Riley Day 42

Tyler started out the day with the GI test/ Xray to see what was in his stomach. They found that there was nothing else in there but that he had severe reflux. They have ordered a stronger medication than the Zantac that he currently is on so that will start this afternoon. This is a relief that there is nothing more in his stomach.

It is Friday...I (John) woke up at home this morning to the sound of the fan to our HVAC system wiring a sound that I had not heard before. I investigated and found that the central fan motor had seized up and would need replaced. So a few phone calls later a service man was out and they replaced the motor and we were back up and cool at home for Grandma and Connor by 6pm (and $800 later).

I drove back to Indy after work and the repair man had given me the bill. (Gas in Kokomo for $3.09/Gallon!) Arriving at the hospital Julie and Tyler were looking good and I was able to give him more than half of his feeding. Very exciting and we are closer to going home.

Riley Day 41

Another day starting with some iv team digging in Tyler's veins trying to get more blood. He is a tough stick. After a half and hour they still were only able to collect enough for one of the three labs! Poor baby; I hate seeing him go through this. During rounds today I wanted to find out about the clot in the SVC. It sounds like they are ok with him going home with it completely blocked off as long as he is doing well clincally. We will have to watch him very closely for any signs of complications as he grows. Right now the blood is going through a different vein to get where it needs to go, so we are not seeing any immediate distress. As he grows, the other vein may not be able to handle the blood flow and we would need to think about a surgery. They still were not sure of a plan for right now. They would be talking with the surgery team tomorrow. It doesn't look like we will be going home until early next week if he continues to do well.

I showed the doctors the chunks from yesterday's vomit and they were all shocked by them. I hate to say I told you so to the doctors..but I told them so! ( I had only been bringing up my concerns since Sunday when he first puked up the chunks.) They had never seen that either and were going to have a GI doctor come check him out later today. About time! Glad to see that he will have that looked at because his feedings are becoming increasingly difficult and he shows pain after he takes only 10 mils.

The GI team came to check him out this afternoon and were fairly confident that the chunks are lacto bezoar. This is where the milk becomes like cheese in the stomach to form a large hard chunk. They think that pieces may be breaking off and coming out in the vomit. They will do a test tomorrow with dye to determine if this is really what it is. If they find the mass, they will have to discuss removing it so that Tyler will have more space in his tummy. He is very uncomfortable today and each feed has become more difficult because it hurts for him to eat even through the NG tube. Every time I put him down today he screams and arches his back because his stomach hurts. I hope that this is the problem and that they will be able to solve it tomorrow and he will start feeling and eating better soon.

What a day! Tyler has a lot going on and I just hope we can get things resolved quickly so that we can manage them at home. Anne came over this afternoon so we could have a girl's night here with Tyler. We went out to dinner and then came back to hang out with the little man. We are having fun watching a chick flick with Tyler. He is enjoying hanging out with Anne. She gave his nurse a good suggestion for feeding him tonight using a slow drip on a pump. It is working well and he is not crying at the moment.

Riley Day 40

Forty Days! I can't believe it has been 40 days today. I got to the hospital only to find the iv team at Tyler's bedside digging around trying to get blood. Not a good way to start the day for the poor guy. After that, it was straight down stairs for an echo cardiogram. One step closer to discharge...or so I thought. When the doctor came in to check the echo, I asked him how the flow in the SVC was since the clot had been removed. There was no flow. NO FLOW? How could this be? We JUST had that cath procedure to open up the clot and there should be flow. There is another clot. That is all I was told at this point. Heart looks great where the transposition repairs occured.

After the echo, I requested to speak with the team in charge of his care because I had missed their rounds during the echo. I spoke with the fellow who has been taking care of him. She gave me the report from the morning with hopes that he would be going home by the weekend as long as he kept gaining weight. I stopped her and asked if she had heard about his echo because his SVC was blocked again. She did not know so she couldn't really answer my questions until she talked to the team.

Frustrating. We are getting really tired of being almost better and then having complications. It has been almost six weeks away from home and we really just want to bring our baby home soon. We are also feeling the "what ifs" because we asked for an echo before the picc line was removed but were denied that request because they said there was no way it would have clotted in the two days since his last echo. Well, it did and now there is no picc line in so a heart cath is no longer an option for a repair. We may be facing another open heart surgery sometime in the near future.

John spent the afternoon with Tyler and was hoping to get to speak with the doctors. The resident came in but didn't have any information for him. While he was there, Tyler had another episode of vomiting some large hard chunks. I have been concerned about this since Sunday when he vomitted what looked like large light brown tootsie rolls. I ask the doctors about this every morning and keep being dismissed. Today, John saved the chunks for me to show them in the morning. Something is clearly going on that is not right. No one that sees the chunks has ever seen anythng like it before. I really hope they will listen to me tomorrow, because I feel like this could be a reason why Tyler is having trouble with feedings.

