For my Mom

Happy Birthday!  I love you!

More than you realize, I love you
Words cannot express how deep the love goes
I could try and formulate the right phrase,
But what is real, in my heart, only God knows

Others are put before you, without any thought
Your selflessness seems to have no end
Know that all you do is deeply appreciated
Our gratefulness to you we would like to send

Truly you are a woman who has great heart
Your strength in anything you've been through
Has been an inspiration to us all
I know my strength lies in watching the example of you

Here and now I pledge to be more like you
To live, love, and have faith never-ending
I hope to someday be able to pass them on
For these attributes, I ask from Jesus in prayers I'm sending

Every time I see you take time for someone
I realize the importance of living in the moment
Your patience is amazing and inspiring
To someday have your level of patience is my commitment

Remember that I will always love you
Even though I wish I could see you more
Know that the distance between us means nothing
I will always be your daughter and you, the Mother I adore

         Love, Bridget

Candle Lighting Ceremony

     We went to the Worldwide Candle Lighting Ceremony a couple weeks ago.  It was a wonderful, moving night.  It was heartbreaking to see all of the people there who had lost children, some of them recently.  There was an opening speaker and then people got up to light their candles and say who they were lighting them for.  I was moved to tears by their stories.  There were so many babies.  When it was out turn I went up to talk and I couldn't get the words out.  Luckily Jordec took over for me and said,"We light this candle for our daughter Stella."  He said when she was born and died and that she lived for 2 hours with us.  I thank him for that, it was just too overwhelming for me to say out loud.  When the other people spoke, I felt so sad for them.  When it was our turn, I realized that I am them.  It broke my heart all over again to realize that our daughter Stella died.  I have been going back to that realization over and over again ever since the ceremony.  It is so hard to say the word die.  I need to say it though otherwise I am just tip-toeing around the reality of what really happened.  By just saying it outright I feel that I can get to a better place of acceptance faster than if I make it sound better by using the words 'lost', 'passed', or 'went to heaven'.  There are times and places for those words but the reality is, she died, she is dead.  It makes me hurt and miss her so much to even write those words but I don't want to float through my days feeling numb, or somewhere else.  I want to feel, even if the feeling is hurt and sadness.  I want to remember her instead of thinking of other things so that I won't hurt.  I don't need to think of her all day, I know that would do no good for me or anyone I am around, but I don't want to not think of her because it is too hard.  I know that is not good for me either.  I am not sure where the happy medium is but I am searching for it.  I need my family and friends to know that I feel that I am hurting more now at this point than right after Stella died.  I think that reality is setting in and the numbness is wearing off.  I realize more and more what we lost, a daughter and a possible future.  All of the things I see in Eliot I will never get to witness with Stella.  I am affected by external triggers more now than I did after she died.  I feel a longing to be pregnant again, to feel a baby move in my belly, to care for and nurture another child.  I find myself hugging the little girls I see a little longer that I used to.  I think about what it would be like if Stella could have grown up like them.  It is hard but I can't help myself.  I don't know how to look at them and not wonder about Stella.  Even my grown-up nieces and their Moms cause jealousy for me.  I don't know how else to describe the feeling.  I wonder if I will ever have the chance to have that kind of relationship with a daughter of my own.  I so wanted that for Stella and me.  I want that so badly and I can never have that with her.  I don't know what else to say.  I just miss her so much. I think that I haven't written here for a while because I didn't want to admit these feelings.  I just wanted to not think about my hurt and try to forget but I can never do that.  I need to forge ahead.  God bless and Merry Christmas.      

