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!

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 20^th. 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 21^st 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.

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)

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 child.........today

--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.

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

Natalie's Birthday

Natalie Evelyn Teegarden on the day she was born

here is the deepest secret nobody knows
(here is the root of the root and the bud of the bud
and the sky of the sky of a tree called life;which grows
higher than the soul can hope or mind can hide)
and this is the wonder that's keeping the stars apart

i carry your heart(i carry it in my heart)

ee cummings, who had the words I fail to find

The I Know Natalie Fund

We have spoken to the kind people at Golisano Children's Hospital and have established "The I Know Natalie Fund" in an effort to raise money for the NICU that cared for Natalie. We are trying to raise enough funds so that Natalie may be permanently memorialized in the only home she knew.

All donations can be made payable to Golisano Children’s Hospital. Please include a comment on the memo line of the check or a separate note indicating you would like the donation to be included in the ‘I Know Natalie Fund’ or made in the memory of Natalie Teegarden. You will receive notification that your donation was received and a tax id number.

The address for donations is:

Golisano Children’s Hospital

300 East River Road

Box 278996

Rochester, NY 14627

We can not thank you enough for considering making a contribution in her memory. The NICU was our home away from home and we know how much they will benefit from any money raised.

As for us, I keep telling myself to put one foot in front of the other. The trouble with that philosophy is first you have to get yourself back on your feet to begin with. I suppose that will take time and work on our parts. We will never again be the people we were before Natalie and now we need to figure out who exactly we are without her.

We appreciate your continued thoughts and prayers. This is of course a very difficult time for our family and we do appreciate all the ways you've reached out to us.

Services

I wanted to share some photos from her service as well as the eulogy I read. I am not up for writing anything else right now but thought those who could not attend might appreciate knowing what was said.

Also, thank you so very much to everyone who has been taking the time to send "I Know Natalie" postcards and notes of condolences. We have been reading them together each night and it gives us more comfort than you know.

Flowers from Mommy and Daddy

Flowers from big sister Anneliese

Some of her special items

Photo displays

Natalie Evelyn Teegarden left us a few days shy of her 6 month birthday. That may not seem like a life long enough for a eulogy, but there is more to say about this wonderful child than I can ever get out at once.

September 24^th of last year I was filled with anticipation and despite Annie being cranky for lunch took a pregnancy test. I carried Annie and the test downstairs. It was in the stairwell that I saw a very pink line develop and knew that we had a baby on the way. A very wanted baby.

From that moment, we have been Natalie’s parents and every day since have based our decisions on her best interest. I was as cautious as I knew how to be. Sometimes, despite your best efforts, a body can fail. Mine did and Natalie lost the amniotic fluid she needed to grow healthy lungs.

Sitting in the doctor’s office, leaning against Steve I could not accept this. I knew it was serious but somehow trusted our baby could make it. If it was at all possible for our child to survive we would fight on.

Natters was always a tenacious child. In her ultrasounds we saw a powerful heartbeat, strong growing limbs and adorable mannerisms. It is impossible to not fall in love with your growing baby, even when everyone around you warns that she may not stay. As terrifying as the pregnancy was, we did our best to treasure that time with Natalie. We knew it may be all we had.

She accompanied us on wheelchair rides, was there when we decorated Easter eggs and her sister snuggled up against the bump of Natalie for movies and stories. I read to both my girls and loved having them close. Those are memories I will always treasure.

While on bed rest, Natters was my constant companion. My buddy. My belly was not the big round one I had with Annie, but I could not keep my hands off her. I focused on every movement, took in each heartbeat check. We developed certain habits-her foot pressed out against my right side and we had a game of pushing against one another. While I was sleeping, she would relax and spread her limbs out, then startle when I first spoke or moved in the morning and curl herself back up in an instant. When I showered, one of the few bits of time I was out of bed, I would rock back and forth, trying to mimic the rhythm I would one day rock her in a chair with.

If I could, I would have kept her inside until she was ready for kindergarten. As difficult as bed rest was, I would never be ready to send her out to this world where I could no longer breathe for her. It was one of the hardest things I have ever done, going into that operating room not knowing. Yet Natalie was born squeaking, if not crying. She rallied quickly and far exceeded everyone’s expectations. The exuberance of that day is one I can never forget, yet is painful to look back on. It was so full of promise that has since been stripped away. Despite all predictions, Natalie was born with lungs to live on. I believe that with all my heart regardless of the fact we ultimately lost her.

I am not going to detail the many obstacles she fought her way through. Natalie is not a medical case, she is a daughter, granddaughter, sister, niece, cousin and her own person. We did not get a lifetime to know her, but we will never forget all the things we learned while she was with us.