Overall, an upsetting day. John is taking Connor home with him tonight so that he can get back to work. Hopefully, we will get some answers tomorrow and John can come back for the weekend.

Riley Day 39

Tyler looks good. He's breathing great and vitals all look good. We are looking forward to a possible Friday discharge as long as he keeps gaining weight and his Xrays look good.

Connor is having fun being with mommy and daddy. He does not think that he needs to nap here though.

Riley Day 38

The week looks like it has lots of minor mile stones for us as we will be preparing for discharge! We are excited but nervous at the same time. His to do list is still in place but we are able to put a few complete with monitoring marks down.

1. Eat on his own. -taking only 25% of his feeding
2. Show that he is gaining weight. -Two of three days down with gaining weight
3. Reduce his fluid behind his lungs to a tolerable level. -Fluid is to a tolerable level: Monitoring
4. Show that breast milk does not increase the fluid behind his lungs. -Monitoring day 1 of Xray
5. Step down the number of medications that he is on. -stopped #1 of the Diuretics today...

This morning the nurse was not able to flush his IV so they decided to get him a new IV. While trying to place the IV they had a real hard time getting it so they stopped. This lead to them getting approval to change #2 Diuretic that was to go through the IV to an oral dosage(not quite as effective but at least something). So now Tyler does not have an IV and all future #2 Diuretics will be oral.

5. Step down the number of medications that he is on. -stopped 1 of 3 Diuretics and transitioned to oral on the #2 Diuretic. (#3 is already oral)

Look MOM no IV!

Riley Day 37

Today Connor is on his way down to stay with us. Grandma Holmes is his transport after a long weekend staying with her. He was excited to see his toys and sleep in his own bed for the weekend. I hope that he will tolerate the week here in Indianapolis awaiting Tyler's return home.

Grandma got to hold Tyler for the first time and she was thrilled to do so. It was really hard for her to put him down to leave. I go through the same feelings when I leave him to sleep for the night. We had him all dressed up for the day and he received lots of compliments on his duds. "Captain Adorable".

Connor loved seeing his "Baby Broder" but is still very shy as he did not want to touch him. (Not exactly a bad thing at this point)

Tyler had a good morning still struggling a bit with his feeding but his Xray showed positive signs with the fluid. The nurse missed his IV Lasix (Diuretic)in the morning so it was started at Noon rather than 9am despite Julie questioning where it was. We were a little irritated at this but glad to see that he was at least getting it. In the evening Tyler was having his routine shift change exam and he choked followed by a cough and he threw up what looked like a hair ball!?! It was a huge hard chunk! The Doctors believe that this was calcium that was given at the same time as his 30 calorie formula and it reacted with each other to form this Tootsie roll of a chunk. Very concerning for us. They will be watching the timing of the doses and his reactions.

Riley Day 36

Happy Anniversary to my wife Julie whom is the love of my life and mother of two beautiful children. We have been married for 6 years now and as we talked about over dinner we would not have changed one thing. (maybe 36 days in the hospital)

Today was rather uneventful for Tyler. He has maintained good fluid control and we will see about reducing more of his medication on Monday when the full staff is in. We did get news that it would not be unreasonable that we could look to being released by next weekend as long as things continued to progress.

Here is the list of things that Tyler has to accomplish:
1. Eat on his own.
2. Show that he is gaining weight.
3. Reduce his fluid behind his lungs to a tolerable level.
4. Show that breast milk does not increase the fluid behind his lungs.
5. Step down the number of medications that he is on.

It appears that he is already doing most of these, but the big one is eating.

Riley Day 35

Today Tyler looked very good. His skin color has leveled out and his breathing looks great. There are little to no major retraction when he breathes. He ate some from a bottle at every feeding last night and has done well on his eating today. We were able to work with the speech therapist today to have his sucking analyzed. The results were good get tired half way through his feeding so we hope that as he progresses he will get more practice and be able to get to the bottom of his bottle.

His lungs look much dryer today and there is progress on the amount of fluid behind his lungs. We will be anxious to see the next few days progress post SVC clot clearing. This is what we feel has been the root of the fluid build up. He already looks to have significantly less fluid than he had 5 days ago in his Xray.

He got his picc line removed today too because of the possibility of another clot forming. He has a peripheral IV in his arm for the meds right now. Hopefully we won't be here too much longer for him to get it changed too often, but it is a better option than having the clot risk of the picc line.

Connor...

This last week we have had Connor here with us in Indianapolis. We were glad to have him around because we really missed him but taking care of a bored two year old and being stressed out parents was taking a toll on us. When we heard that Tyler was going to to have another procedure we were very concerned with what to do with Connor.Anne volunteered to take him for the day which was a huge help.  Only moments after Julie had heard that the procedure was to happen Wednesday afternoon, Cherylin called her and said that she was going to come and get Connor for us and that she was working it out for people to watch him. What a huge relief. We were in no shape to handle taking care of him during such a stressful procedure. We are so grateful for her and the Hoffmans who have been watching Connor until Grandma can come and stay with him this weekend. The plan is for Connor to return to Indianapolis Sunday to stay with us with the hopes that we will be discharged by the end of next week.

