tag:blogger.com,1999:blog-70867665991405026292024-03-05T21:22:54.781-05:00Natalie EvelynMissing our sweet baby girl.....All the darkness in the world can not extinguish the light of a single candle-St Francis of AssisJenniferhttp://www.blogger.com/profile/04269773044878038857noreply@blogger.comBlogger120125tag:blogger.com,1999:blog-7086766599140502629.post-37329876465798281902014-05-29T12:20:00.000-04:002014-05-29T12:24:29.014-04:00Stroll for Strong<div class="separator" style="clear: both; text-align: center;">
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Annie, Elliot and Mama at our first Stroll for Strong</div>
<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEidJmzmsBywi0iaUeUEhjLVIi_ix8PhX0RQyv49ohxc9ZYVVvBGz9wwBytLkW3YuurZBFLpazBiHsOlgtKaf82mrBVliys_AzkxecHs310sn41z9McAwX-U_-0sHgrQ9SbdDXCPMKVPX2s/s1600/IMG_0968.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEidJmzmsBywi0iaUeUEhjLVIi_ix8PhX0RQyv49ohxc9ZYVVvBGz9wwBytLkW3YuurZBFLpazBiHsOlgtKaf82mrBVliys_AzkxecHs310sn41z9McAwX-U_-0sHgrQ9SbdDXCPMKVPX2s/s1600/IMG_0968.JPG" height="240" width="320" /></a></div>
<br />
<br />
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.<br />
<br />
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. <br />
<br />
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!"<br />
<br />
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. <br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
If you would like to learn more about the pediatric palliative care program at GCH this is an excellent article <a href="http://www.urmc.rochester.edu/referring-physicians/urmc-connection/fall-2010/pediatrics-stories/palliative.cfm" target="_blank">here.</a> <br />
<br />
We appreciate any and all support, even simply kind thoughts and prayers on Saturday.<br />
<br />
Much love! <br />
<br />
<br />Jenniferhttp://www.blogger.com/profile/04269773044878038857noreply@blogger.com5tag:blogger.com,1999:blog-7086766599140502629.post-76627713475646793332013-04-21T15:24:00.000-04:002013-04-21T15:24:15.954-04:00Rembering favorite books<!--[if gte mso 9]><xml>
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<br />
<div class="MsoNormal">
“If you become a mountain climber," said the little bunny,
“I will be a crocus in a hidden garden.” </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
“If you become a crocus in a hidden garden,” says his
mother, “I will be a gardener. And I will find you.”</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
“If you are a gardener and find me,” said the little bunny,
“I will be a bird and fly away from you.”</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
“If you become a bird and fly away from me,” said his
mother, “I will be a tree that you come home to.”</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<i style="mso-bidi-font-style: normal;">The Runaway Bunny </i>by
Margaret Wise Brown</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Georgia,"Times New Roman",serif;">Always, always, Natalie, Mama finds you, and you come home
in my heart. </span></div>
Jenniferhttp://www.blogger.com/profile/04269773044878038857noreply@blogger.com3tag:blogger.com,1999:blog-7086766599140502629.post-18099859371499234222013-04-21T15:20:00.000-04:002013-04-22T12:26:40.984-04:00April 21, 2013<!--[if gte mso 9]><xml>
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<br />
<div class="MsoNormal" style="mso-margin-bottom-alt: auto; mso-margin-top-alt: auto;">
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, <i>Natalie</i> 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. </div>
<div class="MsoNormal" style="mso-margin-bottom-alt: auto; mso-margin-top-alt: auto;">
<br /></div>
<div class="MsoNormal" style="mso-margin-bottom-alt: auto; mso-margin-top-alt: auto;">
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. </div>
<div class="MsoNormal" style="mso-margin-bottom-alt: auto; mso-margin-top-alt: auto;">
<br /></div>
<div class="MsoNormal" style="mso-margin-bottom-alt: auto; mso-margin-top-alt: auto;">
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.</div>
<div class="MsoNormal" style="mso-margin-bottom-alt: auto; mso-margin-top-alt: auto;">
</div>
<div class="MsoNormal" style="mso-margin-bottom-alt: auto; mso-margin-top-alt: auto;">
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.</div>
<div class="MsoNormal" style="mso-margin-bottom-alt: auto; mso-margin-top-alt: auto;">
<br /></div>
<div class="MsoNormal" style="mso-margin-bottom-alt: auto; mso-margin-top-alt: auto;">
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.</div>
<div class="MsoNormal" style="mso-margin-bottom-alt: auto; mso-margin-top-alt: auto;">
<br /></div>
<div class="MsoNormal" style="mso-margin-bottom-alt: auto; mso-margin-top-alt: auto;">
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. </div>
<div class="MsoNormal" style="mso-margin-bottom-alt: auto; mso-margin-top-alt: auto;">
<br /></div>
<div class="MsoNormal" style="mso-margin-bottom-alt: auto; mso-margin-top-alt: auto;">
This
is our family, and I hold them close. </div>
Jenniferhttp://www.blogger.com/profile/04269773044878038857noreply@blogger.com1tag:blogger.com,1999:blog-7086766599140502629.post-7298160896622865132013-04-21T15:08:00.000-04:002013-04-21T15:08:25.936-04:00April 21, 2010<!--[if gte mso 9]><xml>
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<br />
<div class="MsoNormal">
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.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Steve and Anneliese came to visit on the 20<sup>th</sup>. 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.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
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. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
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. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
(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)</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
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.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
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.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
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. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
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. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
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.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
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. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
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. <span style="mso-spacerun: yes;"> </span>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. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
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.<span style="mso-spacerun: yes;"> </span>(We had been told as low as 5%) </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
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. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
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!” </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
“Yes,” I answer, “but when you meet her I want you to know
exactly who she is.”</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
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!
</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
We have been given several scenarios of how things may go...</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
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.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
She will be born and need extensive resuscitation. Despite
those efforts she may never turn pink, never come around.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
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.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
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.</div>
<div class="MsoNormal">
</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
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. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
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. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
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.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
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. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
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. <span style="mso-spacerun: yes;"> </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
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. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
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.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
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.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
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. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
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.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
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 <i style="mso-bidi-font-style: normal;">exactly</i> as I imagined
her to be, exactly who I knew was inside me. And she is pink. And moving. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
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.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
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. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
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. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
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.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
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.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
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.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
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. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
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. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
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. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
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. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
The neonatologist is glowing. “We do not anticipate her having
more issues than any other 33 weeker.”</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
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.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
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. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
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. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
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”</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
All that April 21<sup>st</sup> 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. </div>
<div class="MsoNormal">
<br /></div>
<br />Jenniferhttp://www.blogger.com/profile/04269773044878038857noreply@blogger.com1tag:blogger.com,1999:blog-7086766599140502629.post-17360244771459997902012-04-21T21:39:00.003-04:002012-04-21T21:39:49.111-04:00Natalie's Second BirthdayI could not let the day pass without coming here.<br />
<br />
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. <br />
<br />
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.<br />
<br />
I meant to write her birth story today but find it is too hard.<br />
<br />
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. <br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgeolMQH-R-njMa3pqCEOd-U1fIJk749UQGkiDJxuf10gVIDHGZe4T-zdlAxpa0WYHwtKTmxkrXBgMNKc8rWSlmb408YGqQFA2va0WVy9HO9XaoW5QwHR6a-iZKFWnO-kjD-3-PxNADQrc/s1600/IMG_1666.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgeolMQH-R-njMa3pqCEOd-U1fIJk749UQGkiDJxuf10gVIDHGZe4T-zdlAxpa0WYHwtKTmxkrXBgMNKc8rWSlmb408YGqQFA2va0WVy9HO9XaoW5QwHR6a-iZKFWnO-kjD-3-PxNADQrc/s320/IMG_1666.JPG" width="320" /></a></div>
<br />