Natalie knew what she liked and what she did not. She was rarely up for compromise and mostly got her way.

Natalie loved being on her belly. She loved having hands placed firmly on her back, and as she grew older she would relax as we rubbed her back or patted her with face masks. She also loved having a hand cupping her head and eventually liked having her hair stroked.

Natalie absolutely hated being wet. I think the words “Natalie loves her Lasix” must have been uttered hundreds of times in her room as she was relieved of soaked diapers. This always amused me, as her big sister was the opposite and could have sat in a wet diaper for a week without complaining.

Natters had comic timing with her diaper changes and many times surprised her father and nurses mid-change. I have never seen one baby go through so many blankets. This secretly pleased me as doing her laundry was one way I felt a bit of normal parenting. I never had the pleasure of handling one of her explosions, but I do have a great memory of her peeing all over me while we did kangaroo time.

Natalie loved being snuggled in by “Freddy Frog” positioners and sometimes had as many as eight surrounding her. For a baby who rarely had the freedom to be held, she was a snuggle bug and enjoyed the feeling of being wrapped up. She did settle down when swaddled, but since she tended to be a hot baby did not get to enjoy the sensation nearly enough. I loved wrapping her up into a little burrito and seeing the relaxation on her face whenever we did get a chance.

Natalie loved holding fingers. She would grab on, sometimes holding still and sometimes waving her arms and taking your fingers on a ride. We have wonderful memories of each of us holding one of her hands, standing on opposite sides of her and soaking up the sight of our beautiful daughter. I may not have mentioned it, but Natty was an exceptionally gorgeous child. Sometimes we had to ease our hands away when it was time to go. This could take several attempts, as when she realized your finger was gone she would search it out again and become agitated. We would sometimes have to do quick changes of hand to relieve one another for breaks.

Natalie loved music. She mostly listened to classical, and would move her fingers as if playing a piano. I always saw her as becoming a musician and fantasized about far off recitals. Natters even enjoyed my singing, which we did not get to do often enough for lack of privacy. “You are My Sunshine” and “The Rainbow Connection” were two of her favorites.

She loved having her hands as playthings. Sometimes she would keep herself awake for the sheer joy of stroking her cheek. Those same hands would sometimes jab her in the ear and make her cry, but like all babies her age she never realized she had done it herself. Natalie loved exploring the different textures of her special pink booties and security blanket. I remember the first time her nurse placed her naked legs on the silkiness of the blanket and how she kicked with vigor I had never seen before.

Any of these new sensations and experiences were wonderful to observe. She was sometimes given just a taste of milk on her tongue or lips and we loved watching her respond and investigate.

Natters was starting to work on a real social smile. I saw many, many smirks after her trach, but only one small smile she flashed at her grandfather. She did have brilliant smiles while sleeping….smiles so radiant I felt once she unleashed them while awake we would all be at her mercy.

She did not care much for the equipment that was attached to her face. Natalie had quick hands and could do a sneak attack on her ET tube faster than you could respond. Sometimes she liked to just rest her hands around the tube, but that was too risky. One nurse had the ingenious idea of giving her a bit of IV tubing to hold onto instead. Nat would grasp the tubing, relax in her presumed victory and fall asleep. After her ET tube was removed she set her sights on the ND tube in her nose. At every opportunity she would hook her finger in behind the tube and yank. We marveled at how she knew to get at it.

Natalie had such bright dark eyes. When she opened them my heart skipped a beat. She was there. Despite everything she had endured, when you looked into Natalie’s eyes you saw her. And she saw you. Some of the last times I spent with her awake she stared at me as if memorizing my face. I remembered a story from another mama who thought their baby was remembering her face so she would recognize her in heaven. Natalie’s gaze was so intent and I hope that she did have us memorized as much as we have her engraved in our minds.

Natalie loved being read to and responded well to her “books on tape.” She also loved to look at the pages, especially The Very Hungry Caterpillar. Once when she was having trouble falling asleep I held the book up for her to see. She would finally drift off and I would lower the book, only to have her open her eyes again searching for the pictures. Our plan for Halloween was to dress Natalie as the caterpillar and Annie as the butterfly.

