Tuesday, June 30, 2009
Update - 6 Weeks Old
Sorry for the late post. It wasn't an especially eventful day but I stayed pretty busy with Tristan so it was hard
to find the time. Anyway, he continues to do fairly well on his feedings. We are still on the 2 hours on 1 hour
off schedule. He has spit up a few times which is pretty normal (especially considering the acid reflux) but we don't
want it to be a lot and have his oxygen drop as well. He threw up quite a bit last night but the nurse said he pulled
out his NG tube and that was what caused it. I keep watching him like a hawk in case he does throw up. The doctor
thought we would keep this going for another day or so and then (if he keeps tolerating it well) we will try the feedings
on for 1 hour off for 2 hours. His stomach needs to get used to taking more food in a shorter period of time - similar
to normal feedings. I had a talk with the doctor today regarding Tristan getting the G tube again. She said she
would be "shocked" if he did not need to go home with one. With that in mind, she said the goal is to get him off of
the continuous feeding. That way, we would at least be able to feed him on a normal schedule similar to that of any
other baby. A continuous feed would make things a lot more complicated - to put it lightly. So we are praying
that his body continues to accept the feedings well.
Good news - Tristan is completely off of one of the last two remaining sedatives he was on. Now we only have the
one and he is handling the weening very well. I honestly thought we would have more of a problem with the withdrawl
but he has been very good. We are slowly dwindling the number of medications he is on - Yeah! He also had
his first occupational therapy (OT) session today. No, he is not learning how to balance a checkbook. Actually
in this setting, OT is very much like physical therapy (PT). They don't do so many reps of this or that but it is mostly
checking/reenforcing certain reflexes, stretching tight areas, etc. His oxygen levels dropped a little but not as much
as I thought they would considering how much he was getting stimulated.
We also had a visit today from one of the nurse practitioners that worked with him a lot in the PICU. It was really
nice to see her and have her see how good Tristan is doing. I think the staff here do not always realize how far he
has come from a month ago and she stressed that to them. We had a nice talk and she said that she will relay the good
news to all of his 'girlfriends' back at the PICU. I can't say enough about the staff here. The relationships
you form with them are so unique, considering the circumstances, and I rely on them to not only take care of Tristan
but myself in so many ways. They are educators, caretakers, coaches and sometimes just a friend. Seeing that nurse
today was like seeing an old friend. I look forward to when we get to go back and show them how great Tristan is doing.
Monday, June 29, 2009
Update
We have had a fairly eventful day today. First, this morning they moved Tristan into a private room. Most
of the NICU is filled with what they called "pods" which are small areas connected to each other. Along one end of this
floor they have these rooms that are used for isolation or just for special circumstances. They happen to have one of
these rooms available and since Tristan is a "big" kid (compared to the premature babies here) they decided to give us the
room. I am happy to have a little extra privacy and room but I told the nurse I hoped they were not trying to tell us
we were going to be here a long time. She seemed to think it was a good thing and that it did not mean anything negative.
*My mind always seems to go in that direction when something comes up. I'm sure this roller coaster ride is not over
yet - I'm just always waiting for the next turn it seems.
Okay so we are settled in our room now. They also decided to try him back on the 2 hour feedings again. This
means they have increased his feedings from 22 to 35 mL/hr and will let it run on a continuous feed through his NG tube for
2 hours and shut it off for 1 hour. So far he seems to be tolerating it well. He spit up a little this morning
but has done well otherwise.
Right now Tristan is snoozing in his bed but when he wakes up they want to give him his first shot/vaccination.
Of all the things he has been through this should be nothing but I'm worried sick about it. I hope he takes it well
and that I can console him quickly. Just another day in the life of a mother right?
Sunday, June 28, 2009
Update
This weekend has been a pretty good one as far as Tristan is concerned. Like I mentioned before, there weren't
a whole lot of big changes but Tristan has continued to get bigger (9lbs. 3oz.) and his oxygen levels are slowly getting better
too. They have him weened down to around 25% oxygen (going into his nose) at this time and he is still doing relatively
well with his levels. Room air is 21% oxygen so if he can maintain his oxygen levels at this rate we hope he will not
need to go home on oxygen. We'll see how he does the rest of this week.
We had a nice visit with David and Oliver which is always nice. It is like a reward for getting through another
week. We were able to try out the swing and bouncie seat - and it seems that Tristan is a big fan of both.
Although he still sleeps the majority of the time - don't all babies this age? I am glad he can play a little when he
is awake now.
