Thank you and goodnight

It has been two weeks and about 7 hours since Dan and I said goodbye and I love you to Tessa knowing that she could hear us.  I've done it every night since then but can only hope my little girl can still hear me somehow.

Last Tuesday, March 13, 2012, Dan, our parents and I were able to see Tessa for the last time.  We held her and kissed her trying to memorize exactly what it felt like knowing we were never going to get another chance.  I can still see that exact image of her beautiful face with her eyes closed and our noses pressed together giving butterfly kisses.  It was so hard to let her go and to walk away but we wrapped her up tight in her pink blanket and told her favorite stuffed piggy to protect her.

Later that afternoon we had a beautiful ceremony for Tessa at her house by our Hospice Chaplin Elizabeth with our parents, Aunt Marie and Uncle John, all of Tessa's nurses (Joy, Ines, Tiffany, Darlene, Beth, Heather and Paula), Tessa's special babysitter Marsha, Tessa's favorite doctor (Dr. Jason Gien) and of course Brody and furry brother Finnegan.

Tessa had such amazing and wonderful people caring for her and I am sure that gave her the strength, courage and desire to fight for each day she gave to us.  Tessa loved each and every one of you and we would like to thank you for your dedication and the love you gave to her.  We would also like to thank the Hospice staff Lynda, Carole and Haley who made sure Tessa had the best care and everything she needed.

The outpouring of love and support we have received over the last two weeks has been overwhelming. To read all the emails, blog comments, texts, cards and facebook messages  has really given us the strength to keep going.  We want thank everyone for their generous donations to the Children's Hospital in Tessa's name.  And everyone who sent flowers, gifts, food and offered mass and prayers for Tessa, we thank you from the bottom of our hearts.

The Sunday after Tessa died (March 11th), our block neighbors on Krameria St. woke up early to tie white ribbons in honor of Tessa on all the trees that line the street of our block.  It was a beautiful sight to behold and brought tears to my eyes when I saw it and makes me cry now just thinking about it.  It just amazes me to know how many lives Tessa touched and I am so proud to be her mother.

I really miss sitting down every night next to my little girl and writing about her day in this blog.  I am so thankful for making the decision to do this documentary of Tessa's life because now I have so many wonderful pictures and memories to look back on and remember my time with her.  Thank you all for reading and taking part in Tessa's life story.

Love and Support

We want to thank everyone for all the love and support that we have received over the last few days.  Your beautiful messages have provided us with the comfort of knowing that Tessa had so many people supporting her through her journey.

As her parents, we have decided to have a very small, private service for Tessa on Tuesday afternoon around 3pm with our immediate family members.  We understand that so many of you would like to pay your respects to Tessa in person, but we hope that you can understand our decision during this very emotional time.  We ask that around that time, if you desire, please take a moment to share your thoughts with Tessa.  We know that she will be listening :)

In lieu of sending flowers and gifts to our family, we request that you please donate to the Colorado Children's Hospital with the following link:
http://teamchildrenscolorado.kintera.org/tessareedshea?faf=1&e=5535635412

While there was no known cause or cure for Tessa's condition, we hope that one day advances in the perinatal and pediatric medical communities will find a way to prevent another baby (and family) from having to endure the same pain and suffering.

Tessa's strength and courage to live was something that was truly extraordinary to behold.  Her loving memory will part of our lives forever.

A Beautiful Life

Tess, the struggle that plagued you has ended, the tempest is over.  You are finally free.  Free of the misery that you were forced to suffer.  I hope you take with you the sweet memories of the warm summer breeze on your face, the gentle kiss of your brother on your forehead at bedtime, your Mommy’s gentle embrace, and your Daddy’s undying love.  I loved you from the moment that you came into this world and I love you more with each passing day since you left.  I can only hope that you are now at peace, free to dream your sweet dreams while you sleep, and that you are able to be united with your oldest brother Emerson.

You gave us all so much in such a short period of time.  My mind is full of loving memories of the time you shared with us.  You shed your radiance and gave your love to everyone who cared for you; to anyone who had the privilege just to hold you.  Unfortunately, you were only meant to stay with us for a brief, shining moment in time.  You were a “human being that was given to fly.”  It seemed as though it was the night that brought you the most anguish and suffering.  It was at night when I would plead for our roles to be reversed; take me not her.  Countless times I wished that the night would never come, but it always did.  Now, it’s ironic that I have to beg the night for sleep just to dream of you.  I will forever be haunted by night.

You were forced to overcome so many odds from the moment you were born until the end of your beautiful life. So many times we thought the end was near, but you were a fighter, and kept finding the strength to survive. You never gave up hope on life.  However, in the end, I was powerless to save you.  I was not able to be the hero in your story, but I was able to witness your extraordinary courage with envy and awe.  You demonstrated more bravery in your short life than I have in a lifetime.  Buddha says “A child without courage is like a night without stars.”  He believed that at birth, children are instilled with an extraordinary amount of courage, which is many times lost over a lifetime of struggling to deal with the day to day “burdens of life.”  I fear that your passing may have overcome the last remaining fragments of my childhood spirit.

