Today is a tough day indeed. He is slowly regaining strength and improving. The hard part is that I am leaving. I wish I could stay for both Tristan and Sarah. I wish I could stay for myself. I have been filling my week with activities after work. I will stay as busy as I can until I come back on Friday. Tristan is a fighter like his mom and I. I can't wait to return even though I have not yet left.

Tristan seems to have had a peaceful night despite the bad weather outside.  He also seems to be getting a little stronger each day as he is able to slowly be taken off a little more oxygen at a time.  We are anxious for him to make more progress but we are very cautious as to not move too fast and set him back again.  We will continue to be patient and let Tristan tell us when he is ready.

 

We posted a really cute picture of Tristan from yesterday.  You can see where they removed the bandage from his chest.  I reassured him that chicks dig scars.  David goes home today for the week, so today is guaranteed to be a tough one. 

Things are still going well today. They did knock the oxygen down a bit which is also good progress. With the stats he continues to have he should be able to take some of his blood pressure medicine down again tomorrow. If he doesn't think he is ready, we will wait longer.

 

On a second note Tristan is experiencing his first Tornado Warning as the weather here in Indy is not so pleasant.

 

Until tomorrow!

 

Dave, Sarah and Tristan

Today is slow in the update world which is a good thing. Last night they did drop his heart medicine down 2 steps which is very good. His stats look very good today and we are hoping early next week to be where we were on Monday. I am very proud of him. I will be returning home tomorrow afternoon.

There was a good update late this morning. Tristan had the bandage over his chest and the tube to remove fluid removed from his chest this morning. It is always a good day when you see little improvements such as these.

I knew not being with Sarah and Tristan would be hard but man did it seem like an eternity. Not only did I not sleep particularly well but Oliver was so excited I was there, he did not sleep either. I did get back around 8:30 this morning. I did most of my good sleeping from 6:30-7:30 this am. I was glad to see as I returned Sarah was still asleep. She told me she didn't sleep well either. The doctors tried to lower one of the meds last night but Tristan didn't agree with the decision so they bumped it back up. They did find what the infection was and that the antibiotics he was receiving since Tuesday are the correct ones. They are expecting to see his stats improve once it runs it course. The doctor is hoping that his body is weak as it runs overdrive to clear up the infection. Once he does not have to fight it he can focus on recovery. His pulmonary artery is smaller because of the defect so as he grows it will also eliminate some of the stress and make it easier for oxygen to get into the body.

Well Tristan continues to improve today from yesterday, slow but sure.  They are very slowly trying to take him off the higher doses of oxygen and seeing how he responds - and so far he has done pretty well.  We hope for the next few days to be more of the same and eventually get back to where we were a few days ago when they were planning to begin taking him off the ventilator (one step at a time).  Now that we know about the staph infection, they are able to better treat it.  It is a funny thing when you are relieved to hear 'infection' - but at least we know what we are up against.

 

One interesting turn of events tonight is that Tristan, David, and I (for the first time since we have been here) will not be sleeping under the same roof.  Until now we have been fortunate enough to have the use of a few sleep rooms that St. V's has for families to stay overnight.  These rooms are given out to those who need it most based on certain criteria, such as how sick each child is or how far a family lives from the hospital.  Well a few hours ago, the front secretary came to our room to inform us that we would not be getting a room.  Although this is inconvenient and it is going to seperate our little family for the night, it is a sign that Tristan continues to improve.  Of course we feel for the families that have their children here as well - another lesson in 'No matter how bad things are, there is always somebody who has it worse than you do."  David will go and stay with a dear friend of ours with Oliver and I will be sleeping on a couch here in Tristan's room.  As it gets later in the evening, I am finding the thought of this seperation harder than I imagined it would be.  I cannot fathom how difficult it will be on Sunday when David must go back to Fort Wayne for the week.  For now, I am not going to think about it - I will only cherish the time we have together.  Until tomorrow...

Well as David told you yesterday, it turns out Tristan has an infection and that is why he had such a quick change in his condition Tuesday.  Fortunately the antibiotics seem to be helping him. The staff seem to be pleased with the improvements he makes each day - and if they are happy, we are happy.  Once he gets his strength back we hope to see him continue on the path to recovery.  We also met one of the dietiticians yesterday and they plan to start feeding Tristan (through a feeding tube) sometime very soon.  I was pleased to hear that.

 

This week has taught us to take one day at a time and not look too far ahead.  Unfortunately, it has given me a much clearer understanding of "Don't get your hopes up".  And Fortunately, an even more clear lesson on how I truly have no control over this but that it is in Gods hands.  I have to keep reminding myself of that.  We keep telling Tristan that he does not have to break any records he just needs to take it one baby step at a time.