Well it is about time for shift change so I need to get going. This is the only time of day they kick us out which
forces me to get out for at least a little while. I usually go for a walk around outside (which I promised David I would
do) and make any phone calls. Maybe we'll give Tristan a bath tonight!
Friday, June 26, 2009
Update
Not much to report today. Tristan had a pretty good night and today has been quiet so far. The doctor stopped
by this morning and said they would not be making any big changes today since we really want Tristan's oxygen levels to get
more stable first.
They increased his feedings to 22mL/hr and they are still fortifying the milk to add more calories. This must be
working because as of last night he is a wopping 8lbs. 15oz. This is good news because we really need Tristan's pulmonary
arteries to grow and the best way is for him to grow. He really is our little Hammer!
On a fun note, our cousin lent us a bouncie seat for Tristan to try out and he seems to be a big fan. Also, some
good friends of ours are letting us borrow a small swing which David is bringing down tonight. Tristan is getting a
bit older now and we thought he really should have something else to do other than lay in his bed or be held. This may
give him a little different perspective of the world - no matter how limited it may be right now. As I am typing
he is asleep in the bouncie seat. He must be dreaming because he gets that flutter to his eye lids and gets the cutest
little grin on his face. I love to just watch him sleep - without a care in the world.
Thursday, June 25, 2009
Update
Today has been a relatively quiet day - which is good. Tristan is still on the continuous feeding through the NG
tube and they are waiting to see how he reacts to the acid reflux medicine, hoping his oxygen levels will get more stable.
Today has been much better than yesterday already. I had also noticed that he sounded stuffy in his nose the last few
days and that he had started to sleep with his mouth open (see yesterdays picture) which he was not doing previously.
I thought maybe he was doing that because of the stuffiness. Well early this morning they changed the oxygen dispenser
thingy (yes that is the official name) so that it adds more moisture to the oxygen he is getting and increases the flow.
This has really helped and he sounds so much better (and back to sleeping with his mouth closed).
As mentioned before, he will have to get more stable on his oxygen levels before they will work toward the bottle feeding
again. The cardiologist and our neonatologist also talked to me about the possibility of him needing to go home with
a G tube. What that means is that he would be getting fed directly into his stomach rather than through his nose (like
he is now) or by a bottle.
You see the most exhausting thing a baby does is eat and this is especially true for a heart baby. So even if Tristan
can get to the point of bottle feeding, do we want him to spend all of his energy feeding and not have any left for his body
to grow. And it is imperative that his pulmonary arteries continue to grow. The staff also say that it is relatively
common for a heart baby to go home with a G tube. "If" he has to get one it would be temporary, possibly until he is
6 months or up to 2 years old. We will see how Tristan does in the next week and cross that bridge when we get
to it. All things considered, if that is the only thing keeping him from coming home - you can guess what we will do.
Wednesday, June 24, 2009
Update
Well Tristan had a rough night. I was hoping we were done with those but unfortunately mom needed a reminder that
I am not in control. It started last night when I was planning to go for the evening when his oxygen levels started
to dip pretty low for no obvious reason. He was not visibly agitated and we weren't doing any hands on care such as
a diaper change. After a chest x-ray, etc all things seemed to check out ok. Well the only significant change
that was made in the last 24 hours was that his feedings had changed - so the Dr.s feel that it may have been from acid reflux.
Just getting more food over a shorter period of time could have done it - so Tristan is back on the continuous feedings for
now until he gets a little more stable again. He is on Prilosec (free advertising) now and hopefully we can try again
with the feedings in a few days.
Earlier today he was assessed by physical and occupational therapy and they will begin working with him (as he tolerates
of course). He is stiff in certain areas which is pretty normal considering. I am learning a lot about this right
now but they will also work on reflexes that he may or may not have developed by now. The therapists were very gentle
with him and receptive to my thoughts/questions - it is a little scary to see someone bend and twist your baby but they were
wonderful with him. The good thing is we can help with some of these things as we hold him and interact. Maybe
I can get an honorary degree after this...
Tuesday, June 23, 2009
Update
Not much new to report today. I am still waiting for the therapists to come evaluate Tristan and I understand it
will most likely be tomorrow now. They have increased the calorie content in his feedings and he is taking his new feeding
schedule well. Perhaps tomorrow they will run his feedings for an hour and shut it off for 2 hours. This will
get him closer to experiencing a real feeding. Other than that he is doing pretty well.
He is having more periods (and longer periods) of wakefulness as he gets stronger now. He was wide awake for over
an hour today. I need to figure out what to do with him being so awake now. I have a few books up here to
read to him and I figure I could even read a magazine to him - as long as he is entertained it really doesn't matter.
