in my eyes because my daughter died. But then at the same time I hate that I am now the person who "lost" her daughter. Like I misplaced her... Is she in the bottom of my purse, or maybe I left her on the kitchen counter? Nope, not there. But you don't want to say that I am the person with a dead daughter. That's not very sensitive, is it? So what do you say? How do you act around me? Do you pretend like everything is normal and the last 8 1/2 months didn't really happen? Or do you nervously ask me how I'm doing and tell me how strong I am for even being able to leave the house?

You think that you don't know how to act. Holy shit, I don't know how to act! I think... will it be weird if I just interject and start talking about Stella because that's all I really want to do? Well, what if I just want a break from talking and I want someone else to do the talking, how do I tell you that? Is it okay to talk about "when I was pregnant" like it was a normal pregnancy and I am a mom with a baby? What about when I just really can't take it, I have to go home, I just want to cry - how are you going to react? That's what I spend my time thinking about. I wonder, does everyone who knows about Stella look at me, cock their head to the side and think "aww, that's Shanna. Her daughter died."?? Or have you forgotten already and think "Oh yes, Shanna did go through something awful, but she is dressed, has makeup on, and is even smiling so everything should be okay by now. We can all move on and the sadness is now over." ?? Well, let me be the one to tell you that it just doesn't work that way. I will always be Shanna, the friend, the daughter, the niece, the wife of John who lost the most precious, most important thing in her life - her five day old baby girl Stella.

Tuesday, March 1, 2011

For my girl

My beautiful Stella Mae is one month old today.

I wish that I would be taking pictures holding her to commemorate this occasion. She would be dressed in a pretty pink dress with a big pink or white flower headband on. I may even be wearing a matching pink shirt. Instead after a long drive back to Kentucky from Pennsylvania we opened several more sympathy cards. I've snapped at John (more than once) for no reason other than I'm unable to appropriately express emotions. And I'm now sitting on our bed crying and writing a blog entry. This is NOT the way things are supposed to be!!

Saturday (February 26, 2011) we held the service for Stella in Greensburg, PA. Close to 100 friends and family showed up to celebrate Stella's short life with us, in the church that I grew up in and John and I were married in. It was truly amazing to see so many people there. After the service, many people whispered into my ear "you are so strong", "beautiful eulogy", "that must have taken so much courage", and even one of John's friends proclaimed "you are the strongest person I know." The truth is... I was not able to get up and read my eulogy because I'm strong or courageous. I got up in front of all of our friends and family because that is what you do when you are a mother. Did I have a choice? Was I really going to sit there and not say anything to all of these special people, who came to mourn with us, who came to celebrate with us, who came to support us? I saw getting up and reading my eulogy as MY JOB AS A MOTHER. It really was as simple as that.

For those of you were not at either service to hear my eulogy
I thought I would include it here:

As you all could imagine, calling this a "difficult time" is a serious understatement! No one ever expects to have to bury a child, let alone a newborn - yet it does happen. But to us... did it really happen to us? Sometimes I wake up and think: it was all a dream, then I look down and see that my stomach is no longer round, I don't feel those little flutters of life, the nursery is empty and I know that it wasn't a dream but a living nightmare.

We tried for three long years to conceive Stella, so you could imagine our excitement when we finally did! However, the excitement was almost immediately overtaken by worry and anxiety. I had several early complications with the pregnancy. Even though I was running in and out of my doctors office almost every other day, John and I still found joy and excitement through all the worry. We were able to bond with Stella and really form a connection with this little person who was slowly developing inside me. Every Monday night we read from "What to Expect when you are expecting" so that we knew exactly what our little Peanut was up to in there. We found it so fascinating that fingerprints develop from the baby moving their hands around in the amniotic fluid or that her little fingernails were already growing. My happiest memories during those five months were of John and I laying in bed, with my stomach exposed, talking, reading, or playing music for our girl. One time we were a little tired of reading children's books and our doctor told us that we could read anything we wanted to her, it's not like she knew what we were saying she only recognized our voices. So John opened up the computer, pulled up Pensblog and read the recap of the Pittsburgh Penguins hockey game to Stella. I'm not sure if she heard anything because I think I laughed the whole time.

