Wednesday, July 29, 2009
Long days, longer nights
I apologize for not posting the past couple days. Our work days have been busy and the nights seem busier. Sarah and I go
see Tristan's bed each night after work. It is a great feeling when we are there because although we know he is with us in
spirit at every moment, it also feels good being together physically. We talk about our days and talk about Tristan. We tell
each other stories about things Tristan had done while in hospital and things we would have liked to see him do throughout
his life at home. Although it is tough when we think about all the things we will never get to see Tristan do, it is comforting
to imagine him growing up and all the "first moments" all children go through. I sometimes imagine him stumbling
from the table to the couch as he takes his first steps. The only problem is it usually ends in me crying and missing him
more. Sarah and I are taking baby steps now as we imagine seeing our little Tristan grow up. We do get to talk a lot every
night which is great. Our relationship has flourished since Tristan was born from what we felt was a great relationship before.
The hardest part of the night is when we go to sleep. I have been able to sleep through the nights fairly well but Sarah still
struggles to sleep without waking up multiple times. The hardest time for us is not being able to kiss Tristan goodnight and
rubbing his head until he sleeps. These are things that are taken for granted until you don't have them. We have also have
become more attached to each other. If Sarah is leaving, I am going to. If I go for a walk, she is right there with me. Our
strength multiplies when we are together. We don't want to be apart any more than we have to be.
We did purchase the
web space for Tristan's new site. The site will be www.HeartofaHammer.com. Now Sarah and I are going to learn together how
to build a website. Once it is setup we will post it on the blog. Thank you everyone for your prayers and support.
5:54 pm est
Sunday, July 26, 2009
Time
Everyone says time heals all wounds. When something happens in your life you learn to grow, accept it and most importantly,
learn from it. I felt like I was staying strong and accepting that Tristan is in a better place but tonight was a different
story. Tonight I realized that this will not be something I can accept for a long time. I have been as strong as I could be
through the entire process but tonight it caught up with me. I miss my son Tristan. I miss him more than you could ever imagine.
I realized no matter how much I miss him the only time I can see him is in his pictures and in my dreams. He fought so hard
during his short period here with us. I try my hardest not to complain or blame God but it is hard. Why and how does God think
we can handle this? Tristan did everything he could do to get through surgery and his rehabilitation but his anatomy would
not allow him to remain with us. What makes God think we are strong enough? I pray he gives us the answer because this is
hard. I miss Tristan, I miss him so much. I can't wait for him to visit me in my dreams.
9:38 pm est
Thursday, July 23, 2009
In Time of Loss
This is from a prayer card that a friend gave us today:
In Time Of Loss:
Lonely is the home without you, Life to
us is not the same;
All the world would be like heaven, If we could have you back again.
A light is from our household
gone, A voice we loved is still,
A place is vacant in our home, That never can be filled.
May the God of Love and Mercy,
Care our loved one who is gone,
And bless with consolation, Those left to carry one.
The happy hours we once enjoyed,
How sweet their memory still,
But death has left a vacant place, This world can never fill.
How dearly we loved you,
And prayed you might live,
But Jesus just beckoned, And we had to give.
God gave us strength to bear it, And courage
to fight the blow,
What it has meant to lose you, God alone will ever know.
8:48 pm est
Wednesday, July 22, 2009
Back to Reality
Well today David and I returned to work. We had originally planned to go back on Monday and we just could not do it yet.
Today, it wasn't easy, but we managed to get up when the alarm sounded and go about our "normal" routine of getting
ready for work. There was such a mix of emotions this morning while contemplating going to work. Of course it would be fairly
normal to feel awkward after being off of work for awhile, regardless of our more recent history, but this was more than that.
A part of me was looking forward to having something else to occupy my thoughts and another part was scared to give up any
of my mind to anything other that Tristan. It feels like a slippery slope. It is a sort of guilty feeling to know that I
spent any 'large' amount of time thinking about something so trivial as work. And once I start to do that I fear that I will
spend less and less time thinking about Tristan and then it is only a matter of time before...I begin to forget things...