If I sing to him I have to do it very quietly - for those of you who have heard me karaoke, you know why... I realized
I don't actually know the words to several songs - So when I get stuck I have to just make them up as I go. Well,
he is starting to move around and it is time to change his diaper so I better get back to work.
Monday, June 22, 2009
Update
As David told you yesterday Tristan is continuing to do well. Most important is that his oxygen saturation levels
are becoming more stable. Before, whenever he would be disturbed his oxygen levels would dip and it would take a while
for them to get back to an acceptable level. Now, we are able to change his diaper, etc and he may dip slightly but
he is staying in an acceptable range. We hope this continues to just get better as the week progresses.
Now that his oxygen levels are getting more stable the therapists can begin working with him to catch him up on whatever
it is he may be behind on. I am waiting for the occupational therapist to come by for their evaluation right now.
The speech therapists will be working with him on his feedings. Right now he is on a continuous feed through his NG
tube. What they have done is increase the amount his is given over a period of 2 hours and then they will shut it off
for an hour. They will continue to do that (increase the amount and extend the amount of time it is shut off) and monitor
him for signs of hunger (chewing on hands, sucking on pacifier, etc.). This is a process that will progress over the
week and the doctor thought (if things go well) we could be introducing the bottle by the end of the week. So far he
has been good about taking to the pacifier so I hope that is a good sign he will fly through feeding.
It was wonderful to be together for David's first Father's Day. I wish that his first month as a father did not
have to be so difficult. He has had to endure more in one month than some would have over a span of years. I have
never doubted that David would be a good father but I had no idea just how great he really would be. He is truly the
foundation of this family and I cannot wait to see him and Tristan continue to bond over the years. It is always
difficult to seperate again for the week but it is comforting for us both that Tristan is doing well. For that
I am truly thankful.
Sunday, June 21, 2009
Father's Day
Happy Father's Day to all the Dad's out there. What a great feeling it is. Sarah has been doing well today and Tristan
is doing great. The doctor said they are looking to start the weaning process tomorrow as well as try to bottle feed. Thank
you everyone for your prayers and support. Everyday God shows his love and before we know it we will all be home.
Have a great father's day!!
Saturday, June 20, 2009
Daddy's Back
Well I made it back down
here. Friday night Tristan slept for the couple hours we were here and I did not want to disturb him. We came in the morning
and once again our little angel is sound asleep. We took the liberty to grab some lunch at that time so we could spend more
time with him when he wakes. He is doing a great job. The prayers are definitely being answered one day at a time. We were
able to put his mobile (I am probably wrong with the name of it but hey that's what fathers do) that plays music and lights
up. It has monkeys on it that happen to match the name plate the nurse made for Tristan a couple nights ago. Every time I
think of him and the monkeys I remember to one of my favorite pictures of my youth. I was sitting in a rocking chair with
a monkey mask on. I remember there was one also taken the same day with my grandpa Horacek. The happy look on his face
I will never forget. He was an amazing guy and brought so much joy to my life. I did get to hear Tristan cry today too.
This was the first real cry for me except for the birth. The only bad thing was the nurse was at lunch and Sarah was pumping.
This left it me and him, the classic showdown. I quickly realized I had no idea what I was doing but just rubbed his head,
talked to him and gave him his pacifier. I got real lucky this time. He has been doing very well with his oxygen levels
and his pacifier so hopefully feeding from a bottle will follow soon. I did get to hold him for a bit which was great before
I handed him over to Sarah. There is no better sight than watching Sarah rock Tristan to sleep. They both seem so
refreshed and happy.
On a side note about visitors.
We appreciate everyone who has stopped down to visit us. DO NOT feel obligated to or feel bad about not being able to come
down here. Also do not apologize for not coming down. If there is one thing we do not want it is complicate others lives.
The NICU is a different beast than the PICU. We cannot have cell phones and the visiting rules are stricter. With all the
families down here we do not want to add any more stress to the unit. If you are going to plan on coming down please call
Sarah a couple days in advance so she can make sure it is possible. She has a harder time getting around since it is not a
personal room.
Thank you for the support
and prayers and we will keep gaining strength until we get home.
Friday, June 19, 2009
Update
Sorry for no post yesterday. As I mentioned in the previous post, it is a bit more difficult to get all the things
done in a day without leaving Tristan to do them. Needless to say, he wins that fight.