Stella and I also had our time alone - two hours each day, my commute to work and then back home. I spent much of this time talking to Stella about anything and everything. I felt like she knew this was our special time. We also listened to music and sang. I was much happier riding to work everyday as soon as I found out that I had this special partner.

As soon as we found out how serious Stella's condition was my motherly determination kicked into high gear. There was NO way that we were not saving our girl. We were going to do everything that it took to get her here safe and sound. The doctors, nurses, and staff at Norton hospital were amazing and truly sent to us from God. Each one of the nurses told me about the many miracles that they had seen at the hospital. They gave me hope. Each night when my doctor made his rounds he reminded me of the seriousness of Stella's condition but then he would always remind us to pray because miracles do happen. Praying is one thing we never forgot to do. John and I prayed from the moment we got up to the moment before I feel asleep in my hospital bed. The prayers were coming from all around us as well. From the lovely nurses that took care of me to our friends and family to complete strangers who had heard about our struggle and were following our story on Stella's blog. John and I felt overwhelmed with love and support.

The two weeks that I spent on hospital bedrest were filled with so many emotions: excitement, when we heard her on the monitor twice a day. Sadness, for the seriousness of her condition. Anxiety, for the unknown. Loneliness, being so far from our family. John and I's ability to lean on each other and to lean on God is what got us through those two weeks. In addition, our determination as parents to do what we needed to do for Stella provided us with the strength we needed to get out of bed and keep going.

The day that Stella's neonatologist walked into my room and told me that he was going to recommend to my doctor that I deliver Stella asap, was the scariest day of my life. We had no idea what to expect. There was a possibility that Stella would be too small to intubate, in which case there would have been nothing that they could have done. We had no idea how developed her little lungs would be. There was just so much unknown. One thing that we held strong to was the belief that she would fight... boy were we right!

Stella came out kicking and surprised everyone. She was a little 12 ouncer who would not let the doctor put in her IVs, who routinely pulled off her temperature monitor, and who would wave her little hand in the air when she wanted a finger to grab onto. My daughter was a STAR! Doctors and nurses from all over Norton Hospital came to visit the 12 ounce baby who was doing so well. Stella had five amazing days of life, filled with hope and determination.

Stella was beautiful. She had perfectly developed features, the most beautiful little nose (that looked just like my mom's), tiny little ears, and the sweetest lips. For only being 26weeks, she had a full head of dark hair. Stella had a spunky little personality that cause each one of her nurses and doctors to fall in love with her right along with her parents. She was a lucky little girl to have so many who loved her - even those who never met her.

When I think back in my life I can not think of a more peaceful time than when I was sitting on the recliner in Stella's room just looking at my beautiful daughter. It was so amazing to me to watch this little tiny being, who was supposed to still be inside me, fight so hard to stay alive. I felt truly peaceful when I was with my daughter.

I'm not sure that I will ever, ever be more proud of anyone in my life. Every time I talk about my daughter I feel the need to tell people how strong and how hard she fought. I can't wait to tell our future children about Stella's fight. And when I feel that I can't make it without her - I think about her fight and how she never gave up. My strength comes from God, I receive strength from John too... but when I've lost all hope and the world seems too overwhelming, I gather all the strength and fight that Stella had in her and I use it to face the day.

My amazing friend Lydia sent me this book while I was in the hospital, called "Acceptance The way to serenity and peace of mind". I found this quote in there: "You live only a split second at a time; that's right this minute. You can think of only one thing at a time, do only one thing at a time; you actually live only one breath at a time. Stop living for a tomorrow that may never come, and start living one day at a time-today. Plan for tomorrow, but live only till bedtime tonight... This you can handle-at least today."

Living without Stella has proved to be the hardest thing that I have ever had to do... and I have to keep doing this horribly hard thing until the day I die. So I try to take it minute by minute, day by day. Just today I have to live without Stella - I can't think any farther than that.

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.

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! :)

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)

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

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.

Monday, January 31, 2011

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.