Today
I had a simultaneous desire to talk about Tristan to everyone that would listen while at the same time I feared that someone
might ask me about him. I want to cover my office with pictures, like any new mother, but I am scared to be constantly reminded
of what I have lost. I don't want to make people around me feel awkward or uneasy but no matter how hard I try, I cannot
pretend that I have not just suffered the biggest loss I could ever imagine.
Today was the first day going back to reality
and it was not an easy step. We know that each day will get a little easier and we are being sure to lean on each other for
support. It was so nice to get home from work and be able to go see Tristan. We took Oliver with us for the first time and
had a very nice walk knowing Tristan was close. It was great to confide in each other about how our day went and know that
there is at least one person who knows exactly how I felt all day. David has continually referred to me as his rock, but
tonight, he was mine. Tomorrow will be another day and we will get through it together with our angel Tristan watching over
us.
9:42 pm est
Tuesday, July 21, 2009
A Note From Heaven
If I could write from Heaven, this is what I'd say, Please don't miss me too much, I'm with you throughout your day. You
may not see or hear me, but if you're quiet and still, You may just feel my presence; because, in Heaven, there is free will.
Don't worry for the day, it will come and go as planned, Enjoy each moment you are given, keep worry from your hand. Keep
sorrow to a minimum; For if Heaven you could see, You'd know I'm safe and happy, I did not cease to be. Moments in time are
brief, until we'll be together again, as Eternity lasts forever, our lives, they have no end.
This was from a card
received today. It has a great message that touched us when we read it. We will continue to post a message each evening since
we will be at work during the day. In the following months we will also try to get the new website up and running. Once we
have the address it will be posted.
Have a great Wednesday and take a moment to compliment someone. Positivity spreads.
9:31 pm est
The Mansion of Heaven
The world, however beautiful, was never meant to The place that we would call our home for eternity.
And though we
would not choose to leave, a loving God knows best, And in His time, He lifts us to a place of peace and rest.
For
He has built a mansion where His children will abide, Free from pain and sorrow, forever at His side. And though there may
be many things that we cannot explain, We can be sure it breaks His heart to see His children's pain.
In loving arms,
He bears us to a quiet place apart Where He mends the wounded spirit and heals the broken heart.
And though these ones
we love so much have left our present sight And passed into a better world of majesty and light, Someday we'll be together
in our Father's home above Where we'll thank Him for His mercy and praise Him for His love.
This was a card that was
sent from a friend of ours mother and father. Tristan is in a better place and one day Sarah and I will hold him again. But
until then we will see a reminder of Tristan everyday which will make us both happy and sad. We are so proud of our little
angel and will never stop missing him. We love you Tristan. Help keep us strong.
7:04 am est
Monday, July 20, 2009
A Great Poem
This was found on a website I viewed as well as a poem written by a mother who lost a child.
7-8-9
Is
more than a cool number sequence to me.
It's the day you should have been in your Mommy's arms.
Dear Child, please know
you are not forgotten.
You are thought of every day.
My heart will always ache to know more
about who you would
have been.
I wish I knew your favorite show
Your favorite bedtime story.
My arms reach up to heaven
to reach
for your sweet, chubby cheeks
to touch your tiny nose
to cuddle you close.
This hole in my heart will always
remain.
It can not be filled by time
It can not be filled by other children.
It's my space I keep just for you.
So reach down for me now
and know that every tear Mommy cries on this day.
Is just a symbol of how very loved you
are
My sweet Angel Baby.
We did not return to work yet today. We are going to take a couple more days to be
together and prepare for the new normal. Tristan we truly love and miss you.
