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.
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