Thank you for all that remember Natalie Evelyn and love her still.<br />
<br />
Happy second birthday to my second child, to one of my greatest loves. <br />
i carry your heart(i carry it in my heart)<br />
<br />
<br />Jenniferhttp://www.blogger.com/profile/04269773044878038857noreply@blogger.com10tag:blogger.com,1999:blog-7086766599140502629.post-82571749176068400642011-10-16T00:48:00.003-04:002012-11-12T11:24:47.047-05:00My Child Died Today<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhzS8ESby-GI3ev87HrOqeftSgD7xOl7bgn3WzTNWRZbRyK7_kOVxz7Ebvf1JtMOfxxWpaMPEziCw72VX0a85jmm8deuDH712zKp3Fi3-FJ3GzevrgAxRVjZNW3xpq-kY3T2jbz8VZZigE/s1600/IMG_1649.JPG" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><br /></a>
<div style="text-align: center;">
I lost my child today<br />People came to weep and cry<br />as I just sat and stared, dry eyed<br />They struggled to find words to say<br />to try and make the pain go away<br />I walked the floor in disbelief<br />I lost my child today.</div>
<div style="text-align: center;">
</div>
<div style="text-align: center;">
I lost my child last month<br />Most of the people went away<br />Some still call and some still stay<br />I wait to wake up from this dream<br />This can't be real, I want to scream<br />Yet everything is locked inside<br />God, help me, I want to die<br />I lost my child last month.</div>
<div style="text-align: center;">
</div>
<div style="text-align: center;">
I lost my child last year<br />Now people who had came, have gone<br />I sit and struggle all day long<br />to bear the pain so deep inside<br />And now my friends just question Why?<br />Why does this mother not move on?<br />Just sits and sings the same old song<br />Good heavens, it has been so long<br />I lost my child last year.</div>
<div style="text-align: center;">
</div>
<div style="text-align: center;">
Time has not moved on for me<br />The numbness it has disappeared<br />My eyes have now cried many tears<br />I see the look upon your face<br />"She must move on and leave this place"<br />Yet I am trapped right here in time<br />The song’s the same, as is the rhyme<br />I lost my child.........today</div>
--<i>Netta Wilson, written in memory of her daughter Caprice Cara Wilson, who was killed in an auto accident (December 2, 1968 - November 20, 1994)</i><i>. Printed in the newsletter of <a href="http://www.compassionatefriends.org/">The Compassionate Friends</a>, Atlanta, May-June 2001<br /><br /><span style="font-style: italic;"></span></i><!--[if gte mso 9]><xml> <w:worddocument> <w:view>Normal</w:View> <w:zoom>0</w:Zoom> <w:punctuationkerning/> <w:validateagainstschemas/> <w:saveifxmlinvalid>false</w:SaveIfXMLInvalid> <w:ignoremixedcontent>false</w:IgnoreMixedContent> <w:alwaysshowplaceholdertext>false</w:AlwaysShowPlaceholderText> <w:compatibility> <w:breakwrappedtables/> <w:snaptogridincell/> <w:wraptextwithpunct/> <w:useasianbreakrules/> <w:dontgrowautofit/> </w:Compatibility> <w:browserlevel>MicrosoftInternetExplorer4</w:BrowserLevel> </w:WordDocument> </xml><![endif]--><!--[if gte mso 9]><xml> <w:latentstyles deflockedstate="false" latentstylecount="156"> </w:LatentStyles> </xml><![endif]--><!--[if gte mso 10]> <style> /* Style Definitions */ table.MsoNormalTable {mso-style-name:"Table Normal"; mso-tstyle-rowband-size:0; mso-tstyle-colband-size:0; mso-style-noshow:yes; mso-style-parent:""; mso-padding-alt:0in 5.4pt 0in 5.4pt; mso-para-margin:0in; mso-para-margin-bottom:.0001pt; mso-pagination:widow-orphan; font-size:10.0pt; font-family:"Times New Roman"; mso-ansi-language:#0400; mso-fareast-language:#0400; mso-bidi-language:#0400;} </style> <![endif]--> <br />
<div class="MsoNormal">
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.</div>
<div class="MsoNormal">
</div>
<div class="MsoNormal">
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. </div>
<div class="MsoNormal">
</div>
<div class="MsoNormal">
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.</div>
<div class="MsoNormal">
</div>
<div class="MsoNormal">
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. </div>
<div class="MsoNormal">
</div>
<div class="MsoNormal">
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.</div>
<div class="MsoNormal">
</div>
<div class="MsoNormal">
Thank you so much for being here and caring about our sweet baby girl. Thank you for knowing Natalie.</div>
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhzS8ESby-GI3ev87HrOqeftSgD7xOl7bgn3WzTNWRZbRyK7_kOVxz7Ebvf1JtMOfxxWpaMPEziCw72VX0a85jmm8deuDH712zKp3Fi3-FJ3GzevrgAxRVjZNW3xpq-kY3T2jbz8VZZigE/s1600/IMG_1649.JPG"><img alt="" border="0" id="BLOGGER_PHOTO_ID_5663958984767935074" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhzS8ESby-GI3ev87HrOqeftSgD7xOl7bgn3WzTNWRZbRyK7_kOVxz7Ebvf1JtMOfxxWpaMPEziCw72VX0a85jmm8deuDH712zKp3Fi3-FJ3GzevrgAxRVjZNW3xpq-kY3T2jbz8VZZigE/s400/IMG_1649.JPG" style="cursor: hand; cursor: pointer; display: block; height: 400px; margin: 0px auto 10px; text-align: center; width: 300px;" /></a><br />
<i><br /></i>Jenniferhttp://www.blogger.com/profile/04269773044878038857noreply@blogger.com12tag:blogger.com,1999:blog-7086766599140502629.post-58503212212133096892011-10-15T22:38:00.005-04:002011-10-16T00:35:43.750-04:00little brother<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjTCLtc3jlibenGYmCDBZ1Y8eKMItwgMcl_41wXpN1dJ0_sH0kBJw7X9blSnM70dFppe2dZHI5WgOnf7XsQ-QSip1P1wjpDG5Hti-afZfbMoAAv3WEHcMNniaIoLqKVl18HQfzmeghwMQM/s1600/IMG_5446.JPG"><br /></a><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgc0kM394RdHD24Te75dEjDWq13bg6x4s9ddnC2z7f9fyxx1LDxuLfq9JFOlbZ_RKQl0LPxj34YdIOQRWlh6wXDu2FQlYYNc946rRleMMiMrUGG1Qp03xDV77yNZhrPJTXQEHWVmM_9wpI/s1600/IMG_4683.JPG"><br /></a><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh9ZQO5ysBN7v0t9NP3Q8IZlD-tJIXdoX6bbwTUkQqXxeiGkuM3-huT_x7sg0Rd8H0fwQU3T7i9VUdKOFkRJlFBnZ6JPj7JW4EHNuTzGH5jFSgclxR7Ew0tdbVcsgktAR8COMsRECzOMdg/s1600/IMG_5371.JPG"><br /></a><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhhyphenhyphenbpDnTWMQEeM9xd_CRTdT3Cu-yfCfz6sw-kJi3fp7G4nfHKPHwcix_d-X5jutmmokxr1P7TPWcKxiXi-Ij_-JNDC5HEAnyOD104t2qukVGgeLt4EW9c-1qhi9JlVTPGHzNIB1jkt5nQ/s1600/IMG_5523.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 400px; height: 300px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhhyphenhyphenbpDnTWMQEeM9xd_CRTdT3Cu-yfCfz6sw-kJi3fp7G4nfHKPHwcix_d-X5jutmmokxr1P7TPWcKxiXi-Ij_-JNDC5HEAnyOD104t2qukVGgeLt4EW9c-1qhi9JlVTPGHzNIB1jkt5nQ/s400/IMG_5523.JPG" alt="" id="BLOGGER_PHOTO_ID_5663914336736718466" border="0" /></a><br /><br />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.<br /><br />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.<br /><br />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,<span style="font-style: italic;"> of course</span> I am going to love you!" Other aspects of being pregnant remained a struggle to the end.<br /><br />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.<br /><br />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.<br /><br />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.<br /><br /><span style="font-size:100%;">W</span><span style="font-size:100%;">hen 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. <span style="min-height:50px"><span style="font-size:small;"> </span></span>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. </span><br /><br />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.<br /><br />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.<br /><br />And now here he is.....<br /><br /><div style="text-align: center;"><span style="font-weight: bold;">At one day old</span><br /></div><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgc0kM394RdHD24Te75dEjDWq13bg6x4s9ddnC2z7f9fyxx1LDxuLfq9JFOlbZ_RKQl0LPxj34YdIOQRWlh6wXDu2FQlYYNc946rRleMMiMrUGG1Qp03xDV77yNZhrPJTXQEHWVmM_9wpI/s1600/IMG_4683.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 300px; height: 400px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgc0kM394RdHD24Te75dEjDWq13bg6x4s9ddnC2z7f9fyxx1LDxuLfq9JFOlbZ_RKQl0LPxj34YdIOQRWlh6wXDu2FQlYYNc946rRleMMiMrUGG1Qp03xDV77yNZhrPJTXQEHWVmM_9wpI/s400/IMG_4683.JPG" alt="" id="BLOGGER_PHOTO_ID_5663934492595097122" border="0" /></a><br /><div style="text-align: center;"><span style="font-weight: bold;">As he is now at 6 weeks old</span><br /></div><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjTCLtc3jlibenGYmCDBZ1Y8eKMItwgMcl_41wXpN1dJ0_sH0kBJw7X9blSnM70dFppe2dZHI5WgOnf7XsQ-QSip1P1wjpDG5Hti-afZfbMoAAv3WEHcMNniaIoLqKVl18HQfzmeghwMQM/s1600/IMG_5446.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 400px; height: 300px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjTCLtc3jlibenGYmCDBZ1Y8eKMItwgMcl_41wXpN1dJ0_sH0kBJw7X9blSnM70dFppe2dZHI5WgOnf7XsQ-QSip1P1wjpDG5Hti-afZfbMoAAv3WEHcMNniaIoLqKVl18HQfzmeghwMQM/s400/IMG_5446.JPG" alt="" id="BLOGGER_PHOTO_ID_5663934496329026450" border="0" /></a><br /><div style="text-align: center;"><span style="font-weight: bold;">With his adoring big sister</span><br /></div><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh9ZQO5ysBN7v0t9NP3Q8IZlD-tJIXdoX6bbwTUkQqXxeiGkuM3-huT_x7sg0Rd8H0fwQU3T7i9VUdKOFkRJlFBnZ6JPj7JW4EHNuTzGH5jFSgclxR7Ew0tdbVcsgktAR8COMsRECzOMdg/s1600/IMG_5371.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 300px; height: 400px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh9ZQO5ysBN7v0t9NP3Q8IZlD-tJIXdoX6bbwTUkQqXxeiGkuM3-huT_x7sg0Rd8H0fwQU3T7i9VUdKOFkRJlFBnZ6JPj7JW4EHNuTzGH5jFSgclxR7Ew0tdbVcsgktAR8COMsRECzOMdg/s400/IMG_5371.JPG" alt="" id="BLOGGER_PHOTO_ID_5663934502205971554" border="0" /></a>Jenniferhttp://www.blogger.com/profile/04269773044878038857noreply@blogger.com4tag:blogger.com,1999:blog-7086766599140502629.post-17195210378807149342011-04-21T11:09:00.004-04:002011-04-21T11:14:15.125-04:00Natalie's Birthday<div style="text-align: center;"><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg3N0RIpmdt8JzEjxGCL7OQqQZU06rdtOH2sgC3j-9xg9zRLQHRnE0Z2l5_VG345GkJaQqQalPd4WDsGPN2QDWip_EgalpODFvLA0V9SEZ23N3Pr_SnUXXXsar6WAcfzMRaPTzUn3uSHqc/s1600/IMG_1517.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 400px; height: 300px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg3N0RIpmdt8JzEjxGCL7OQqQZU06rdtOH2sgC3j-9xg9zRLQHRnE0Z2l5_VG345GkJaQqQalPd4WDsGPN2QDWip_EgalpODFvLA0V9SEZ23N3Pr_SnUXXXsar6WAcfzMRaPTzUn3uSHqc/s400/IMG_1517.JPG" alt="" id="BLOGGER_PHOTO_ID_5598054831505148226" border="0" /></a>Natalie Evelyn Teegarden on the day she was born<br /><br /><!--[if gte mso 9]><xml> <w:worddocument> <w:view>Normal</w:View> <w:zoom>0</w:Zoom> <w:punctuationkerning/> <w:validateagainstschemas/> <w:saveifxmlinvalid>false</w:SaveIfXMLInvalid> <w:ignoremixedcontent>false</w:IgnoreMixedContent> <w:alwaysshowplaceholdertext>false</w:AlwaysShowPlaceholderText> <w:compatibility> <w:breakwrappedtables/> <w:snaptogridincell/> <w:wraptextwithpunct/> <w:useasianbreakrules/> <w:dontgrowautofit/> </w:Compatibility> <w:browserlevel>MicrosoftInternetExplorer4</w:BrowserLevel> </w:WordDocument> </xml><![endif]--><!--[if gte mso 9]><xml> <w:latentstyles deflockedstate="false" latentstylecount="156"> </w:LatentStyles> </xml><![endif]--><!--[if gte mso 10]> <style> /* Style Definitions */ table.MsoNormalTable {mso-style-name:"Table Normal"; mso-tstyle-rowband-size:0; mso-tstyle-colband-size:0; mso-style-noshow:yes; mso-style-parent:""; mso-padding-alt:0in 5.4pt 0in 5.4pt; mso-para-margin:0in; mso-para-margin-bottom:.0001pt; mso-pagination:widow-orphan; font-size:10.0pt; font-family:"Times New Roman"; mso-ansi-language:#0400; mso-fareast-language:#0400; mso-bidi-language:#0400;} </style> <![endif]--><span style="color: rgb(51, 51, 51);font-family:Arial;font-size:14px;" >here is the deepest secret nobody knows</span><br /><span style="color: rgb(51, 51, 51);font-family:Arial;font-size:14px;" >(here is the root of the root and the bud of the bud</span><br /><span style="color: rgb(51, 51, 51);font-family:Arial;font-size:14px;" >and the sky of the sky of a tree called life;which grows</span><br /><span style="color: rgb(51, 51, 51);font-family:Arial;font-size:14px;" >higher than the soul can hope or mind can hide)</span><br /><span style="color: rgb(51, 51, 51);font-family:Arial;font-size:14px;" >and this is the wonder that's keeping the stars apart</span><br /><span style="color: rgb(51, 51, 51);font-family:Arial;font-size:14px;" ></span><br /><span style="color: rgb(51, 51, 51);font-family:Arial;font-size:14px;" >i carry your heart(i carry it in my heart) </span><br /><span style="color: rgb(51, 51, 51);font-family:Arial;font-size:14px;" ></span><br /><span style="color: rgb(51, 51, 51);font-family:Arial;font-size:14px;" >ee cummings, who had the words I fail to find</span><br /><span style="color: rgb(51, 51, 51);font-family:Arial;font-size:14px;" ></span></div>Jenniferhttp://www.blogger.com/profile/04269773044878038857noreply@blogger.com20tag:blogger.com,1999:blog-7086766599140502629.post-64469623003128224292010-10-25T16:07:00.002-04:002010-10-25T16:23:19.367-04:00The I Know Natalie FundWe 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.