Some of the things we have done...

The Heart Fix

The Clot and repair

You can see the stitches on his arteries from the switch and then the black mark on the SVC is what the clot was like.

 Waiting for procedure

Loves the Mamaroo swing

Riley Day 34

Tyler had a rough night last night having a ventilator in and working really hard. They had to give him lots of pain meds but he looks better this morning than 10:30 last night. He was very pale and anemic last night, so they opted to give him a blood transfusion. The goal today is to get him weaned from the vent today. The doctor took some aggressive steps already this morning and he appears to be doing great with the vent turned into a positive air pressure mode. (Tyler initiates the breath and the vent finishes. Burns less calories that are so precious at this point.) Once the vent is out they will work at getting the PICC line out which has a high risk of clotting the area again.

The doctor feels that after the procedure yesterday the fluid around his lungs has gone down greatly but is still higher than normal. They have been treating him with additional diuretics and it appears that the fluid is moving now that the SVC has been opened up. (I will post a picture of a diagram later today) With this news the doctors feel that they don't need to put in the drain tubes that they had originally thought they would need. (great news but not out of the woods yet)  It looks like we will be in the Pedes ICU (PICU) for a little bit but hope to be back in the heart center soon.

Three doctors were checking his echocardiogram in the room while Tyler decided he was done with his ventilator and extubated himself! Little stinker pulled the tube right out. He will have a soar throat for a while since he did that. Thankfully, the doctors were here and were able to help. He is now on his nasal cannula of Oxygen. The echo shows that there is blood flow through the SVC and that is great.

Procedure Over

Relief.That is how we feel right now. Waiting all day for this procedure to start...waiting for them to take him back....waiting for updates...waiting for the procedure to be over...waiting for the dr to explain what happened. What a day. A short 30 minute procedure turned into a four hour learning curve for the doctor. We are so thankful for a good outcome and appreciate all of your prayers.

We were very nervous going into this. Tyler had a blood clot caused by his picc line that was obstructing blood flow from his heart. They were thinking this may be a cause for some of the fluid problems and decided that because it was "partially" obstructing his superior vena cava, they would send him to the cardiac cath lab to have it dilated with a balloon to open it up for better flow. Seemed easy enough, however, each doctor that explained this procedure made sure we understood that bad things can happen and that there is a real risk of something "catastrophic" (death). Not something a parent likes to hear several times in one day before handing their baby over for the procedure.

When the nurse came to take us down to the lab, we were a nervous wreck. We carried him down and handed him over with lots of hugs and kisses hoping for the best outcome. We were told that it should not take too long and that he would be off the ventilator and back in his room tonight. About 10 minutes before the procedure it was decided that they would not be putting in chest tubes and that he would stay on the ventilator and be moved back to the icu for the night and then re-evaluated in the morning. We went upstairs to wait. And wait we did! Four hours of waiting is so so long when you are unsure of the outcome. Finally the phone rang and the nurse told us that Tyler did great and was headed to the ICU for recovery. We then were waiting on the doctor to find out what he accomplished.
An hour after the nurse called, we got to speak with the doctor down in the ICU. He was pretty excited to tell us all about what he did. It took 3 different entrance points and many different wires and catheter tools. He found that he was up against a complete block in the SVC versus the partial narrowing that he was planning on. He had to re-think his game plan several times as he could not get through. Finally, he was able to use the picc line to get his tool into the correct position to open it up. He was excited because it was a difficult case with a good outcome. (He even wanted to call his mentor to tell him about this..) We are so glad he was able to be so excited. He said it could have gone very badly, but we are thankful that the picc line was still there and he could access the site.
The SVC is still narrow, but not totally obstructed. Hoping that this is the last clot to deal with. Tyler is in the ICU on the ventilator tonight. They will evaluate how to drain his fluid tomorrow. Most likely a minor chest tube surgery. He will be getting another blood transfusion tonight as well. Thanks so much for your prayers. We really appreciate it and know that God was with this doctor through this difficult situation today.

Riley Day 33

Plans are to have the heart cath procedure today sometime after 3pm. We are being worked in after 3 other cases, so there is a chance that it may not happen today. Please pray for Tyler and the doctors.

Update: We just took Tyler down to have the procedure. They decided that they will only be dilating the clot tonight. He will stay on the ventilator and go to the icu tonight and have the drain tubes placed in the morning. They keep reminding us of the "catastrophic risks" which makes me very upset. Please pray for our little guy. We are waiting for this to be over and have him back with us.

