Tyler did well on his first night after the sternum closure. He stayed at 60% vent oxygen support and the nitric was weaned down to 5. The doctors were happy with his progress. He woke up from the sedation around 10am and realized that he was in pain. This was terrible to watch. He was moving around and turning purple as he cried but no sound came out because the ventilator tube is in his throat. He got so upset that the respiratory team had to come in and watch him. We tried to help soothe him by touching him. It seemed to help some, but he was in a lot of pain and very upset. We got a classical music cd to play for him and turned down the lights too. The nurse says that it takes a while to adjust pain medications when they wake up and that it is a balancing act. Poor Tyler had no idea why he was hurting and no one could hold him.
He seemed to get a good nap in the middle of the afternoon with the right pain medicine. Later in the evening he got a little upset and his vitals started to go down some but nothing lower than we have seen before. The doctor, nurse practitioner and respiratory therapist all came in to watch him. The doctor was ordering some medications and vent adjustments. Tyler didn't look any more upset than he had been earlier in the day, but the doctor seemed concerned because he sat in our room with his team for a good 40 minutes watching. He also ordered some medicines to be in the room just in case. He explained that sometimes after the switch babies have pulmonary hypertension and that his blood vessels in the lungs weren't very happy. They got him stabilized and had to bring up the support on the vent and nitric to more than it was 2 days ago. We decided he was stable and could go back to RMH across the street to sleep. We were still uneasy so we called his nurse to check on him about an hour later and she told us that he was still having trouble after we left, so they did an Xray. They found that his vent tube had been pulled up and was not low enough in his chest which may have been the reason for the drop in his vital signs. They fixed the tube and he was doing much better. We are glad that it may have been only the tube placement and not necessarily pulmonary hypertension.
Thursday, May 31, 2012
Wednesday, May 30, 2012
Riley Day 11: Surgery Done!
Tyler went into surgery at 12:45. The doctor came to get us at 2:45 to let us know that he was all closed up and everything looked good. We went in to see him a little later and he was resting comfortably with his sternum closed. Three surgeries down and we are now on the road to recovery! We asked the nurse to see his Xray so we could see the wire twists in his bone. It was really interesting to see the open Xray and then see the closed. He has a few little loops in his sternum and you can see the surgeon's twist at the end of each loop. Apparently each surgeon has a signature twist for the wires.
We went to the Ronald McDonald House for dinner and when we returned, Tyler had a new friend in his crib. Anne had stopped by with a monkey for him to snuggle. The doctors are leaving all of his medications and vent support at the same level for the night and then in the morning start to back some things down.
Xray Open Chest
You can see the wires and lines too
Xray Closed Chest
see the little loops all the way up
Tuesday, May 29, 2012
Riley Day 11: Before Surgery
We came in at 7am to visit Tyler and were told he had a good night with the Oxygen vent support levels staying reduced at 60% and also the Nitric medicine was reduced from 20 to 10. Great progress! He is wait listed for surgery today so it will be in the afternoon most likely around 3pm. The surgeon would like to do it sooner if a room opens up. We are just sitting tight waiting for surgery.
Since today is not the weekend or a holiday, we were able to meet several more members of Tyler's care team. They rounded and let us know that he is stable. They noticed a red spot on his skin near his arterial line which will be looked at more closely by the surgeon today to see if it needs to come out or if it is just a skin reaction to the tape. I really hope it is a skin reaction and not the start of an infection. Dr.Turrentine didn't seem to be too concerned when he took a quick look this morning. He said he would take a closer look later.
Looks like we are scheduled to go to surgery around 12:30 EST. The chest bone is going to close and then we can start making some headway on the healing! More will come after the surgery.
Since today is not the weekend or a holiday, we were able to meet several more members of Tyler's care team. They rounded and let us know that he is stable. They noticed a red spot on his skin near his arterial line which will be looked at more closely by the surgeon today to see if it needs to come out or if it is just a skin reaction to the tape. I really hope it is a skin reaction and not the start of an infection. Dr.Turrentine didn't seem to be too concerned when he took a quick look this morning. He said he would take a closer look later.
Looks like we are scheduled to go to surgery around 12:30 EST. The chest bone is going to close and then we can start making some headway on the healing! More will come after the surgery.