<br /><br /><p class="yiv493972610MsoNormal">All donations can be made payable to Golisano <span class="yshortcuts" id="lw_1288037195_1">Children’s Hospital</span>. 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.<br /></p> <p class="yiv493972610MsoNormal"> </p> <p class="yiv493972610MsoNormal">The address for donations is:</p><p class="yiv493972610MsoNormal"> Golisano <span class="yshortcuts" id="lw_1288037195_1">Children’s Hospital</span></p> <span style="border-bottom: 2px dotted rgb(54, 99, 136); cursor: pointer; background: none repeat scroll 0% 0% rgb(220, 238, 255); color: rgb(0, 0, 0);" class="yshortcuts" id="lw_1288037195_2"><p class="yiv493972610MsoNormal">300 East River Road</p> <p class="yiv493972610MsoNormal">Box 278996</p> <p class="yiv493972610MsoNormal">Rochester, NY 14627</p><p class="yiv493972610MsoNormal"><br /></p><p class="yiv493972610MsoNormal">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.<br /></p><p class="yiv493972610MsoNormal"><br /></p><p class="yiv493972610MsoNormal">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.<br /></p><p class="yiv493972610MsoNormal">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.<br /></p></span>Jenniferhttp://www.blogger.com/profile/04269773044878038857noreply@blogger.com15tag:blogger.com,1999:blog-7086766599140502629.post-81713427166150177932010-10-23T10:55:00.013-04:002010-10-24T14:58:11.860-04:00Services<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhiD-O0nMP0KgD5TfhLTbCtLlJc6CdtFT0zbEdYp5gMC-0eNQldddvm6b12Vo1Gz4hFNx-Kb4Kfx9gVkIgqjbhigoOmRGdFt1eqby-x8Oz1D93_UEErMouS693s8F0FHOY6yQKDYFlxVyc/s1600/71763_1655957686658_1468579618_31610067_5589111_n.jpg"><br /></a><br /><span style="font-size:130%;">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.<br /><br />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.<br /></span><br /><div style="text-align: center;"><span style="font-style: italic;">Flowers from Mommy and Daddy</span><br /></div><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh2Hx3xM1uXgu57A_qbydr0TlZXdFWc1qeZzBU8a90c5bR_TSH_w4tA0USFz5L78f0AJccMgQD09AMmSfi2TrhWYo9micEIsm3EKOP2KunC9YMhG_Pnttwxa7q_WeNOXeF6cMzgEDmjAzI/s1600/IMG_2635.JPG"><br /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgLPmYnZ30ZgoicZnhvhbKNfKyc5NFOg33w3gLiItYvBd6PmarAy1liycRganYfHeSLf966omUUT3I8HKPPu9TYtZObLT_AekwZAW8YAXXUtext0lXv9Rcea6a0SdWmOaI9T1k5N9j20ao/s1600/IMG_2655.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 400px; height: 300px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgLPmYnZ30ZgoicZnhvhbKNfKyc5NFOg33w3gLiItYvBd6PmarAy1liycRganYfHeSLf966omUUT3I8HKPPu9TYtZObLT_AekwZAW8YAXXUtext0lXv9Rcea6a0SdWmOaI9T1k5N9j20ao/s400/IMG_2655.JPG" alt="" id="BLOGGER_PHOTO_ID_5531261526654698962" border="0" /></a><br /><div style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEie_aP1UZnFyxC-peBsLDIecxeWCI8yOv-fc-LMugJSUXj9csG6oFDbeNKCVBlhLCBvTi4j3oNYVzXcIl8T9opudcCRl2scZwT71JNvNFHzkF616nabXvTxvRV8Ts8556w6T1KuY9bBODc/s1600/IMG_2654.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 300px; height: 400px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEie_aP1UZnFyxC-peBsLDIecxeWCI8yOv-fc-LMugJSUXj9csG6oFDbeNKCVBlhLCBvTi4j3oNYVzXcIl8T9opudcCRl2scZwT71JNvNFHzkF616nabXvTxvRV8Ts8556w6T1KuY9bBODc/s400/IMG_2654.JPG" alt="" id="BLOGGER_PHOTO_ID_5531261513681206546" border="0" /></a><span style="font-style: italic;">Flowers from big sister Anneliese</span><br /></div><div style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEglz9ij7-sriqt92QaWqwLG5C-4VG_UwP4CN0tQrXxNkTz-fE5B8iLnhwdhMJ54cVe3wT4_kItnflQL48bboy3KAJJSga4cQnTb8Cv1mqnxJ55CWq394ZKa2u13RkKSkwO38s2nmDuqVQY/s1600/IMG_2647.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 300px; height: 400px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEglz9ij7-sriqt92QaWqwLG5C-4VG_UwP4CN0tQrXxNkTz-fE5B8iLnhwdhMJ54cVe3wT4_kItnflQL48bboy3KAJJSga4cQnTb8Cv1mqnxJ55CWq394ZKa2u13RkKSkwO38s2nmDuqVQY/s400/IMG_2647.JPG" alt="" id="BLOGGER_PHOTO_ID_5531261503909495986" border="0" /></a>Some of her special items<br /><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEihQm9HsDa8g4TTNy2fTacrfxb82SEvid8r6lR3w5QFBkLi8lsQ5A8Jm-8iECJ4Exi1olE5ADdrczVxHRjwIMRwFs_-6u2yuydzs5zhkrbf8wfePNEwYG_Trfs1rmBQOYFdMBlE2bKyjDI/s1600/IMG_2631.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 400px; height: 300px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEihQm9HsDa8g4TTNy2fTacrfxb82SEvid8r6lR3w5QFBkLi8lsQ5A8Jm-8iECJ4Exi1olE5ADdrczVxHRjwIMRwFs_-6u2yuydzs5zhkrbf8wfePNEwYG_Trfs1rmBQOYFdMBlE2bKyjDI/s400/IMG_2631.JPG" alt="" id="BLOGGER_PHOTO_ID_5531257510607781570" border="0" /></a><br /></div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiLGRsN80iRJAhoEwt5AtV4Drbn6pxqxNEQCeHYtIfuyZlDqGInmoaz7onAqJtYnFwoqx4XRtbZ4ZmcI1q7I8trCZcZp63Kx6nxGj-aD8lwAW28rWYjVRiAGm0IP5BfBNlKN5Yvi1R6ygI/s1600/IMG_2644.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 400px; height: 300px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiLGRsN80iRJAhoEwt5AtV4Drbn6pxqxNEQCeHYtIfuyZlDqGInmoaz7onAqJtYnFwoqx4XRtbZ4ZmcI1q7I8trCZcZp63Kx6nxGj-aD8lwAW28rWYjVRiAGm0IP5BfBNlKN5Yvi1R6ygI/s400/IMG_2644.JPG" alt="" id="BLOGGER_PHOTO_ID_5531257537374607746" border="0" /></a><br /><div style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjSEFmypOkR1iYHamg2e0VWhOGED5sGYfY-b0ZznA9e_67fdIj_AxgjrEn59kYvX02Rx8k5ZNQaeu-XsYH4uM4qWzDMAmFA6S58xfU7pKkqeCMylvwAPPXsYoIatYVKdnsEBfqpd0G5qFg/s1600/IMG_2641.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 400px; height: 300px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjSEFmypOkR1iYHamg2e0VWhOGED5sGYfY-b0ZznA9e_67fdIj_AxgjrEn59kYvX02Rx8k5ZNQaeu-XsYH4uM4qWzDMAmFA6S58xfU7pKkqeCMylvwAPPXsYoIatYVKdnsEBfqpd0G5qFg/s400/IMG_2641.JPG" alt="" id="BLOGGER_PHOTO_ID_5531257530629177346" border="0" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEihQm9HsDa8g4TTNy2fTacrfxb82SEvid8r6lR3w5QFBkLi8lsQ5A8Jm-8iECJ4Exi1olE5ADdrczVxHRjwIMRwFs_-6u2yuydzs5zhkrbf8wfePNEwYG_Trfs1rmBQOYFdMBlE2bKyjDI/s1600/IMG_2631.JPG"><br /></a><span style="font-style: italic;">Photo displays</span><br /></div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiFn24LeeXIYb-tr5NuSNfAAmFQzqd56x7DY4wZxEZhsGymTwWFAnzBghHQ8nuqrscGOcltIo_MxKSzfTqGXEafh4Uxzg4u-zU1dY85qNLB985t4f4czzUrcKCL82wA6uxkxl1i28ri3nA/s1600/IMG_2638.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 300px; height: 400px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiFn24LeeXIYb-tr5NuSNfAAmFQzqd56x7DY4wZxEZhsGymTwWFAnzBghHQ8nuqrscGOcltIo_MxKSzfTqGXEafh4Uxzg4u-zU1dY85qNLB985t4f4czzUrcKCL82wA6uxkxl1i28ri3nA/s400/IMG_2638.JPG" alt="" id="BLOGGER_PHOTO_ID_5531257530191869714" border="0" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiCBgGARZn8VQAVeftYlk0B3NCd2qUjhjfIzDMmYZjqHqgFBdS64XOmaOwv06jbQ2eUYEPdzt8CRsM3qODoNrixuxNLCaCZygLRAae3rL91E9bRFu1HtKgI6lXal8zUVgD0VTwHuTHJiVs/s1600/IMG_2636.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 300px; height: 400px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiCBgGARZn8VQAVeftYlk0B3NCd2qUjhjfIzDMmYZjqHqgFBdS64XOmaOwv06jbQ2eUYEPdzt8CRsM3qODoNrixuxNLCaCZygLRAae3rL91E9bRFu1HtKgI6lXal8zUVgD0VTwHuTHJiVs/s400/IMG_2636.JPG" alt="" id="BLOGGER_PHOTO_ID_5531257524493607042" border="0" /></a><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh2Hx3xM1uXgu57A_qbydr0TlZXdFWc1qeZzBU8a90c5bR_TSH_w4tA0USFz5L78f0AJccMgQD09AMmSfi2TrhWYo9micEIsm3EKOP2KunC9YMhG_Pnttwxa7q_WeNOXeF6cMzgEDmjAzI/s1600/IMG_2635.JPG"><br /></a><!--[if gte mso 9]><xml> <w:worddocument> <w:view>Normal</w:View> <w:zoom>0</w:Zoom> <w:punctuationkerning/> <w:validateagainstschemas/> <w:saveifxmlinvalid>false</w:SaveIfXMLInvalid> <w:ignoremixedcontent>false</w:IgnoreMixedContent> <w:alwaysshowplaceholdertext>false</w:AlwaysShowPlaceholderText> <w:compatibility> <w:breakwrappedtables/> <w:snaptogridincell/> <w:wraptextwithpunct/> <w:useasianbreakrules/> <w:dontgrowautofit/> </w:Compatibility> <w:browserlevel>MicrosoftInternetExplorer4</w:BrowserLevel> </w:WordDocument> </xml><![endif]--><!--[if gte mso 9]><xml> <w:latentstyles deflockedstate="false" latentstylecount="156"> </w:LatentStyles> </xml><![endif]--><!--[if gte mso 10]> <style> /* Style Definitions */ table.MsoNormalTable {mso-style-name:"Table Normal"; mso-tstyle-rowband-size:0; mso-tstyle-colband-size:0; mso-style-noshow:yes; mso-style-parent:""; mso-padding-alt:0in 5.4pt 0in 5.4pt; mso-para-margin:0in; mso-para-margin-bottom:.0001pt; mso-pagination:widow-orphan; font-size:10.0pt; font-family:"Times New Roman"; mso-ansi-language:#0400; mso-fareast-language:#0400; mso-bidi-language:#0400;} </style> <![endif]--><span style=";font-family:lucida grande;font-size:130%;" >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.</span> <p class="MsoNormal" style="font-family:lucida grande;"><span style="font-size:130%;"> </span></p> <p class="MsoNormal" style="font-family:lucida grande;"><span style="font-size:130%;">September 24<sup>th</sup> 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.</span></p> <p class="MsoNormal" style="font-family:lucida grande;"><span style="font-size:130%;"> </span></p> <p class="MsoNormal" style="font-family:lucida grande;"><span style="font-size:130%;">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. </span></p> <p class="MsoNormal" style="font-family:lucida grande;"><span style="font-size:130%;"> </span></p> <p class="MsoNormal" style="font-family:lucida grande;"><span style="font-size:130%;">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.</span></p> <p class="MsoNormal" style="font-family:lucida grande;"><span style="font-size:130%;"> </span></p> <p class="MsoNormal" style="font-family:lucida grande;"><span style="font-size:130%;">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. </span></p> <p class="MsoNormal" style="font-family:lucida grande;"><span style="font-size:130%;"> </span></p> <p class="MsoNormal" style="font-family:lucida grande;"><span style="font-size:130%;">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.</span></p> <p class="MsoNormal" style="font-family:lucida grande;"><span style="font-size:130%;"> </span></p> <p class="MsoNormal" style="font-family:lucida grande;"><span style="font-size:130%;">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. </span></p> <p class="MsoNormal" style="font-family:lucida grande;"><span style="font-size:130%;"> </span></p> <p class="MsoNormal" style="font-family:lucida grande;"><span style="font-size:130%;">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. </span></p> <p class="MsoNormal" style="font-family:lucida grande;"><span style="font-size:130%;"> </span></p> <p class="MsoNormal" style="font-family:lucida grande;"><span style="font-size:130%;">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.</span></p> <p class="MsoNormal" style="font-family:lucida grande;"><span style="font-size:130%;"> </span></p> <p class="MsoNormal" style="font-family:lucida grande;"><span style="font-size:130%;">Natalie knew what she liked and what she did not. She was rarely up for compromise and mostly got her way.</span></p> <p class="MsoNormal" style="font-family:lucida grande;"><span style="font-size:130%;"> </span></p> <p class="MsoNormal" style="font-family:lucida grande;"><span style="font-size:130%;">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. </span></p> <p class="MsoNormal" style="font-family:lucida grande;"><span style="font-size:130%;"> </span></p> <p class="MsoNormal" style="font-family:lucida grande;"><span style="font-size:130%;">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. </span></p> <p class="MsoNormal" style="font-family:lucida grande;"><span style="font-size:130%;"> </span></p> <p class="MsoNormal" style="font-family:lucida grande;"><span style="font-size:130%;">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.