Stella's Story Part 4: To Donate, or Not to Donate

     About a week after we found out about Stella's diagnosis, Jordec and I discussed the idea of donating her organs.  I can't remember who thought of it first but we both agreed that we would love to do it but we didn't know what was going to happen, so we were reluctant to say anything definite.  I did some research and it turns out that there is a lot of controversy about babies with Anencephaly donating organs.  Apparently, in order to donate you have to be declared brain dead, but how to you declare a baby brain dead when they don't have a brain?  There is fear that the babies will be seen as nothing more than donors and it is for sure a gray area in the ethics department.  We decided to talk to our doctor about our wishes to donate her organs.  The doctor was surprised but they contacted the right people and put us in contact with them too.  The doctor received an email from Nebraska Organ Recovery Service (NORS) stating that with Stella's condition, she would be eligible to donate her liver, and, if she was over 8 lbs, to donate her heart valves.  I talked with the man who would be doing the operation on Stella multiple times before she was born.  He was amazing and wanted to make sure that we had all of the information before we made our final decision and that we could voice any questions and concerns that we may have.  He even gave me his home number in case we thought of something else to ask about.  We decided that we would donate her organs but we reserved the right to change our minds.  We didn't know what we would be feeling and what the situation would be after she was born, so we wanted to leave ourselves the option.  NORS was understanding of that decision and they were ready for us if we chose to donate that day.  We felt that Stella could maybe live on in others or at least help in research to develop ways to help others.
      On the day Stella was born, she was not 8 lbs so she would not be donating her heart valves.  After she passed, we were comfortable donating her liver so we notified NORS, who was waiting in the hospital, and they got the OR ready for her.  We had some time before the operation so we took a lot of pictures and spent more time with her.  It was hard to let her go but I knew she would be coming back in a few hours.  We rested and visited with family while she was gone.  I was so happy to see her come back to us.  I had missed her!  I remember feeling proud of her for donating her liver and thinking that she was so brave.  Those thoughts may seem irrational but I still feel that way.  I am proud of my little girl doing her part in some big medical advancements.  NORS gave us little teddy bears with a ribbon around them that says "HERO".  We received multiple bears and gave them out to the grandparents.  I agree that Stella is a hero.  We also received many pins with their logo on that we handed out to Stella's Aunts and Uncles.  I really can't stress enough how amazing NORS was to us.  Please go to their website and put your name in their donor registry if you are an organ donor. 
     We found out later that the kind of liver donation she had was only second one done in Nebraska.  It is such a new procedure that, unfortunately, her liver didn't directly affect someone but it will indirectly affect many, many lives to come.  They found out through Stella that they needed to use an addition medicine to make the donated liver work better.  I don't know the specifics as it is a confusing process for me but because of Stella, they are one step closer to figuring it out.  They are also froze her liver cells for the possibility of future developments where they could use them.  The great thing is, if they ever use her cells, we will be notified!  I think that is awesome.  We received a medal in the mail from NORS a while back and, when we get her headstone figured out, it will be put onto it.
      Now, Jordec and I are running a 1/2 marathon in May to honor Stella.  As a side note, any donations we receive are going to be donated to NORS.  They truly are an amazing organization.  God bless!

What Faith Can Do

"What Faith Can Do" - by: Kutless

Everybody falls sometimes
Gotta find the strength to rise
From the ashes and make a new beginning
Anyone can feel the ache
You think it’s more than you can take
But you're stronger, stronger than you know
Don’t you give up now
The sun will soon be shining
You gotta face the clouds
To find the silver lining

I’ve seen dreams that move the mountains
Hope that doesn’t ever end
Even when the sky is falling
I’ve seen miracles just happen
Silent prayers get answered
Broken hearts become brand new
That’s what faith can do

It doesn’t matter what you’ve heard
Impossible is not a word
It’s just a reason for someone not to try
Everybody’s scared to death
When they decide to take that step
Out on the water
It’ll be alright
Life is so much more
Than what your eyes are seeing
You will find your way
If you keep believing

I’ve seen dreams that move the mountains
Hope that doesn’t ever end
Even when the sky is falling
I’ve seen miracles just happen
Silent prayers get answered
Broken hearts become brand new
That’s what faith can do

Overcome the odds
You don't have a chance
(That’s what faith can do)
When the world says you can’t
It’ll tell you that you can!

I’ve seen dreams that move the mountains
Hope that doesn’t ever end
Even when the sky is falling
And I’ve seen miracles just happen
Silent prayers get answered
Broken hearts become brand new
That’s what faith can do
That's what faith can do!
Even if you fall sometimes
You will have the strength to rise

*After we found out about Stella's diagnosis, I would sit and cry to this song.  It gave me such a sense of peace to know that no matter what happens, it was in God's hands.  I knew that my only job was to keep the faith going.  I still listen to that song a lot and I cry sometimes and sometimes I don't but no matter what, the sense of peace still washes over me.  I will take that peace any day of the week!  It's all about finding what works for you.  It changes everyday for me.  Today I just enjoyed Eliot while we cuddled on the couch.  The peace was there during that.  I don't want to 'get better', I will never be 'better'.  I am a different person now.  That's just the way it is.  All I want, is to feel at peace.  God bless you and I pray for you to feel the peace too.

Next post: Stella's Story Part 4: To Donate, or Not to Donate - our journey through deciding to donate Stella's liver.

