Recovery - The First Days

It was hard at times to even see our Little Warrior's face with all the tubes and tape covering his body as he lay in his bed in the CICU. The doctor's and nurses explained what everything was doing, but it was basically in one ear and out the other. The only things we want to know are 1. How is doing? and 2. When do the tubes start coming out?

The first night after surgery involved intense monitoring to make sure all the machines and medicines were operating at the right level. Owen was still heavily medicated and would remain that way for a little while. There were a few hiccups, both figuratively and literally, during the first night. Owen had hiccups at one point which scared Michelle and me as we watched his little body jolt up. They informed us the hiccups were perfectly normal and not to worry. That was easier said than done. Owen's heart also got out of rhythm over night and they had to use a pacemaker to get it back to the appropriate rhythm.

Owen was out the next day as well. He continued to progress and they were pleased with how he was doing. He had one run in where his blood pressure dropped a little low, but they gave him some medicine and adjusted the temperature of his bed to raise it a little bit. With the big incision on Owen's chest continuing to heal and all the tubes and wires, Owen can't be bundled up and has to lay in the open air. To keep him warm, his bed has a heat lamp over top that they turn on to keep him at a comfortable temperature. The nurses and doctors told us these were all things that happen post heart surgery and there was nothing out of the normal going on.

Things were pretty quiet in our room with Owen sleeping and Michelle and I had to entertain ourselves. We are lucky that our room is equipped with what very well may be the first Zenith tv ever made.

We've read books, watched Netflix, and brought some DVD's in to watch. We were reminded how funny The Office was during the early seasons. We have also taken the opportunity to catch up on sleep. 

On Saturday, they started to ween Owen off some of the drugs and removed the big tubes from his chest that were being used for drainage of excess fluids. He also had his catheter removed and other little things were coming out. Around the middle of the day, Owen started to open his eyes. We were so excited to see them again. He was clearly still out of it, but we could tell that he recognized our voices. Owen also still had some incredible strength and was grabbing and squeezing our fingers when we touched his hands. Owen was continuing to do well and they planned to remove even more stuff on Sunday, including taking him off the Ventilator. Owen was progressing and continues to take the next step.

We have been spoiled with homemade meals from the Murphy's, the Ginocchio's, and Betsy Linz. All the food has been delicious and far more than we would have ever expected. We can't explain how grateful we are to you all for going out of your way to make these meals. 

We also continue to receive wonderful cards and acts of kindness. The Kuehnle family absolutely stunned us with their kindness and generosity. The Tostados Bravados, a world class softball team, came with what I can only assume was an early recruitment pitch for Owen. The Murray's and The Thompson's sent over some delicious bee cookies that were a hit to look at and eat.

We were also completely overwhelmed to find out that two fundraisers had been set up for Owen thanks to The Harnists and Craig Murphy. We truly can't express how much it means to us to have so many people caring and doing these remarkable things to help.

Owen also received a special gift from the Hambleton's. A superhero needs an appropriate outfit, and now Owen has his cape.

Owen continues to progress and was just taken off of the Ventilator Sunday morning. Owen handled it like a champ and it is a big step in the recovery process. The hope is that Owen will be able to have more tubes removed Monday morning and we might be able to hold him again and even start feeding.  Owen is a tough little guy and he is ready to get the tubes out. He continues to fight and it is obvious he can't wait to be held again. The little warrior is living up to his name.

Surgery Day

There was not much sleeping going on the night before Owen's first surgery. He was not allowed to eat anything after 1:30 am, which meant the poor guy went from feeding every 3 hours to not eating anything for 6 hours. The only way to console him was to hold him in our arms. Michelle and I tried to get sleep but holding our little warrior and fighting off the nerves and anxiety controlled the night.

The transport team came to get Owen a little before 7 am. Michelle rode on a bed while holding him down to the OR. It was a somber ride. We passed a number of people who could not hide the emotions on their face of seeing a mother holding a newborn and being wheeled to down to the operation room. We were checked in and began to wait for the team to come get Owen. A little after 7:30, we walked with our little warrior in hand up to the operating room door. This was where we had to let him go. The tears flowed and we kissed our little guy goodbye. This was one of the toughest, most gut wrenching moments of our lives. We handed Owen to the surgical team that we had entrusted with our newborn baby's life.