</span></p> <p class="MsoNormal" style="font-family:lucida grande;"><span style="font-size:130%;"> </span></p> <p class="MsoNormal" style="font-family:lucida grande;"><span style="font-size:130%;">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.</span></p> <p class="MsoNormal" style="font-family:lucida grande;"><span style="font-size:130%;"> </span></p> <p class="MsoNormal" style="font-family:lucida grande;"><span style="font-size:130%;">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. </span></p> <p class="MsoNormal" style="font-family:lucida grande;"><span style="font-size:130%;"> </span></p> <p class="MsoNormal" style="font-family:lucida grande;"><span style="font-size:130%;">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. </span></p> <p class="MsoNormal" style="font-family:lucida grande;"><span style="font-size:130%;"> </span></p> <p class="MsoNormal" style="font-family:lucida grande;"><span style="font-size:130%;">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.</span></p> <p class="MsoNormal" style="font-family:lucida grande;"><span style="font-size:130%;"> </span></p> <p class="MsoNormal" style="font-family:lucida grande;"><span style="font-size:130%;">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.</span></p> <p class="MsoNormal" style="font-family:lucida grande;"><span style="font-size:130%;"> </span></p> <p class="MsoNormal" style="font-family:lucida grande;"><span style="font-size:130%;">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.</span></p> <p class="MsoNormal" style="font-family:lucida grande;"><span style="font-size:130%;"> </span></p> <p class="MsoNormal" style="font-family:lucida grande;"><span style="font-size:130%;">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.</span></p> <p class="MsoNormal" style="font-family:lucida grande;"><span style="font-size:130%;"> </span></p> <p class="MsoNormal" style="font-family:lucida grande;"><span style="font-size:130%;">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.</span></p> <p class="MsoNormal" style="font-family:lucida grande;"><span style="font-size:130%;"> </span></p> <p class="MsoNormal" style="font-family:lucida grande;"><span style="font-size:130%;">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.</span></p> <p class="MsoNormal" style="font-family:lucida grande;"><span style="font-size:130%;"> </span></p> <p class="MsoNormal" style="font-family:lucida grande;"><span style="font-size:130%;">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 <span style="font-style: italic;">Click Clack Moo Moo</span>, <span style="font-style: italic;">Goodnight Moon</span> and <span style="font-style: italic;">The Runaway Bunny</span>. 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.</span></p> <p class="MsoNormal" style="font-family:lucida grande;"><span style="font-size:130%;"> </span></p> <p class="MsoNormal" style="font-family:lucida grande;"><span style="font-size:130%;">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 </span></p> <p class="MsoNormal" style="font-family:lucida grande;"><span style="font-size:130%;"> </span></p> <p class="MsoNormal" style="font-family:lucida grande;"><span style="font-size:130%;">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.</span></p> <p class="MsoNormal" style="font-family:lucida grande;"><span style="font-size:130%;"> </span></p> <p class="MsoNormal" style="font-family:lucida grande;"><span style="font-size:130%;">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. </span></p> <p class="MsoNormal" style="font-family:lucida grande;"><span style="font-size:130%;"> </span></p> <p class="MsoNormal" style="font-family:lucida grande;"><span style="font-size:130%;">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.</span></p> <p class="MsoNormal" style="font-family:lucida grande;"><span style="font-size:130%;"> </span></p> <p class="MsoNormal" style="font-family:lucida grande;"><span style="font-size:130%;">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.</span></p> <p class="MsoNormal" style="font-family:lucida grande;"><span style="font-size:130%;"> </span></p> <p class="MsoNormal" style="font-family:lucida grande;"><span style="font-size:130%;">“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.”</span></p> <p class="MsoNormal" style="font-family:lucida grande;"><span style="font-size:130%;"> </span></p> <p class="MsoNormal" style="font-family:lucida grande;"><span style="font-size:130%;">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. </span></p> <p class="MsoNormal" style="font-family:lucida grande;"><span style="font-size:130%;"> </span></p> <p class="MsoNormal" style="font-family:lucida grande;"><span style="font-size:130%;">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. </span></p> <p class="MsoNormal" style="font-family:lucida grande;"><span style="font-size:130%;"> </span></p> <p class="MsoNormal" style="font-family:lucida grande;"><span style="font-size:130%;">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.</span></p> <p class="MsoNormal" style="font-family:lucida grande;"><span style="font-size:130%;"> </span></p> <p class="MsoNormal" style="font-family:lucida grande;"><span style="font-size:130%;">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. </span></p><span style="font-size:130%;"><br /></span><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiLGRsN80iRJAhoEwt5AtV4Drbn6pxqxNEQCeHYtIfuyZlDqGInmoaz7onAqJtYnFwoqx4XRtbZ4ZmcI1q7I8trCZcZp63Kx6nxGj-aD8lwAW28rWYjVRiAGm0IP5BfBNlKN5Yvi1R6ygI/s1600/IMG_2644.JPG"><br /></a><div style="text-align: center; font-style: italic;">Balloon release at the cemetery<br /></div><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjSEFmypOkR1iYHamg2e0VWhOGED5sGYfY-b0ZznA9e_67fdIj_AxgjrEn59kYvX02Rx8k5ZNQaeu-XsYH4uM4qWzDMAmFA6S58xfU7pKkqeCMylvwAPPXsYoIatYVKdnsEBfqpd0G5qFg/s1600/IMG_2641.JPG"><br /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhiD-O0nMP0KgD5TfhLTbCtLlJc6CdtFT0zbEdYp5gMC-0eNQldddvm6b12Vo1Gz4hFNx-Kb4Kfx9gVkIgqjbhigoOmRGdFt1eqby-x8Oz1D93_UEErMouS693s8F0FHOY6yQKDYFlxVyc/s1600/71763_1655957686658_1468579618_31610067_5589111_n.jpg"><img style="display: block; 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margin: 0px auto 10px; text-align: center; cursor: pointer; width: 300px; height: 400px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgaTpXbCUdLM1LXzgUnatewzdU7b4Fjje7d-VvNQ0VebesJVkW5RbbJMTS7J_BPcbnAjpELgq2UaqvZUAZJunKsEV8QChCBLwWPKQGGLov799zosqjuU57F0M2-V_6zUDIrwMxPoYgpDl8/s400/66958_1655989287448_1468579618_31610121_7811551_n.jpg" alt="" id="BLOGGER_PHOTO_ID_5531680324266130594" border="0" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj9UAZFmmudtOx5nB5ASgj2Oans16youV_4BMu6W42rMQuR5PtuTuyRPVkNH06vH67tgcs1jXItC34iGnRttAk5upRuC4YE64VITX3TzZzv18uqOvggoZqDtm3OLH23KP2ZpClasQ5tiSQ/s1600/IMG_2683.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 400px; height: 300px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj9UAZFmmudtOx5nB5ASgj2Oans16youV_4BMu6W42rMQuR5PtuTuyRPVkNH06vH67tgcs1jXItC34iGnRttAk5upRuC4YE64VITX3TzZzv18uqOvggoZqDtm3OLH23KP2ZpClasQ5tiSQ/s400/IMG_2683.JPG" alt="" id="BLOGGER_PHOTO_ID_5531681313502320482" border="0" /></a>Jenniferhttp://www.blogger.com/profile/04269773044878038857noreply@blogger.com25tag:blogger.com,1999:blog-7086766599140502629.post-70675710324562526802010-10-18T21:30:00.013-04:002010-12-20T11:18:50.769-05:00Details<div style="text-align: center; font-style: italic;">There are things that we don't want to happen but have to accept, things we<br />don't want to know but have to learn, and people we can't live without but have<br />to let go. ~Author Unknown<br /></div><span style="font-size:130%;"><br />First of all, your comments have brought such comfort to us and every time I see the words<span style="font-weight: bold;"> </span>"I know Natalie"<span style="font-weight: bold;"> </span>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.<br /><br />The link for Natalie's obituary is on the funeral home website. You can find it <a href="http://www.bartolomeo.com/Obituaries/Detail.aspx?oid=1350">here</a> and <a href="http://www.legacy.com/obituaries/democratandchronicle/obituary.aspx?n=natalie-evelyn-teegarden&pid=146094944">here</a>. 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.<br /><br />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.<br /><br />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.<br /></span><span style="font-size:130%;"><br />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.<br /><br />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.<br /><br /><br /><br /><br /><br /><br /><br /></span><!--[if gte mso 9]><xml> <w:worddocument> <w:view>Normal</w:View> <w:zoom>0</w:Zoom> <w:punctuationkerning/> <w:validateagainstschemas/> <w:saveifxmlinvalid>false</w:SaveIfXMLInvalid> <w:ignoremixedcontent>false</w:IgnoreMixedContent> <w:alwaysshowplaceholdertext>false</w:AlwaysShowPlaceholderText> <w:compatibility> <w:breakwrappedtables/> <w:snaptogridincell/> <w:wraptextwithpunct/> <w:useasianbreakrules/> <w:dontgrowautofit/> </w:Compatibility> <w:browserlevel>MicrosoftInternetExplorer4</w:BrowserLevel> </w:WordDocument> </xml><![endif]--><!--[if gte mso 9]><xml> <w:latentstyles deflockedstate="false" latentstylecount="156"> </w:LatentStyles> </xml><![endif]--><br /><span style="font-size:130%;"><br /><br /><br /><br /><br /><br /></span>Jenniferhttp://www.blogger.com/profile/04269773044878038857noreply@blogger.com24tag:blogger.com,1999:blog-7086766599140502629.post-38545423540983644712010-10-16T22:52:00.002-04:002010-10-16T23:12:27.923-04:00Saying Goodbye<span style="font-size:130%;">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.<br /><br />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.<br /><br />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.<br /><br />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<br /></span><div style="text-align: center;"><span style="font-size:130%;"> Natalie Evelyn Teegarden</span><br /><span style="font-size:130%;">120 Parkwood Rd</span><br /><span style="font-size:130%;">Rochester, NY 14615</span><br /><br /><div style="text-align: left;"><span style="font-size:130%;">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.<br /><br />Thank you thank thank you for never letting me think we were on this journey alone. I am so very sorry.<br /></span></div></div><span style="font-size:130%;"><br /></span>Jenniferhttp://www.blogger.com/profile/04269773044878038857noreply@blogger.com111tag:blogger.com,1999:blog-7086766599140502629.post-5273794833310870322010-10-15T13:24:00.003-04:002010-10-15T14:13:41.936-04:00Boomerang<span style="font-size:130%;"> 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%.<br /><br />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.<br /><br />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%.<br /><br /><br /><br /></span>Jenniferhttp://www.blogger.com/profile/04269773044878038857noreply@blogger.com7tag:blogger.com,1999:blog-7086766599140502629.post-14950263013379326752010-10-14T20:57:00.007-04:002010-10-14T22:45:26.579-04:00It's Always Something<span style="font-size:130%;">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).</span><br /><br /><span style="font-size:130%;">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.<br /><br />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.<br /><br />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.<br /><br />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.<br /><br />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."<br /><br />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.<br /><br />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.<br /><br />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.<br /><br />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. </span><span style="font-size:130%;">For Pete's sake, you've never used an Arcadia brand trach, why would you think you know better than the manufacturer???</span><span style="font-size:130%;"> I had no intention of leaving the room with them planning on using air when it says water. <br /><br />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.<br /><br />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.