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.

Mean Seizures

I always have a good Monday and for some reason today was really not a good day for me.  I struggled with a lot of secretions and way more seizures than normal and they have been very mean to me!  I had a few extra doses of morphine today to help me but that didn't really seem to help either.

We will talk to Dr. Gien as soon as we can and see if a medicine increase will help.  At this point I need to have something that will help because I was pretty miserable today.

No pictures today since I was having lots of trouble so Mommy found one from a year ago tomorrow!  I was such a little peanut.

Home Alone

Well not really, but Mommy, Brody and Daddy were out of the house last night and I got to spend special time with my nurses Ines, Heather and Tiffany!  Brody spent the night with my great Aunt Marie and Mommy and Daddy spend a night away for their 6th wedding anniversary.

My respiratory distress has been pretty bad the last few days and I am still having some trouble laying on my left side.  I am on a really high concentration of oxygen to keep my stats up which tells Mommy and Daddy that my lungs are probably in pretty bad shape.  We have managed to keep my medications at the same level for a while now but are seeing signs of needing to increase them again.  We will wait it out a few more days to see if there are any improvements.

When Mommy and Daddy got home today I took a nice nap with Daddy and Finnegan.  Brody was sleeping too but I didn't want him sleeping in my bed since he is a very restless sleeper:-)

Happy Girl

I am such a happy girl because Mommy and Brody got home!  The house has been bustling with noise and excitement since they got home late on thursday.  I even got some special presents from Florida!

Mommy bought me a pink Minnie mouse hat and Nana and Pop-Pop got me a cute Minnie Mouse doll!  I've been snuggling with her ever since.  I am waiting for my new Minnie Mouse pajamas to be washed so I can wear those too:)

Mommy and Brody told me all about their fun trip and while I was sad to miss all the fun it would have been hard for me to do all the things they got to do, so I got to look at the pictures and watch the videos instead.

First mommy said they went to the beach with Auntie Dina and her little boy Rhett.  Brody was a little afraid of the ocean because all the pelicans were diving into the water and catching fish!  Boy does that sound neat.

Then they got to go to the Naples Zoo where they saw lots of neat and different animals....like crocodiles!  And, Brody even got to feed the fish with Pop-Pop.

Then they went to Disney World!  One of Nana and Pop-Pop's friend, Mr. Daly wanted to treat Mommy and Brody to a night at Disney so he booked us all a night at the Saratoga Springs Resort and boy did they have a blast!  The pool was so much fun and Brody went down the big water slide all by himself at least 20 times Mommy said.

Then they all went to bed early so they could get up and go right to the Magic Kingdom.  All the rides sounded like so much fun and Brody had such a great time on all the rides, especially the race cars, and even enjoyed all the dancing and singing shows too.  They tried to stay for the Main Street parade but Brody was too tired (along with Mommy, Nana and Pop-Pop!).

Then they had more pool time at Nana and Pop-Pop's before getting back on the airplane to Denver and boy was I glad to see them:-)

It has been a rough few days for me.  I am having trouble keeping my oxygen up and have needed lots of extra doses of morphine and lots and lots of albuterol nebulizers.  We had to get a new oxygen concentrator that goes up to 10 liters/minute to keep up with me.  I don't need that much all the time, but  I have episodes where my oxygen has dropped really low and I need the help.

I have also been coughing up some rust colored mucus which is new.  We will have to keep an eye on that over the next few days.

Me and Mr. Shmoo

Well, last night wasn't too bad, but I finally gave my nurse Joy a pretty hard day.  I have to keep Joy on her toes too ya know; just like Daddy :).  Most of the morning and afternoon I was battling a low-grade fever, high heart rate, and some periods of low oxygen.  Joy gave me some fever medicine and some extra morphine and by late afternoon I was able to finally calm down.  However, it all started again shortly after Daddy got home.  He gave me more fever medicine, valium, extra morphine, albuterol, and hyoscyamine to try and help me.  He thought about throwing in the kitchen sink too, but I'm glad he didn't go through with it :)!  After all that my fever went down and I was able to calm down again.

Tonight I had some troubles again with laying on my left side.  I just can't seem to make up my mind about whether I like it or not these days.  When Daddy put me on my left side I began to breathe heavily, but my heart rate wasn't too bad/high; for me at least; but when nurse Darlene got here and checked me over she heard very little air movement in my left lung.  Daddy decided to move me back to my right side and that seems to have helped.  My heart rate has gone down a bit more and Darlene was able to hear better air movement again.  What can I say? I'm an enigma.  Or at least that's what Daddy calls me.  By the way, can someone please tell me what an enigma is?  I am feeling a bit better now, so I think I'll try and catch a few zzzz's.

Oh yeah, Daddy took my picture today with one of my favorite stuffed animals.......Mr. Shmoo.  Isn't he cute? Night, Night.

Weekend with Daddy

With Mommy and big brother Brody visiting Nana and Pop-Pop in Florida, I got to spent the weekend with Daddy!  Pop-Pop sent Daddy a picture of Mommy and Brody at the Naples Zoo today.  I sure wish that I could have made the trip too.  I miss getting outside.  Hopefully it wll be spring time soon and I can sit out back.  Unfortunately, I was fighting a fever off and on for most of the weekend, which made my heart rate awfully high and Daddy awfully tired.  The fever makes me very uncomforatble and Daddy to give a bunch of tylenol and ibuprofen to bring the fevers under control.  My friend Marsha came over on Saturday evening to watch me so Daddy was able to go out for a while with a couple of friends and grab some dinner.  My fever had gone down at that point and I had a good several hours with Marsha.

