Thursday, May 29, 2014

Stroll for Strong

Annie, Elliot and Mama at our first Stroll for Strong

This Saturday our family is participating in the Stroll for Strong to raise money for Golisano Children's Hospital. This will be our third "Stroll" and I am sure there will be many more in the future.

It's not an easy thing for Stephen and me. Anything connected to the hospital, whether it be an appointment or simply driving by, is emotionally complicated. It is both our home and our heartbreak.

Every year we feel edgy leading up the the walk, and there is always an emotional encounter that day which resonates afterward, but we also leave feeling grateful that we went. This year, however, I wasn't sure if I was up to it. I thought maybe we would send a check instead. I approached Anneliese to discuss it since she had been talking about the Stroll for months. Her answer? "OF COURSE we are going to go! We ALWAYS go and we ALWAYS will!"

She is right, and once again we will put aside what would be easier emotionally to do what is best. I imagine on Saturday we will be overwhelmed with emotion again. Grateful by the support from friends and family who join us, humbled by the generous donations raised in Natalie's honor, and of course the overriding feelings of love for our daughter and the pain of losing her. We will go to bed Saturday night relieved, blessed and with resolve to go again next year.

If you would like to help support Team Natter's efforts this year there is a donation link on this page. Donations to our team support the pediatric palliative care department. The term "palliative" brings to mind end of life care, but really they do so much to improve the quality of life for young patients.

Natalie benefited from their services during her life. The pediatric palliative care team helped convert her IV pain meds to oral doses so that she could have relief from IVs, which were always a challenge on her small body. It seems like a simple thing, but when your child has gone through hours of IV attempts only to have the successful IV stop working that same day, you will cry from relief at having her meds given orally.

Our family, and many other families we have become close to, benefited from bereavement services provided by the palliative care team. This helped us tremendously in the aftermath of losing Natalie and we hope all families who are facing impossible loss can do so with help of loving professionals.

If you would like to learn more about the pediatric palliative care program at GCH this is an excellent article here.

We appreciate any and all support, even simply kind thoughts and prayers on Saturday.

Much love!

Sunday, April 21, 2013

Rembering favorite books

“If you become a mountain climber," said the little bunny, “I will be a crocus in a hidden garden.”

“If you become a crocus in a hidden garden,” says his mother, “I will be a gardener. And I will find you.”

“If you are a gardener and find me,” said the little bunny, “I will be a bird and fly away from you.”

“If you become a bird and fly away from me,” said his mother, “I will be a tree that you come home to.”

The Runaway Bunny by Margaret Wise Brown

Always, always, Natalie, Mama finds you, and you come home in my heart.

April 21, 2013

Today Natalie Evelyn would be three years old. Dark haired little girl with dimples still on her hands. I think of how perfect it would be, Natalie and Elliot so close in age, best friends, bridging the gap between Annie and her baby brother. Annie with the sister she longs for and us without broken hearts. Being able to parent in a far less complicated way, without the burdens which sometimes leave us feeling apart from other families. Wishing we could carry the feeling of building a family easily, to not carry this grief, to watch your children grow and not have the best moments in life come with the bittersweet. To live our lives not carrying the traumas of six months in an intensive care unit, not holding the burdens of the decisions we made and the wrongs we can not make right. Knowing what is it like to share a space with all your children and take it for granted.....But even more so, Natalie being able to reap the rewards for all that she endured. Giving our daughter everything we promised, watching her grow. Making the fight worthwhile, just as we promised. Natalie celebrating a birthday, Natalie being here, Natalie being 3 years old.

No matter how much time passes we always see where she is missing, and that loss is felt in ways you can only know if you have been in these shoes. The reality for our family is that it will always be a bit broken, incomplete, a bit different.

Yesterday I was making small talk with another mother at the Y. She asked how old Elliot was, and I asked her child's age. He will be 3 this week. The rest of the evening I glanced at him and felt that longing that has no end. These little landmines are everywhere...playing happily at the children's museum when another mom calls out "Come Natalie, it is time to go." Fighting tears and trying to put myself back together again. Shopping at Gymboree when another customer starts detailing the NICU journey of her grandchild. Setting down my purchases and trying to get out of the store before panic sets in. It is our normal now, being vulnerable.
A few days ago I took Annie and Elliot to the cemetery. This was the first time Elliot had been there and been free to walk. Just as Annie had when she was 3, he looked at all the headstones and thought he had stumbled upon a toy garden. Anneliese ran off to the clearing where she loves to play, and I tended to the headstone while trying to keep Elliot  in check.