Natalie has a very proud and sweet big sister. Annie had been anxiously awaiting Natalie’s arrival before her birth. All along she has had big plans for Natalie-taking her to the zoo, teaching her to walk, letting her sleep in her room. Annie was able to visit Natalie several times in the NICU and always remarked on how sweet and cute “little Matawee” is. The last time we visited as a family I rocked Annie and we read Click Clack Moo Moo, Goodnight Moon and The Runaway Bunny. Annie then sang “I see the moon and the moon sees me. God Bless the moon and God Bless me” to Natalie several times. Annie is 3 years old, so understanding this loss must be so difficult….even as adults it is impossible to comprehend. She speaks of her baby sister throughout the day and we have had long talk about what has happened. The other night she told me “My brain send me messages and I send the messages to heaven so Matawee can read them.” I know she will continue to be a loving and devoted sister to Natalie in death just as she was in life.

I must also mention Natalie’s faithful companion Sophie the giraffe. A gift from her Aunt and Uncle, Sophie was always by her side. Natty was drawn to her dark eyes and spots which earned Sophie a permanent spot near Nat’s head. She made a wonderful mascot and

She left the NICU twice, once on the incredible day she was freed from the oscillator, and once for the incredible day she was freed from the ET tube. Both times she was alert and taking in the sights. Despite normally liking her world quiet and dim, when out in the hallways she wanted to see everything going on. She always knew when there was a change in viewpoint and we loved watching her face respond to new sights.

Natalie never grew up and away from us as children are supposed to do. In that way, we still had the mother/infant closeness where it is hard for me to know where I ended and she began. When I held her in my arms it was always like being put back together again. My missing piece was returned.

We had always known we were up against incredible odds, but Natalie had a way of rallying and fighting through obstacles few people thought she would manage. I think this gave us a sense that while the road would be hard, she would persevere. The day we lost her I did not walk into the NICU with any more fear than usual. Even as I saw her as sick as she was, I thought we would find a way through. Sometimes, despite your best efforts, a body can fail. Hers did. The body failed, but Natalie did not. She was more than her respiratory status, more than the nearly perfect baby that held her soul.

From pregnancy until the end I gave Natalie the same pep talk during our private time. The words never really changed, and when we had these heart to hearts after she was born it was clear she remembered and relaxed to the cadence of my speech.

“Natalie is a good girl. A strong girl. A fighter. Mommy and Daddy are not giving up, don’t you give up. People will tell you you can’t do things. They are wrong, don’t listen to them. This is the hardest thing you will ever do in your life, the hardest thing I have ever asked of anyone. It will be worse before it is better. But I promise you, I promise that we are right beside you. You are not ever alone. When I am not here, you are in my heart and always always on my mind. If you can get through this, I promise you that there is a wonderful life waiting on the other side. You are so loved and wanted. We will make this up to you. We will make this fight worthwhile.”

We will not have that chance. We did not get to shower Natalie with all the pleasures life has to offer. I had told her of chocolate chip cookies and ice cream, of riding on swings and playing with her sister. Snuggles without wires and the feeling of being outside on a warm day. All the simple things I wanted her to know. That is lost now and is a void that can never be filled.

The pain of losing our daughter is searing. It can bring me to my knees. It is impossible to understand. While there is no sense to this loss we want her memory and her name to go on. We want the spirit of Natalie to bring good things to this world. It was a place she deserved to live in, a place we will strive to make better because she no longer can.

When you think of Natalie, think of the baby whose eyes lit up the room. Think of the sweet soul who made so many people fall in love with her. She is more than what she went through, more than what she endured. Natalie Evelyn was a warrior and a charmer all at once. She is the strongest person we have ever known and I hope we can take strength from her example as we move forward.

We must continue on, but not past Natalie, not ever leaving her behind. She is coming with us, not in the way she should have, but in the best way we know how.

Balloon release at the cemetery

Details

There are things that we don't want to happen but have to accept, things we
don't want to know but have to learn, and people we can't live without but have
to let go. ~Author Unknown

First of all, your comments have brought such comfort to us and every time I see the words "I know Natalie" I feel so blessed. Thank you so very much for loving our daughter. Your taking the time to write us is appreciated more than we can say. We have reread the comments over and over and are always overcome with emotion.

The link for Natalie's obituary is on the funeral home website. You can find it here and here. It will appear in the Democrat and Chronicle tomorrow. There was a great deal of confusion surrounding it as I somehow attached the unedited version when I sent it in. By the time we were made aware we were 30 minutes from home and trying to pick out Natalie's clothes. There was no time to return before the deadline. Writing my daughter's obituary was a near impossible task so I suppose I am grateful that it is done at all. It would never have been perfect enough to match her regardless.

Clearly this is not a position we knew we would be in and there are many details to attend to. We are in the process of starting a non-profit organization called The "I Know Natalie" Fund. This requires the assistance of a lawyer and some time. Our intention is to collect money and provide a large donation to the NICU that was Natalie's second home. In the coming months we will be doing some fund raising efforts through the non-profit account as well.