 

It is truly the small things that are important and sometimes it takes a crisis situation to make you realize that.  For some people, changing a baby's diaper is not such a pleasant experience.  In fact it may be one duty that one would be all too happy to pass onto someone else.  I have found that I desperately look forward to every little bit of normal motherly duties- even the diapers that we would otherwise shy away from.  As David mentioned, I had the wonderful opportunity to help give Tristan a bath last night.  It is nice being able to do something to help out - rather than always being a spectator to the doctors and nurses.

Our Ft. Wayne Cardiologist Dr. Ghazali put it best when we said we were "Chosen". That was the only way to explain it. We were "Chosen" to love and raise Tristan the special way that some parents could not. He explained our child will require us to come together as a family and fight through the hard times. The hard times will be the toughest things we will experience and they will comeback from time to time. We embraced the fact we were "Chosen" from day one. We were going to be the family that proved to the world that no matter what the situation you could be successful. We asked him about limitations. He said the child would have limitations; would the child be a professional athlete, No, but can they be a doctor, Yes. This is the motivation we needed during the first of many hard times. As I sit in the room and watch Tristan move around I can't help but to think, "We have been Chosen". We were given the gift of life. Thousands of families will never know the joy of having their own children. I have never asked "Why me?" I know why I was "Chosen" to be Tristan's father. Sarah and I love our little miracle and when times get hard we have all of you and your prayers backing us up. And as Tristan grows he will know he is special everyday of his life. Remember that when you have a hard time in your life or an argument or fight. Everything and everyone has its purpose. Next time you see your loved ones tell them you love them. "I Love You" means more than you could ever imagine.

 

Tristan has been doing well today. They think the episode yesterday was due to a virus he may have got. Since he has had a couple blood transfusions he does not have as many white blood cells to fight off viruses. The white blood cells only last around 24 hours once sealed. They did start giving him antibiotics yesterday so we have a 1 day jump on it. We will wait on it to pass and hopefully get the strength we need to get our stats back up to the top.

Yesterday we had a wild morning. Since then he has been doing great. We took a couple steps back in the recovery process but we will be patiently waiting. The days mix up while we are down here. Sometimes I forget to realize he had major heart surgery just over 5 days ago. He is doing well and I will keep everyone updated. Yesterday he kept sticking out his tongue. I am trying to get a pic of it for all to see.

Tristan spent his one week anniversary a little differently than we had hoped. As we came in this morning from the sleeping corridors we had the unfortunate welcome of many nurses and doctors. Tristan had done very well throughout night until around 6:30-7:30 this morning. His oxygen lever dropped severely causing major concern. It is always hard when you first walk in and there are 2 new machines and no one updating you. Then one nurse says we are preparing him for the move downstairs. My mind went blank. We had so much improvement the thought of a complication seemed impossible. They did a Cardiac Catheterization (I added to About Me) to see if it was the shunt that was clogged or another issue. The clean fix would have been the shunt clogging but our Tristan likes to be difficult at times a trait his mother claims is genetic from his father. The shunt was perfectly fine which is good because it shows the original surgery went as good as it could have. The bad thing is that they will have to back track a bit and see what the issue was with his oxygen levels and build him back up.

 

Tristan is a fighter but today was an example of how this is real life and not a fairy tale. He will have some set backs on his way though recovery. The great thing is that he has tons of supporters and prayers backing him up during this fight.

I did a little updating on the about me page. I listed Tristan's diagnosed heart defects after birth and information regarding his procedure. He had the procedure called a DKS Procedure. It is also called the Modified Norwood Procedure as I stated below. There can also be other defects with the Modified Norwood Procedure so I took that off the page. The DKS Procedure is the most accurate based on Tristan's condition.

 

As for out little warrior Tristan. He has continued to do well throughout the day. One of the PICU doctors said "He is a star", "He has read the book how to recover".  I will be staying here in Indy until Wednesday afternoon. Then I will return on Friday after work for the weekend. I can't wait to see the progress we make tomorrow.

Attached is a little video of Tristan opening his eyes this morning. No more updates as of yet!

 

 

There will be a couple updates today. The first one you can see to your right. Tristan did open his eyes for about 20-30 minutes today. The surgeon came in and said he is doing great. They did decrease some of the medicine and will work on decreasing the ventilator tomorrow and Wednesday. I will have to video links added today also. I just can't do it from here at the hospital. Once I receive the link I will add it to the site.