Riley Day 32

The echo shows that the clot is still there in his superior vena cava. It is restricting some blood flow and has hardened there in the vein. Our next step will be to go in with a heart catheter to dialate the opening in the clot to allow for more blood flow. This is a risky procedure that we are not happy about having to go through. While he is out, they will also be inserting two more drain tubes in his chest to get rid of the fluid buildup. The picc line (which caused the clot) will also be removed and another arterial line will be placed.

Riley Day 31

It's the 18th and Tyler is one month old today! Not much to report. Still fluid on lungs and he is back on the Oxygen. Going to slow down the methadone wean because he was not tolerating it well. Hoping to get a better Xray in a few days. On a good note, he kept down all of his feedings today.

Riley Day 30

A huge thank you to Teri from our small group. She came down to Indianapolis this weekend to visit her granddaughter and offered to take Connor to the zoo for a while. He had so much fun with them. We also greatly appreciated a little time to be together with Tyler and not be chasing Connor. We got him back at lunch and he told us he had fun watching dolphins and seeing lions.

Happy Father's Day...the boys didn't get the "happy" part. They gave John a rough go with some major fits! I think we will do a father's day re-do when we are all home and not out of our routines. Tyler surprised John with a present that his nurses helped him put together. Connor had a card and we made pancakes for breakfast. We plan to have a fun family day all together sometime soon too.

Tyler's methadone wean is taking a toll on him. He is not a happy boy at all and lets everyone know it. Hopefully this will pass soon. It is no fun watching him be upset and trying to console him when he is a screaming sweaty mess. He did manage to get off of the oxygen again today which we were very excited about. He calmed down this evening and I got to cuddle with him while he slept. I enjoyed it.

Riley Day 29

Not a great start. Tyler was having trouble early this morning and is now back on 1/2 liter of Oxygen. He hasn't been on this much in a long while. He was retracting and struggling to breathe, so they ordered an Xray and several labs. The Xray shows even more fluid, he has lost some weight, puked up several feedings last night, but somehow the labs look good. Here I thought we were moving in the right direction. It is baby steps forward and large steps back with this recovery. They decided to give him a protein that will help draw fluid into his vessels and then a diuretic to help him get it out once it is in the vessels. I hope this works. They also feel that the special formula is still necessary even though  we have not seen improvements yet. They hope to check again Monday to see if fluids are going down.

Tyler was crying a lot when I came in this morning. He even cried and screamed during the tube feeding. I don't think he likes this formula. It may be upsetting his tummy too because he gags and throws up often even with the Zantac. The nurse thinks it could be the vitamin, we will see how the feedings later today go. Poor guy. He was breathing so hard during his feed and was covered in sweat. The next feed went well and he slept through the tube without breathing too hard.

Connor came up to visit for a little while after he and John went to the Run for Ronald charity race for the Ronald McDonald House. Connor liked watching all the runners cross the finish line. He even got to have a kids medal. He brought all of Tyler's stuffed animals over to him so he "could have a zoo" as Connor told us. We went downstairs for an amazing lunch. A family had provided Famous Dave's! It was so good. They even had little games for Connor to play and he won a prize.

During the afternoon, John was able to get Tyler to take 32 mils from the bottle. He then threw up half of it. He is also not tolerating the methadone wean. Out of no where he screams shrill screams and gets very upset. He also shakes and sweats a lot too. He is just not a happy guy right now. Hopefully he will have a better night.

Connor's New Brother

Riley Day 28

Four Weeks Old! Tyler had a great surprise for us today....no more Oxygen! The nasal cannula was gone when I got in this morning. Way to go Tyler! Just in time for some four week pictures :) He even gained a tiny bit of weight too! Maybe we are on the upswing? I hope so, we are ready to get out of here. He even kept some of his feedings down last night. Hoping to continue this trend.

It was a busy day. His picc line stitches came out, so they had to have the IR team take a look at it to see if they needed to re-suture it into place. He had to have an Xray to make sure that nothing had moved. I asked how the stitches could have come out when it is taped into place and they told me that since he has lost so much weight that they may have gotten loose and fallen out. The Xray showed that it had not moved, but when they came to re-suture, they could not get it to draw blood (same problem from last weekend.) Since it is a Friday and we are heading into another weekend, they decided to take him down to radiology and re thread the line. I got to carry him downstairs to the lab. Even though he was on his leash of monitors it was nice to be able to walk around carrying him somewhere other than from his bed to the rocking chair in his room. It took about and hour, but his line is now all re threaded and ready to go. He did great.

After a short nap, Tyler was ready for his 4 week photo shoot. We brought Connor in to take some pictures too. Before Tyler was born we had Connor make him a birthday card and pick out a present to give his baby. We bought Connor a little kid camera from Tyler also. Connor gave Tyler his present and opened it by the crib and handed him a little panda bear and the card. While he was getting the gift out he said "Happy Birthday Tyler" without any prompting from us. It was so cute. Tyler loved watching his present be unwrapped. Connor loves his new camera and took lots of pictures of Tyler and the hospital.