Now with you gone, nothing will ever be the same again.  The stars will never shine as brightly, the full moon will never be as radiant, and the sunlight will never feel quite as warm on my face as when you were with me.  My spirit is battered and my heart is fractured.  I look in the mirror and I am almost unrecognizable to myself.  I am adrift, mired in a fog of emotions and tears.  I feel as though I am a shadow of my former self.  It is as though my soul has been in hiding; barely surviving while waiting for the inevitable; your utterly tragic death.  Not only have I lost my beautiful daughter, but you lost the chance to live your life; A life now unrealized.  That is the true cause of my heartbreak and my rage.

But as I search for some solace, some semblance of sanity that I can draw from this past year of madness, I am beginning to realize that during your struggle you were sending me a message.  A message to never give up; to “not go gentle into that good night;” to persevere despite the “burdens of life” heaved upon us. You have shown me that love can truly conquer all things; even your death.  You have inspired me to try and recover what I had lost; my courageous childhood spirit.  You have given me the strength to rebuild what has been so violently ripped apart by your death; my soul, my very being.  In the end, it is the daughter who has taught the father a valuable lesson; to endure; and to live this precious gift of life to the fullest without fear, anger, or regret.  I promise you sweetie, I will try not to let you down.

I am so sad that I have lost you and that I will never be able to hold you again.  But, I am also so happy for the time that we were able to share together; that I was given the opportunity to love you.  Farewell my sweet, sweet girl, my love, Mo Chuisle. You will forever be my Tess……the pulse of my heart.

“May the road rise up to meet you.
May the wind be ever at your back.
May the sun shine warm upon your face;
The rains fall soft upon your fields.
And until we meet again (Tess and Emerson),
May God hold you (both) in the hollow of His hand.”

Tessa Reed Shea 1-18-11 to 3-8-12

I am sitting her tonight by myself without my little girl to help me write how her last day here on earth went.  The hardest thing a parent can ever do is watch her child take their last breath and do nothing to help except hold, kiss and tell her everything is going to be ok knowing that is the best thing for her.

Tessa’s day started out like any other, with her wonderful nurse Tiffany giving her a few feedings and a bath.  Tiffany even sent me a picture at 9:30am of Tessa enjoying her warm steam bath in the kitchen sink.  Things started to go downhill after that and I got a call around 11:45 am telling me to come home.

It was the call I knew would come one day but I was not expecting it today.  In my mind I had imagined how it would happen but never thought it would be a reality.  As I raced out the door and got into my car my thoughts flip-flopped from thinking I am not going to make it home in time to thinking as soon as I get home she is going to be fine.

The minute I walked into the door I knew this was her time.  She has scared us so many times before but for some reason this time felt so different.  Dan and I couldn’t hold her enough from the moment we both got home until 4:00 pm this afternoon when she passed away.  Her last hours were so peaceful and she is such a little warrior.  We had a chance to look each other in the eyes and tell her that we love her.

Friends and family always tell us how amazing we are for all we have done for Tessa, but I think she is the amazing one.  We will miss her forever and always.  Goodbye my little Lovebug.

Daddy has a special message he will be sharing in the next few days.

Two rare things at the same time

I had a pretty good night last night with my nurse Darlene:-)  Today started out rough giving my nurse Tiffany a workout between me and the suction machine.  She gave me a bath a bit early to see if that would help me and it relaxed me so much I pooped in the tub!

After that I started to calm down and my physical therapist Neala stopped by and gave me an amazing massage and stretch.  My heart rate was the lowest it has been in weeks.  Mommy thinks we should get a masseuse to come to the house and massage and stretch me every day!

When Mommy and Daddy got home this afternoon my eyes were open and I was relaxed - two things that don't often happen together so they decided to take a video.  Enjoy!

Soaked Mommy!

Mommy was too sleepy to help me post last night so we are catching up today!  I've had a fever off and on over the past two days.  I had a pretty good Sunday night and I wasn't on my best behavior for Joy in the morning on Monday but I made up for it in the afternoon.

My hospice nurse Carol stopped by on Monday after my bath and we are going to see if another oxygen face mask might work better since I seem to breath mostly through my mouth and my nasal cannula only goes into my nose.  That may be one reason why I am needing so much oxygen.  When Mommy got home I was still asleep but I decided to wake up as soon as Joy left and just in time for dinner.  Luckily Daddy got home and they took turns taking care of me while the other ate dinner with Brody.

Mommy decided to hold me in the rocking chair and read to me and see if that could get my heart rate down.