The three of us would like to wish everyone a great Memorial Day! There is not much to update as of this morning. The good news is that we have gone through 2 complete nights without the nurses updating us with changes being made. That means things are going well. We have the same nurse that we had when we first came to the PICU unit and she is very good. Every nurse we have had through the entire stay has been amazing. She did say they will probably keep him on his sedatives today slowly taking him off since he still is not too far out of his surgery and stitching. I will get an updated pic today and will also give updates.

 

 

There is a major update as of this morning. Tristan did open his eyes for a split second multiple times. It was great that both Sarah and I were able to see it. They have him on sedatives every couple hours while he heals from the surgery so he doesn't fight the ventilator helping him. This is normal for surgeries such as his. The good news is that the nurse has been waiting a little longer between giving him the sedatives to see how he does as he is waking. He kept his heart rate up the entire time and kept the oxygen moving for an extra half hour after the sedatives were to be worn off. The next big hurdle will be how he does in next couple days as they lower the sedatives and see how he responds. I will keep everyone update.

 

I have added information on the next 2 surgeries the Bidirectional Glenn Operation and the Fontan Procedure on the about me section of the website.

Things are going well for Tristan, his mother and I. Tristan was moved to a different room last night. They had him in a bigger room for post surgery incase there were any complications but have moved him now to a smaller room near the nurse station. This is a comforting move for us because if a problem comes up they are closer to him. His vital signs still look good and they have been doing breathing treatments to clear his lungs and he has been reacting well. In the coming days they will back down on some of the medications and machines to see he improvement. We are still a little too close to when Tristan had his surgery for the sedatives to be taken off. I will try to update 2-3 times a day. But remember sometimes no news is good news.

 

As for the surgeries that will need to be done in the future there are 3 total. The 2nd one to be done at 6-8 months and the 3rd to be done from 2-3 years of age. On a later post today I will list the procedures that will need done barring other complications.

Thank you all!

Sorry for the delay of updates. Sarah was officially discharged from the womans hospital this morning. We also received a great call this morning with the news Tristan was doing so well that they did close his chest. This is usually done around 48 hours but his draining went well and he was ready for his chest to be closed. His vitals continue to be good and we are entering the recovery phase. 

I wanted to also let everyone know the procedure that was done today with Tristan was is called the Modified Norwood Procedure. It is the first of 3 operations that have been planned since the begining. This is not the typical 1st surgery but with Tristan's condition this needed to be completed before the remaining 2 are done.

 

Thank you all for your support and prayers and we will update you more tomorrow.

 

Dave, Sarah and Tristan

Sarah and I were able to see Tristan again this afternoon. He is currently on pain medication for post surgery and the nurses are telling us he is doing great. They say he is in fact doing better than they expected, especially this fast after surgery. Sarah will be discharged tomorrow and our new home will be the PICU at the Peyton Manning Children's Hospital. Only one of us can stay overnight there during the stay. They do have sleeping corridors we can stay in that come on a first come first serve basis and if we can't stay there I will be staying with Richard. They are thinking 1 to 2 weeks that Tristan will be there until he is moved back to the NICU here. There he will learn to feed and be brought back to weight before going home. I will be putting a pic at the bottom of the page for people to see. He is doing really well but the pic does look worse. He does have a little of his chest exposed from the surgery so the blood can flow out. This is normal for an open heart surgery like this one. I just want this whole experience to be seen to help families who might have the same situation. We thank everyone at St. Vincents for doing an amazing job and have no reason to think they will ever change.

 

Thank you everyone for all your prayers. The three of us appreciate each one of them.

I just came back from the surgery waiting room. I spoke with the surgeon and he said everything went well. They will leave his chest open for a couple days with a patch covering it so all the fluids can flow out. We will be able to see him in about an hour or so.

 

This is great news and now we work on the recovery process!

Today is the day. We just got back from seeing our baby boy before his surgery. This will be the longest four hours I will probably ever wait. He looked good, he looked stable and he looked strong. The surgeon went over the procedure and I signed the consent form. This is a serious surgery but the doctors say he should do well. I walked Sarah back from the Children's Hospital in her wheelchair and we were able to talk. She has always been great to talk with when times are rough but she is the best listener and I needed that. Today is the day and I know God is watching over us and Tristan!