Monday, May 28, 2012
Riley Day 10
No surgery today. The doctor told us that the schedule for surgery works best to do it Tuesday since our surgeon's team is off for the holiday. At first I got upset because I was assured that doing a surgery on the Friday before a holiday weekend would in no way have an influence on his care. I let the doctor know this and that I was not too happy about that excuse. When the surgeon came to check on Tyler he and the doctor were able to explain that the reason for waiting until Tuesday was because he prefers to work with his team but also that Tyler is still on 100% oxygen ventilator support and they would like to try to wean him back to 60% today so that they have some room to help him if he needs it following the surgery. This makes a lot more sense to me than just "its a holiday." They also said that he is starting the recovery process despite not having the chest closed and that closing the chest is not something that has to happen before he can start recovering. This was also good to hear because I was under the impression that he could not really start recovering until after his chest was closed. They are working him in on the wait list for surgery tomorrow and it should be sometime in the afternoon. The doctor said this surgery will take a couple of hours...nothing like the 13 from Friday's surgeries.
Riley Day 9
Tyler looks great this morning. He was sporting a mohawk, so I am sure he and the night nurse had some fun. His swelling has gone down so much and he is looking much less green since he had a bath last night. The green is the antibacterial wash that they used before surgery. The doctors are pleased and are predicting a possible chest closure tomorrow. He is still under anesthesia, on a paralitic and on full ventilator support but occasionally I see him move a bit.
Our nurse today was very helpful and told us we could bring some socks and a clean stuffed animal for Tyler. They can use the animals to prop up his hands and feet as they reposition him every couple of hours. A very positive day for Tyler! Seeing 100% blood oxygen was one of the highlights.
Another fun surprise was a care package dropped off at the front desk from our friends Jason and Christine. What a treat! I am enjoying some snacks right now. Anne and Keith picked us up and we were able to get away for lunch. I am so glad to be in a city where we know someone. Thanks to everyone for all of your kind notes and prayers for us and Tyler as we go on this journey. We are so blessed to have you all in our lives.
Our nurse today was very helpful and told us we could bring some socks and a clean stuffed animal for Tyler. They can use the animals to prop up his hands and feet as they reposition him every couple of hours. A very positive day for Tyler! Seeing 100% blood oxygen was one of the highlights.
Another fun surprise was a care package dropped off at the front desk from our friends Jason and Christine. What a treat! I am enjoying some snacks right now. Anne and Keith picked us up and we were able to get away for lunch. I am so glad to be in a city where we know someone. Thanks to everyone for all of your kind notes and prayers for us and Tyler as we go on this journey. We are so blessed to have you all in our lives.
Sunday, May 27, 2012
Riley Day 8
They say the first 24 hours after surgery is critical. Tyler's 24 hours went very well. He stayed very stable and met his three goals for the day. He needed to have a heart rate less than 160, BP of greater than 60 and oxygen saturation greater than 94. He did very well all day.
We had one minor incident in which he gave us an unneeded scare. They came to change his dressings so we went for a walk but forgot my pump parts so we came back to get them just in time to see the respiratory therapist and the nurse working on him. The nurse then ran out into the hall with his alarms sounding looking for the doctors. The doctors came running into our room along with many respiratory therapists and nurses. They were using the manual breathing assistant and calling out orders for some different medications and Xray! Talk about scaring us! One of the doctors looked at us and said don't worry he is fine. It is hard to believe that when so much is going on. Turns out he had a large amount of mucus that was causing him not to get the full oxygen from the ventilator. The doctor did some deep suction, administered a medication and everything was fine. Though it was hard to see this, we are so glad we did because the response time was amazing. Tyler is fine and they know to keep watching for extra mucus build up. We rested well back at RMH across the street knowing how great the care was for Tyler.
We had one minor incident in which he gave us an unneeded scare. They came to change his dressings so we went for a walk but forgot my pump parts so we came back to get them just in time to see the respiratory therapist and the nurse working on him. The nurse then ran out into the hall with his alarms sounding looking for the doctors. The doctors came running into our room along with many respiratory therapists and nurses. They were using the manual breathing assistant and calling out orders for some different medications and Xray! Talk about scaring us! One of the doctors looked at us and said don't worry he is fine. It is hard to believe that when so much is going on. Turns out he had a large amount of mucus that was causing him not to get the full oxygen from the ventilator. The doctor did some deep suction, administered a medication and everything was fine. Though it was hard to see this, we are so glad we did because the response time was amazing. Tyler is fine and they know to keep watching for extra mucus build up. We rested well back at RMH across the street knowing how great the care was for Tyler.