<br /><br />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.<br /><br />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.<br /><br />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.<br /><br />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.<br /><br /></span><div style="text-align: center;"><span style="font-style: italic;font-size:130%;" ><span style="font-size:100%;">Natters reading up on bulls-eyes and her family</span></span><br /></div><span style="font-size:130%;"><br /></span><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgmou__EwEmXOMCKuuGkmh-u2-jimk42uT_SRXeNDYAg5XVxnVd8JyN5DXIUbbCcmGAYK-RT6-QH7PtdVYThGCoiBqtwQGWP-yibMoyuRIrfh0F32aSY_wKucwYe_2Ke9pyyIKJ-X_r_ig/s1600/IMG_2412.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 400px; height: 300px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgmou__EwEmXOMCKuuGkmh-u2-jimk42uT_SRXeNDYAg5XVxnVd8JyN5DXIUbbCcmGAYK-RT6-QH7PtdVYThGCoiBqtwQGWP-yibMoyuRIrfh0F32aSY_wKucwYe_2Ke9pyyIKJ-X_r_ig/s400/IMG_2412.JPG" alt="" id="BLOGGER_PHOTO_ID_5528087708572491570" border="0" /></a><br /><div style="text-align: center; font-style: italic;">Sweet sleepy face<br /></div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjNluScOYTvrHs4Mr6VNS3CBEDscwY_NE1JO8iE47JSOA0G-R7JYVmvXEVc8LmIpVKEZnCfXjrsdWa7Ez2lxg8H5AUNYt7fHpizPwB0KD4POt72E9YMFGyt9HYOguyJ-FqctiCviJdV6Ic/s1600/IMG_2411.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 400px; height: 300px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjNluScOYTvrHs4Mr6VNS3CBEDscwY_NE1JO8iE47JSOA0G-R7JYVmvXEVc8LmIpVKEZnCfXjrsdWa7Ez2lxg8H5AUNYt7fHpizPwB0KD4POt72E9YMFGyt9HYOguyJ-FqctiCviJdV6Ic/s400/IMG_2411.JPG" alt="" id="BLOGGER_PHOTO_ID_5528087703226918674" border="0" /></a><br /><div style="text-align: center;"><span style="font-style: italic;">Natalie rocking the yellow ducky look</span><br /></div><div style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjCqRU_h-Hdr4jAaMjsi2iKw_e4t-kFZdz-vr-JPN6nu5KiLLBXKiEUE26Wy06Z7_nAD_R2XzhHmrOgzmreuEyCwcmvE_yPqBXVxjjFX30PAvtPuYK_uNFRBdoMIq3654cUBszEv4ux8PI/s1600/IMG_2410.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 400px; height: 300px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjCqRU_h-Hdr4jAaMjsi2iKw_e4t-kFZdz-vr-JPN6nu5KiLLBXKiEUE26Wy06Z7_nAD_R2XzhHmrOgzmreuEyCwcmvE_yPqBXVxjjFX30PAvtPuYK_uNFRBdoMIq3654cUBszEv4ux8PI/s400/IMG_2410.JPG" alt="" id="BLOGGER_PHOTO_ID_5528087697392649698" border="0" /></a><br /><span style="font-style: italic;">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!</span><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjbHxJqLvFlZUF1gvZuzYNT6scJj2rjTdZHfbubYcxONB23q1eGjWfat63-GvdLLNA5I7plMg4n7_RFsuY67MTAP2RjnOW1HnDB7FGFxyYtFgRYvRGh6UJknv1p3KLdBtKGFAwkSXROj5I/s1600/IMG_2501.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 300px; height: 400px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjbHxJqLvFlZUF1gvZuzYNT6scJj2rjTdZHfbubYcxONB23q1eGjWfat63-GvdLLNA5I7plMg4n7_RFsuY67MTAP2RjnOW1HnDB7FGFxyYtFgRYvRGh6UJknv1p3KLdBtKGFAwkSXROj5I/s400/IMG_2501.JPG" alt="" id="BLOGGER_PHOTO_ID_5528091495029729634" border="0" /></a>"I'm super cute. What else do you want from me?"<br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgLSft7n9B4pFQJ8WPgJ6gm1sTF7myPxDXKKfnx7i6hv_bgrBZuOkmNVxx2xXj1kyd3IL_PxlDyRwuufiCRnakUNmIFgSaCk4n7j2Q3tsvWi-TUgRFYSPrGn62b6_yD28AUkGiwoR2dRvM/s1600/IMG_2495.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 300px; height: 400px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgLSft7n9B4pFQJ8WPgJ6gm1sTF7myPxDXKKfnx7i6hv_bgrBZuOkmNVxx2xXj1kyd3IL_PxlDyRwuufiCRnakUNmIFgSaCk4n7j2Q3tsvWi-TUgRFYSPrGn62b6_yD28AUkGiwoR2dRvM/s400/IMG_2495.JPG" alt="" id="BLOGGER_PHOTO_ID_5528091483306962450" border="0" /></a><br /><br /><span style="font-style: italic;">Annie celebrating her birthday at preschool</span> </div><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh7KQz4hW-wLVRsBhm2RqiD2VJRM0KPZs71SWbbEPftX6TS4GIuv-XbbyAup9hLgeampm9JIOvRk838l9FzEQba5TiIYnA2Ilyaqpjwe4GD1mxbfrOJ_ChPlaAFU4Edkar4KhUsrqKe_CQ/s1600/IMG_2361.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 300px; height: 400px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh7KQz4hW-wLVRsBhm2RqiD2VJRM0KPZs71SWbbEPftX6TS4GIuv-XbbyAup9hLgeampm9JIOvRk838l9FzEQba5TiIYnA2Ilyaqpjwe4GD1mxbfrOJ_ChPlaAFU4Edkar4KhUsrqKe_CQ/s400/IMG_2361.JPG" alt="" id="BLOGGER_PHOTO_ID_5528087692157279138" border="0" /></a>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.<br /><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjtR3wwsc56fwiRue7_nXujxxUG1k9EfLV8ffQCYNMtyTp1vPXW9AbEXMY5KIYK4rcy9QgkoYsDc4fZgHCe6V9x1p-BmHqJlZb8zA9dyWUB2kzjKhzMfBLojJ7UgluBm3Fwm5ew1h2uMEE/s1600/IMG_2460.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 400px; height: 300px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjtR3wwsc56fwiRue7_nXujxxUG1k9EfLV8ffQCYNMtyTp1vPXW9AbEXMY5KIYK4rcy9QgkoYsDc4fZgHCe6V9x1p-BmHqJlZb8zA9dyWUB2kzjKhzMfBLojJ7UgluBm3Fwm5ew1h2uMEE/s400/IMG_2460.JPG" alt="" id="BLOGGER_PHOTO_ID_5528087716836786386" border="0" /></a><br /><br /><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgXjSVLYiUcWDzAv9kiwDJlwpUEpKqcp81hix5e3OMs1gcweLwOsEDDJTXavht2-FQDCknJqCeDCCpM40So7n7JzrOyaVUauXCBpYKffTYxrQ6L9vqvbOW-HG1OYsxFBqOZQoU-AQmAI0U/s1600/IMG_2466.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 400px; height: 300px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgXjSVLYiUcWDzAv9kiwDJlwpUEpKqcp81hix5e3OMs1gcweLwOsEDDJTXavht2-FQDCknJqCeDCCpM40So7n7JzrOyaVUauXCBpYKffTYxrQ6L9vqvbOW-HG1OYsxFBqOZQoU-AQmAI0U/s400/IMG_2466.JPG" alt="" id="BLOGGER_PHOTO_ID_5528091471194014770" border="0" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhIFs6eu7M6bc0kOKZQVoCJSzna84s44pzjhcTnw_QkYD7xo10r99ORh_RolAwKg9EssKr96s2t2hxmi5FXBE8C7LG6CaGPUFGlSSGIJa_MadEM-kVzpkve_aiz5qLAtY5u27YZyw3G2mk/s1600/IMG_2472.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 300px; height: 400px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhIFs6eu7M6bc0kOKZQVoCJSzna84s44pzjhcTnw_QkYD7xo10r99ORh_RolAwKg9EssKr96s2t2hxmi5FXBE8C7LG6CaGPUFGlSSGIJa_MadEM-kVzpkve_aiz5qLAtY5u27YZyw3G2mk/s400/IMG_2472.JPG" alt="" id="BLOGGER_PHOTO_ID_5528091477255218818" border="0" /></a><br /><span style="font-size:130%;">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.<br /><br />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.</span><br /><span style="font-size:130%;"><br /></span>Jenniferhttp://www.blogger.com/profile/04269773044878038857noreply@blogger.com6tag:blogger.com,1999:blog-7086766599140502629.post-9351983137692960062010-10-13T22:58:00.002-04:002010-10-13T23:19:00.832-04:00WaitingA week after deciding on a cuffed <span class="blsp-spelling-error" id="SPELLING_ERROR_0">trach</span> and we are still waiting. There were delays in getting all the specialists to agree and then find a vendor. This vendor works with the <span class="blsp-spelling-error" id="SPELLING_ERROR_1">ENT</span> clinic but not the hospital, so the hospital had to approve them as a vendor. Once that was complete, the vendor needed the hospital to jump through hoops to insure payment. sigh. Doctor finally begs them to <span class="blsp-spelling-error" id="SPELLING_ERROR_2">Fedex</span> the <span class="blsp-spelling-error" id="SPELLING_ERROR_3">trachs</span> already and we promise promise promise they will be paid for. They were supposed to be here today and we were very disappointed that we have yet one more day of waiting. They should be on the loading docks tomorrow morning and the <span class="blsp-spelling-error" id="SPELLING_ERROR_4">neonatologist</span> said if he had contacts down there he would have someone expedite it to the <span class="blsp-spelling-error" id="SPELLING_ERROR_5">NICU</span>.<br /><br />There is no real change. She continues to struggle with oxygen saturation and no one knows why. She should be over the surgical set back, her pulmonary hypertension is no worse (according to the last echo), they even put her on an oral antibiotic for good measure after reviewing consecutive gram stains of her <span class="blsp-spelling-error" id="SPELLING_ERROR_6">trach</span> aspirates. Our last best option is the air leak, otherwise the <span class="blsp-spelling-corrected" id="SPELLING_ERROR_7">explanation</span> we are left with is disease progression and there is nothing more they can do.<br /><br />We had a sit down with the social worker (love her) and the current attending (he has been fantastic). We wait to see what the cuffed <span class="blsp-spelling-error" id="SPELLING_ERROR_8">trach</span> does. In the meantime, we asked them to consult with some <span class="blsp-spelling-error" id="SPELLING_ERROR_9">pulmonologists</span> from larger hospitals to get feedback. We also asked for the first time if Natalie would possibly be better off in a larger institution. This is a touchy thing to suggest and the next best option for us (CHOP in Philly) is over 5 hours away. It would mean some incredible maneuvering on our part, and she would have to be stable enough for the drive. That being said, I never want to wonder if another hospital could have done more for her.<br /><br />Dr. S is going to talk to people and see who the best consult is. We are waiting to see what happens when her air leak is under control. Waiting to see if the consult will have suggestions, waiting to see if another hospital thinks they can do more for her and if they are willing to accept her as a patient. Everything in me wants this air leak to be the problem and for her to make steady improvements right where we are. In the meantime, we wait.<br /><br />I realize I have been talking about the cuffed <span class="blsp-spelling-error" id="SPELLING_ERROR_10">trach</span> and not explaining it. The diameter of her current <span class="blsp-spelling-error" id="SPELLING_ERROR_11">trach</span> (a basic <span class="blsp-spelling-error" id="SPELLING_ERROR_12">Shiley</span> model) is considerably smaller than the diameter of her trachea. A cuffed <span class="blsp-spelling-error" id="SPELLING_ERROR_13">trach</span> has a small balloon that is inflated around the shaft of the <span class="blsp-spelling-error" id="SPELLING_ERROR_14">trach</span> to minimize the air leaking around it. This is not without risks-the contact and pressure on her trachea can cause tissue breakdown. Developmentally it eliminates her ability to vocalize and will make tasks such as eating and swallowing a little more challenging to master. We hope the cuff is a temporary solution and that as her respiratory status improves the need for the cuff will be reduced.<br /><br />We thank you for your continued prayers and kind words. I have received so many wonderful emails and notes of support. This has been a very trying time in the midst of a very long hard road and I so appreciate the kindness we've been shown.Jenniferhttp://www.blogger.com/profile/04269773044878038857noreply@blogger.com1tag:blogger.com,1999:blog-7086766599140502629.post-38342295981871147102010-10-11T12:23:00.002-04:002010-10-11T12:39:38.171-04:00Trying to find where we are<span style="font-size:130%;">I may start talking in circles here, but things have been pretty hectic and confusing.<br /><br />Nothing grew from her cultures, the fever subsided and antibiotics discontinued. A follow up CBC/CRP (because I begged) this morning still looks good.<br /><br />Natalie started to do better Friday afternoon and overnight. In the morning she was down to 56% O2. They made a vent change (moving her to pressure control/pressure) and her O2 went up by 10%. A short bit later, another nurse was babysitting and Natalie had an event. She spit up, pooped and desatted down to 19%. That is AWFUL. The rest of the weekend was just as bad. Steve was with her until 3AM Sunday morning when she finally stabilized. She was "ok" until Sunday afternoon when things fell apart again. This time an X-ray showed her ND tube in her stomach rather than her intestines, so they attributed her event to that.<br /><br />She is still not bouncing back. The new talk is that she may be microaspirating gastric juices. The surgeon came by last night and suggested we change course. Rather than G tube/nissen, which would be a pretty big hit for her recovery wise, he suggested a G-tube to drain gastric juices and a J-tube for feeding. The J-tube would go directly into her intestines.