Thursday, January 27, 2011

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?

Wednesday, January 26, 2011

Update - Jan 26th

Thank you all again for your continued prayers and support. Our ultrasound days are MWF. Today's was good, as have been the past few. This means blood flow from placenta to Stella is good and that all her little, little vitals are working well. Infact, she actually took some practice breaths both times (but especially Monday, we had to coax her today into a few little ones). Most importantly, it means Stella can stay in Shanna and (hopefully) keep growing and improve her chances.

Yesterday, we hit the 25 week mark. Our Parientologist, Dr. Pietrantoni, informed us that this puts Stella at 60% survival. But to me, this means little, I hate to say it. Its a broad statement of odds and each situation is different. I am hardly ready to celebrate this news because out of 10 parents that have children born at 25 weeks, 4 lose their child. What I am excited about is the ultrasounds that indicate Stella can be in Shanna, her best incubator. Each day not only increases Stella's odds of survival in general, but of a strong, healthy life. We find out Friday if she has grown in estimated size (although we've been warned the ultrasound estimates of weight can be inaccurate). One thing is clear, she is sure developing, which is even more important than size (not to downplay that too much). Here are a few pics from today. She yawned and gave us a good look at her hands (POSITIVELY NO IDEA why they won't rotate?!?!).






Tuesday, January 25, 2011

I was laying in my bed, on the fetal monitor, late morning/early afternoon on Sunday. I had just gotten off the phone with my mom, who had encouraged me to call the Chapel and see if a Priest could come and give me communion. John was not yet here and I felt very annoyed with my mom pressuring me to call for communion (even though I really did want it). Then I heard John's squeeky shoes coming down the hall - however, there was a knock at my door and John never knocks. In walks a priest with John right behind him. I just assumed that John had called him or saw him in the hall and asked him to come visit me. John turned my TV off and the Priest proceeded to read the gospel, do a quick homily, give me communion, and pray with John and I. After he left I asked John if he called him - he reported no and thought that I had. I asked the nurse if she had called him - she reported that he came to her with my name on a clipboard asking if he could come in and see me. I figure that they have to have somewhere in my chart that I am Catholic, but I don't remember ever writing it or telling anyone. I've never felt closer to Jesus as I did when I took communion Sunday. I knew that by taking the body of Christ, he was giving me the strength that I need to get through this. I am aloud to take wheelchair rides and walk around the floor a bit, so I will be able to go to church in the Chapel tomorrow. :)

LOVE AND SUPPORT

Many of you have texted, emailed, and/or Facebooked us and we very much appreciate it!! I am still not able to talk on the phone with anyone but my mom. I'll text or IM you all day - I just feel like I may breakdown if I hear the sadness in anyone's voice. I can not break down right now! This journey is just beginning for our family and like my doctor said yesterday - this is the easy part. The hard part is going to come when she is out and in the NICU - we have been told that all preemies have a "honeymoon" period of a few days. They may look like they are going to breathe on their own, fight like hell, and come home earlier than expected... then they crash. This up and down continues until they either lose their fight or are stable enough to come home. This whole scenario scared the crap out of me. I question my strength and my ability to make it though this. My plan is to lean on my God, my husband, and Stella's will to live. Please keep the texts, emails, FB post, and especially prayers coming!! I feel the power of your prayers giving me more and more strength everyday.

STELLA MAE THE FIGHTER - STELLA MAE THE DIVA

I'm sure you are all dying for an "update." Unfortunately we are playing the most nerve wracking waiting game. I'm off constant monitoring - because her heartbeat has stayed fairly steady - and I'm now being monitored for 30 minutes every 12 hours. Stella has a reputation among the nurses as being elusive... I can feel her moving every once in a while, but as soon as the nurse puts that monitor on me she starts KICKING and MOVING! They find a good heartbeat that picks up on the monitor, then we hear what sounds like a thunderstorm at the same time that I feel a swift kick to the area of the monitor, and she is gone. That thunderstorm sound is her moving around in the fluid. A 30 minute monitoring usually takes about 20 minutes to even get started, then the nurse leaves the room thinking that she is going to cooperate, only to return in a few minutes to try and find her again. Eventually either Stella or the nurses give up - usually the nurses. But so far they have been able to get enough of a monitor to show that she is continuing to have a strong heartbeat.