Annie comes back, bends down and talks to her sister. She misses her and wants her back. I tell Elliot this is where sister Natalie is buried and he looks confused. The only sister he knows is named Annie.

She kisses her hand and touches it to Natalie's name. I do the same, and Elliot watches. He bends at the waist, nearly losing his balance, and places both hands flat on her stone. He kisses it and stands up with a smile on his face.

This is our family, and I hold them close.

April 21, 2010

At first I did not have the time, then I did not have the courage to write Natalie’s birth story. I felt the blog was incomplete without it, so last night I wrote what I most remember.

Steve and Anneliese came to visit on the 20th. I remember the shirt I was wearing; it is the same one I wore the day she died. I sat in the recliner holding Annie and thinking I should take a picture of my belly. Then there was the usual hurried energy of Steve needing to get Annie home to bed and I thought I would do the picture tomorrow, all while thinking it may be too late.

It was good fortune that my overnight nurse was one I especially loved. There was a student nurse as well, and the three of us chatted at my 3 am vitals check. In the last weeks of my pregnancy I found sleep especially difficult and was often awake until 3 or 4.

All was well, and I tried to fall asleep. I went to use the rest room one last time, and what had been minimal spotting was now enough to be concerned about.

(because there was so little amniotic fluid my uterus could not hold its shape the way nature intended. this leaves the mother very vulnerable to the placenta pulling away and leads to blood loss)

I called the nurse, there was the usual response of finding a doctor to check me, although I do not remember much of it. Mostly I remember feeling out of control and calling Steve in a panic. He was going to find someone to watch Annie and come in. Maybe it was 5am? They were moving me to labor and delivery, which we had already done several times during my time there. Nothing different this go around, yet my nerves were on edge.

I remember that the nurse I trusted most to do my IVs was there, just coming in for day. So relieved at yet another stroke of fortune. Actually all my favorite nurses would be working over the next few days and I will always be grateful for the timing of her birth.

Moved to labor and delivery and started the normal drill of being monitored. The contractions were picking up and it was getting harder to breath through them. Steve arrived. The nurse asks if I want an epidural for the pain, and I thought it absurd. The contractions were going to settle down as they always did, I would be back in my room by evening.

The resident is checking again, and can not tell if there is dilation, but she estimates at least a cup of blood. I remember now that there had been so much more bleeding than ever happened before.

The OB comes in, and she is one I trust and adore. One more bit of fantastic good fortune. She says it is go time and I lose my control. I sob, I can’t catch my breath. She says she is sorry, she thought I already understood this would be it, but I am not ready. She asks if we want to wait a few hours and see what happens, but there is no point. We are never going to be ready, and it is only days before the scheduled delivery. The bleeding is picking up and I am afraid of both waiting and moving forward.

I look at Steve and say I want to decide her middle name before we go in. He agrees to Evelyn and it feels just right.

I know I asked for the chaplain to come, and almost instantly two gracious women arrive, we talk, we pray, they tell me when she is born they will stand in the back of the room and pray while the doctors work. I don’t know it, but they will spend hours with me in the months ahead, helping us move through time in unbearable uncertainty.  I meet the anesthesiologists. They are saviors, they protect my RSD leg and arm, they are not emotional but they are competent and make me feel secure.

I learn later that the OB had to explain to the labor and delivery nurses why my reaction is so emotional. That unlike other 33 week old babies, Natalie’s future is very uncertain.  (We had been told as low as 5%)

Our first neonatologist comes in. They have been expecting Natty for months and this doctor in particular had spent a long time talking with me in the last week of bed rest. I had asked her to attend the delivery, which now I know is unusual-the delivery team of fellows, residents and nurses is as equipped as a team can be and the attendings have more pressing concerns. Somehow I felt having a neonatologist right there would give her the best possible chance. The doctor is kind, and she agrees to be there.

I take her hand, I say “Listen, when she is born, when you see her, her name is Natalie Evelyn.” She looks surprised and says “I thought you were not going to tell the name until she was born!”