7:56 am est
Sunday, July 19, 2009
2 months
Waking up this morning things become a little more difficult. We had planned on going to church this morning but are just
not ready for that big of a crowd yet. Our return to work is still looming too. We are planning on returning to work tomorrow
but are nervous that it will be too much too soon. Our lives have changed and will never be the same which makes it that much
harder to do ordinary day to day activities. We have continued to receive unbelievable support from friends and family. Tristan
would have been 2 months old today and we miss him dearly. Sarah and I have been going on daily walks at parks and seeing
Tristan's bed at least once a day too. Sarah has been my "rock" as I have stated before. She can tell when I am
starting to get emotional and is quickly there to talk about it and ease my mind. We did receive the final blessing that was
read to us during his final hours. It was mailed to us by St. Vincents. We thought Tristan's supporters would like to read
it.
Goodbye Blessing
Gracious God, we acknowledge Tristan as we lift up our broken hearts and prayers to you.
We
acknowledge Tristan's name as a sign of your uniqueness. Tristan, you are beloved to us and before God. By this name you will
be remembered.
Tristan, your parents have loved and cherished you as you grew in the darkness of your mother's womb.
We pray, God, that you receive Tristan into your caring arms. Grant this precious child complete contentment and security
in your eternal love.
Through scripture we know of the special place You hold for infants and children. May Tristan
be welcomed into that special place of care that You hold for them.
Sarah and David, may the God of consolation be
with you in your sorrow and grief. May your friends and family surround you in their hearts with love and kindness.
May
your faith sustain you where there is no understanding; give you hope when you feel hopeless and light when you experience
only the darkness.
Be with this family as they grieve, and draw them close together in your healing love. You are present
in their love and care for one another.
All this we ask in the name of the One who calls us to love.
Amen.
8:21 am est
Saturday, July 18, 2009
God's Loan
This was a poem that was sent to us by Tristan's great aunt.
Gods Loan
I'll lend for a little time, a child
of mine he said. For you to love the while he lives, and mourn for when he's dead. It may be one or two months or twenty-two
or three. But will you, 'til I call him back take care of him for me?
He'll bring his charms to gladden you, and should
his stay be brief. You'll have his lovely memories, as solace for your grief. I cannot promise he will stay since all from
Earth return. But there are lessons taught down there I want this child to learn.
I've looked the wide world over for
teachers kind and true, And from the throngs that crowds life's lanes I have selected you! Now will you give him all your
love nor think the labor vain, nor hate me when I come to call to take him back again?
I fancy that I heard them say,
"Dear Lord, Thy will be done" For all the joy the child will bring, the risk of grief we'll run. We'll shelter him
with tenderness, we'll love him while we may, and for the happiness we've known, forever grateful we will stay.
But
should the angels call for him much sooner than we planned, We'll brave the bitter grief that comes and try to understand.
(Author Unknown)
8:53 am est
Thursday, July 16, 2009
What a beautiful day!
Sarah and I as well as our family, would like to thank everyone for all the support the past two days and through this entire
process. Tristan has brought us so much joy and happiness during his short time on earth that our life will never be the same.
There
is a story from today after the funeral that we would like to share with everyone. Sarah and I went to the cemetery or to
see Tristan "in his bed" as we like to call it. When we pulled up we saw a dear friend of ours mother, looking over
our angel. She could not make it to the funeral and wanted to see him. The grounds crew had his bed filled in and covered
with his flowers. Everything looked amazing as Sarah and I sat on the bench talking about how great of a little man he was.
When we were leaving we spoke with the grounds crew for about 15 min. The caretaker told us that it was great to see
the turnout we had at the cemetery and that it was the largest procession he has seen in the 30 years he has worked there.
He said it was amazing to see that many people for an adult burial let alone an infants. He said people must really care for
us and was proud to see so many young people mourning our loss. Sarah and I have always known we had an amazing group of friends
and also an amazing family. Just when you think we could not feel any better we saw a deer and its two fawn in the woods across
from Tristan's bed. The caretaker told us the deer like to hang out in the nearby woods throughout the year. There was no
better sign from God and our little angel.