Overall I am doing about the same, but I think that I am beginning to breakthough on the current medications I'm taking.  My seizures are becoming more outward and I sometimes shake all over and sometimes  just kinda lock up.  Daddy thinks that we may need to talk with Dr. Gien soon and increase some of the doses.  We're going to see how it goes for a few more days and then decide on what we are going to do.

Today was a pretty good with my Monday Nurse Joy.  I always seem to have good days wth her.  When Daddy got home from work and Joy left, I decided to poop a couple of times just to make Daddy work a little bit more....hahahahaha  I didn't show it, but I was laughing on the inside :).  I am having a few problems this evening, but not too bad.  Lately I have been pretty weak and spitting up the mucus from deep down in my throat is becoming much harder.  We often use albuterol nebulizer treatments to loosen things up and that helps me get the bad stuff out.  Hopefully that works again for me tonight.

I miss my Mommy and Brody, but I hope that they are having a good time in sunny FLA.  Enjoy Disney World Brody. I want a full report when you get back.....and a Mickey Mouse doll too!  Time for sleepies.  Good night.

Au revoir maman et son frère

I had another pretty good night and day today.  Last night started out rough but only because I pooped.  My nurse Beth gave me a few albuterol nebulizer treatments to try and help my respiratory distress which seemed to work because I was able to cough up a bunch of congestion!  After that I fell into a pretty deep sleep until later this morning.

I had a little trouble later this morning with my respiratory distress and my nurse Ines was able to nip that in the behind by moving me around, giving me nebulizers and a steam bath.  That took care of it and I was able to fall fast asleep for most of the afternoon.

Mommy was very busy today running errands, doing laundry and packing.  She and Brody are headed to Naples, Florida tomorrow morning to spend some time in the sun with Nana and Pop-Pop Reed. I will miss them terribly but Daddy will be here with me.

Au revoir Mommy and Brody!

Great Girl

I am shocked to report that I have been a good, no, a great girl the past two days and two nights!!  Mommy and Daddy thought they were going to have to talk to the Dr. last night to see if we could increase medications but I had such a good day that they decided to wait.  It was a good call because last night and again today my nurses both called me a little angel!

I was even able to lay on my left side the past two days so whatever was bothering me earlier in the week must have gotten better.  It has been a busy few days for Mommy so she hasn't been able to take a picture of me but she was able to find a video she took almost a year ago today (2/21/11).  I was just a month old and we still didn't know I was having seizures at this point.  Most of my movements seen in this video were probably related to seizure activity.

Happy Heart Day!

Happy Valentines Day!

I am starting to sound like a broken record...I had another rough night last night.  I needed a few extra doses of morphine and versed last night and was fighting a fever, respiratory distress and lots of outward seizure activity.

Today was a little better but probably because I had such a tough night and I was completely worn out.  I even slept through all the Valentines day celebration going on in the house which really just meant lots of chocolate flying around:-)

I have also not been able to sleep on my left side for the last 24-hrs.  We have tried to lay me on my left side a few times and each time my oxygen drops or my heart rates goes sky high (or both!).  We will see how tonight goes and then probably give Dr. Gien a call tomorrow to see if there is something we can do to help me feel better.

Super relaxed

It turned out to be another rough night.  My nurse Heather tried giving me Versed to help what looked like seizure activity and I kept throwing it up.  I had an off and on again fever and lots of respiratory distress.

I am also showing signs of not tolerating laying on my left side again.  The first time Joy tried laying me on my left side today my heart rate increased really high and the second time my oxygen dropped really low.  Otherwise, it was a pretty good day.  I didn't need any extra medications and slept most the afternoon.

When Mommy and Daddy got home this evening I was in a pretty deep sleep and my heart rate kept dropping low, making my pulse-ox alarm go off.  Mommy changed my pulse-ox probe to make sure it wasn't going haywire, but that didn't seem to make a difference.  Maybe the new relaxing CDs Mommy made me this evening are working better than we thought....

Long lost enemy

Mommy and Daddy switched it up last night with Mommy watching me first and I was a sleepy good girl!  It wasn't until about 2:30 am when the shift change happened that I started to have problems.  My oxygen was dropping pretty low and turning up my oxygen concentrator wasn't making a difference.  A little bit later after Mommy went to bed, I had three big poops in a row!  Poor bleary eyed Daddy had to deal with the clean up and the respiratory distress that comes along with my poops.  I calmed down after that ordeal and fell back asleep.

I slept the first part of the morning with Daddy and then spent the afternoon with Mommy while Daddy put his ski rack on his car!  My heart rate was creeping up again and I was having oxygen issues and wouldn't you know it, I pooped again - twice!  Mommy had though she was home free since I pooped for Daddy but boy was she wrong.

After the cleanup we switched it up and uncovered a long lost enemy - my bouncy chair.  I used to HATE my bouncy chair since it #1) didn't allow me to arch backwards and #2) kept me on my back.  Mommy though we would give it another shot since it sits me a little more vertical and I am liking lying on my back these days.

Guess what....I liked it!

I was worn out after all that and slept almost all afternoon.  I started to wake up around dinner time and was dealing with low oxygen again.  I was on my left side and the minute Mommy picked me up my oxygen also went up...

She put me back in my crib on my right side and my oxygen seemed to be doing just fine.  I had lots of congestion and now that my nurse Heather is here I am starting to relax again.  It's a chilly one here in Denver so I am glad to be in my warm cuddly bed!