“Yes,” I answer, “but when you meet her I want you to know exactly who she is.”

 The OR, and this bright white room whose image is stark in my mind. The doctor asks if I will want to see her when she comes out. I say yes. Thinking to myself, of course!

We have been given several scenarios of how things may go...

She will be born with a chest that is visibly deformed and there is no chance of lung development. If this is the case they will provide comfort care and try to keep her alive until we can hold her.

She will be born and need extensive resuscitation. Despite those efforts she may never turn pink, never come around.

She may respond to their efforts and turn pink and vigorous. Then within an hour her first blood gas test may reveal that while she can oxygenate her blood she is unable to release the CO2 and she will not survive.

We have read so many stories from other parents. Particularly difficult were the times a baby oxygenated well, had great blood gases and then after 8 hours their lungs proved to be too rigid to keep up and the baby suddenly dies.

They place the spinal, despite my phobia of needles in my spine I don’t register the fear or discomfort. I drink something to reduce the acidity in my stomach. Minutes have moved quickly once the decision to deliver was made. I don’t know how I moved through that time and endured it.

I had wondered for months how I would survive her delivery. As much as I tried to prepare, in truth there is no way to prepare for meeting your child and not knowing if she will live or die. Somehow, I keep moving forward, keep following instructions. I am learning and learning that for your child you can do anything.

I am holding her inside; I have done more than anyone knows to keep her safe, protected from possible infection, trying to hold on to give her as much time as possible. Constant and steady.

Now I have to let go. I can no longer breathe for her. It is, up until that point in my life, the hardest thing I have ever done. I am letting them place her in harm’s way. I have no choice, yet I feel I am failing her deeply. All this time in the OR I am screaming silently in my head-begging them to stop, begging to be let back to my room so I can place my hands on my belly and be alone with my daughter.

Steve is on my left. The doctor has reached her and says “Oh, Jennifer, we made the right call. She is surrounded by a massive blood clot. They pull her free, lift our child up and clamp the cord. Natalie squeaks. I know it is at least twice. Then she is in the other room and Steve follows.  

He tells me she is pinking up. The neonatologist comes out, tells me what has been done so far, and her eyes crinkle above the surgical mask. She is smiling, Natalie is pink, she responded well to the surfactant, she is vigorous.

In my mind I am so acutely aware. I know this is the start, and it is exactly the best start we could have been granted.

Steve comes back and forth between his wife and his daughter. The chaplains come to speak to me. They tell me how strong she is, how beautiful.

The OB is talking about my uterus, it won’t contract the way it needs to for the bleeding to stop. She is massaging it, telling them to give me a shot to make it contract. He gives me the shot, and then maybe one more later. I am vaguely wondering if I will need a hysterectomy, if I will hemorrhage. I don’t care.

I am vigilant. My mind is so aware of my girl, always always always aware, monitoring, thinking ahead, trying to hold on to what there is. This is my life for the next 6 months. No matter where I am, what I am doing, my mind is with my daughter, always aware of her.

And now she is next to me, on her way to the NICU. Do I want to see her face? They pull the oxygen mask away for a few moments and we are on the moon. She is exactly as I imagined her to be, exactly who I knew was inside me. And she is pink. And moving.

Steve goes to talk to family. I am being stitched up, the anesthesiologist is remarkable and somehow knows just what I need.I am surrounded by people yet feel very alone, another feeling that will continue in the months ahead.

When Annie was born I held her on my chest and Steve walked beside me as we went to the recovery room. This birth I am alone. I remember one of my favorite nurses coming to sit with me, and I hope I told her how much that meant. I’ll never forget her kindness. She had tears in her eyes, and this is the first of the emotional responses to my incredible daughter’s incredible birth.

I am waiting....waiting for the CO2 results. Oh, if I had known. If I had known how these numbers were going to come to rule our lives, that this was only the first of hundreds.

But today, on her birthday, her CO2 is just what it needs to be. These lungs that have been the center of our world for months are going far beyond what anyone predicted.

I am wheeled by family on the way back to the room. There is joy. Annie sees me and doesn’t understand why she can’t come be with me. Her hysterical crying as I am being taken is one more piece of my heart being broken, of hating not being in control.