Stella's Story Part 3: Preparation

     After we found out Stella's diagnosis, we were in a state of shock.  We couldn't believe what was happening and that is was happening to us.  We had never heard of anyone going through with a pregnancy that would outcome with a baby that would die.  It was a no-brainer for us that we would go through with it, but we were unprepared with how to deal with the situation.  I am a self-proclaimed nerd.  When something new comes into my life, I research it until I feel I have mastered the subject.  It is the way I have always been.  I poured over books from the library and visited more websites than I can remember.  What I remember seeing, or not seeing rather, is what I was going through.  Oh, there was a site that had similar stories of women going on with their pregnancy when their baby was diagnosed with Anencephaly, but it wasn't really all that helpful.  It was 'nice' to realize that we weren't alone in our journey, that others had gone through it before us.  What the sites didn't do, and what we were looking for, was what did we do in the meantime?  What should we do while we wait for her to be born, or God-forbid, die in the womb at any moment?  Those sites had a few suggestions which got the ball rolling for me to do a lot.  I found myself making lists, another thing that I always do, to determine what I wanted done before Stella's arrival.  I became so determined to give her everything that any other child of mind would have.  I had tunnel vision and searched the Internet and books for countless ideas of ways to memorialize Stella. 
    The first thing I decided on was that Stella should have the most beautiful dress any little baby girl could ever have.  I then realized that, because of her condition, I would also have to find the most beautiful bonnet, or hat for her too.  Every store in town was searched for the perfect dress but I ended up finding a dainty, lacy, dress and bonnet at a consignment sale.  I buy all of Eliot's clothes at those sales so it seemed only fitting that I would find hers there too.  I found pale pink tights, lacy pink shoes, a pink hand-made knit hat and booties as well at the sales.  I felt that God had put all of these beautiful things right there for me to find.  I wanted the hat and booties because I had taken a picture of Eliot in a blue hat and booties and, of course, I felt that Stella deserved the same.  Another piece of clothing she had was a onsie that Eliot had decorated before we knew she would be a girl.  He drew all over the front and we wrote on the back "Welcome to the world.  Love, Big Brother Eliot".  He was so proud of that onsie and it was the first thing that she wore after she was born.  I had a blanket that my Grandma Wiese had knitted for me when I was a baby and I had always wanted to give it to my daughter.  My awesome cousin found an in-law family member of hers who could knit and had two small versions made for me. One of the blankets went with Stella in her casket and the other we have here, just for her.  It made me feel so much better to be able to give a blanket to her for her very own.  The hardest thing for us to buy was the outfit for Stella to wear at her funeral.  Luckily we went shopping around Easter time so there were plenty of little white dresses for us to choose from.  Jordec found the perfect one and he made the comment that he wanted her to wear white because it reminded him of the wedding dress she would never wear and that he wouldn't get to walk her down the aisle.  Imagine that conversation in the middle of Target.  I am still surprised to this day that I didn't break down and bawl right there.  I had never even thought about that before but obviously Jordec had.  It was just another reminder of her future that we lost with Stella's diagnosis.  My Mom and I made a special blanket for Eliot.  My Mom embroidered 'Eliot & Stella' with a heart under their names.  He loves it and calls it his Stella blanket.  We gave it to him the day Stella was born as a gift from Stella.
      I wanted many things to have around after Stella passed to help keep her memory alive.  I had, and still do to some extent, a fear that she would be born, die and then people would forget about her.  I thought that if I had lots of stuff around, it would be harder for people to forget her.  The first thing I wanted was an engraved locket that I could put a picture in and, if she had hair, a lock of her hair.  I also wanted a special box to put her hair in and finger nail clippings.  That may sound odd to people but I just really wanted pieces of her to always be close in case I wanted to touch a physical part of her.  I received a gift of a fingerprint charm kit to make a necklace out of later.  I had a bracelet engraved for her to wear with her name on it from Jordec and I, and a delicate angel charm.  Another physical thing that I wanted of Stella's was her heartbeat.  I had a bear made at build-a-bear and had a recording of her heartbeat put in it.  I can hug that bear, with an embroidered pink shirt with Stella written across it in my Grandma Schaecher's blue, and hear her heartbeat.  I love to hear that thump thump, it's so alive. 