We know all of our supporters have been following daily on our blog. We
will continue to update different poems and prayers as the days go. Feel free to post supporting comments and words of wisdom
as they are very reassuring. Once we get the new site up and running we will let everyone know. Tonight give your children
or a loved one a big hug for us. Just know although Tristan is no longer on earth with us, he will always be in our hearts
and by your side in everything you do. You all have a personal guardian angel. His name is Tristan.
7:31 pm est
Sunday, July 12, 2009
Tristan's going home celebration
Thank you everyone for the encouraging comments and added support. As you know Tristan is in a better place now even
though our minds and hearts cannot comprehend this.
The viewing for our little angel will be held at:
DO McComb and Sons
4017 Maplecrest Road
260-426-9494
The calling will be Wednesday 2-5 pm and 7-9 pm
The funeral service will be held at:
St. Peters Lutheran Church
7710 East State Blvd
260-749-5816
Thursday at 10:30 am with visitation starting at 9:30 am.
Luncheon will be provided at the church after the gravesite burial.
Tristan would have wanted to meet each of you and will continue to watch over you as you have watched over him.
4:28 pm est
Saturday, July 11, 2009
The Chosen One
In an earlier post we talked about how we were "chosen" to take care of our little guy. Well, as it turns out he
was the "chosen" one. Tristan was chosen to touch our lives and everyone we knew from the minute he was born.
We received a phone call at 2:00 am on Friday morning about Tristan having one of his episodes and we should get to Indy
quickly. Sarah and I raced down there confused and scared because Tristan was having the best week he has ever had. When we
got to Indy Tristan was hooked to the same machines he was originally hooked up to post surgery. He had dropped his saturation
levels (oxygen percentage that flows through blood) to a very low number and it stayed there for a while. They were able to
get him back up to the acceptable range however we struggled the entire day to get him there. In the afternoon his levels
dropped again and stayed down for a couple hours causing major concern.
After his levels remained low for that long period of time the doctors talked to us about the options we still had. You
see everything at that moment was working fine except his small pulmonary artery that carried the blood to lungs. The only
way this can be cured is hoping it grows. The hard thing is that since his saturation was so low for so long the chances
of other organs and brain functions to be affected were great. The doctors gave one last effort of doubling his heart medicine to
raise his blood pressure and oxygen levels to the body. This worked but only temporarily as his stats dropped back down after
minutes. We were told if he would make it through this he would more than likely have more of these episodes and his chances
of growth would be less because of the other organs not functioning properly. The fear from the doctors was this could
happen at home if he got there and any normal illness such as an ear infection or cold could cause this to happen again. They
also told us if this were the case, Tristan might have to stay in the NICU until his second suregery so they could monitor
everything.
Tristan was sedated all day and wasn't in any pain. Sarah and I were able to hold our little angel in our arms
for the final hours of his life. We were able hold him and talk to him until 12:01 am Saturday morning when he finally went
home to heaven. He was awake for a bit before he went but had no pain. He looked at Sarah and I before he went to sleep for
the last time knowing we were there as a family. Sarah and I held his hands as he went telling him we "would walk him
to the gates and when he was ready to go, to go in without us."
We know Tristan is watching over all of us right now and it is going to be a hard time without him. Sarah and I talked
while holding him saying, "He will be going to a better place where there are no tubes, wires or pain." We know that he wanted
to meet all of you and he tried as hard as he could but his anatomy would not allow that. He is in heaven now watching over
us. God chose us to care for him until he was ready to return to heaven. For Tristan was the "Chosen One".
Thank you everyone for every single thought and prayer. We will update the blog once we have made arrangements and will
be starting a website that will show this blog for other families going through similar situations or families that need group
support through prayer. Tristan could not have made it one day without the miracles God granted him and without the prayers
you offered. Sarah and I have grown together more than ever and we have Tristan to thank for that. Although he was not with
us long, he will be in our hearts forever.