Steve and I sitting in my room. Natalie’s name is written on the white board, along with the number to the NICU. We are saying “it’s been 2 hours. 2 hrs 40 minutes. 4 hrs” We are waiting, because as much as we have been delivered a miracle we know there is no promise yet.

I am waiting to feel my legs so I can make the trip to the NICU. After 70 days of being an inpatient, I want to pull out the IV, pull out the catheter, get dressed and lock the doctors out of my room.

Being there the first time, taking pictures. Reaching in to touch her hand. She resembles her sister Annie so much, yet is her own. When we post pictures everyone will comment on how big she is, but in person my 4lb4oz daughter is as small as a baby doll.

We meet the fellow (neonatologist in training) who will be our touch point of the next few months. I immediately trust him and love his energy.

They’ve done chest x-rays. Her lungs look only slightly smaller than normal. Her blood gases are wonderful, her vent setting are going down at a steady rate. He predicts she will be on C-PAP overnight.

The neonatologist is glowing. “We do not anticipate her having more issues than any other 33 weeker.”

I can’t process this. I am making them repeat things, some laugh at me in the way you do when there is such joy.

The pride on my husband’s face. The way he looks at her, the way he talks to her, the way she has taken his heart. The nurses and doctors coming into my room to congratulate us. The palliative care doctor stopping in, and the smile on his face. How grateful he is too witness this incredible outcome. I am in awe of our miracle yet remain vigilant, watching for any threats to my daughter. I don't know when I will ever feel safe.

Steve stays in my room and I feel so grateful to be close. After being apart and carrying our own separate  breaking loads of stress, I had worried where we would find our marriage. Natalie arrives, and we fall right back into place as we have always been.

Waking up at 3 am to pump, and the NICU has just called. She is on C-PAP. The neonatologist tells me “it is just like that dream you had, just as you predicted”

All that April 21st held for us in 2010 lives in our hearts always. We are grateful for these memories, grateful to have been part of Natalie's journey. It is sacred.

Saturday, April 21, 2012

Natalie's Second Birthday

I could not let the day pass without coming here.

What can I say? We miss her. We miss her so very much. The longing never ceases. My arms ache for her as much today as any other. It is an unreal and unfair thing to stand at your child's grave on a day when you should be putting candles in her cake. To tie balloons to her flag post there rather than tie one to her wrist and watch her delight.

We are in a very bittersweet time. Thrilled as Elliot and Anneliese grow and thrive, all the while wishing we could have our three children together, that Natty could enjoy all that her siblings do.

I meant to write her birth story today but find it is too hard.

Today I remember her tenacity. Her strength that went beyond what I have ever known in another person. Her love of staring at The Very Hungry Caterpillar and her beloved Sophie giraffe. The joy of her holding my finger, the protectiveness of placing one hand on her head and the other on her bottom, trying so hard to infuse her with my love. Never once taking that touch for granted. Always knowing how blessed we were to share our lives with Natalie. Today I am remembering everything her birthday brought us, and trying so hard to see that day without also seeing all that was to be taken away.

                                      Thank you for all that remember Natalie Evelyn and love her still.

                                Happy second birthday to my second child, to one of my greatest loves.
                                                    i carry your heart(i carry it in my heart)

Sunday, October 16, 2011

My Child Died Today

I lost my child today
People came to weep and cry
as I just sat and stared, dry eyed
They struggled to find words to say
to try and make the pain go away
I walked the floor in disbelief
I lost my child today.
I lost my child last month
Most of the people went away
Some still call and some still stay
I wait to wake up from this dream
This can't be real, I want to scream
Yet everything is locked inside
God, help me, I want to die
I lost my child last month.
I lost my child last year
Now people who had came, have gone
I sit and struggle all day long
to bear the pain so deep inside
And now my friends just question Why?
Why does this mother not move on?
Just sits and sings the same old song
Good heavens, it has been so long
I lost my child last year.
Time has not moved on for me
The numbness it has disappeared
My eyes have now cried many tears
I see the look upon your face
"She must move on and leave this place"
Yet I am trapped right here in time
The song’s the same, as is the rhyme
I lost my
--Netta Wilson, written in memory of her daughter Caprice Cara Wilson, who was killed in an auto accident (December 2, 1968 - November 20, 1994). Printed in the newsletter of The Compassionate Friends, Atlanta, May-June 2001