Some of my dear friends surprised me today by setting up a donation site in Natalie's honor. Without us discussing it beforehand, they called the website "I Know Natalie." Great Snoogle minds think alike.

Thank you again for helping to hold us up. Losing Natalie hardly seems real yet at the same time will hit me with great intensity out of nowhere. I keep wanting to call the NICU for an update or drive over to visit her. Twice I have caught myself reading what others have written about her and thought how wonderful it will be when she can read it someday. Then I remember there is no longer someday. Our future is not at all what it should be. The first night I would not fall asleep because I could not face waking up and realizing it all over again.

There are a million things to say, and at some point I will share the story of Natalie's last day. Right now I don't know what to keep to myself and what to set in print. We are moving through this very strange process....as everyone says, you are not supposed to lose your child. Choosing a burial site is all at once precious, surreal and agonizing. These are some of the last concrete things we are able to do for her and we want it all to be the best it can. We have to find ways to endure the unendurable.

Saying Goodbye

Natalie Evelyn Teegarden passed away unexpectedly the afternoon of October 16th. She was in my arms and in no pain. I suppose that is the most one could hope for.

I so appreciate all the love and affection people have shown our daughter this year. Our family is blessed to be surrounded by the strength of others.

If I could, I would like to ask that when people share with us in the days to come that it is not suggested that there was a reason for her loss or that God needed her more than we did. Natalie was a very loved and desired child, she would have shared a wonderful life with us here on earth and that is all we wanted. Please forgive me my candor. It is just that I am broken in a million pieces right now and do not have it in me to nod along and agree when I do not. My child should still be here in my arms looking forward to an abundant life. I know it may be hard to find words, so please do not worry trying to find the perfect thing to say. What we need is to know that Natalie is loved, that she will be remembered and that her life meant something to others.

I have one other request. Over the past several months, we have been humbled and amazed at the people who knew Natalie, cared for her from afar and supported us. If you think of her in the coming days, please consider sending a postcard with the words "I know Natalie" to

Natalie Evelyn Teegarden
120 Parkwood Rd
Rochester, NY 14615

As I am here trying to make myself understand that she is physically no longer with us, I am so afraid that our daughter will be forgotten, or that proof of her life will not be known to others. It would mean the world to me to hold in my hands evidence that Natters is still in the hearts and minds of others.

Thank you thank thank you for never letting me think we were on this journey alone. I am so very sorry.

Boomerang

was nervous last night when Steve stayed at the hospital so late. I thought she wasn't doing well and he was waiting for her to stabilize. I worked up the courage to call for an update and Natalie was doing very well. Just during our conversation she went from 84% FiO2 down to 78%.

I called this morning and overnight she went as low as 60%. Wonderful. During the morning she was as high as 75%, but that was mostly when she was upset. The nurse mentioned that she was fussy and her temp was up (38.2). They thought she was agitated due to the new meds and attributed the temp to the agitation. Despite hearing that she was cranky this was the best update we've heard in some time. Certainly it was light years better than yesterday.

Her nurse called a few hours later to say that Natalie's temp was now 39.3. It has never been that high. Now they attribute her crankiness and the temp to infection. Blood cultures, urinary cath and culture, CBC, CRP......waiting to hear back on results. They are also going to take a look at her ears. I am very much hoping that she has a basic ear infection but know better than to get my hopes up. While she is going through all the unhappiness of being poked and prodded she is back at 100%.

It's Always Something

Nat, Natty, Natters, Baby Tee, Natalata-dingdong...Natalie has a lot of names she answers to. I sometimes call her Cassius Clay in honor of her fighting skills or Natalie Evelyn because I love her entire name. Now I am adding Roseanne Roseannadanna to the list as truly it is always something (oh, and I love love love Gilda Radner).

This morning I held my breath before I called. When the nurse answered I immediately knew things were not good just from the sound of her voice. She had spent an hour trying to get Natalie to saturate above 70%. They had just d one a chest film and were waiting for results. About a half hour later Steve called-the film was awful and we needed to go in. Luckily Steve's mother was available for babysitting.

When we arrived she was doing a little better but never got a chance to rest. This part of the day is a blur to me. She was still struggling with saturation and there were no answers. They did blood cultures, CBC, CRP and trach aspirates for viral and bacterial cultures. The X-ray showed big changes that could be attributed to infection or worsening lung disease.

Over the past few days (or week?) she has been sounding increasingly tight, much like someone in the midst of an asthma attack. She does receive albuterol to help with this and always has a good response to it. They have been gradually increasing the doses she gets a day. She also gets a nebulizer of pulmicort, which is a steroid to help combat inflammation.