One of the biggest impacts that Owen has made on our lives, even before he was born, was making Michelle and I closer than ever before. We have leaned on each other to get through these difficult times and we have both had our ups and downs where we have needed to pick each other up. This was definitely one of those moments. We made our way to the OR waiting room to check in. The waiting room was packed and it was incredible to see how many kids were undergoing procedures. We entertained ourselves until we got our first update on how Owen's procedure was going. The nurse updated us at 9:30 that Owen was doing very well and handled the anesthesia perfectly. They had placed most of the lines and tubes and were getting ready to make the incision in about 15 minutes.

We were then informed by the receptionist in the OR that we were going to be given access to a private waiting room due to the length of our procedure. This was quite a relief as the main waiting room was extremely crowded and noisy. As they put it, it was like getting bumped up to first class on an airplane.

The incision was made at 9:45 and the surgery was underway. The plan was to place Owen on the heart and lungs bypass machine, reattach his pulmonary veins, then correct the AV valve, take him off of the bypass machine, and then place the Pulmonary Artery band. This process should take 4-6 hours, but the time could vary.

Our family started showing up around this time to keep us company and show us support. Everyone was extremely supportive and helpful, including Michelle's sister Jen, who sat with us for hours all while being 2 days past her due date and very uncomfortable, and my Mom, who hobbled from knee surgery just two days prior. It is easy to see that Owen gets his fighting spirit from both sides of his family.

Another update came a little after 11:00 am. Owen continued to do great and was successfully on the bypass machine. The nurse said the team was very happy with how things had progressed. She let us know that she would be back with another update around 1:00 pm.

We passed the time until the update at 1:00. The nurse was back in our room and informed us that the vein repair was complete and had gone very well. This was great news. However, she told us that there is concern about the AV valve. The valve is underdeveloped and it was a tricky step to try and correct. There was uncertainty about how well the correction they were making would perform. This was not what we wanted to hear. Michelle and I did not handle this update very well. We were expecting to hear everything went well and he would quickly be on the road to recovery. The nurse let us know that Dr. Morales would talk to us post surgery to give us a better understanding of what was going on.

The surgery was complete a little after 2, which was quicker than we expected. They let us know that Owen did really well coming off the bypass machine and they were able to close him up. All his readings were coming in really well and he was stable. We were relieved by this news but the concern over the valve still weighed heavy on us.

Dr. Morales arrived around 3:30 and gave us a run down of the surgery. Owen was doing excellent and he was pleased with how things went. The vein repair was a little different than what they thought it was, but the repair went beautifully. The PA band was placed and that went well also. He reiterated the concern about the valve. They made a repair to the valve and it looks great at this time, but they are concerned whether it will maintain the correction. If it does not, they will have to go in again and try and repair it. Fortunately, it is not something that would cause immediate danger if it began to leak. It is something that has to be monitored closely to determine its performance. There is a chance that the valve could continue to form as he grows and help the correction or the correction could maintain and he would not need any update. It is really a wait and see type situation. Dr. Morales did say that he felt someone was in there looking out for him with how well the valve looks at this point, so we are hoping the prayers continue to come and help little Owen.

Owen was taken to the CICU and we had to wait for them to assemble everything in his room. There were some delays, not attributed to his health or stability, that prevented us from getting back to see him until around 7pm. We both felt excited to see him and we had an idea what he was going to look like. It was still shocking and brought us to tears. Seeing our little warrior with a huge scar on his chest, tubes everywhere, and looking lifeless, was extremely intense.

All the doctors and nurses told us that he was doing great, but it is so tough to see him like this. We want so badly to hold our little warrior and see his beautiful eyes and smile, but we have to cherish the two weeks that we had and the future moments to come. Please keep him in your prayers for a speedy recovery and the best outcome possible from this surgery. He will no doubt continue to fight on!