We love you Tristan.
8:33 am est
Thursday, July 9, 2009
Update
The last two days have been pretty busy, I apologize for the late post. Tristan has been doing well. His
oxygen levels continue to be stable and he has been all the way down to room air since yesterday morning. I am thrilled
with how well he has kept his oxygen saturations up even when he is upset.
The doctors continue to work on his feedings. He spits up here and there and although this is normal for a baby
we have to consider if he is not tolerating the speed of the feedings or if this is a sign of withdrawl. They have adjusted
his medication and feeding schedules to try and figure it out. So far he is doing pretty good with both.
Today he had an upper GI test so that they could get a good look at his digestive system in preparation for the G tube.
They also wanted to see how bad his acid reflux was. I was able to be in the room and watch as the test took place and
it was quite something. He had to drink a little milk from a bottle to get the dye into his system - however he had
never taken a bottle before so we were not sure how that would go. Well I have to say he surprised us all and took more
than enough from the bottle. The doctor was so impressed that she ordered speech therapy to start working with him right
away on bottle feeding. He will still get his feedings through the tube but we will work on the bottle as well and see
how he does. I have posted a picture of his first official bottle this afternoon. One of our favorite nurses was
on duty today and was the one who gave him that bottle. I was so proud of him and how he did. Doesn't that seem
odd - proud that my baby took a bottle - that should be so natural. Anyway, the upper GI test results were really positive.
He didn't really show much, if any, acid reflux and everything worked as it should. I am very happy to know we do not
have any other issues to contend with.
I am posting this from my living room in Fort Wayne tonight as I came home this evening. I am going to be going
to work tomorrow morning. As much as I hate to leave Tristan, even for a day, I fear that I will run out of leave time
right as he is getting home. I think if I work a day or two a week while he is in the hospital I will have more time
with him once he is home. Of course I would never leave him if he was not doing as well as he is now. I just cannot
come up with any other solution right now. David and I will head back down tomorrow night after work. Here is
hoping tomorrow goes quickly and we are back together soon.
10:29 pm est
Tuesday, July 7, 2009
Update
Well I am back and today has gone really well. It seems like I have been gone forever. Tristan's oxygen saturation
levels have stayed above the acceptable range for him all day - even when I change his diaper which is just great news!
They have him weened down to 25% oxygen going in his nose (huge improvement from last week). His irritability does not
seem quite as bad as it was the end of last week so that is good news too. We are working on his feedings which are
still being given over 90 minutes. He spit up a little earlier but I'm hoping that is not a sign that he is not tolerating
it.
I spoke to the doctor today and they plan to do an upper GI test later this week. After this is done, they plan
to schedule the surgery to put in the G tube. The doctor thought it might be next week but we'll see. They make
it sound like the surgery is no big deal but that doesn't make me feel any better about it. I will find out more details
once I speak to the surgeon but I know it will require him to be put back on the ventilator which scares me - considering
how hard he worked to get off it the first time. I hear that they try to get them off right away after surgery
so that is good. I should know a lot more in the days to come.
4:24 pm est
Sunday, July 5, 2009
Update - 4th of July Weekend
Happy 4th of July to Everyone! David was able to come down a day early to see Tristan and the progress he had made
through the week. Saturday afternoon David and I came back to Fort Wayne for the 4th of July. I have my 6 week
docotor appointment Monday so I said as long as Tristan was doing well I would stay through Monday until my appointment.