       We arranged for a priest to come and do the baptism in the OR and he gave a wonderful prayer before we went to the OR.  We had Stella blessed a few times while she was in the womb and we had a rosary blessed for her to take with her in the casket.  We got in contact with the hospital and got everything set up there with a committee of people to help make Stella's life as great at they could for her, and us.  I must have emailed them at least a dozen times.  I found a suggestion on one of the websites for a birth plan in these situations as well.  My best advice is to leave nothing open to assumption.  We requested a CPAP machine to get Stella to start breathing if needed and I believe that was the difference between her breathing for two hours and not breathing at all.  I think our plan was about three pages long.  I figured I would ask for as much as possible for what I wanted and, thankfully, everything we requested the hospital was able to do.  I can never thank them enough for being so compassionate towards us all.  We met with the group of people a few weeks before Stella was due to make sure we had everything set up the best way we could for her arrival.  I highly recommend getting in touch with the hospital early on to determine if they can accommodate what you desire.  If not, go elsewhere if possible, or try to get someone that can help you get what you need.  If anyone wants me to post our birth plan, just comment so on a post and I will do that.   
     We contacted Now I Lay Me Down To Sleep (NILMDTS), which is an amazing organization that has professional photographers who take pictures of babies that are expected to die.  Our photographer was a wonderful woman named Angel and her pictures were beautiful.  We also had a photographer who was affiliated with NILMDTS who did a maternity photo shoot for us a month before Stella was born.  We weren't sure if Stella was going to be born alive and we wanted to have pictures taken while she was alive.  Even though you couldn't see her in the pictures (obviously), it meant a lot to us to know that she was alive in those pictures, kicking away.  We also arranged for my cousin to take pictures too.  We figured we could never have too many pictures and we didn't want to miss an single moment of the day.   
     We had some family bring by a Stella de Oro lily for us and planted it our yard for us.  It bloomed for the first time on the day Stella was born, one perfect flower.  We discovered Stella's name everywhere.  Jordec started drinking Stella Artois beer, which we called Stella beer.  We received a blanket and a lamb from Prenatal Partners for Life.  They also sent us a wonderful CD with a song that explained exactly what we were going through.  I put the lyrics in a previous blog.  I was so worried that we wouldn't receive the typical things like blankets, so my mother-in-law got a us a beautiful blanket that I sleep with sometimes when I really miss Stella.
    Every day I was working to get something done before Stella arrived.  I felt that this was the way that I could provide and parent her.  I knew that during her short life we would just be loving her so I used this time to get all of the 'stuff' ready for us.  As Stella had a high chance of being born early, I didn't want to have to worry about something not being done.  I am a planner by nature and I like to know what is going to happen when.  With Stella possibly coming early, possibly dying in the womb, and not knowing how long she would live, I was forced to let go of that control and so by planning the 'stuff', I felt that I could take back some of the control in the situation.
     We started planning her visitation and funeral before she was born.  I knew that I would be recovering from a surgery as well as the death of Stella and I didn't think I would be able to make those decisions at that point.  That was one of the best things we could have done because the time between Stella's death and her funeral was a week and it was still packed with recover and plenty of stuff to do.  I must have worked on the program for her funeral everyday for two months.  I kept tweaking it and adding things, then taking other things away.  I just wanted it to be perfect.  I didn't want to have any regrets about anything.  I had my Mom talk to the funeral home because that is just one thing that I didn't think I could do.  It made it too real and I wasn't ready to talk to them until the time came closer to Stella's arrival.  Mom talked to them and I emailed a few times.  We got the basics figured out pretty easily.  It was hard to see the small casket online but that was nothing compared to when we saw it for the first time in person.  We had to guess how big Stella would be to figure out what size to get.  That was really depressing and something I hope I never have to do again.  I then also had to email the priest, figure out songs, readings, and who would do what for the ceremonies.  In a lot of ways it was like planning a really sad wedding.  Almost all of the same elements were there: ceremony, flowers, reception, food, etc.  We picked out and ordered flowers to put on her casket at the grave site and to go on either side of her casket during the ceremonies; we found a different flower with Stella in the name.  My nephew and us had silicone bracelets made with her name on one side and 'Remember' on the other side.  We handed them out at the funeral for people to wear.  Another nephew arranged for pink and white balloons to be released at the grave site after the ceremony there.  I also made a CD with many songs that helped me through and we played it at Stella's visitation.  I now listen to that CD often and it makes me think of Stella and it is still very helpful. 
     All of these preparations we did might seem a bit much to some, but I am so grateful I did them.  I got to parent Stella by preparing for her arrival as best as I could.  When she arrived, all I had to do was love her.  The decisions were already made so there wasn't anything extra to stress about.  The hospital knew what we wanted so they didn't have to ask me questions the whole time, my family knew what we wanted so they were helpful instead of bothering, Jordec and I knew what we wanted too.  I have no regrets about Stella's arrival.  She was welcomed with joy and love.  She died surrounded by love.  We have tons of pictures to remember her.  I am as happy as I can be about the situation.  I highly recommend preparing in some regard as it does give you that sense of control in an out-of-control situation.  Feel free to comment with any questions.  Good luck and God bless.