Anyway, as of yesterday all of his medications are now going through his NG tube into his stomach and they removed his
last central line last evening. This lessons the risk of infection and if he needs to go home with any medications they
will have to be oral anyway. I am also excited because that is one less cord/line to worry about when holding him and
one less alarm that will go off if he moves into a certain postition. This also means that he can now lay on his stomach
and we can hold him upright on our chest. This may not seem like a big deal but up until now he had to be
on his back or tilted to one side (for obvious reasons) but this will allow him to start strengthening muscles he hasn't had
to use. Physical, speech and occupational therapies plan to work with him once his oxygen levels are a bit more stable.
I really look forward to that so he can catch up on certain skills he hasn't developed yet. You wouldn't think he could
be behind after just one month but I'm learning a lot about that now. He is also officially 8 lbs now!
P.S. David is coming back this evening and we are extra excited to spend his first Father's Day together.
We miss him dearly.
Wednesday, June 17, 2009
A whole new world
Today is our first full day in the NICU. It really is a whole new world and I have a lot of adjusting to do.
First of all, we are no longer in our own room - we have an 'area' - so it is not quite as secure as before and I have
to leave the NICU for any reason (pumping, eating, going to the restroom, etc). This makes things a bit interesting
because I need to only bring with me what I can carry - as I cannot leave anything in Tristan's area when I step out.
They do have lockers that you can use on a daily basis, which I have already taken advantage of. Cell phones are strictly
prohibited so I cannot even receive a phone call while with Tristan. How did we ever survive without cell phones??
Being our first day I think I am doing ok. Keeping you updated is going to take a little more effort as I cannot
do it from his bedside (as we did before). I am currently sitting in the family lounge eating my lunch and trying to
do this at the same time. It is hard because I want to be with Tristan as much as possible but it seems that I have
been away from him more today than ever before. I'm sure I will get a routine down before I know it.
Other than that, things are going well. Tristan does not seem bothered by the change of scenery and he has been
very content whenever I come to see him. This makes me feel at ease when having to leave. Of course there is a
whole new group of nurses to get to know and a whole new routine of theirs to learn. So far everyone is very nice and
they seem only too happy to let me take part in Tristan's care. I like that a lot even if it is only changing a diaper
or taking his temperature (no rectal thermometers thank goodness). One of Tristan's doctors came and spoke with me for
awhile this morning about the goals for the next few days. They want to work on getting the rest of his medications
going through his NG tube so that they can remove his last IV line (less risk of infection, etc). The pharmacists are
working on a weening schedule for some of his meds also, particularly the sedatives. And lastly they are going to continue
slowly increasing the amount of milk he is getting and begin fortifying it with formula for higher calorie and protein content.
I figure that is a pretty good plan for the next few days.
I will work hard to keep everyone updated and please keep the prayers coming. According to the doctor I spoke with
today, we could potentially be here for another 3 weeks to a month or 2 more. It all depends on Tristan and how he does
with a multitude of things - but we will pray for continual growth and healing in his body.
Tuesday, June 16, 2009
Update - 4 Weeks Old Today
Ok, so yesterday we did not go to the NICU. Apparently there were several children going and the NICU only wanted
to take so many in one day. So since Trsitan "has more problems" (I hate it when they say that) we had to wait until
today. The transport nurse has already been in so he will be going in less than an hour.
Not much else went on yesterday. They increased his feedings to 14 mL/hr (for all you medical personnel) and he
is doing well. All feedings are still giong through his NG tube but his body is absorbing it very well. I am very
excited to work on feedings with him and see how he takes to a pacifier and bottle, etc. He likes his hands by his mouth
so I hope that is a good sign.
Monday, June 15, 2009
Update - NICU here we come!!
So we are officially going back to the the NICU today. The doctors have given their blessings and the arrangements
are being made as we speak. This is one huge step closer to going home. They will continue working on Tristan's
withdrawl issues and feeding - basically they focus on getting him and us ready to go home. We could be there a while
yet but at least it is progress. I'm so excited! We have been here so long some of our nurses have come in on
their own time to say goodbye. We will definately come back before we go home to see them all.
Also, many of you have asked about Tristan's weight. Well, he was 7lbs. 5oz. at birth and they weighed him today
for the first time since then and he is 7lbs. 8oz. Now that he is getting fed breast milk hopefully he will put on some
weight.
I'll let you know how the move goes later.
Sunday, June 14, 2009
Sunday Update
There hasn't been much
going on down here which is usually a good thing. He is doing well. Tristan does have some withdrawals from the pain medications
though. It is something that is very common but hard to watch. Movies that show adults with addictions that shake when they
need their next fix are pretty accurate. He is not as bad but about an hour before his time for medicine comes he usually
gets very agitated. When he gets agitated his stats drop and his blood oxygen level drops and takes time to get back up due
to his small pulmonary artery. We are still hoping to go to the NICU tomorrow where they work on getting him weaned off the
medicine and feed. He has been getting milk from his feeding tube and its working so far. We will pray for him each day until
he comes home. He is our special boy!