Saturday, May 26, 2012
Riley Day 7 Surgery: Post
WOW...13 hours of waiting room time! Not the ideal Friday at all. The good news is our good friend Anne Mundrick lives nearby and was able to bring us lunch, pick up some Tyler photos and distract us for the afternoon. She and Keith even brought us chocolate ice cream when the day turned much longer than expected. We appreciated their support so much.
We got 90 minute updates and at different stages of the procedure. The switch was a success and we were going to be able to see him at 5pm, but a little after 5pm the surgeon came to us to let us know that there was a complication and they had to do another surgery right then. The last 3 hours were the longest of the day. The second surgery was to remove some trapped fluid behind Tyler's heart that was not draining because of a clot. After this surgery, the doctors were not able to close up his chest bone because they did not want to stress his heart since there was so much swelling. The chest bone is left open about 50% of the time with this surgery, so it is not uncommon, but it is hard to hear because this adds more time to the recovery process. (I am learning way more about the anatomy than I really wanted to learn...at least this way.)
We were able to see him at 9pm and he had 14 different iv medications (yikes). He is very puffy and green. The green is the antibacterial wash they put on his skin before the surgery. Julie was not prepared to see a green baby with blood coming out of his tubes so this was difficult. The first thing that we noticed on the monitors was his blood oxygen levels that had been reading between 60 and 80 were now reading 91-93! That was our first indication that the switch was doing what it was supposed to do. The small line between the Aorta and the Pulmonary Vessel was closed and the medication to keep the hole open was stoped. Every thing is working the way it should! He is resting under anesthesia and will remain this way until a few days after the next surgery sometime this week. With all that he is going through it is a good thing he won't remember any of this.
In a few days we should see his swelling go down and that will allow the chest to be closed back up in a much shorter operation. After this, we are on the road to recovery and the medication and sedation can start to be reduced. One day at a time. Thank you all again for all the support and prayers.
We got 90 minute updates and at different stages of the procedure. The switch was a success and we were going to be able to see him at 5pm, but a little after 5pm the surgeon came to us to let us know that there was a complication and they had to do another surgery right then. The last 3 hours were the longest of the day. The second surgery was to remove some trapped fluid behind Tyler's heart that was not draining because of a clot. After this surgery, the doctors were not able to close up his chest bone because they did not want to stress his heart since there was so much swelling. The chest bone is left open about 50% of the time with this surgery, so it is not uncommon, but it is hard to hear because this adds more time to the recovery process. (I am learning way more about the anatomy than I really wanted to learn...at least this way.)
We were able to see him at 9pm and he had 14 different iv medications (yikes). He is very puffy and green. The green is the antibacterial wash they put on his skin before the surgery. Julie was not prepared to see a green baby with blood coming out of his tubes so this was difficult. The first thing that we noticed on the monitors was his blood oxygen levels that had been reading between 60 and 80 were now reading 91-93! That was our first indication that the switch was doing what it was supposed to do. The small line between the Aorta and the Pulmonary Vessel was closed and the medication to keep the hole open was stoped. Every thing is working the way it should! He is resting under anesthesia and will remain this way until a few days after the next surgery sometime this week. With all that he is going through it is a good thing he won't remember any of this.
In a few days we should see his swelling go down and that will allow the chest to be closed back up in a much shorter operation. After this, we are on the road to recovery and the medication and sedation can start to be reduced. One day at a time. Thank you all again for all the support and prayers.
Early in the waiting process
"Christmas Tree" of IV's
Friday, May 25, 2012
Riley Day 7 Surgery Day: Pre
It is the day of surgery. We got in to see Tyler around 6 am and got to spend an hour with him before we had to start prepping him for surgery. We were able to get lots of cuddles. He is one week old today. It is hard to put him into the transport isolette and wheel down to surgery. They took him back at 7:40am.
Pray that the surgery goes well and that the Doctor and his team are well rested for the procedure.
Pray that the surgery goes well and that the Doctor and his team are well rested for the procedure.