Pre Surgery

It's hard to explain the thoughts and emotions that we have experienced waiting for Owen's first heart surgery tomorrow morning. There is anxiety, fear, sadness, as well as a little bit of hope and excitement about what is going to happen and what the future holds.

We spoke with Owen's heart surgeon, Dr. Morales, and he walked us through the procedure and what they were going to accomplish. There have not been any surprises and they are going to add a PA band to restrict blood flow to the lungs, they will connect his pulmonary veins to promote better circulation, and they are going to correct a valve in his ventricle that was a little bigger than it should be.

Owen has been getting lots of loving pre surgery because it will be a little while before we are able to hold him again. We've been so lucky to be able to hold him and play with him these past two weeks and we know that more fun times are ahead.

Owen will be taken down to the OR around 6:30 am Thursday morning and they will begin the sedation process. After that, they will continue to prep and place the tubes and IV's for the procedure. We were told that they will make the first cut around 10. From there, we were told it should probably take 5-6 hours, but could go longer. This will without a doubt be the longest day of our lives. 

We again thank you all for the kind words, cards, gifts, prayers, and support. We had another great homemade meal delivered to us that was made by Holly Jackson and Aunt Carol. We also received a beautiful blanket with Owen's name embroidered on it from the Gloeckler's and some styling outfits and golf clubs from my sister Emily's boss Alison. We cannot wait to get home and enjoy all of these nice things that everyone has done for us.  

Owen has been awake and alert all day today. It is the most awake that he has been. It has almost seemed like he is letting us know that we can calm down and everything will be ok. 

It will be so hard to watch him off tomorrow but we know that he will fight and come out strong. He looked at his mom today and let her know "I got this!". 

Preparing for the First Step

We finally received the news that we had been preparing for. It was time for Owen's first operation. It was bittersweet finally getting the verdict. On one hand, we knew it was coming and it's what needs to be done to correct Owen's little heart. On the other hand, the thought of this sweet little boy under going surgery is hard to comprehend.

Owen slowed his feeding down a little bit after his great day on Wednesday. He started to wear down after drinking for a short period of time. This what the doctor's expected. Based on his oxygen saturation levels and the MRI last week, Owen was getting 2.5x as much blood to his lungs as he should. The slow eating and faster breathing was a sign of heart failure. They explained to us that heart failure doesn't mean his heart itself is failing, but the circulation from his heart was out of balance and he was getting more blood to his lungs and less to his body. 

Owen did not let this alter his attitude. He was still smiling, cuddling, and entertaining his family and nurses. He was showing some of his fighting attitude as well. In an act of defiance, he ripped out his NG tube Thursday night and does not seem to be impressed with it. 

Poor Michelle was up all night worrying about Owen and watching the unpleasant process of the nurses putting the NG tube pack in. She continues to be incredibly strong and brave in caring for her little sweetheart. Sleep was at a premium as Owen was born with Michelle's trait of not wanting to go to bed and stay up all night, so Owen and I decided to give her Friday night off to go home and sleep in our bed. We had a boys night and decided to have a flexing contest to see who had the bigger muscles. It was too close to call.

On Saturday, we were informed that we would be transferred to the step down unit. Owen was very stable and they felt that he would be able to move and not receive as much supervision as he was getting in the CICU. We moved Saturday afternoon and started to settle in. They let us know that they still weren't sure of the next step, but it was almost assured that Owen would need the first surgery sooner rather than later. 

Our goal is to get Owen home as soon as possible, so the open answers we were getting on the timeline made things a little more difficult. We understood that they wanted to do what was best for Owen, but we selfishly wanted to get out of the hospital and get home. Living in a hospital is about as fun as it sounds. 

We were informed that we would be able to bring in some of Owen's toys and some clothes if we wanted to. We were excited to do this because we want Owen to have the same experiences as a normal kid. He has loved wearing his outfits and his favorite toy has been the momaroo. He loves sitting in their and it seems to do the trick of putting him to sleep (which makes it our favorite toy). 