It has been one year since we lost our Natalie Evelyn. Intellectually I know this time has passed. I sit here with a 6 week old son, so clearly she did not die last week. Yet my concept of time is convoluted. All at once she was just here yesterday and gone for an eternity.
There is so much I want to say but the words just aren’t coming. I miss her. I miss her in a way that can break me in a thousand pieces. I am still learning how to live with this loss. Learning how to move myself and my family through unspeakable pain and towards more solid ground again.
I wish I had beautiful things to say here about grief and loss. I wish I had some wonderful philosophy that has pulled me through and tied a nice neat bow on the experience. I just don’t. A year is just not enough time to adjust to living without a person you hoped to have a lifetime with. I am still finding my way here and imagine that will be the case for some time.
We have had difficulty trying to plan a way to mark this one year anniversary. Her birthday was easier in a way-it marked her entry into the world and was something to be celebrated. This, though, is so very different. Facing those memories is so intense and leaves us wrung out. We have learned that there are times in which we grieve better privately, but still think of all those who love Natty right along with us.
If you would like to help us remember Natty, it would mean so much if you would consider performing a random act of kindness with her in mind to mark this anniversary. I would love if some happiness could go out into the world at a time when we are filled with so much pain. I think of how much light Natters brought to the world and how much more I know she would have blessed us with if she could have stayed. I suppose this would be a way to bring some of the brightness back.
Thank you so much for being here and caring about our sweet baby girl. Thank you for knowing Natalie.

Saturday, October 15, 2011

little brother

Two months after Natalie passed away we found ourselves with an unexpected pregnancy. We had talked about adding to our family but planned on waiting until we had some time to get back on our feet emotionally.

In reality, I would probably be long into menopause before I felt emotionally ready to take on another pregnancy, so in retrospect I am grateful that we were caught by surprise.

It is hard to explain what this was like-hoping to welcome a new life all while reeling from the loss of a beloved child. After my miscarriages all I wanted was another baby. After losing Natalie all I wanted was Natalie. It was hard to imagine making room in my heart for a new person. Some things worked themselves out easily on their own-the first time I saw this baby move on an ultrasound my heart jumped and I thought "well, of course I am going to love you!" Other aspects of being pregnant remained a struggle to the end.

Frankly the pregnancy with Natalie left me feeling traumatized. The idea of living with that fear and vulnerability again was overwhelming. This was my 5th pregnancy and I had one living child. I no longer looked at a positive pregnancy test and trusted that we were having a baby. I could no longer think of a rare complication and trust that it would not happen to me.

Every pregnancy milestone was an emotional battleground for me. I can not say that I spent those months in a happy, peaceful glow. Emotionally I was curled in a ball with my hands over my ears and my eyes squeezed shut. I was just trying to hold out and reach the end, hoping that we would have a little one to bring home. I could not relax and look forward. Talking about the pregnancy set me on edge and I had a hard time sharing the news.

We waited several months before telling Annie. She had been asking daily for another sister so I knew she would be excited. The night we told her she was just thrilled. It was bedtime and she went from sleepy to hyper instantly. I stayed up late with her while she paced the floor and made plans for her new sibling. So much of what she said mirrored her plans for Natalie and it was bittersweet hearing her make those plans for someone else.

When she finally crawled into bed she became quiet and stared into space. She said "Mommy, I don't want the baby to be sick.....I want the baby to come home." I told her that I know, I want the baby to be healthy and come home, too. It broke my heart that at 3 years old this is what she has to worry about. Her biggest worry should be having to share her toys, not worrying if the baby will live.

We were so fortunate that emotions were our only complication this pregnancy. Baby Boy Teegarden was very well monitored the entire time and he thrived. He does have bilateral club feet, but after all we have been through it was a small concern. Certainly I wish he did not have to endure the treatment, but I also have a whole new perspective.

On August 31, we welcomed sweet Elliot. He has been a wonderful addition to our family and is dearly loved. He clearly resembles both of his sisters and has traits that are just his as well.

And now here he is.....

At one day old

As he is now at 6 weeks old

With his adoring big sister