4 Weeks!

The photo shoot was interesting. We taped a sheet up to the wall in Tyler's room and dressed the boys in their big brother and little brother shirts. Tyler got to venture over to the other side of his room with a travel monitor on for his wires.

Connor taking a photo of Tyler and his B-day card and panda

Brothers

This photo needs photoshop. Best we could do with the timer.
(the sheet fell down too!)

Riley Day 27

Tyler's stomach does not seem to like this formula stuff. He vomited every feed last night. We are going to try some Zantac to help with this today. We won't know for a few days if it is helping the fluid levels or not. He lost weight again today, so this is concerning. He has been on a downward trend since the surgery. They will be adding calories to the low-fat formula to try to help him gain weight without getting the fat that causes fluid buildup.

Today is also day one of the new methadone wean dose to try to get him off of the narcotic. Well, let's just say he noticed we are giving it to him less frequently and is not thrilled about this change. He will be sound asleep and then out of nowhere lets out a shrill scream. They say it is common, but it is hard to see him so unhappy. He seems to like being bounced and being in a bouncy seat.

I did catch him in a good mood for part of the day and dressed him in some cute pjs. He let me take some pictures before he fell asleep. Can't wait to get that oxygen tube off of his face! He is getting so close. Hoping to try to take it out for a bit tonight and see how he tolerates.

We had dinner with Anne and Keith at Donatos and then found a park for Connor. His favorite part of the whole park was runny over to the wheel chair ramp. It was so funny. He then decided he wanted to pile wood chips on the slides so he could slide through it. He is such a funny guy.

I went back to Tyler's room after the park to give him his last feeding. He only took 10 mils and then wanted the tube. I really think this formula tastes terrible because he hates it. We had a different nurse tonight who put all his meds into the milk in the tube. I told her that Tyler throws up a lot and that I wanted to be sure he got his meds. She said she would not do it again. Before his feed finished, we noticed that it had curdled in the cup and looked disgusting. The nurse said she had never seen that before and went to get a doctor to ask what to do. I was mad because she dumped all his meds in that milk and now that there were only 10 mils left, we had no idea how much of his medicine he actually got!  They determined that the calcium chloride med must have reacted with the formula. Hoping that this does not happen again and that they give him his meds separately and do not dump them in.

 

Riley Day 26

Happy Baby! Wow, Tyler was so happy this morning. When I got to his room this morning he was just bright eyed and happy to see me. I think he was even smiling some. He kept up this great mood and took a record 23 mils from his bottle! (quickly beat out by John in the afternoon who got him to take 30!) I decided to get him dressed in a cute outfit and take some pictures.

I thought for sure he was feeling much better because of how he was acting and how he looked. Interestingly, the doctor's informed me that his fluid levels on and around the lungs are the highest ever. They showed me the before an after Xrays because I really did not believe them. We are going to have to try this low-fat formula to try to get rid of the fluid. They think that it is caused by the fat in breast milk, so hopefully by using a special formula for a few weeks we can get the fluid out. He is very skinny and has lost all of the nice fat he was born with. They will be adding extra calories to the formula to try to get him to gain weight too. Tyler is quite a puzzle to figure out. At least he was happy. We also noticed a bump on one of his ankles the size of a quarter. We had an xray and they are thinking it is a calcification build up from an iv or a stick. They will be researching if he had an IV there at one time to make sure. 

Today was the first time that our family of four was in the same room! Connor came in to say hi for a couple minutes today. John carried him in the room and he saw his baby brother. He smiled really big and liked looking at him. He didn't say anything while he was in the room, but when we went down to have lunch after, he was talking about his "baby brudder." and "baby awake" I think he likes him. We will get a better picture of the four of us, but this was Connor's first encounter. See how he is looking at Tyler? We have to be very careful about germs right now, so Connor will have to wait to hold him. I didn't know Connor was coming up to the room at that moment and Tyler had just eaten, so we did not want to pick him up since he has been puking many of his feedings today. It is best to let him relax after he eats.

Anne and Keith had a surprise for Connor. She stopped by the room last night with a present. They got him a lego zoo set to keep him busy. He loved it! He opened all the animals and started building a tower right away. He says "thank you Anne and Keith!"

Riley Day 25

Today is a pretty good day. The fluid levels went down a bit so we don't have to try the special non-fat formula for Tyler. He is losing weight, so we are hoping to get his weight back up as well as get the fluid down. He loves being awake in the morning and I love watching his eyes looking all around.

My mom was able to drive home today, so we are here with Connor now. He is being a trooper and has done so well being watched by both grandmas and now staying here in our room. He does have some trouble taking naps and going to bed when we are all in the same room though. There is a playground out in the courtyard at the Ronald McDonald house and he loves that!