We continue to receive incredible and unexpected acts of kindness and support. We would be remiss not to mention our families again. They have been frequent visitors and have gone above and beyond to support us in this difficult time. We are so lucky to have two families that care so much and have everyone right here with us. We continued to be blessed by the kindness of so many people. We received an unbelievable gift basket from Ali Stigler, more meal cards from the Kilduff family, some toys and clothes from the Jutte's, and Owen's first Xavier outfit from his Great aunt and uncle and cousins. We also had a delicious meal from the Hambleton family that offered a much needed break from hospital food and carryout. I would also like to thank again everyone who contributed to the care packages we received. They have made thins so much easier. We have toiletries, pillows, blankets, snacks, books, and games that we can keep in our room at the hospital. Thank you to everyone who participated. It was a long list of people and we so greatly appreciate what each and every one of you have done for us. 

We were informed late on Monday that it had been decided that Owen would have his first surgery on Thursday, July 24 at 7:30 am. He was going to have PA band surgery and pulmonary vein repair. The band will restrict the blood flow to his lungs and should allow him to breath easier and eat better. The vein repair will improve his circulation. It is so difficult to look at this little guy and know what he has ahead of him. 

It makes things easier knowing that he is in great hands. Dr. Morales is as good as it gets in performing these operations and we know that he will take care of our little warrior and make him better than ever. Please keep the surgeons, doctors, and nurses in your thoughts and prayers along with us and out little warrior. We will need to summon all the strength we have over these next couple of days to support Owen. Owen will be a true warrior and he let's us know that he isn't scared. 

The Roller Coaster

We knew this would not be easy, but everything has been going better than expected. One of the toughest things to manage has been looking at this adorable baby, who shows no outside appearance of being anything but healthy, and knowing all the issues going on inside.

We got to enjoy a very successful and productive weekend with our little warrior. His lipids and other IV's were removed and we attempted feeding him for the first time. The most important thing for him right now is to eat and grow. Owen responded and took to the bottle pretty quickly. We were very pleased and impressed. We started out with a small amount and increased it as he improved and grew hungrier.

This was a big step for Owen because he needed to show he could eat on his own or they would have to put an NG (Nasal Gastric) tube in so he could get all his calories. Obviously, we wanted to avoid that, so we were pretty proud of quickly he took to it. 

Owen got some more loving from his visitors over the weekend. There is no doubt that Owen has a ton of unbelievable people who care about him. 

Because we are a little obsessed, we can't get over every little things he does. We have already taken hundreds of pictures of every movement and sleep position. 

We knew that the week ahead would bring more answers, and we would be lying if that wasn't a little scary, but we put those thoughts to the side and just enjoyed being a family of three. 

Monday brought the news that Owen was going to have his feedings increased from an ounce to and ounce and a half. He had to get more calories, and this obviously meant that the NG tube that had been postponed a few days prior, was back on the table. He had not eaten that well in the morning, so they allowed him two more feeds to see if he could bounce back and handle the larger amount. He tried his hardest, but an ounce seemed to be the magic number for him. He would wear himself out working for the ounce and would be completely exhausted at that point. It was pretty clear the way things were trending. 

It was tough finally seeing an obstacle that Owen was struggling with. The NG tube would be for the best, but we didn't want him to be uncomfortable with a tube taped to his face and going through his nose into his stomach. It was a little emotional at first, but we had at to get it together and know that it was going to make him stronger.

He was now going to get his full feedings. It was a little annoying for him, but after a little while he got used to it. He still seems to find it and grab it, but he doesn't seem too uncomfortable. 

On Friday when we were told about his surgery scheduled for Wednesday, they told us that Dr. Morales would be around to talk to us on Monday. After talking to a few of the cardiologists, it sounded like they had jumped the gun with telling us about the surgery being scheduled. The big conference was on Tuesday with all the doctors and they would come to a consensus on how to proceed. We did not end up meeting with Dr. Morales, which made us feel like the surgery was probably not going to happen. The meeting on Tuesday would tell us for sure. 