(Missed this one earlier)
Riley Day 6
Thursday...Day before the surgery. Tyler is starting to have his vital signs degrade a bit but the doctors said that this is to be expected with his condition. We got lots of holding time in and he was able to nurse really well. At midnight he will have his IV nutrients inceased and feedings will be stopped to prep for surgery. The last few hours of the night were hard but we knew that we could get there early the next morning to see him before the surgery. Anne Mundrick came to see us in the afternoon and wished us well before the surgery.
Riley Day 5
Wednesday...The wait continues but we have been gradually given more and more info on what is to be expected with the surgery. Tyler is doing really well as his vitals are staying steady. He is learing how to nurse...hit or miss but over all the dotors are pleased as this will aid in a faster recovery.
Here are a few of the faces of Tyler. Startin' to see the personality or it could be just the prostaglandin(PGE) makin him grumpy.
Here are a few of the faces of Tyler. Startin' to see the personality or it could be just the prostaglandin(PGE) makin him grumpy.
His Eyes
The tounge
The Yawn
Not Happy
The thinker
The Mom Cuddle
Riley Day 4
Thanks to all our friends and their support. We have had countless calls, texts, and e-mails sending many many prayers and thoughts up for Tyler and us. Today we are playing the waiting game as the surgery is scheduled for Friday morning. Tyler is on track to grow strong and develop some muscle memory for nursing and gaining some strength for recovery. The doctors are continuing to be positive in his outcome which is encouraging. We are learning more and more each day about his condition, the procedure (an Arterial Switch), and the recovery period.
Riley Day 3
Day three is a Monday and it was a wirlwind of information as all the hospital staff was in so we got to talk to the social worker, the financial advisor, the admissions people, and lots more doctors. We met Dr. Cordes who worked with Dr. Hoyer to establish the plan for Tyler. He was able to explain a lot of details of what the condition that Tyler has and what a lot of what the procedure would entail.
Connor is doing well with his Grandma Pfleeger back home. He is sending us updates. Here is one of him performing surgery on his animals. They are all fixed now. (Thanks Grandma.) Future Cardiologist...?
Connor is doing well with his Grandma Pfleeger back home. He is sending us updates. Here is one of him performing surgery on his animals. They are all fixed now. (Thanks Grandma.) Future Cardiologist...?
Riley Day 2
Tyler is stable at Riley Hospital. The doctors still have not given us much information on all the details but we don't really know any details of what is to come in the next few days/ weeks?...
Julie arrived after long ride from Granger. Julie was very happy to get to Riley to see her baby. Grandpa Pfleeger brought her down to Indianapolis.
Julie arrived after long ride from Granger. Julie was very happy to get to Riley to see her baby. Grandpa Pfleeger brought her down to Indianapolis.
Tuesday, May 22, 2012
Day 1.5
Tyler took the first helicopter ride of our family of four and he was only 12 hours old! ...cross that off the bucket list. (I am jealous and I know Connor is too.) He arrived in Indy an hour later where he ran another echo cardiogram with the cardiologist at Riley Children's Hospital. After the reports came back Saturday morning John drove to Indy where he was able to connect up with Kieth and Anne Mundrick who so graciously opened up their home. John also was able to connect with the Ronald McDonald house where he secured a room so that Julie would have easier access after her C-Section. This was such a blessing because when we first called they told us that there was s page waiting list. We were able to get in the same day! The house is just down the street from the hospital and there is a shuttle service that takes us back and forth every day.
G & G Holmes stayed with John for the weekend and got to spend a few moments with Tyler as the doctors were evaluating when the right time to perform the open heart surgery should be. Julie had to stay in the hospital in Mishawaka until Sunday because she had had surgery. Being away from both of her babies when they were born has been very difficult!
G & G Holmes stayed with John for the weekend and got to spend a few moments with Tyler as the doctors were evaluating when the right time to perform the open heart surgery should be. Julie had to stay in the hospital in Mishawaka until Sunday because she had had surgery. Being away from both of her babies when they were born has been very difficult!