Saturday, June 13, 2009
Weekend update
Tristan is continuing to do well. The nurses said he is having some withdrawals from the pain medication which is normal.
They will continue to ween him off them for the next couple days. We still have our sights on the NICU Monday. Keep the prayers
coming and everyone have a great weekend!
Friday, June 12, 2009
Update
Well, I have to say David was right (I don't admit this very often) but it has been really nice to be home. I have
a long To Do List for one day but it is great to be here. I called the hospital today to see how Tristan was doing and
he continues to do well. He has maintained his blood pressure without the medicine and the doctors are happy.
They plan to start feeding him today. For now, this will all be done through the feeding tube but at least he is getting
good nourishment - "Tristan Brand" Milk. This will also get his stomach and other organs working for the first time.
She gave us some more great news too. The doctors want to keep him in the PICU over the weekend but on Monday they
will transfer him back to the NICU. This is wonderful because that means they think he is closer to being ready to go
home. The NICU will work on getting Tristan (and us) ready for him to be home - a lot of this will be working on regular
feeding.
If you had told me 2 days ago we would be at this point I would have NEVER believed you. A nurse told us that you
never know when, but when they are ready they are ready. I believe that we have witnessed a real miracle in Tristan
and I will NEVER forget it or take it for granted. We are by no means out of the woods here but I can see The Light.
Thursday, June 11, 2009
A Good Night Sleep
Tristan did exceptional today. He is a little warrior and the prayers and support definitely are showing every second.
I along with the nurse was able to talk Sarah into coming home to Ft. Wayne for the night and return with me after work on
Friday. I used the same beg and plead technique as I did to get her to date me. This will be her first full day out of the
hospital. We have called once to check on him and he is doing great. They were able to take him off his last blood pressure
medicine at 6:00 and he was doing well at 8:30. We will be back tomorrow night to see what surprise progress he has for
us.
Thank you again and continue to pray for our family. During our drive home we saw three rainbows. We definitely believe
this is a sign God is watching over us. He will help us through these tough times.
Update
Tristan did sleep throughout the night with out any episodes. I slept in the room with him while Sarah and her sister
slept in the sleeping rooms. I can honestly say it was the best night of "no" sleep I have ever had. Sarah is holding him
right now and he is doing well. Keep those prayers coming for the battle has still only begun.
Thank you everyone!! We can never repay you for what you have done for our family.
Wednesday, June 10, 2009
The power of Prayer
Tristan had his vent taken off at 2:15 PM. He is doing well. The prayers are working!! Keep the prayers coming, we cannot
have too many. Thank you all for your support. The fight is still far from being over.
The toughest times
Sarah had a great post last night. It unfortunately wasn't one that was easy to read. You see Tristan has passed every
test they have given him. He flew through the surgery and recovered quickly. The infection slowed him down but he then fought
back. His organs are working great and the doctors know this. The problem is something that "technology" and medical attention
cannot fix. There is not a "take two of these and call me in the morning" remedy. His body has gone through so much in these
first 3 weeks I pray that he has the strength to get past one last obstacle. If we can get off the vent it will enable him
to breathe on his own and in time allow us to feed him. This is the only way to grow. I am down here with them today and we
will see how it goes. I plan on leaving again tonight to head home.
We can beat this. We just all need to work together as a team and be there for Tristan. Anything we have ever asked from
him he has done and I don't think he is ready to stop now.
Tuesday, June 9, 2009
Update - I never thought it would happen to me...
Today is a tough day. Tomorrow is shaping up to be even tougher. It is so true that you never really think
"'that" is going to happen to you. You always know it is a possibility but you never really think it will happen to
you. I never thought I would find out at my ultrasound that my baby had a serious heart defect... When we
came to visit the hospital and the doctor said 'plan to be here a month' I never thought that would be us... You never
say it out loud but deep down in your soul you think 'If I want it enough or hope enough or pray enough' - that won't be us...
No matter what has happened along the way with Tristan I have always felt that we will overcome this, no matter how long
it may take. Well today I heard what I never thought I would here..."There is nothing we can do." You see I think
of myself as a pretty logical/rational thinker and whatever comes up - it is ok, I just want a plan on how to tackle
it. When there is no plan I am not sure what to do anymore. How do you focus your thoughts and prayers if you don't
know what to hope for? A miracle? I never thought I would be in a position where I am in need of an
honest to God miracle. Something so great that only The Lord God could possibly be the one to grant such a request.
