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...

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.

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.

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.

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!!