Monday, May 21, 2012
Day 1
Tyler, after being diagnosed with a heart defect was whisked away from Mishawaka, IN by helicopter to Riley Hospital in Indianapolis- the #1 hospital for baby hearts in the country. It took several hours for the LifeLine team to prepare Tyler for his flight. They had to place several lines, monitors, ivs and a ventilator before he was able to fly. Julie and I watched from outside his NICU room as this was happening. We watched the helicopter finally take flight at midnight for the one hour trip to Riley. We barely slept that night waiting for the call that he had arrived safely. The call did not come until 3am! They called after they had run a few tests that confirmed his condition was inded Transposition of the Great Arteries. We were finally able to sleep for an hour before the nurses came in to wake Julie up for some blood draws! We waited Saturday to hear from the cardiologist to find out more about Tyler's condition. At this point, we really didn't fully understand everything that was going on. After we found out he was stable, John drove to Indy to meet Grandma and Grandpa Holmes to be with Tyler. Grandma and Grandpa Pfleeger and Connor stayed to help Julie rest and be released from St. Joseph Hospital in Mishawaka.
Connor wanted so badly to meet his new baby brother but was satisfied for a time that he knew Dad was taking care of him and that he had his Grandma to stay with him. (Garage sales were at the top of his list of things to do...)
Connor and John at the hospital with Mom.
Connor wanted so badly to meet his new baby brother but was satisfied for a time that he knew Dad was taking care of him and that he had his Grandma to stay with him. (Garage sales were at the top of his list of things to do...)
Connor and John at the hospital with Mom.
The Adventure Begins
The delivery and birth went well and Julie felt really good to have a smooth time with her c-section. It was a really happy birth and the room was so calm. We got to watch Tyler get checked out and cleaned up all right there in the operating room. John got to cut the cord and Tyler looked perfect. Before we even left the OR, Tyler was placed on Julie's chest and wheeled right into recovery with us. He never left us! So different than our scary experience with Connor's birth. We stayed in recovery for a few hours and then headed down to our room with Tyler. Julie got to feed him right away and he did great. It was so fun to cuddle with our newborn. Having a healthy big baby was so much fun! Julie was tired, so we put him in the crib so she could get a quick nap.
We were blessed to have Nurse Kay care for us and Tyler. She came in and let us know that it was time to wake Tyler and feed him again since it had been several hours since he last ate. He was not very responsive to feeding, so we tried unwrapping him and that is when she noticed some color changes in his hands and feet. She thought that maybe he was just cold, but wanted to take him to the nursery for a quick look. At this point, Connor and grandma and grandpa Pfleeger were on their way to the hospital to meet Tyler. We did not really expect anything to be wrong. Only about thirty minutes later, a team of doctors and nurses entered the room with the devastating news that our baby has a heart problem. The helicopter was on the way to take him down to Riley Hospital in Indianapolis. After a few tests and an echo cardiogram of his heart the NICU Doctor determined that Tyler had a Transposition of the Great Arteries. This is basically where the Aorta and the Pulmonary Veins are switched preventing fresh, Oxygenated blood from Circulating to the body. See photos below for an illustration. Connor was in the room when we got this very upsetting news and we were very confused and upset. He looked perfect and we had no indications that anything could have been wrong. The good news is that this condition is repairable with an open heart surgery within the first week of life.
Tyler's Heart:
Normal Heart
We were blessed to have Nurse Kay care for us and Tyler. She came in and let us know that it was time to wake Tyler and feed him again since it had been several hours since he last ate. He was not very responsive to feeding, so we tried unwrapping him and that is when she noticed some color changes in his hands and feet. She thought that maybe he was just cold, but wanted to take him to the nursery for a quick look. At this point, Connor and grandma and grandpa Pfleeger were on their way to the hospital to meet Tyler. We did not really expect anything to be wrong. Only about thirty minutes later, a team of doctors and nurses entered the room with the devastating news that our baby has a heart problem. The helicopter was on the way to take him down to Riley Hospital in Indianapolis. After a few tests and an echo cardiogram of his heart the NICU Doctor determined that Tyler had a Transposition of the Great Arteries. This is basically where the Aorta and the Pulmonary Veins are switched preventing fresh, Oxygenated blood from Circulating to the body. See photos below for an illustration. Connor was in the room when we got this very upsetting news and we were very confused and upset. He looked perfect and we had no indications that anything could have been wrong. The good news is that this condition is repairable with an open heart surgery within the first week of life.
Tyler's Heart:
Normal Heart
Welcome to the World Tyler
Welcome to the world
Tyler William Holmes
7lb 9oz 20.5 in 11:07 AM 5/18/2012
Saturday, May 12, 2012
Sunday, May 6, 2012
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