We had our consultation about Tristan's first surgery that will take place tomorrow at 7:00 am. During this entire process from the time we found out of his heart condition until now I worried about the surgery but most of my attention was focused on Sarah's condition and to make sure I was a rock to support her during the emotional times that were to follow. The thing is every man cares for his wife, but I unconditionally love my wife. She is the best thing that has ever happened to me and the thought of her going through pain and emotional stress until the baby was born really worried me. I did not let it show until the day we came down to Indy when I was loading our stuff in the car. I broke down like I never had before and the last thing I wanted was for her to see me struggle. I am very emotional at times but tend to hide the emotions that show "weakness" one would say. Tristan was born and everything was great, we game planned and knew what steps were ahead of us and knew surgery was looming. We know surgery is needed and we think the staff they have here at the hospital have all the experience and training needed to make this a success. We also know Tristan will fight through it and come one step closer to coming home. I am a very optimistic person. Almost too optimistic at times I’m sure. But I now know what your parents and loved ones mean when they say "Call me when you get there" and "Please be careful" when you leave. I have been with Tristan for less than an hour total since he was born and I am scared out of my mind. I know that Tristan, Sarah and I have many people praying for us during this entire process and we thank you for every second you do. My family and friends have always been very important to me and I know Sarah feels the same. The response we have received from the guestbook, emails, text, etc. have been amazing. The messages and encouragements will never be forgotten.

 

I thank you from every ounce of my heart.

 

Dave

Today is a busy in the update world. Sarah is feeling much better today compared to yesterday and last night. We did get confirmation that Tristan will be having surgery tomorrow morning. We are still waiting for the surgeon's assistant to go over all the details but we did have the cardiologist explain the surgery yesterday. This surgery will vastly improve his heart and the blood flow. We did get Tristan baptized this morning before they moved him to the Peyton Manning's (not name dropping, but can understand if Tristan becomes a Colts Fan) Children's Hospital. It is only a 30 second drive to that part of complex but being away from him will be tough.

 

We thank everyone for prayers and support. More pics!!!

Now don't expect these quick updates but Tristan's Grandma sent me an email pic I thought I should post. This is my 1st baby picture!

 

Typically in life when something great happens, something not as great follows. We did find out that Tristan had a little reaction to his medicine and stopped breathing once. This came to a big shock to Sarah and I but the nurses ensured us that it was normal for this to happen because of the medicine. He has a ventilator currently but is breathing on his own. It is there just in case he stops for a second to kick him back on immediately. Sarah also has been having low blood pressure throughout the evening and last night. She also has been a little dehydrated. I get the first dose of being a parent. I want to help both of them but it is something I cannot control. They know I am here for them though and that is what matters.

 

We are waiting for news on surgery. We will find out today.

Tonight was a great night. Sarah not only got to see Tristan tonight but she was also able to hold him! It is hard to believe it but this is the first time Sarah has been able to see him since he was born. Tonight was a special night indeed.

 

I did update a couple new pics of Sarah and Tristan.

 

Tomorrow we will get final confirmation regarding a surgery Friday morning.

 Sarah was induced at 8:00 am on May 19th. Thing moved very fast as her water broke at 9:00 am. Unfortunatley things did no move as fast as we and the doctors expected. They allowed 3 hours for the baby to be naturally placed but after no further progress they had Sarah start to push. Sarah did her best at pushing for around an hour until the doctor gave us our options. She could push for another hour or two or the other option was a C-Section. Sarah really did not want to due the C-Section but once the doctor explained she had been fully dialated for over 2 hours and the baby didn't make anymore progress a C-Section would still more than likely be the end result.

 

Sarah did great during the C-Section and believe it or not I did much better with that than the Epidural. The doctor said he was glad to see Tristan's head was where it needed to be for a natural birth and Sarah did everything she could to make that happen.

 

We saw him for a bit last night and I visited for bit this morning. They will be doing test today and tomorrow for a possible surgery Friday. They feel confident everything will go as planned especially since Tristan is nice and big.

 

I am putting some pictures up throughout the site and will be updated the more I get.

Thank you all for your support and prayers,

 

Dave, Sarah and Tristan!

Tristan David Horacek was born at 11:16pm on Tuesday May 19th. His weight was 7 pounds 5 ounces.

 

We will have more information from cardiologist in the morning and I will keep everyone updated.

Things are still going well. Sarah is staying very strong and our baby is almost here. They are expecting the baby within a couple hours.

Things are going well here. Sarah has had her epideral and the doctors have reitterated today should be the day. To further lessen my "street cred" I did almost faint during the epideral. Sarah did perfect but I was told to sit down and relax. Who would have thought?

We arrived at the hospital at 8:00 this morning. Sarah is dialated and their educated guess says the baby will be born today. We have a great nurse who is very informative and down to earth. She definitley knows her stuff.