We heard from the doctors later in the morning on Tuesday. There was not going to be a surgery on Wednesday. Owen's complicated little heart was doing ok and there was no need to rush into a surgery. They wanted to gather more information before deciding. They want to see if they could hold off on surgery for 3-4 months, which would be the Glenn Procedure and then he would likely need only one more surgery after that, the Fontan Procedure at 3-4 years old. The determining factor is whether or not he is getting too much blood flow into his lungs. If there is, they will need to do a surgery in his week 2-4 of life. This would be to put a band on his vein that takes blood to his lungs. They would also repair his TAPVR at that time. He would then need the Glenn and Fontan after that at 3-4 months and 3-4 year, respectively. 

The doctors confirmed that they could not locate a spleen, though they may still run a test to see if he has polysplenia, which is the presence of multiple little spleens that could be functioning. He is currently taking Amoxicillin to help prevent infections that he would be an elevated risk of getting. They still had not seen the pancreas and gall bladder, but they felt based on his body functions that they were in there somewhere. They didn't feel the need to go on a goose chase to locate them because all signs point to them being present. It did not sound like there would need to be any other corrective actions to his organs. They were functioning, and even though some are out of the normal place, they would work just fine. 

We were relieved that we wouldn't have surgery the next day. We know the day is coming, but we want to delay it as long as possible. Owen was scheduled for an MRI on Wednesday to get a better view of his veins and to get more information on the blood flow to his lungs. This would be another piece to the puzzle and they also would monitor his behavior for the rest of the week. They did tell us that one sign that he has too much blood flow to his lungs is how tired he gets after eating the one ounce. 

Michelle's friend Colleen, made a wonderful print for Owen that Michelle opened on Tuesday night. The uplifting things that people have done continue to be amazing. This will look wonderful in Owen's room. 

It will look really great with this drawing that was done by the brother of a friend, Kelly Brown, who did his own adaptation of Owen with a bee on his nose. 

Wednesday came and I went back to work. It was extremely difficult leaving Owen and Michelle alone. Of course, Michelle handled it like a champ. We are working on getting her to sleep a little more between everything going on, but she is stubborn as a mule and refuses to put Owen in his crib and taking a nap for herself. She definitely has the motherly instinct. 

Owen had his MRI at 10 in the morning and handled it with ease. The kid is already so brave and been through so much. When Owen came back, I started getting some updates and pictures. At Owen's first feeding after the MRI, he drank an ounce and a half (45 ml's) all by himself! No feeding tube! I could feel the happiness through my phone. I had tears in my eyes. What a warrior. He wants to get the feeding tube out as soon as possible and avoid that first surgery. He hadn't eaten in awhile, so we tried not to get ahead of ourselves, but every little bit of progress is special. Here is Owen after crushing the bottle on his own. 

The next feeding would tell us a little more, but at least we knew he had the strength to do it. Michelle let me know that they wanted to up him to 50 ml's. They are really testing the little warrior. He responded by downing the whole thing again. I was at the hospital for the next feeding and he did 50 ml's again. He is a badass. Here he is showing off after his third full feeding. 

He had an absolutely wonderful day. He even helped the nurse listen to his heart beat.

Thank you again to everyone that has shown support. It has truly been overwhelming. We had a great homemade dinner from Michelle's Aunt Lori and Uncle Charlie that really hit the spot Tuesday night. We could probably open a convenience store in Owen's room with all the snacks we have received. I can't thank you all enough for all the support. 

I will try and update when we get a better idea of the next step whether it be a surgery in the next couple of weeks or to keep trying to get him big and strong for his Glenn in a couple of months. Please keep Owen in your prayers and know that he will continue to fight like a little warrior. 

The First Days

Perspective is a funny thing.  When we found out we were having our first child, we assumed we would be with him, hold him, take him home a few days after he was born, etc. Things changed and we had 4 months to come to grips that we wouldn't have those ordinary things, at least not in the same way we thought we would. We prepared ourselves and had accepted that things would be different, but when we did get to experience those things we had taken for granted, they would be extra special.