<br /><br />Here's the problem....if her respiratory status is due to microaspirating and that can only be addressed surgically she has to be in a better place with her respiratory status before she can go for surgery. it is yet another awful catch-22.<br /><br />As for the trach, the neonatologist thought a cuffed trach was worth a try. We are hoping that controlling her air leak will help matters greatly. There is an added bonus that it may help protect her airway if she is aspirating. It was a funny-this weekend while I was in panic mode people kept saying "Have you heard we are going to try a cuffed trach? It will be here next week and maybe that will help." Have I heard? Yes. I was the one who researched the trach and asked for it. Seriously. It is amusing that anytime we have a good suggestion the team immediately forgets where it came from.<br /><br />So, this is where we are. I am desperate for this trach to arrive and hoping it will make some positive improvements. I hate where we are right now. This weekend was the worst kind of fear.<br /></span>Jenniferhttp://www.blogger.com/profile/04269773044878038857noreply@blogger.com8tag:blogger.com,1999:blog-7086766599140502629.post-31105488405127793492010-10-07T02:58:00.002-04:002010-10-07T03:14:44.080-04:00late night<span style="font-size:130%;">I apologize for not updating during the past week. Sometimes it is hard when her status changes so quickly. For the most part she seemed to be doing better after the vent changes last Monday. She would sometimes get down to the high 50's in her O2 needs but would bounce right back to high 80's. Her O2 requirement seems very positional and possibly due to her large air leak.<br /><br />Over the weekend they tried to change her diuretic again. They overlapped with <span class="blsp-spelling-error" id="SPELLING_ERROR_0">Lasix</span> but it still did not work. She once again has very wet lungs and is now on twice a day <span class="blsp-spelling-error" id="SPELLING_ERROR_1">Lasix</span> until that resolves. The past few days have been higher O2's again, sometimes getting back to 100%. There was a <span class="blsp-spelling-corrected" id="SPELLING_ERROR_2">disastrous</span> blood gas but that was blamed on the diuretic issue.<br /><br />Tonight I went in hoping for snuggles but found Natalie to be running a fever. She tends to be a very hot baby normally, but this was above and beyond her norm. They ordered a full septic work-up and I waited around to see what came of it. Her white count is a little elevated, but no bands. Her <span class="blsp-spelling-error" id="SPELLING_ERROR_3">CRP</span> is 17, so a bit above her normal baseline of 2-5. As I was driving home I realized they did not check her ears, so I will call to remind them. That is a bigger baby issue and tends to be overlooked as a possible culprit. Maybe something brewing, maybe not. She is on IV antibiotics until the cultures come back. It was so hard to leave. She was at 100% and just not sating very well.<br /><br />Tomorrow the attending is talking to <span class="blsp-spelling-error" id="SPELLING_ERROR_4">pulmonology</span> and <span class="blsp-spelling-error" id="SPELLING_ERROR_5">ENT</span> about possibly getting her a cuffed <span class="blsp-spelling-error" id="SPELLING_ERROR_6">trach</span> to manage the air leak. It will take time to arrange that even if all parties are in agreement. The hospital does not stock them and it needs to be sent in.<br /><br />I am exhausted on every level. It is 3am and I need to get to bed because there is a certain preschooler who will be up before long. I just wanted to ask for prayers and some positive energy. I am doing my best to bring a happy face to her bedside and think that is what I need myself. I need to feel motivation rather than frustration.<br /><br />I have nice stories of happy snuggle time with Natters and happy birthday celebrations with Annie but that will have to wait. For what it is worth, Natalie looks good and has been pretty comfortable. She does not look as though she is sick, so hopefully this is a blip and she will be rocking the under 60% <span class="blsp-spelling-error" id="SPELLING_ERROR_7">FiO</span>2 again very very soon.<br /></span>Jenniferhttp://www.blogger.com/profile/04269773044878038857noreply@blogger.com7tag:blogger.com,1999:blog-7086766599140502629.post-15575802414578875952010-09-28T16:14:00.005-04:002010-09-28T16:50:49.418-04:00A long week and it's only Tuesday<span style="font-size:130%;">Over the weekend the doctors assured us patience was the key and she would slowly improve, even though it might be a little trickle at a time. I tried my best to accept that. The steroids were not budging her FiO2 at all but her blood gases remained good. My patience wore thin though as she spent more and more time at 90-100% O2. Sunday night I could not sleep. I kept going over in my head what I wanted to tell the doctor and I simply could not shut out the fear.<br /><br />Monday I had our first parent day at Annie's preschool. It was very sweet seeing her class in action and having play time with her. I then went to the hospital where Natalie was requiring 95% O2 but only sating low 80's.<br /><br />Her nurse was on break and the babysitter could not tell me much. I stood at the glass and glared at the doctors on rounds. It is a cliche, but there have been SO many times in our NICU stay where I have had to suppress a<span style="font-style: italic;"> Terms of Endearment </span>Shirley Maclaine outburst from surfacing. I know I will be less successful at conveying my concerns if I am crying or inconsolable, so I did my best to get a grip. Luckily our nurse yesterday is a total sweetheart and great at distracting me. She had a student with her and after about 15 minutes of talking about toddlers I was calmer and ready to make my case.<br /><br />We had ruled out infection, edema and the steroids did nothing. My fear has been that the surgery aggravated her pulmonary hypertension and that the doctors wanted to wait things out rather than escalate her therapy by adding a new med. I know there would be extreme reluctance to resume nitric oxide. Rumor has it that Natalie alone consumed 1/3 of the nitric oxide used in the NICU this year. At the same time, I did not want to wait it out if she was going to be so close to 100% O2. There is no wiggle room if she gets sick and that level of O2 is simply not healthy.<br /><br />I was fortunate that the doctor had reached all those conclusions on his own before we talked. Once again I was spared a dramatic outburst to make my point. He said he would request a consult with cardiology, get another echo and see what they thought.<br /><br />I was able to hold Natalie, although she was agitated. Just as she fell asleep they came to perform the echo. This is about Natalie's least favorite procedure. I left to pump and Steve stayed to hold her hand. Usually we wait 2 days to hear back on an echo. By the time I was done pumping Steve was outside her door with the full report.<br /><br />First, she loved having Daddy with her for the test. They joked that they were going to write an order that he must be present for all future echocardiograms. She actually fell asleep with him holding her hand.<br /><br />There was no evidence of worsening PH. That is great, except now we still do not know why she is requiring so much O2. The cardiologist (who happens to specialize in PH) did not feel she would benefit from iNO. Instead he increased her sildenafil (Viagra) dosage. If she does not improve he will look into further treatments.<br /><br />Once that was over ENT came in to perform her first trach change. Poor baby. It went very smoothly and they say she has healed nicely.<br /><br />During all this time, Natalie was requiring large amounts of oxygen and just could not get comfortable. Steve and I had to take turns leaving the room. It was just too stressful watching her at 100% and only sating in the low 80's.<br /><br />The nurse decided to get her blood gas before trying to get her to sleep and that is when things turned around. Her CO2 was only 32. That is way, way too low. I am going to skip the technical parts, but thanks to a lot of discussion between the respiratory therapists and doctors her settings were tweaked and she slowly improved. Sometimes the right person shows up with the right idea just in time.<br /><br />She was still agitated but it turns out she really likes being tapped on the chest with a face mask (the cushy kind used for hand bagging). This is called pulmonary toilet, or PT. She just melts and relaxes. By the time we left she was down to 86% and sating in the 90's. Who knew you could be grateful for 86%?<br /><br />Last night she was 80's to 100% again. Her CO2 seems to be under control and they have gotten her down into the 70's today. We are very hopeful that this is a turning point but of course know better than to get ahead of ourselves.<br /><br />Today is Ms. Anneliese's 3rd birthday. So far she has had a wonderful day that has been just for her. I am not going into the hospital until after she is tucked in.<br /><br />Thank you for your continued prayers and support. I feel like I am held together by paper clips and Elmers glue right now but am hopeful that this week will bring good things for Natalie. For starters, I now intend to hold her every day. While she had the ET tube it was dependent on her stability, but now she is free. I know it will take her some time to get used to it, but I think she will be a snuggle bug. This also means that grandparents can hold her as well. I look forward to her family getting to know Natters that much more and finally get her in their arms.<br /><br /><br /><br /><br /></span>Jenniferhttp://www.blogger.com/profile/04269773044878038857noreply@blogger.com11tag:blogger.com,1999:blog-7086766599140502629.post-7801822373785347392010-09-26T23:24:00.003-04:002010-09-26T23:59:09.156-04:00Weekend<span style="font-size:130%;">Natalie is still requiring a great deal of oxygen support. Her FiO2 dropped into the 60's Friday but it only lasted 8 hours. She has mostly been right around 86-90%. They started steroids Saturday night in an effort to bring her levels down but after 2 doses we have not seen a change. She will only get 6 doses total unless it starts to really make an impact.<br /><br />She has been able to resume Lasix and her chest films are improving, so the O2 issue is probably not related to wet lungs. I have received several messages regarding different diuretics and I want to thank everyone who offered advice. Natalie has been tried on some more gentle diuretics but always ends up back with Lasix. On the upside, for a month or so now she has been getting away with half the dose she used to require. Hopefully they can get her on some nicer diuretics soon, though.<br /><br />The good news is that she is IV free. Her cultures did not grow anything interesting, so the antibiotics were discontinued. She came off the fentanyl last night as well. Restarting feeds has gone very smoothly and she is blessing us with many dirty diapers. Overall she looks very comfortable and is nice and pink.<br /><br />Her lungs are ventilating with finesse again and Natters has been having beautiful blood gases. Her vent settings have come down considerably. She is back on pressure control/pressure support, which makes us very happy. Her PEEP is down to 4 (where is was pre-surgery) and her total pressure is only 2 higher than it had been. Her rate is 40 and her pressure support is 16. I realize most people do not necessarily follow the numbers, but I like to keep track for future reference and also share with those that get excited about PEEPs.<br /><br />I will not lie-this backslide has been very difficult. I was prepared for a few rough days but not a week of crazy oxygen requirements. I had reached some important milestones myself recently. I no longer woke up in the morning needing to get sick to my stomach, I rarely had fits of panic before calling the NICU and I could actually enter Natalie's room without looking at her O2 setting before looking at her. All that is gone and I feel just as I did when she was at her worst. I understand we are not in the same place we were then, but my heart does not seem to see the difference.