I would like to say a special thanks to Southwest Airlines for providing a very nice grilled dinner tonight at RMH. It is such a blessing to see families, churches and companies providing several meals throughout the week for families here at RMH.

Riley Day 24

Today is a better day. We are all very glad that the pain medicines seem to be helping my mom. She is still in some pain, but it is more tolerable than yesterday. I went over to see Tyler first thing since it is a Monday and everyone will be there for report this morning. I have several questions and really need to be sure to get answers from the right people today.

He was wide awake! I love it when he is awake and I get to talk to him. He tried to feed by mouth today since he was so alert but was tired after only a few minutes and I had to feed him through the NG tube. He seems to get really sweaty and tired when he tries to eat and they think it is partially due to the increased fluid around the lungs making it harder to breathe. The doctors were happy to report that there was no change in the fluid level this morning. This is good because it did not get worse today. They wanted to prepare me for the possibility that they may need to start feeding him a special formula that is low in fat because the fluid build up could be caused by fat from breast milk. I was very unhappy to hear this because I have never heard of any formula being better for a baby and he is so skinny right now! They told me if they ended up having to try this that it would be temporary. I really hope we don't have to go down that road but if it will prevent a surgery for a drain tube then I will try it.

I met another cardiologist today who I really liked. He has been there a long time and has seen a lot of transposition babies. I asked him if what was happening with Tyler was unusual because we have been here for so long. He told me that it is not unusual at all. Every baby is different and we have to take into consideration that he did have the complication right after surgery where they had to go back in and his chest closure was later too. Tyler just had open heart surgery 2 weeks ago and I need to be patient for him to heal at his pace. He said that when they started doing this operation 25 years ago at the hospital, kids would be there for an average of 2 months! Two months! Neither of us ever thought we could possibly be here that long. We were thinking 3 weeks maybe. I don't think that Tyler will be here for two months, but it is good to hear that he is not abnormal for still being in the hospital. I wish someone would have told us this in the beginning so we would not be so worried right now about his slow progress.

After speaking with the doctors, I headed back to go to the museum with John and Connor for a while. My mom was doing better and rested at the room while we were there. Connor LOVED the museum. we only were there for 2 hours, but he had so much fun. The hot wheels display was really fun. They had actual cars that kids could climb in and tons of hot wheels with orange track ramps. John really enjoyed the fourth floor river room where he and Connor spent about an hour playing with the long water table full of boats. Connor ended his trip at the construction zone where he was scooping mulch with a shovel and riding on a bobcat toy. He liked it so much that he cried all the way out of the museum and back to our room for the bobcat. We really enjoyed our much-needed time away from the hospital with Connor.

We took turns going over to be with Tyler for the evening and he is looking pretty good. I noticed his breathing was not as labored as the day before, so hopefully he is getting rid of some of the fluid. He is so sweet and loves to be held. He doesn't get super upset much and seems pretty relaxed. I don't know if this is because of the medications or if he will be laid back. Here is to hoping he will be a nice calm baby when he gets to finally come home! Hoping for good news of less fluid tomorrow so we don't have to go the formula route.

Riley Day 23

Today was going to be a really fun day away from the hospital. We had plans to take Connor to the children's museum to see the hot wheels display in the morning followed by lunch and then some time with Tyler while grandma watched Connor. We would then do dinner with some friends at the end of a train ride.... ha ha. Why make plans?

At 8am my mom turned to get something and then hurt her back. She has a history of bad back pain and a herniated disk, so this was not a little thing. She hurt it really bad. We spent the morning trying to find a Gold's Gym so she could go swimming in a therapy pool to try to help it. We took her there and I sat at the pool with her while she swam and did her therapy but the pool was not a heated therapy pool and did not help much. We picked up some lunch and took her back to our room while I went over to be with Tyler for a bit. John was trying to figure out where a 24 doctor's office was here or a pain clinic or anything to try to help her get some medicine. They found one, so I drove her to it and realized that sitting in a waiting room full of about 20 sick people was not somewhere that I should really be right now. I dropped her off and then told her to call me when she was done to be picked up. They were able to give her a shot and some pain meds to try to help. We ate dinner here and then let her rest in the room while we took Connor on the train to have ice cream since he had been so good and really wanted to ride the train we had talked about.

As if this was not enough added stress, Tyler was worsening and was building up more fluid around and on his lungs. They were keeping us on alert for a possible surgery to have a drain tube added, He was also starting to loose weight because of all of the diuretics he is on.

Overall, a very stressful day for all of us. We feel bad that my mom had been watching Connor all week and then hurt her back and she feels bad that her back got hurt. We are all thankful that if it had to happen, at least she was here with us and not home alone with Connor. I should also mention that my dad is in Canada this week and is unreachable by phone! Looks like Connor will be with us this week.