Day 1 - Wednesday, July 9

14 hours after giving birth, Michelle was given a pass to go visit Owen. She seemed ok, but I don't think there was anyone at UC brave enough to tell her no. She was going to see her son and there wasn't much anyone was going to do about it. We were allowed to be away for 4 hours, then had to return for a brief check up, and then could go back for another 4 hours.

We were told in our meetings leading up to Owen's birth that we wouldn't be able to hold Owen for a little while, but could touch him and be close to him so he knew his parents were there. We found little Owen's room and were overjoyed to see him laying there. 

He had a couple IV's and some monitors attached to him, but he looked so precious laying there. We met the nurse taking care of him and within 2 minutes she asked if we wanted to hold him. We looked at her like she was crazy. We questioned her like she didn't know what she was talking about and she assured us that it was ok. We could not believe it. Owen was out of his bed almost as soon as she finished her sentence. 

It was such a special moment. We were so lucky. Given all the worst case scenarios that we were prepared for, this felt like a miracle. 

We got some updates from the nurses and staff that Owen was doing really well. They had run an echo to look at his heart and confirmed the defects that they saw in the womb, as well as some MRI's too look at some other areas. Owen has Dextrocardia, DORV, an AV canal defect, and TAPVR. In English this means that his heart is flipped and pointing to the right, there are 2 outlets from his right ventricle, there is a hole between his right and left ventricle, and the pulmonary veins were forming an abnormal connection above his heart. All those things sound horrible, and it definitely isn't a good thing, but for the time being his heart was working well. The team still needed to view everything before we really knew anything about a plan, but his lungs were functioning really well, he had good circulation, and he was steady. The doctors also noted that they weren't able to locate his spleen, gall bladder, or pancreas, but they also noted that those can sometimes be hard to find unless they run a specific test for them. That wasn't a big concern at this point and the main focus is on the heart.  

The other thing that the doctors and nurses were waiting for was for Owen to take his first poop. There was, and still is, some concern about how his intestines were functioning and with his heterotaxy, there is a likelihood of malrotation. Malrotation is when the intestines turn on themselves and cause a blockage. They weren't concerned yet, but we were hoping for that first dirty diaper soon. 

The other amazing thing we quickly found out, was that we could allow our families to come in and visit and hold him too. Grandma Juju (my mother Judy), who had taken us to Children's, Aunt Jamie, and Aunt EmFagel were all there in the morning to visit and hold little Owen. It was amazing to hold our little warrior again. 

Back at the hospital, Michelle received a surprise bouquet of flowers from a great bunch of girls. The acts of kindness that people have shown us are remarkable. 

When we came back for our afternoon visit, Grandma Lulu (Michelle's mother Mary Lou), both Grandpas, Aunt Jen, Aunt EmFriesinger, and Uncle Tim all took turns visiting and holding Owen. We could not have been happier to hold him and share him with our family. It was truly a blessing. 

An hour or so into our afternoon visit, the nurse came in to change Owen's diaper and he had a poop! Then we found that it was actually his third since we had left from our morning visit. We never thought we would be so happy see to a poopy diaper. 

It was an amazing 1st day with Owen. Our time came to a close as Michelle was due back at the hospital, but she was one happy mama to be able to hold her little boy. 

Unfortunately, Michelle was not able to be released from the hospital until the next day. Being away all day meant that we weren't able to take care of all the logistics, but they said we would be able to leave early in the morning. 

Day 2 - Thursday, July 10

We were up early on Thursday and itching to get out of the Hospital for good and head back to Children's to see our little warrior.  It didn't go as quickly as we had hoped, but were on our way to see Owen around 11 am. We were so excited to see him again. We picked him out of his bed to hold him immediately. He loves being held and especially to cuddle. He started to grasp our fingers when we were holding him. 

They told us that Owen would need a PICC line inserted later that day. When IV's are put into newborns, they are usually in temporary spots that only last a little while. The PICC line would be inserted into a central vein and they would be able to hook up his feeding IV's and use it to draw blood for his labs. They wanted to start him on breast milk, but postponed that because he needed an empty stomach in case he needed to be sedated during the PICC process. He was being fed via IV with sugar water and lipids. 