<br /><br />At the same time, Annie is living the life of a nearly 3 year old and I am trying to keep up with her. It is such a crazy balancing act when one child is healthy and one is medically fragile. Natalie needs so much more than a typical baby, but the needs of a toddler are the same regardless of her sibling's health status. I ache for the worries I used to have about bringing another baby into the house and how she would respond. This is not at all how someone imagines expanding their family.<br /><br />Annie had her first dance class on Saturday. Before we left I learned that Natalie was requiring 100% O2 and was agitated. So then what? Where do you go? I swallowed my fear, dressed Annie in her leotard and tights and went to make memories with her. Then off to the hospital with the intention of sitting next to Natalie until they gave in and tried the steroids (it took until 10PM). I understand that in many ways I am blessed to have these problems because it means my daughters are both still here with me. That perspective does not always keep the stress at bay and it does not always keep my patience in check. I wish I could have a do-over of Annie's past year. I wish there were 10 extra hours in each day so I felt I was at least partially meeting the needs of my children.<br /><br />Natalie should get her first trach change tomorrow or Tuesday. The first change is a delicate one so ENT will be coming in to perform it. Changes after that will be made by nurses and eventually us. After that Natty will be able to be held and placed in more positions. I am hoping that will help her mobilize secretions and possibly improve her respiratory status. I am trying with all I have to keep putting one foot in front of the other and get through this. Natalie is an incredible baby and I know she has it in her to turn this around and amaze us all over again.<br /><br /><br /></span><div style="text-align: center;"><span style="font-style: italic;font-size:130%;" >Anneliese embarking on a new dancing adventure</span><br /></div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiHmYF4qeNfWsTf90VNxBIeHl711QOSFonuDp2NCPh9rKsa6jemmS15F-qX3bShxxKhJIbZmI-AX_7rI7HpJp4-3cJnKmLcSbzlrc2X6Xw2D9nf7fAz3w2P0Js8yhtBEbJoD2RDNWj3iHg/s1600/IMG_2357.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 300px; height: 400px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiHmYF4qeNfWsTf90VNxBIeHl711QOSFonuDp2NCPh9rKsa6jemmS15F-qX3bShxxKhJIbZmI-AX_7rI7HpJp4-3cJnKmLcSbzlrc2X6Xw2D9nf7fAz3w2P0Js8yhtBEbJoD2RDNWj3iHg/s400/IMG_2357.JPG" alt="" id="BLOGGER_PHOTO_ID_5521436429908805538" border="0" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjcIkBeknax7BfmGEG8KsDzC8q2svla3h8O77QqYJgKdlvI97XtihMO5RL1ZwH3wtkfnKzmfGzhy_UtAJUROH2tpXtpVAfZisv_9mbqyRRjdQaO8iOMQymLHLmQnLUQ8gAU968MlVHThyphenhyphenY/s1600/IMG_2351.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 400px; height: 300px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjcIkBeknax7BfmGEG8KsDzC8q2svla3h8O77QqYJgKdlvI97XtihMO5RL1ZwH3wtkfnKzmfGzhy_UtAJUROH2tpXtpVAfZisv_9mbqyRRjdQaO8iOMQymLHLmQnLUQ8gAU968MlVHThyphenhyphenY/s400/IMG_2351.JPG" alt="" id="BLOGGER_PHOTO_ID_5521436423812696626" border="0" /></a><br /><span style="font-size:130%;"><br /><br /><br /></span>Jenniferhttp://www.blogger.com/profile/04269773044878038857noreply@blogger.com4tag:blogger.com,1999:blog-7086766599140502629.post-86781504673060901042010-09-23T22:23:00.003-04:002010-09-23T22:33:35.749-04:00Still waiting<span style="font-size:130%;">Today was about the same as yesterday. All the vent settings we so slowly chipped away at have come right back. She is back on pressure control and a rate of 55 (it was 60 earlier today but the doctor lowered it again).<br /><br />There are some issues with her electrolytes since she had extra Lasix and that is causing problems with her blood gases. It is all more complicated than I can explain when I am this tired. Hopefully they can get it under control so she can have her Lasix back. Her lungs were not quite as wet today on the X-ray but that won't last long without a diuretic.<br /><br />The doctor keeps saying he has steroids in his pocket and if things are not turning around by tomorrow he will use them. I wish he would already.<br /><br />We also decided officially to delay the GI surgery. She just is not in a place where that is an option. She has not grown in over a month so after she recovers from the trach the priorities are weaning her sedation and getting some good nutrition in her.<br /><br />We appreciate any good thoughts and prayers you can send. This has been very stressful for us both and we are doing our best to get through. Fortunately my niece came to visit this week so we have been able to come and go to the hospital much easier than usual. Yesterday Ty was also the first cousin to meet Natalie. Natters slept through it, of course, but was charming nonetheless.<br /><br />The good news is that Natalie is comfortable and looks very healthy. She has great color and seems to love life without the ET tube. It's just the lungs. When her fiO2 drops below 60 again I will cry from relief. This 86% business is too much.<br /></span>Jenniferhttp://www.blogger.com/profile/04269773044878038857noreply@blogger.com2tag:blogger.com,1999:blog-7086766599140502629.post-62254997426234824282010-09-22T22:50:00.003-04:002010-09-22T23:01:01.918-04:00Recovery<span style="font-size:130%;">We continue to marvel at Natalie's face and her new expressiveness. Any concerns about seeing her with a trach have completely faded away-we just see Natalie.<br /><br />She is much more comfortable as long as she isn't being moved. Her new project seems to be getting her hands on the ND tube and pulling that out but so far her efforts have been thwarted.<br /><br />That is sort of where the good news about recovery ends. Her O2 requirements have been hovering right around 86%. Sometimes a little lower, sometimes as high as 100%. Her lungs have been very wet from surgery so she is back on twice a day lasix. This afternoon they started to think outside of just recovery issues and decided to get a CBC and CRP to look for possible infection. Her CBC is perfect but the CRP is 64 (this is a general indicator of infection and should be <10). The CRP could just be from surgery, but blood and urine cultures were collected to rule out infection. She is back on antibiotics while we wait out culture results.<br /><br />Her CO2 has been all over the place. We've been watching her vent settings slowly climb back up and it is so frustrating. The fentanyl seems to be suppressing her respiratory drive and she is not breathing enough over the vent. The fentanyl will be slowly weaned in the next few days so hopefully we'll see some improvement then.<br /><br />Feeds were restarted this morning. She is at 3cc/hr now and will go up 1cc every 6 hours for the time being (full feeds are 27cc/hr).<br /><br />We need prayers. Patience for us and wisdom for her doctors. This has been a very difficult 2 days. Even while we know the surgery is causing the set back I will not feel at ease until she turns the corner and starts making progress. So far they have not been able to figure out just what will do that.<br /></span>Jenniferhttp://www.blogger.com/profile/04269773044878038857noreply@blogger.com4tag:blogger.com,1999:blog-7086766599140502629.post-55570643063271544402010-09-20T19:33:00.007-04:002010-09-20T20:00:16.923-04:00The Beautiful Face of Natalie Evelyn<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhMpsFe5U8FsWoZuyT1dZrRMovjIDuWmeYLVYK2kCH-PF1DeGMRnW73GqrOXumdHyCYO1UjmjSCI3cCNsZtJRyifUKKuqqh8S_SJMhsIDV4KZbXeJFxmdI21HsOI5LOSVgpZgi2decguvc/s1600/IMG_2345.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 400px; height: 300px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhMpsFe5U8FsWoZuyT1dZrRMovjIDuWmeYLVYK2kCH-PF1DeGMRnW73GqrOXumdHyCYO1UjmjSCI3cCNsZtJRyifUKKuqqh8S_SJMhsIDV4KZbXeJFxmdI21HsOI5LOSVgpZgi2decguvc/s400/IMG_2345.JPG" alt="" id="BLOGGER_PHOTO_ID_5519145244138946754" border="0" /></a><br /><br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjC6fJvfa9H6Mzw33_cjJYwGYEU69hB3r6vITgWxWt7QrphzWSQQDWLZ9LGob9xh_htwnk0cJBa9ijBOIypShsdtYaxcyZ1OHHOKnsCu6_8fIf-zqb5qTnRzC5rPmksVYFv8xcYJYQn8lM/s1600/IMG_2344.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 400px; height: 300px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjC6fJvfa9H6Mzw33_cjJYwGYEU69hB3r6vITgWxWt7QrphzWSQQDWLZ9LGob9xh_htwnk0cJBa9ijBOIypShsdtYaxcyZ1OHHOKnsCu6_8fIf-zqb5qTnRzC5rPmksVYFv8xcYJYQn8lM/s400/IMG_2344.JPG" alt="" id="BLOGGER_PHOTO_ID_5519145232839988994" border="0" /></a><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjYjqyp049LJaP4Z_YZgehyphenhyphen6olZvx5hadKIqpBGKBkbeDDg9r_MkoS9fFmxYf1Hf958ErjKfJHF6obaN8DOMmEsbckkz_lLNfjoUkKTjqoMYAHDQOeNd6QW8HgaxBbgyzBfMBc8gyc8Gsw/s1600/IMG_2342.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 400px; height: 300px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjYjqyp049LJaP4Z_YZgehyphenhyphen6olZvx5hadKIqpBGKBkbeDDg9r_MkoS9fFmxYf1Hf958ErjKfJHF6obaN8DOMmEsbckkz_lLNfjoUkKTjqoMYAHDQOeNd6QW8HgaxBbgyzBfMBc8gyc8Gsw/s400/IMG_2342.JPG" alt="" id="BLOGGER_PHOTO_ID_5519145218361756882" border="0" /></a><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi9QOhSxKe26pMMr_twdem0qPcljAyTlAC6U66tu1wc3YSxFhi6Z_KJENwg9e_JG-oXSYzFI_oAWY15GbJ9C3ytyu9GakCFF-8_UvgUxWdcOK3O5Vr2smtsdAR6xgciYKQwPAcgqpoSLWY/s1600/IMG_2343.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 400px; height: 300px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi9QOhSxKe26pMMr_twdem0qPcljAyTlAC6U66tu1wc3YSxFhi6Z_KJENwg9e_JG-oXSYzFI_oAWY15GbJ9C3ytyu9GakCFF-8_UvgUxWdcOK3O5Vr2smtsdAR6xgciYKQwPAcgqpoSLWY/s400/IMG_2343.JPG" alt="" id="BLOGGER_PHOTO_ID_5519145214459604258" border="0" /></a><br /><span style="font-size:130%;"><br />Just 45 minutes after leaving Natalie in the OR they called up to say all went well and she was on her way up. We watched them wheel her back to her room from a distance and impatiently waited to be allowed back to see her face.<br /><br />Oh, she is beautiful! She did so well in the surgery and does not look at all as though she just underwent a medical procedure. I could cry for hours thinking of her face free of that tube. I was nervous about seeing her with a trach but honestly I had to remind myself to look at it. All I could see was her sweet little mouth.<br /><br />I know anyone who knew Anneliese as a baby will see the sisterly resemblance. Now that the tape is gone her mouth is much more expressive. She made a little smirk and my mother in law and I looked at each other at the same time and said "that is an Annie face!"<br /><br />A few nurses have come in to get a glimpse of her and of course everyone agrees she is adorable. Unfortunately she started to get a little agitated and spit up so we had to leave the nurses to their work. After a blood gas and chest film we can return. I want to sit by her all night and stare. My sweet sweet baby girl. I am so very grateful that she can experience life extubated.<br /><br />Thank you again for your thoughts and prayers. This was a challenging yet joyous day. As always knowing that Natalie is loved by many helped get us through. My father mentioned today that she has been added to two more prayer groups. I am certain Natters is famous in heaven.<br /><br />Counting down the days until we can hold her again-this time without the worries of the ET tube. She will be heavily sedated for the next week while the trach is healing and creating a path. After that the ENT folks will do the first trach change and she will be free.<br /><br /><br /><br /><br /></span>Jenniferhttp://www.blogger.com/profile/04269773044878038857noreply@blogger.com16tag:blogger.com,1999:blog-7086766599140502629.post-68483801868441099252010-09-20T18:06:00.003-04:002010-09-20T18:08:50.728-04:00She's InNatalie went to the OR around 6PM. She should return to the NICU around 8 o'clock. I will update when she is settled. Thank you for all your good thoughts and prayers.<br /><br /><br /><br /><div style="text-align: center; font-style: italic;">Mommy and Daddy say today is the last day with my ET tube! I will no longer be a member of the "naked neck club" but I will rejoin it someday.