We get ultrasounds every Monday-Wednesday-Friday. This is done to check a few things
1. The blood flow from the cord to her. This is the MOST important thing that they have to monitor. The reason is that my placenta is a "bad" placenta - it did not form properly, may have abrupted early and caused a blood clot in my uterus, and will eventually stop pumping blood to my girl waaay before it should. As long as the u/s is showing good blood flow she is safe in there. But as soon as it starts to show a major slow down or even a minor reversal in blood flow --- she NEEDS to come out!!!
2. They check my fluid levels. Women with IUGR can have low fluid, which of course can become a problem for baby.
3. Her movement - if she is just laying there, not moving very much it means that she is not feeling well. Even if the Doppler shows good blood flow she may not be getting enough oxygen. The fact that she is moving so much is a great sign and has also caused her to have a reputation among the nurses as being a fighter!
4. The last thing that they look for is "practice breathing" - this is when the baby "breathes" in the fluid in an effort to get ready to be on the outside. Most babies to this by 32 weeks and can start doing it as early as 20 or so. Because of her size, I was told several times by the u/s tech that she may never do this before she is born. They still have to look for it, but it's not a major problem that she is not doing it. However, as many of you may have seen on my FB status yesterday - Miss Stella was caught practice breathing!!!! The tech closes up on her belly, watches the lungs and lower abdomen very closely for movement. You can clearly see the heartbeat and that movement and then yesterday we could see the lungs and lower abdomen slowly shifting up and down. THAT IS A PRACTICE BREATH!

Yesterday when Dr. P came to see me he was just as happy as we were to see that she had done this. He continues to stay very positive, tell us to pray, but also pulls us back into reality and remind us that her condition is very critical. However, yesterday he squeezed my arm and said "I don't know why, but I'm very optimistic about this girl. I don't know why, but I really am."

We are attempting to remain optimistic as well.
God bless!!
Shanna and beautiful Stella!!

Friday, January 21, 2011

No news is good news...

Hey everyone,
Its been a few days since we've been on here, but thats not a bad thing. Things have been pretty quiet here. Shanna is resting comfortably (now) and I am feeling good and positive overall. We are waiting on our Friday ultrasound here this morning.
To recap briefly, Wednesday we were admitted, got monitored and things looked really bad at night. The belief was that the cord blood may be having issues, causing birth quicker than desired and lowering her odds. But, with constant monitoring (Shanna basically couldn't sneeze without moving the ultrasound off Stella), things were looking better Thursday and so was the prognosis for Stella's birth. Last night, things again looked good and quiet overall. In other words, as we were told to be prepared for, its a big-time roller coaster ride.
I never cried like I did Wednesday when a sobering reality wsa sinking in. But I can say that I had a great day yesterday emotionally. Similarly, Shanna is doing well (after being a wreck Wednesday night like me) and having her moments, as I still am.
Here is what gets us through (at least me, I just tell Shanna), "Stella is alive today". Every day she is alive, she should grow, especially with the great care here in Louisville. Every day she grows, her odds improve.
But here is what this week has reminded me of: (1) You can't predict the future. If you told me Sunday morning before I left Pittsburgh how this week would play out, I would have been shocked, (2) Things can turn on a dime, anytime, anyway. We could walk into that ultrasound into grim news today. I am trying to prepare myself as much as I can for the swings that seem inevitable. (3) My relationship with my wife is stronger than I even knew it was. We keep each other together and are going to face whatever happens here; good or bad. (4) I have a special relationship with my daughter Stella, who is barely 6 months old. I've seen her, I've seen her fight, and I know she is giving it her all. Shanna and I have memories of our excitement for her, reading to her, talking about her growing up, and so on and so forth. NOBODY can ever take that from us, even if something awful happens here. We are just faithful that these are the beginning of the great times with Stella.
I am in a good place mentally. I even got my classes rolling online. I got faith in everything right now it seems and that feels great. I am trying to be strong for my wife, who is doing great. Just keep praying and hoping that Stella keeps doing great.
Thank you everyone for your continued support.