Riley Day 22

It's the weekend again. I am not particularly found of "the weekend" around here. It seems that people that work at hospitals like to have lives outside of the hospital on the weekend, so less things happen. (venting) I understand this, but I also get frustrated because it seems like Tyler chooses the weekend to have something out of the ordinary happen. I have to say that if it were truly an emergency situation, people would come in and do what needed to be done, but when it is not an emergency, they use a wait and see approach to things. This makes my impatient self crazy sometimes! Today, Tyler had 2 things come up that concerned us: extra fluid build up on the lungs and the picc line where the clot was found was now bleeding at the entry site. It was decided that since the team for picc lines was not there for the weekend that they would call another hospital to ask for advice. They decided to use a surgery gauze to try to get the picc line to stop bleeding at the entry site and then have the line team check it out on Monday as long as it was under control.

Grandma Pfleeger brought Connor to visit this afternoon. We were very excited to see him. Connor and Daddy went to the playground and played till dinner while Grandma got to see Tyler. Dinner was at the Ronald McDonald House provided by a church. Connor loved the "chocolate CAKE!"

Riley Day 21

Three weeks old!

Time goes both slowly and quickly sitting here in the hospital all the time. On one hand, it feels like we've been here forever and on the other hand I can't believe Tyler is three weeks old. I want time to go quickly to get out of here, but I also feel that I am missing out on his newborn stage. He is still hooked up to many wires and tubes which makes cuddling with him difficult. I have to ask if we can start his feedings and the hospital gets to decide most things about him right now.

Last night was not the best for him. He went up from 1/8 liter of Oxygen to 3/4 litter of Oxygen. He is also breathing fast and is grunting some too. His Xray shows more fluid in the lungs, so they are giving him more medicines today to try to get that down. He will be having another echo cardiogram to make sure things are functioning correctly after surgery.

Tyler's feedings did not go well today and he seems to be working hard to breathe as well. The echo cardiogram showed increased fluid on and around the lungs. The cardiologist also found a clot in one of his vessels where the picc line enters. This clot is blocking some of the blood flow back to the heart. They are monitoring this, but don't feel it is causing too much problem at this time. The team will be checking on it tomorrow to see if the line needs removed or redone. For now, his blood thinners have been increased to try to help the flow. He is also on a higher dose of the diuretic to get rid of the fluid build up.

On a good note, the Oxygen is now back to 1/4 liter for the evening. Hoping for less fluid on and around the lungs tomorrow.

Tyler's Surgeon

Dr. Turrentine, Tyler's talented surgeon and one of his nurses.

Tyler checking out his animal.

Riley Day 20

Tyler is much more awake this morning. He seems to be in a much better mood than yesterday. He took his feeding fairly well by mouth at 9am.

The doctors still see some fluid build up on the lungs, so he is getting more diuretic medications today. Hoping to try to get him off of his Oxygen soon because he doesn't like the tubes in his nose.

Well, Tyler was just teasing us by taking his first feeding by mouth. He would not feed by mouth the rest of the day.

We took the people mover train from the hospital to the canal to get some ice cream in the afternoon. It was a nice break to be outside for a little while. We ordered a pizza for dinner and Tyler got to have his first movie night in his room. He likes to cuddle despite the tubes and wires.

Riley Day 19

Tyler's first night in the heart center went well. Today's goals will be to try to get him to eat. His Xray this morning showed some fluid build up in the lungs, so he will be getting another diuretic medication to try to get that off. He is down to .25 liters of oxygen. We are going to try to turn off the oxygen today too.

Eating is not his thing today. He wants nothing to do with it at all. The nurse noticed that he was very stuffed up, so they did some vacuum suctioning  in his nose and got out so much stuff. He did not like this and they think the build up was caused by the oxygen tubes in his nose. We tried to turn it off twice during the day but his Oxygen saturation's went way down each time, so he still needs it on.

Overall, it was a discouraging day. He was not very responsive to eating and he is still on the Oxygen.

Riley Day 18

Great news! Tyler is number one on the launch pad out of the ICU. He will be moving upstairs to the heart center as soon as a room opens up. The doctors are pleased with his heart progress and feel he can move up. In the heart center the goals will be to feed by mouth, get off of the oxygen and have stable vitals.

Tyler's new feeding plan started today with us trying to feed him by mouth. He doesn't think this is very fun at all. He much prefers to be tube fed. He is allowed to breast feed once per day and the rest is by bottle. He would not take the bottle at all and the nursing wasn't the greatest either. They say it takes time after surgery to be able to feed by mouth again. This feeding challenge brings back tough memories from when we were trying to teach Connor to eat at the hospital. It is a frustrating challenge that we hope will not last too long.

We moved up to the heart center late in the afternoon and Tyler now has a big crib for a bed. This floor is so nice! We have a pull-out couch and our own bathroom in his room. It is much quieter up here too. Tyler's nurse got him a bouncy seat and he loves it! He is still having some withdrawal symptoms from all of the pain medicines he has been on and the bouncing seems to help him a lot.