How do you even ask for that? Am I even deserving of one?
Well, tomorrow they are going to try and take Tristan off the ventilator again. His pulmonary arteries are quite
small - severely limiting the blood flow to the lungs - thus restricting his oxygen levels. There is nothing the
docotors can do about this except hope they grow. This can take months, if ever, to grow to the point they need to be.
In the mean time, the only thing the doctors can do is try to get him off the ventilator and stable enough to go home (where
we hope his arteries grow). The problem is, if his arteries are that small, it is a very slim chance that he will be
able to sustain his oxygen levels on his own. ***Insert miracle here***
I know that those of you reading this have been there for us in more ways than one. Your support and encouragement
have meant the world to us through this process. I am asking anyone reading this now to please do our family one favor
- please pray for a miracle for our Tristan. He needs it more than ever.
Monday, June 8, 2009
Update - Part 2
Well today seems to have brought more questions than answers. The doctors decided to send Tristan for a CTscan
to get a good look at his chest - mainly the shunt and the pulmonary arteries. They wanted to see if there was a problem
with either of them or to rule them out. So far all I know is that the shunt looked fine and that the artery looked
small. How small? I don't know. What this will mean as far as teatment goes? I don't know. The
doctors will get together in the morning along with his surgeon to discuss the results and a course of action.
I have so many mixed emotions right now. If it were the shunt we would at least have a clear answer to why he has
been having so many issues. When it comes to the pressures and artery size I'm not really sure what happens now.
And the worst part is I'm not really sure the doctors know where to go from here either. I wish there was a quick fix
but I guess in life there are no quick fixes. Heck, at this point I would settle for a very slow fix - as long as I
knew there was a way to fix it. So now, I sit and I wait until tomorrow when I hear what the next step is.
Update - A New Day
Well David told you about our up and down weekend. Although yesterday did not turn out as we had hoped, I feel
like today is a new day with new possibilities. Having David here over the weekend I feel emotionally recharged and
ready to take on the week. I must have been in bad shape last week because even the staff here have commented that it
is nice to see me smile. I have promised David I will take better care of myself and at least get out for a short walk
everyday. I know he has referred to me as his "rock" but he is truly short changing himself. Each time we
have to say goodbye it gets a little harder, but if anybody keeps this family going it is him.
Tristan is doing pretty good today. I can tell he is still worn out from yesterday's ordeal. He just needs
to rest and get his strength back.
This morning in rounds the staff discussed where to go now with the latest developments. It is hard because they
want to actively do something but Tristan just doesn't seem ready for anything we try - He is certainly the Boss.
After much discussion they are going to attempt to start weening the last blood pressure med (as long as his stats look
good). If he is able to get off this med they can begin feeding him - which I for one would be so happy to see.
We will see how he does with this, as they have attempted weening this med before. They are also increasing one of the
meds for his pulmonary pressure - which will hopefully help with his oxygen levels. That is the plan for today and we'll
see where we are by this afternoon.
Sunday, June 7, 2009
"Emotional Roller Coaster" Admit One
As everyone can imagine the emotional roller coaster that we are on has many high points and low points. We have been
having a great weekend. Tristan was doing great and Sarah was doing great. It was exactly what I wanted too see. This morning
we returned to the hospital with the great news of "Tristan did very well through the night without any episodes." They went
ahead and took the ventilator off too because his progress. Next thing you know just beyond the bend was the drop off. Tristan's
stats did not do well without the ventilator. His lungs were fine but the blood oxygen wasn't flowing like we needed it too.
Since then we have put the ventilator back on and added the Nitric back. The doctor is not positive why his blood flow is
not as strong as it needs to be. The "Team" consisting of the doctor, cardiologist and the surgeon will meet tomorrow morning
and look into the problem. They will probably do another catheterization to see if there is a block in shunt or what the problem
is. We will wait patiently next to Tristan until he is ready. I thank god Tristan is stronger than I am.
Saturday, June 6, 2009
Update
My return to Indy has been great. Tristan did well yesterday evening with all his stats. Sarah and I stayed at our friends
house who lives 5-10 min from the hospital. It is nice because we can leave Oliver there during the day. Friday night was
the first night Sarah, Oliver and I have slept in the same bed since the night before Tristan was born. We came back to the
hospital in the morning and felt very rested. Tristan was off the Nitric machine at the end of yesterday but was put back
on later in the night. It was set to the lowest level and has since been removed again. The great thing is that his stats
have been great all day with that off and his ventilator turned lower. The doctors are hoping to have his ventilator removed
tomorrow or Monday. This would be fantastic. Our little Hammer is really doing well. Sarah and I watched the movie "The Hangover"
today. It was very funny and I think Sarah really needed a couple hours away from the hospital and I needed Sarah to have
a couple hours away from the hospital. I wish you could feel the excitement I had today. We will continue to be patient
through all of Tristans baby steps until we go to the Nicu and then home. Thank you everyone for your support!