<br /></div><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEig-XgQUw39ClBmTerryCt_FIMbqEUIPfbUWINDwxpc9ySPc9DPlTnK2IktcAA-mvlNrfBbFhc5dSSgBxPQqRJw7KKFpiCiz_ZIegmYjv5UtwQ06-AH4hvFI2f9Ld0yPRRjkLsAtf1Wvaw/s1600/IMG_2340.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 400px; height: 300px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEig-XgQUw39ClBmTerryCt_FIMbqEUIPfbUWINDwxpc9ySPc9DPlTnK2IktcAA-mvlNrfBbFhc5dSSgBxPQqRJw7KKFpiCiz_ZIegmYjv5UtwQ06-AH4hvFI2f9Ld0yPRRjkLsAtf1Wvaw/s400/IMG_2340.JPG" alt="" id="BLOGGER_PHOTO_ID_5519120585440683266" border="0" /></a>Jenniferhttp://www.blogger.com/profile/04269773044878038857noreply@blogger.com4tag:blogger.com,1999:blog-7086766599140502629.post-60780835499858224422010-09-19T22:16:00.005-04:002010-09-19T23:26:09.662-04:00Trach Eve<span style="font-size:130%;">Wednesday night we were told to come in Thursday and have ENT paged. We needed to sign consent for Natalie's tracheostomy and bronchoscopy (sending a camera down to check out her vocal cords and airway). Monday was not a rumor-it was fact.<br /><br />She is white sheeted for tomorrow. That means she does not have a scheduled time for surgery but will be fit in when they have time. The risk is if there are many emergency cases she can get bumped to a later date. The resident we spoke with said that the surgeon is a big shot, wants Natalie trached ASAP and her tends to get what he wants. I think I will love him.<br /><br />The resident was very patient and went through every aspect of the surgery and recovery. I have a feeling he works with a lot of apprehensive parents-we may be the most excited people to have their baby trached he's met.<br /><br />So! Her pre-op blood work is complete, we got through a fever scare on Saturday and things are moving forward. Her neighbor was moved tonight so that Natalie will have one on one nursing during her post-op time. At midnight she will be NPO (nothing by mouth, or in her case ND tube), at 6AM all her meds go to IV and then we wait for the OR to call. I am bringing my laptop to the hospital so we can update people and of course show off her tape free face as quickly as possible. Sigh...since getting a surgical date I can hardly think about her coming back from the OR. Seeing her face after a 5 month wait, just the thought makes me cry.<br /><br />Backing up to the rest of last week, the nitric when to 1ppm Thursday and she tolerated it beautifully. Saturday morning I came in and they had not rounded yet. When I returned that afternoon with Natalie's Aunt Megan it took me a few minutes to realize the tanks were gone. No more nitric oxide for Ms. Natalie!!!! It was turned off at 1PM, from 2-4PM she was up in her O's but came down on her own. Since then she has been a little higher than normal but not enough to be alarming. I am mostly trying to not think about it and wait to see what happens.<br /><br /></span><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiV28_1MTJiAasyuNvri-hSYaLkqRRfsUgYw03Z2suNiho29mahQGJ0IOfN71o3840feoCbgfqJhD2FzFU5THGH_qGwIsA19wOd2Q3DFJRHS0RRIYXsF9IUpmcPw_xz0cVvp_j0mTEiWoo/s1600/IMG_2299.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 400px; height: 300px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiV28_1MTJiAasyuNvri-hSYaLkqRRfsUgYw03Z2suNiho29mahQGJ0IOfN71o3840feoCbgfqJhD2FzFU5THGH_qGwIsA19wOd2Q3DFJRHS0RRIYXsF9IUpmcPw_xz0cVvp_j0mTEiWoo/s400/IMG_2299.JPG" alt="" id="BLOGGER_PHOTO_ID_5518817139074748802" border="0" /></a><br /><br /><span style="font-size:130%;">Thursday when I saw the neonatologist he mentioned that he had seen Dr. Lee (GI surgeon) that morning and he wanted to schedule Natalie for 1-2 weeks after her trach. This was news to me. I asked if he knew what surgery he was planning and Dr. D said "Oh! He wants to do the G-tube and fundoplication, we've known that for days. I thought I told you!" Even bigger news to me. I am trying to make peace with the decision. The fundoplication is a much more invasive surgery and has more consequences than just a G-tube. At the same time, it may very well save her by greatly reducing the risk of aspiration. They say it is our best option, so we are going ahead. We meet with Dr. Lee this week to go over the surgery and ask our questions. Well, first I have to research fundoplication a little more so I know what questions to ask. Dr. Lee only operates on Wednesdays so the GI surgery will be next week or the week after, assuming nothing comes up in the meantime.<br /><br />The other news is that Natalie was finally examined by opthalmology. The poor child. They dilated her pupils and used some sort of forceps to hold her lids open. When I saw her afterward she looked like she was afraid to fall asleep in case they came after her again. She kept looking around the room suspiciously.<br /><br />So far we know there are problems, but we don't know to what extent they are affecting her vision or what the treatment options are. She has esotropia, meaning her eyes turn inward, and nystagmus, meaning her eyes are shifting back and forth. The good news is that she can track light (but they have to cover one eye at a time) and her optic nerves look healthy. We are now waiting for pediatric opthalmology to examine her and talk with us. The neonatologist gave us his impression but also said he is not that familiar with either of her issues. Now we wait and again try to contain our worries the best we can.<br /><br />Mostly right now we are anxious for surgery to get here and for Natters to finally be comfortable. She is doing her best to hurry things along. Thursday her nurse (T) was charting just outside her door when Natalie's alarms went off. T went in, saw that Natalie had spit up and it had loosened her tape. Natalie seized the opportunity and was pulling on it with all her might. T grabbed the tube to hold it in place, but she was several feet away from the emergency button and she had closed the door behind her. Poor woman had to hold the tube in just the right position and scream until someone heard.<br /><br />Then today I was holding Natalie and she was having the hardest time settling in because the ET tube was gagging her. She finally fell asleep and put her hand over her face as if exasperated. The nurse and I said "Oh, how cute!" Then as quick as a flash she had that hand on her tube and was pulling. Sneak attack! The nurses have to retape her about 3 times a day now to prevent extubation and she has a serious mummy face going on. Can't wait to see what she looks like under all that!<br /><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgLIRasWuD4IIGLr21yPqXLa_8sOPnnDi0IjT3OYclLx32tjjn3nMU3H2Qvk0gsQj8ei6r17lHA75iAT6uJA0bvrOdPO62EFgwsjYTPEtFg4h2dy9gpgbkNrlChHotJHUxaAnD695QOSx0/s1600/IMG_2300.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 400px; height: 300px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgLIRasWuD4IIGLr21yPqXLa_8sOPnnDi0IjT3OYclLx32tjjn3nMU3H2Qvk0gsQj8ei6r17lHA75iAT6uJA0bvrOdPO62EFgwsjYTPEtFg4h2dy9gpgbkNrlChHotJHUxaAnD695QOSx0/s400/IMG_2300.JPG" alt="" id="BLOGGER_PHOTO_ID_5518822231965698738" border="0" /></a></span><span style="font-size:130%;"><br />Annie is turning 3 soon. Our life is too unpredictable for her usual birthday party so we are celebrating with loved ones as we see them. This weekend was the first of her birthday celebrations. She had a wonderful time, as did we. Thank you to our Kash family for giving her such happy memories!<br /><br /><br /><br /></span><div style="text-align: center;"><span style="font-style: italic;font-size:130%;" >A spontaneous cupcake picnic</span><br /></div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhCwNYpYhWbS8uuftBWjm4ZMNjSb17Bj9VBEVJNIKN74weoXdlhbrd29n1m_-aDEUyrGwd4VKxDbWYgq9m0wiT7CDyibW07ouuCcwfI6GWbOt1NTmYfXiqLnx2fIjhic1akoW6MPTp85nQ/s1600/IMG_2319.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 300px; height: 400px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhCwNYpYhWbS8uuftBWjm4ZMNjSb17Bj9VBEVJNIKN74weoXdlhbrd29n1m_-aDEUyrGwd4VKxDbWYgq9m0wiT7CDyibW07ouuCcwfI6GWbOt1NTmYfXiqLnx2fIjhic1akoW6MPTp85nQ/s400/IMG_2319.JPG" alt="" id="BLOGGER_PHOTO_ID_5518825392545636290" border="0" /></a><br /><br /><span style="font-size:130%;"><br /></span>Jenniferhttp://www.blogger.com/profile/04269773044878038857noreply@blogger.com5tag:blogger.com,1999:blog-7086766599140502629.post-21083918471440806012010-09-15T21:33:00.002-04:002010-09-15T22:04:57.900-04:00Crossing Fingers, Holding Breath<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEghYZ1YRoIilBwgGjcmMOCfCP1TUw3lzbAthef_9MHDGV8JdFIvJgD63rGQ66GvfMLUj6bXEAodFTSgHKRpyuCIT-wItWeGwOqBPfaQ5iKDSxxU8kI2zEJSDXMa2kD3Q0gjmegWnDsEX4Q/s1600/IMG_2297.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 400px; height: 300px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEghYZ1YRoIilBwgGjcmMOCfCP1TUw3lzbAthef_9MHDGV8JdFIvJgD63rGQ66GvfMLUj6bXEAodFTSgHKRpyuCIT-wItWeGwOqBPfaQ5iKDSxxU8kI2zEJSDXMa2kD3Q0gjmegWnDsEX4Q/s400/IMG_2297.JPG" alt="" id="BLOGGER_PHOTO_ID_5517318698128407906" border="0" /></a><br /><span style="font-size:130%;">I went to see Natters this morning and we eventually had a very nice snuggle. She had a hard time settling down because of the ET tube but once she did it was divine. Steve and I have both noticed how difficult it is to stay awake when holding her...she's such a snuggle bug.<br /><br />I was there too early in the day to catch the doctor and Steve went in after her left for the day. We did hear, however, what he wanted to talk to us about. The official report is in on her echo and there is no visible change. There is also no evidence of the clot. Big sigh of relief. We would love to hear her echo looks better, but from what we've been told it will take a long time. The fact that it is not worse is incredible and we are very pleased.<br /><br />The other piece of news is that while ENT has not come to meet Natalie, they told the neonatologist that they were looking at MONDAY!!!!!! Originally we were warned they may not make any moves toward scheduling until she was officially off the iNO, and even then they may want her off a few days before getting serious. Today she is at 2ppm, tomorrow should be 1ppm, she has the weekend to come off all the way so Monday is the absolute soonest. People, you know I am thrilled. I realize it is not a promise but it does show they are serious about moving ahead. Smiles!!!!<br /><br />Do you wish I knew how to spell ophthalmologist? I realized that I have been missing the first "l" in previous posts. Sorry. I suppose it is a word I should learn well. We are still waiting for them to come see Natalie and give us their opinions. I have done some reading on infant eye issues and am really not surprised that she has developed problems. The poor child has been kept in cave like darkness (of course this is because she demands it) and her head is almost always sideways. When she looks straight ahead one eye is blocked by her mattress. Add in the high levels of sedation she's been on and the lack of normal baby activity I suppose maybe eye issues were inevitable. After the trach I imagine her eyes will be my next obsession. That and snuggling.<br /><br />Right now I feel like I am chomping at the bit. I want Natalie to be in a position where she can be comfortable and move ahead developmentally. We are so close and I am trying to remind myself to be patient. Even when she can be more hands on there is a lot of catching up to do developmentally and I need to prepare for slow steady progress. I also do not want to get so caught up in her development that I miss just enjoying Natalie.<br /><br />Nat gained some, then lost again two weight checks in a row. The nurses have talked them out of fortifying her more before surgery. They are too afraid it will throw her off and cause issues. I am increasing my pumping efforts and seeing some gains. I am determined to catch up to her needs. Seeing what a measly 4 teaspoons a day of formula has done to her digestion makes me realize just how much human milk means for her.<br /><br />Thank you for you continued support and prayers. I can not express how much it means to all of us. I am always telling Natalie that people we have never met are loving her and sending prayers on her behalf. We are beyond blessed.<br /><br /></span>Jenniferhttp://www.blogger.com/profile/04269773044878038857noreply@blogger.com3