After holding me for about 20 minutes she felt something warm in her lap.  I had been holding it all day and finally decided to go pee!  My diaper could not keep up and I ended up soaking my pants along with Mommy's pants too.  It was a big mess:-)  Everything else seemed to fall into place after that and I fell asleep in my crib.

My night with my nurse Beth was great until about 5 am when I decided to poop TWICE!  But, again it made me feel so much better and I fell fast asleep afterwards.

Today was more of the same with a pretty good day and a few rough patches.  Overall I am doing much better than before my medicine increase but I am needing much more oxygen to maintain a somewhat normal oxygen percentage.  Massage day tomorrow with my therapist Neala!

Bath by Brody

I had a pretty good night with Mommy on Friday night only giving her trouble when I decided to poop twice at 4 am:-)  I even stayed in bed and slept all of Saturday morning and didn't get up until the afternoon when Daddy gave me a bath.  My oxygen level was high and my heart rate was nice and low.

Daddy watched me on Saturday night and I was pretty good except for the 11pm and 5am poop!  I went through 3 pairs of pj's which kept Daddy very busy!  Today started out like Saturday with me sleeping a lot, but my heart rate was high all morning. The sun was shining in on me so Finnegan decided to take a nice nap with me.

Then this afternoon I woke up so Mommy decided to give me a bath and Brody even decided to help wash me too!

The bath helped me get some congestion up which seemed to go on for hours.  From about 3:30 to 5pm I coughed up congestion and Mommy helped suction it out.  When I finally started to relax she put me in my new chair and hooked me up to my pulse-ox to check my stats and my heart rate was high and my oxygen was in the low 80s and upper 70's which isn't good considering I was on 6 liters of oxygen.

She turned up my oxygen and that didn't help at all.  Daddy came in to try and help but not position change or suctioning seemed to get me oxygen up.  Finally Mommy turned on the shower and we sat for 20 minutes in a very steamy bathroom.  Once they hooked me back up my oxygen was a little better so Mommy decided to hold me and my oxygen slowly went up to a safer level.

I am resting in my crib now and still on a high concentration of oxygen.  I am pretty worn out from that episode so hopefully I get a chance to rest tonight.

Ups and Downs

I've been riding a vitals roller coaster the last few days.  On Wednesday night I had a pretty scary episode with my nurse Heather.  After my midnight dose of phenobarbital, my oxygen plummeted really low and my respirations (breaths per minute) were in the low teens and my heart rate was very hight.  I went really limp and no position change seemed to bring me back to a safe zone.  Daddy even got up to see if he could help and the only thing that seemed to help was time.

We think it may have been because of a high level of phenobarbital in my system since we gave me some extra doses to help with the bad seizures I was having 24-hours beforehand.  My extra doses of morphine and valium are helping to keep me calm and keep the spastic seizures to a minimum.  My heart rate goes up and then goes back down all day along with my oxygen.  I still haven't been able to be on less than 2 liters of O2 and sometimes I can be on as high as 8 liters depending on what is going on.

Mommy and Daddy are on their own this weekend since we don't have the help of my wonderful nurses. It is hard for both of them but it lets everyone get some good one-on-one time to spend with me.  Mommy is on Friday night duty with me and I am going to try my hardest to let her get a few hours of sleep, otherwise she can be a real grouch:-)

Big Girl Chair!

Mommy and Daddy finally talked to Dr. Gien last night and we decided to increase my Valium and Morphine doses.  Then to help while we wait for that increase to kick in, we also decided to give me two smaller additional doses of phenobarbital to increase the drug in my blood stream and help me calm down.

All of the changes seemed to help outwardly calm down but inwardly I am still struggling with something that is causing my high heart rate.  We will see if over time my new medicine doses help to calm my heart rate down.

My therapist Siobhan stopped by today and dropped off a new chair for me called a tumble form chair.  It is a special chair that allows me to sit in a recline that I feel comfortable with and is soft and cuddles around me.  My nurse Tiffany let me try it out today and I sat in it for almost an hour!

It even helped me cough up some congestion I was holding on to for a while.  I am going to try it every day and get more comfortable sitting up just like a big girl!

Pretty Awful

I have had a pretty awful night and day again today.  Extra doses of medication don't seem to be doing the  trick and my heart rate has been through the roof almost all day.

Usually when Mommy and Daddy get home I am asleep but today was the complete opposite.  I got my normal dose of Valium and Morphine at 6pm and it has been non-stop seizures, heart rate in the 180s and 190s, non-stop suctioning and piles of medications ever since.  It is almost 9pm now and my heart rate has come down a little but I am still awake and having an awful time.  We are waiting to hear from my doctor tonight and see what we can do.  If we don't talk to him Mommy and Daddy might have to play pharmacist.

Mommy got a picture of me for the two seconds I was asleep today.  I don't look so great in the other photo but I was really having a hard time.  My normal snuggle with Mommy didn't even calm me down.