Friday, June 5, 2009
Update
Tristan must have had a change of heart - no pun intended - because today he has made some real progress.
The most notable was that he was able to be awake for a rather lengthy period of time and still maintain his oxygen levels.
He is still on increased sedation but this is a huge improvement on the last few days. The second big step he made was
that they were able to ween him slowly off one of the machines that was helping keep his pulmonary pressures where they should
be. The machine will stay in his room for atleast the weekend until they know he is ok without it, but so far so good.
Just a short while ago he started to have a few issues with his blood pressure so they did turn that medication up just
a tad. I am finding out there is a difference between blood pressure and the pulmonary artery pressure. We want
one to be a little lower and one to be a little higher than they are right now - so you can see how this gets complicated
with the medications, etc. At some point Tristan will need to maintain this on his own, but we will wait until he is
ready.
David will be here in just a few short hours and I am getting quite anxious. I think Tristan wants to show
off for his dad and that is the reason for his little turn around today. Either way, I am just relieved that he seems
to be moving in the right direction today. All of your prayers and support make a world of difference.
P.S. I couldn't help put this picture up today. This was when he was awake today and we changed his bedding
and positioning. He was wide eyed watching the monitors with this shocked look on his face. I thought it was hilarious
because I was watching him and the monitors in my own state of shock as his stats remained stable. Look at those
big blue eyes!!
Thursday, June 4, 2009
24 Hours
Everyone knows what it is like when you're hours away from going on vacation or seeing a relative from out of town. You get
anxious, you get nervous and inevitably you have a hard time sleeping. If you can remember this feeling than you have an
idea of what I am going through right now. The only bad thing is that not only will I have trouble sleeping tonight, I have
had trouble sleeping the past couple nights. I cannot wait to see the two that I love the most. I have been part of this emotional
roller coaster but not as much as Sarah. I applaud her and am proud of her for her emotional toughness through this entire
process. She is in the hospital next to our little warrior day in and day out. I cannot imagine how difficult that would be
when there are no clear answers and no clear solutions. We thank everyone for their prayers and support. You have no idea
how much this means to the all three of us. We know it is only so long before Tristan comes home and we can all be together.
I pray every night not only for Tristan but also to help keep Sarah and myself strong and focused. Positivity and optimism
spreads in my opinion. If we are positive and upbeat I believe it can affect Tristan. We will beat this I have no doubt in
my mind. A good friend of mine joked around about naming our first child "Hammer" Horacek if it was a boy. I look
back now and think "He is our little Hammer!" He is the toughest little guy I know and believe it or not he gets
it from his mother. She is my "Rock" and he is my "Hammer"!
7:45 pm est
Little Victories
I had a friend visit today and happened to be here during one of Tristan's episodes - which seem to be more often now.
Afterward she made a comment about seeing what we mean by little victories. I have thought about that and it is so true
when I look at my cocoon of a life I have going here in Tristan's room. In the last few days it seems that he becomes
more quickly agitated as he wakes up and this is quickly followed by a drop in his stats. We then spend a good 30 minutes
or so to get him calmed down enough to where his oxygen levels look good and he is comfortable. *I say 'we' loosely
because I am not really doing anything but trying to sooth Tristan and stay out of the way of the staff. The staff
seem to think he is getting used to some of the sedatives, so when he begins to wake up it takes more to calm him down.
Every time we have one of these episodes and manage to get him calmed to the piont where he is breathing well again
- it is a little victory....until the next one and the next one....
Aunt Kay, you asked to talk about how I was doing...and as I sit here and think about that, I'm not quite sure what to
write. I feel like if I talk about myself I am losing focus somehow on what is truly important and whatever issues I
am going through, it is nothing compared to Tristan. I feel like I need to keep it together for us both and for David
who cannot be here right now. If I can't be strong then who will? These are my little victories...managing to
keep it together when I feel helpless...managing to relay David updates throughout the day and not make it sound as bad as
I sometimes feel it is...managing to stay upbeat about our prognosis...managing to keep my faith...and managing to get Tristan
through each of his little victories.
So to do this, I think I focus on the day to day tasks I must complete and that keeps my mind from wandering to
the things that will only make me upset. It is at night when it gets really quiet around here, and I say my goodnights
to Tristan and we say our prayers together, that I really start to let my worst fears get to me.