Well when David and I left on Saturday Tristan was doing pretty well other than he was having some slight issues with
his oxygen levels. He was comfortable when we left but when we called to check on him the nurse said he continued to
have some issues after we left so they ordered a chest x-ray (to make sure fluid was not in his lungs). Well that was
clear so we were happy to hear that. The second time we called to check on him the first thing I heard when the nurse
answered was Tristan crying at the top of his lungs. I would know his cry anywhere and it just tore me apart that I
couldn't be there to comfort him. At that time they decided to call the cardiologist to see what he thought about Tristan's
oxygen levels, as he had continued to have problems since the last call. As you can imagine, I was seriously doubting
my decision to come back home and figured I would be heading back to Indy first thing in the morning.
Well David and I called one more time last night around 1:00am to see how our little guy was doing. By this time
the cardiologist had been consulted and they decided to put in an IV for some fluids and a blood transfusion. The nurse
said that he perked up as soon as he received the fluids and he was getting the blood as we spoke. She said his oxygen
levels were stable again and he was already improving from earlier in the evening. They think he may have
been a little dehydrated from one of the medications that helps him get rid of fluids. So they decided to change the
order from 2x a day to 1x a day. This news really helped David and I sleep better last night. We have
called a few times today and he continues to improve. He is also doing well with his feedings which are now being given
over an hour interval instead of an hour and a half.
It has been a bittersweet weekend for us. It has been very difficult to be away from Tristan and not be there for
him during such a rough night. On the other hand it has been so nice for David and I to be at home for a while and do
"normal" things. Today we were able to do some yard work and go run some errands together - which as simple as it sounds,
it was great. I miss just being around him and talking. You know how you have that one person who laughs at your
stupid jokes and just plain understands you - and vice versa. That is what I miss the most. It will just
be that much sweeter when we are able to come home as a whole family.
10:04 pm est
Thursday, July 2, 2009
Update
Today the doctors did not make any huge changes. We pretty much just continued the feedings like yesterday.
Tristan has seemed a bit irritable/fussy today and threw up this afternoon. I spoke to our nurse and the doctor about
whether it was the feedings or the weening of his sedative (both were changed yesterday). The doctor felt that it probably
was not the medication since he has not shown a whole lot of withdrawl symptoms. So we are taking the 'wait and see'
approach to see how he does through the night. If it is the feedings he might just need a little more time to adjust
to it. As far as the irritablilty - the doctor thought that as we ween him further off of the sedative we may see more
of his personality. So if he becomes more upset during diaper changes that might just be normal - where before he was
just mildly upset because of the sedatives. I guess that makes a lot of sense, I just hate to see him get upset - I
know, I know, welcome to being a mother right. It is just a little nerve racking when he turns a shade of purple
when he gets really mad and all I can think about is that he is not getting enough oxygen. I do have to say that he
is recovering quicker when his oxygen does drop - which is very good to see.
Today he just refused to go to sleep even though I could tell he was tired. Then I finally got him to sleep and
ran for lunch at 3:30. By the time I got back a half hour later the physical therapist was just finishing his therapy
and I had to do it all over again. She did say that he did very well during his session other than being tired.
He is finally back to sleep but he keeps moving around. I guess these are all normal baby behaviors but I'm not used
to normal. And then what is normal for Tristan may not necesarily be normal for every baby. I have a lot to learn...
David is on his way here now. This week seemed to really fly by. I love for David to see the progress Tristan
makes each week. Since I am here every day I don't notice certain things that he does. It will be great to have
him here again.
5:10 pm est
Wednesday, July 1, 2009
Update
Today was a good day for Tristan. They changed his feedings so that they are on for 90 minutes and off for 90 minutes.
This again is giving him the same amount of food over a shorter period of time. Other than one episode of spitting up
later this evening, he has done very well tolerating the increase.
He also had PT today and did amazing. His oxygen did not even drop below the acceptable range. For as much
as he was being stimulated I could not believe how well he did. I am so proud of him. The therapist gave me some
great tips and I watched her work with him so I can use them when I am spending time with him as well. He needs to learn
that not all touches are bad.
Well, I hope tomorrow continues to be a good. David is coming down a day early because of the holiday - Yeah!
8:54 pm est