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.

Monday, January 17, 2011

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.

Friday, January 14, 2011

Road trips, thoughts, and Stella

John and I of course talk a lot while we are in the car together, but after spending so much time together the past few days we couldn't help but have large amounts of quiet time. Surprisingly my thoughts only produced tears a few times... once when I felt overwhelming love toward my girl and another when I was reminded that Stella means "star" in Italian and was told to "let my Stella's light shine." I'm in the hotel in Cincinnati (halfway from Murray to Pittsburgh), relaxing, waiting for my wonderful husband to bring me dinner. I wanted to hop on Stella's blog and personally THANK everyone for their good thoughts, love, and prayers!!

THANK YOU!!

I'm not an optimistic person, but I feel so confident that my Stella girl will fight, fight, fight! I believe that these good feelings and confidence is coming from all the prayers that we have been receiving. Please continue them, we sure do need them.

Good night and God bless!

Thursday, January 13, 2011

What we know so far



Many of you may have already received this email, however I may have missed some. John and I have decided that starting a blog is probably the best way that we can inform and update people on her condition. I also don't want to hide anything or keep anything a secret - I need the support right now!

We will be leaving for Pittsburgh tomorrow - taking the drive over two days as advised by my Perinatologist. We are planning to arrive in Pgh on Saturday and I have an appt with a high-risk Dr. at West Penn Monday.

STELLA'S JOURNEY STARTED 3 WEEKS AGO...

At Stella's 20 week ultrasound she was measuring 4 weeks small. The Dr. told me to try and gain weight and that we would re measure her in three weeks. That appt was Tuesday (the hardest day of my life - so far). At that u/s the tech showed us a foot that was supposedly deformed, reported that she had not grown, and just seemed generally concerned. Stella was curled in a ball and was not moving very much. John and I could barely look at the screen. The Dr. came in and told us that he would set up an appt with a fetal specialist in Louisville for the next day. Yes, we live so far in the sticks that we have to drive 4 hours to get to a decent Dr!

Tuesday night was unbearable!!! I didn't sleep and had several panic attacks.

Yesterday we made the 4 hr. treck up to Louisville to see Dr. P. His office is full of newspaper articles about record breaking premies that he has saved. I started to feel a bit better. We had another u/s and even before the tech could say anything John and I knew that Stella just looked a little better. She was punching and kicking, moving all around, so much so that the tech was finding it hard to get the measurements. But she did and Stella is still measuring 4 weeks behind.

Dr. P comes in, takes the wand and starts looking around himself. He told us that she is severely growth restricted. My placenta is very small and instead of having a three vessel cord she only has a two vessel cord. He informed me that there were several reasons this could happen - however, I don't really fit a lot of them... smokers, drinkers, diabetics. So he said that I will have to have an amino to rule out chromosomal abnormalities. Then as he is still looking at Stella he sees an extra gestational sack... Dr. P believes that Stella had a twin. That twin did not even make it to an embryo, but that the sack is taking up room in my uterus causing the placenta to be small.

I still had to have the amino - which is HORRIBLE!!! Because they still have to rule out chrom ab. So what do we do now??

Dr. P wanted to put me on hospital bed rest to be monitored right away. However, I asked if I could go to Pittsburgh to do this so that I could be close to family. Since Pgh has top notch hospitals he said yes. We are in the process of getting ourselves together to go home so I can be monitored at West Penn hospital. The odds are that Stella will not make it in utero past 28 weeks. That is the reason that I have to be monitored in the hospital. As soon as the placenta stops working - which it will bc of her condition - she has to be taken right away!! If she can hold on one more week to 24 weeks she has a 15-30% chance of survival, 28 weeks 90% chance.

Please pray for my little girl!! She is a fighter and I know she just wants to fight - as she was caught yesterday punching the placenta like a punching bag.

I will post as much as I can... as I found with my running blog, blogging helps me release feelings! This is going to be a difficult journey.

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