Tonight our nurse's name is Angel. We could really use one of those right now...
Wednesday, June 3, 2009
Update
Tristan had a restful night. He was having a rough time last night before I went to bed so I wasn't sure what I
was going to wake up to. I was anxious to get to his room as always because first thing in the morning the staff do
rounds and talk about the 'plan' for the day. I like to be present for that because then I get the full explanation
of his status (for lack of a better term). This morning was no different.
They think he is sounding congested so we will see if that clears up. They are also going to try and continue to
get him off the IV medications - today it will be one of the sedatives but instead of taking him off they are replacing it
with another that can be given through the NG tube. This will be weened off later but for now they want him off as many
IV meds as possible. The other plan for the day is to eliminate one of the machines that he has been on since the onset
of his infection last week. They have him on a medication now that should take the place of this machine - so there
is no reason to have both. Any time we can reduce the amount of equipment in the room is a good day for us.
In the most recent picture you can see a little more of Tristan's face since they have removed the monitoring device
off his forehead. I am so used to seeing him with all the bells and whisltes that it takes a little time to get used
to it when they remove something. I am thrilled to see just a little more of my baby's face.
Tuesday, June 2, 2009
Update - Two Weeks Old
Sorry for the delay in an update today. Without David here it is a little more difficult to get everything done
in a timely manner. You might think that I would be bored out of my mind but I actually do keep pretty busy between
tending to Tristan (#1 priority) and everything else that includes showering (I have to haul everything to and from the car
to the room to the shower room and back), pumping (every 2-3 hours), laundry (again with the hauling from place to place)
and then finding time to eat in between. It is easy to lose track of time or forget I have a responsibility to keep
everyone updated.
Anyway, today Tristan had a pretty good day. He had a bit of an "episode" this afternoon after they tried to ween
him off another blood pressure med. I think they did it too quickly because he was not happy and his oxygen levels went
down. After they calmed him down and put him back on the lowest dose of this med, he has done much better. Another
roller coaster of a day but he is resting comfortably now and I feel better. I assume tomorrow we may attempt weening
him the rest of the way (only much slower) - but as we have all learned - take it one day at a time.
Monday, June 1, 2009
A normal routine
As you all know, this was David's first day back in the Fort while Tristan and I are still here in Indy. As expected,
it has proved to be a challenging one for all three of us. Tristan continued to have a good day since this mornings
slight stumble. He also got the feeding tube put in through his nose - something which was difficult to watch.
I tried to leave the room while they put it in but could not stay away long - I guess that is what I am supposed to do
now as a mother, tough it out for my child. He wil begin getting a medication through the tube (which does not come
in IV form and that is the reason for the tube) and the plan is for that med to enable him to be taken off one of the machines
that was introduced last week when the infection set in. One baby step at a time.... Let's pray for a better night
than the last.
Today I worked hard to keep the normal routine David and I had sort of set up for ourselves here - in an attempt to make
it less upsetting that he is not here. I even tried to pay some bills, check emails, etc. David had the more difficult
task of going back to work. It is a sort of balancing act to focus on work and pretend like everything is normal
- when he and everyone else knows it isn't. I worry about him just as I know he is doing the same for us right now.
Today was definately going to be the hardest and I hope the rest of the week becomes more manageable. Friday will be
here before we know it...right?
Update
Well Tristan had a very good evening and things went well into the night. I awoke several times in the night as
the nurses were checking in and they reassured me things were still going well. So I was surprised when I woke up this
morning to find out he had an "episode" (this is what we call it when things don't go as planned - and this can mean a number
of things) so you can imagine I immediately became worried. Apparently he did well until early this morning when they
came to do his daily chest x-ray and change some tubing. It was just a little too much going on and this set him off.
Since then, the staff have made a few med changes and gave him more blood and he has rebounded very well. Our nurse
reassures me that that is a good sign he is getting stronger. Tristan seems to do well whenever she is on duty
so I have informed her that she cannot go home until he does.
The plan for the rest of the day is to keep his stats stable. They are also planning to put in a
feeding tube. I normally do not like the idea of adding any tubes/lines to Tristan but this one means that he could
start getting regular nourishment soon - that I am very encouraged to hear.
I think one of the most exhausting and frustrating things about being here is the rollercoaster of emotions.
One day things are good and we are planning for the next step and the next minute we are having issues and all bets
are off (or vice versa). Times like that are when David keeps me sane. This week is going to be hard but we will
make it through because we know we have to and we know we can.