Riley Day 17

Tyler's first night off of the ventilator was not an easy one but he is pushing through. His right lung was not inflating fully so they did some treatments for it and watched him to see what he would do. This morning he was breathing much better and the lung was inflating. They said that after being on a ventilator for a while it can take a while to get breathing right and they just have to let him try it. The nurse told us he was pretty fussy over night too. I am guessing he was protesting having to do all the work himself.

The doctors are working on weaning Tyler off of his pain medicines. It is hard to watch your baby go through withdrawal from these medications. He is very shaky and his little body is having a tough time letting go of some of these. They have started a new one to try to help him get off of the others.

Another new development is starting to feed Tyler every three hours instead of on a constant drip. Today we tried feeding him by mouth a few times (he didn't want anything to do with this!). We ended up tube feeding him very slowly after each attempt. His stomach is not used to getting full, so it has to be re-trained to fill up with each feeding. He gagged a few times while getting his belly full because of this. They hope that in a few days it will be easier for him.

Riley Day 16

This morning we took Connor on the People Mover train that goes between the three hospitals here. He loved riding on it. There was a motorcycle ride for the Children's Hospital going on today and we got to watch tons of bikes drive by. Connor thought they were cool but some were loud. It was neat to see how many people were riding to raise money for the hospital.

Big News! The ventilator is out! Tyler has been awake almost all afternoon. They took his ventilator out at 5:30pm and we were able to hold him about an hour later. We are so excited. He is still on oxygen, but he is doing the breathing. A few hours after the tube came out, he started struggling a bit, so he had to have an Xray. It looks like one of his lungs isn't fully inflating, so he is having a breathing treatment and going back on one of his medications. This happens a lot after getting the tube out because babies aren't used to having to do all the work. They are watching him more closely and expect that he will work it out without having to be re-intubated.

The Vent is removed!

Riley Day 15 Zoo Day

Today we are taking a much needed break from the ICU to spend time with Connor. Grandma and Grandpa Holmes are joining us for a trip to the Inianapolis Zoo. The weather is perfect for a zoo trip. We even arrived in time to get tickets to the dolphin show. Connor was a huge fan of the dolphins! He clapped, squeeled and smiled so big while watching them jump and splash.

After lunch, we went back over to see Tyler while Connor napped. He was also napping really well. He had a sponge bath for the first time! All other "baths" have just been with wipes. It is great that he is doing well enough for a sponge bath. The nurse said he did not enjoy it at all. His hair is a redish blonde now, much like Connor's was when he was born.

One of two remaining heart medicines was stopped today! Way to go Tyler one more to go! His nitric is completely done now too. The ventilator has been lowered way down and we are working on getting him to do some of the work so we can get that out. The bed warmer was also turned off and he is very bundled in blankets because he is still not sure how to keep his temperature up. Overall, it feels like he has turned a corner today as the amount of support and medications continues to go down and not up.
 

Riley Day 14

Two weeks old today! Today also marks one week since open heart surgery. Tyler looks great. He had both chest drain tubes pulled out this afternoon. Two more things gone! He is doing very well and they are backing down the sedation medicines to try to get him to do a little of his breathing work so we can work on getting off of the ventilator.

Today was an especially fun day because Grandma Holmes brought Connor down for a visit. It was so good to see him. He has grown and is talking even more than just two weeks ago. He was very excited to see us. He loved the playground in the courtyard at the Ronald McDonald house. After Connor went to bed, we went back over to see Tyler for a short while. He was wide awake and happy. It was so good to see his eyes looking at us and him not looking upset or in pain. We are so glad we went back over for those few minutes. It was wonderful.

Riley Day 13

This morning we saw Tyler resting comfortably! They decided to sedate him since he wasn't tolerating very well yesterday. We were there for the doctor's report and it was positive. Last night's episode was caused by another mucus plug in his chest. They don't think he has pulmonary hypertension. The plan for the day is to get him back to the level of support that he was at before the incident. He made it down to those levels by mid afternoon and is doing well with it.

He was able to get the bladder catheter out this morning too! Also making an exit was his central line in his shoulder that they were using to give nutrients. He is getting a constant feeding drip of milk at 10 milliliters and hour now with extra calories added. A very good morning for Tyler! Thanks for all your prayers. He is much more comfortable today and I am hoping that when he starts to wake up again with his pain more controlled.

Thanks so much for your constant prayers for our little guy. We are touched by all of the love and support of friends near and far. We have been comforted during this difficult time. It is encouraging to see so many people praying for Tyler. We know that God is good and that he is with Tyler through all of this. We are amazed the more we learn about this procedure that it is even possible to correct his heart problem. Praise God for the advances in medicine and the talented surgeons. Forty years ago, this surgery would not have been possible.