They took him away in the afternoon for the PICC procedure which lasted about an hour. They brought him back and said he did wonderful. He was awake as well and it was the first time we saw his eyes since the night he was born. 

We had some more visitors and held Owen for the rest of the evening. 

Michelle started to fade a little bit around 8 due to the fact that she had a baby and hadn't really rested. The woman is an absolute warrior and shows more strength and courage than I can even imagine. I am so proud to have her as my wife. She is a hero to Owen and a hero to me. She had not been home since we left on Monday and was in need of a nice shower and some time in a comfortable bed. We let our little warrior get some alone time and went to take care of mama. 

It is extremely hard leaving your son who is a couple days old alone in a hospital, but the people and staff at Cincinnati Children's Hospital are truly amazing. Owen could not be in better hands and we couldn't be more lucky to have them in our backyard. His nurses show so much care for not only their little patients but also the families. It is an absolutely amazing place. I would never wish anyone to have to experience being at Children's hospital, but if that was necessary, I can't imagine there is a better place to be. 

We finally got home and Michelle received an incredibly uplifting surprise. Her two amazing friends, Cara Bolger and Christy Allgeyer, organized a care package (Which is a HUGE understatement) for Michelle and me. They contacted friends and family and raised money to purchase us food, toiletries, books, magazines, blankets and pillows that we could take with us to the hospital for our stay. Everyone who contributed also sent beautiful cards with supportive notes and caring words. They also got Michelle a gift card for some time to be pampered and a bunch of meal cards for use at Children's so we could eat without leaving. It was an unbelievable act of kindness and friendship. Everyone who contributed is amazing. Thank you all so very much. You have no idea what that meant to us.

Day 3 - Friday, July 11th

We were up and ready to go bright and early. It felt great to sleep and shower back at home, but we knew where we wanted to be. We are so lucky to live 5 minutes from Children's. It is a luxury that most families at Children's do not have. We arrived a little before 8 and got right back into holding our little warrior. We had a nice quiet morning to hang out with Owen. He was cuddling in our arms and grasping our fingers. We can already tell that Owen has a great sense of humor because after worrying about his bowel movements the previous days, he started tooting up storm and even flashed some half smiles while doing it. 

We used our meal cards for the first time for lunch (we also received some meal cards from a friend of my sister and ours as a surprise in our room. Thank you Ginny!). The food was pretty good and made things so much easier for us. It is a wonderful program that Children's offers.

We received our first reality check since Owen came along when a nurse from surgery came up in the afternoon and told us that Owen had been scheduled for his first operation on Wednesday, July 16th. It was the first we had heard about it and it caught us a little off guard. We were having such a wonderful time with Owen and he is so beautiful and normal looking, that is was easy to forget about what is going on inside. We know that it needs to be done, but it still hit us like a punch to the gut to hear it as a reality. 

We spoke with some of the doctors and staff in our unit to get a little more information about the surgery and the schedule. We will be meeting with Dr. Morales, the chief heart surgeon on Monday to discuss our little warrior. We have met him once before and we know that he is one of the best. We are extremely confident that he is in the best hands with Dr. Morales.

On Tuesday, there will be a huge conference with all the doctors, surgeons, and staff to discuss Owen and come to a consensus on the plan for him. We were told there will be 40-50 doctors there just to talk about our little warrior. They will present all the information that they have gathered on Owen and decide the best path for him going forward. After that meeting, they will inform us what they feel is the best plan for Owen and will confirm if he needs the operation as soon as Wednesday. 

We were once again so lucky to have such a wonderful family to come visit us at the hospital. It makes that days so much better having the support and love that they provide.

We should have a lot more answers at the beginning of next week and we look forward to having a plan for Owen. However, in the mean time, we are going to live in the moment and enjoy our first weekend rocking, cuddling, holding, and kissing our sweet little warrior.