The pulmonologist came in to examine her and formulate a new plan of attack. Her albuterol is now given continuously through a drip into the nebulizer (she has a very nifty inline nebulizer attached to her vent). He added prednisone (oral steroid) to help with inflammation. If these changes are not enough, she may get another nebulized med and an IV drip of aminophylline.

Those changes started a flurry of activity. Then her nurse stepped out to speak with the attending and returned saying "I just told Dr. S that I love him. Why do you think I would do that?" I was so hopeful it was because the new trach had arrived. All morning I was fighting the urge to go to the loading dock and beg them to rush it through. The attending himself said "You know if I had a tracking number I would be checking it all day."

Well, the trach had in fact arrived just after Steve left to pick up lunch. One of the last things he said before leaving was "I bet the trach hasn't even shipped yet." Finally I got to call him with some good news.

Suddenly it was Christmas morning in Natters' room. Dr. S opened the box and handed the trach to me so I could check it out. A group of residents and respiratory therapists gathered outside her room to prepare for the change.

Now, here is a little lesson for everyone on advocacy when someone you love is in the hospital. While the group was assembled outside I went over and grabbed the "owners manual" for the trach. This is just me. If I buy a new microwave I will research it for hours and read the manual cover to cover when its home. Certainly I wanted to know what information came with this new trach.

Her cuffed ET tube was inflated with air. This cuffed trach specifically recommends inflating with sterile water. I went to the group and pointed this out. No, no, no....they always inflate with air. Well, you also always use Shileys. For Pete's sake, you've never used an Arcadia brand trach, why would you think you know better than the manufacturer??? I had no intention of leaving the room with them planning on using air when it says water.

The doctor laughingly thanked me for reading the book as they shooed me from her room. The change went very smoothly and her air leak is almost completely gone. In some positions it returns a little but by far it is a huge improvement.

From there her day slowly improved, in part because she was finally left alone. One of her primary nurses developed a position that she loves to sleep in. We have been teaching it to other nurses over the past few days. In general if you get her set up this way and then pound on her back with a face mask (the cushy kind used in hand bagging) she will saturate better.

When I left she was at 90% FiO2 and saturating in the low 90's. This is considerably better than 100% FiO2 and saturating at 50-70%. I am sad that this is what we need to see as good news today, because 90% FiO2 is A LOT of oxygen, and not what we were hoping for post-cuffed trach. On the other hand, it seems she has picked up some other complications in the past few days so we need to be happy that we are still here and fighting.

The blood work shows no evidence of infection and the viral cultures will take a long time to come back. There is also very little more they can do if this is a viral infection. In a way her having an infection would have given us a clearer path to recovery. As things stand now there are no easy answers.

The attending did say that if micro-aspirating has been a contributing factor it will improve over time with the cuffed trach. That is not an immediate fix-all as the inflamed tissue would need time to heal.

I often wonder if people find this blog depressing and are reluctant to visit. I so wish I had nice shiny happy things to report. I do have pictures, though. Pictures always make frustrating posts easier to bear.

Natters reading up on bulls-eyes and her family

Sweet sleepy face

Natalie rocking the yellow ducky look

Snuggling with my mother...her first time being held by a grandparent. We look forward to her being stable again and getting her into everyone's arms. By the way, as soon as they put her in Grandma's arms she started to saturate high!
"I'm super cute. What else do you want from me?"


Annie celebrating her birthday at preschool

The Big Bass Wheel game......So, our family sometimes does have great luck. We were celebrating Annie's birthday at a local play center and Anneliese hit the jackpot-1000 tickets. It took about 5 minutes for all the tickets to dispense. Drawn by her success, many other children came over to try their luck. Then my 5 year old nephew Keegan stepped up and once again hit the big one. The kids had a great time cashing in their tickets for prizes. There is a fantastic picture of Steve wearing a pink princess cowboy hat posing with Keegan in his manly hat. I would love to post it but I also enjoy minimal conflict in my marriage.






Tonight I also want to say that we are hardly the only family facing such a difficult course in the NICU. Over the past year I have become close to many other mothers and witnessed their struggles. Not all babies come home. There are no words to make that better and it never ever gets easier to hear of loving parents with empty arms. I think of those children daily and will never forget their strong spirits.

There are also amazing babies still fighting every day despite having incredible hurdles placed in their way. I am so blessed to know these babies and their mothers. The NICU is not an easy place for anyone to be, but some families are given especially long and challenging journeys. Thank you to the mothers who let me know I am not alone and let me lean on them during times like this. You are in my thoughts and prayers daily, sometimes hourly, and I hope one day we can all gather our miracle children together when this is just a memory.