As I am writing this blog, I am wondering where to begin. So much has transpired over the last several weeks. Our son, Ronald Diltz III, had his cleft lip repair surgery May 13, 2019. But before I talk about surgery day, let's talk about pre-operation.
Prior to surgery, our doctor scheduled a pre-op appointment so we can get familiar with what would happen surgery day and also for special instructions on how to get our son ready. When we entered the office, the nurse wanted to weigh RD3 and do a length check. RD3 came in at 15 lbs and 10 ounces. I marveled at this number since I remember the doctor wanting him to be at least 10 lbs for the operation. Our little guy crushed it. He also came in at 25 inches long. We gave God the Praise because look at our son with a deep cleft still gaining weight and eating so well. Wow! Just wow! God is amazing! We were then greeted by a medical fellow who went into detail on what to expect.
Let's just day the medical fellow broke everything down. Our son would need three and possibly four procedures. His first procedure was his cleft lip repair, the second will be for his nasal encephalocele, the third will be for his cleft palate, and his fourth would be a bone graft. The fourth procedure came as a shock to me since I didn't know there would possibly be an additional procedure. Everything that was said after that was a blur as I thought to myself, "Another procedure?". This fourth procedure would not be until our son is eight years old and would only be necessary depending on the development of his jawline. I barely heard the fellow mention to bathe our son with Dial soap the night before surgery. We could not give formula 6 hours prior to his procedure and breast milk 4 hours prior. We could give Pedialyte up to 2 hours prior to procedure. The fellow was very nice in explaining everything, I was just trying to take everything in. I looked over at my husband and he was nodding away as well. Surgery day we were to arrive at 5:30am at Arnold Palmer Hospital for Children. Once there we would be told where to go and how to proceed. We were given a heads up that the surgery would not be long, but it would be a length of time we would be away from our son due to surgery prep, surgery, and then waiting for him to wake up in the recovery room. Once the fellow left, we were to wait on our doctor, Dr. Ruiz, and medical team to come in. As soon as the door closed, I broke down. Ron tried to hold me and hold RD3 at the same time. "Everything is going to be ok love" Ron said. I nodded. I knew that. I just wanted to be strong for the journey ahead for our baby. It just felt like soooooo much. I just wish I could take his place. I know God chose him for this journey, and us to be his guides/parents along the way. I'm human, and now a mother, so it can be a bit much to take in at times.
When the fellow came back in with the team and Dr. Ruiz, they saw my tears.
"It's not surgery day yet" Dr. Ruiz said jokingly.
I laughed and said "I'm sorry, I can't help these tears."
I looked over at the fellow and let her know that she did not make me cry. It was just all of the information. Dr. Ruiz let us know the specifics of the surgery, how he would bring in both sides of the lips and connect the nose as well. RD3 was so excited to see Dr. Ruiz. He was talking to him the entire time.
SIDE NOTE: One thing I will say is that our son always has a smile on his face, NO MATTER WHAT. If he only really knew, or maybe he does know, what he is going through. His smile keeps us smiling. We live for that smile to always be there.
After getting reassured by Dr. Ruiz and the craniofacial team, we headed home to prepare for surgery. The night before I gave RD3 formula and saved a good portion of my breast milk so that I could have 6 ounces for him at 2 am that morning. After eating, RD3 went back to sleep but was up again ready for us to take him to the hospital. He was smiling away. Before heading to the hospital, we prayed as a family and asked God to cover the surgeons, the procedure, the team, our travel, and us while we were there.
The Day went like this:
4:30 am : Left house
5:06 am: Arrived at Arnold Palmer Hospital for Children
5:30 am: First family to get checked in to head to the third floor.
6:00 am: Filling out paperwork and taking RD3 to his prep room.
6:50 am: RD3 being taken back by nurses a part of the surgical team
7:00am: Surgery begins
I was expecting our little man to be crying out in hunger prior to heading back for his procedure, but he just kept smiling with all of the family that were here to support him. So thankful for my mother coming to stay with us for a few weeks, and the Diltz family for showing up to see him tackle his first procedure. Right now all we could do was wait. Thank God Arnold Palmer hospital has the EASE app which updates you on the progress of the surgery. Literally by the minute, you are getting updates as to what is going on with your baby. We were notified when RD3 was put to sleep, when he was in the procedure, and when he was done. Soon after that notification, Dr. Ruiz emerged into the waiting area and let us know how the surgery went. He was so pleased with the outcome and said the procedure was a "textbook case". He took his time and took care of our little warrior and gave him he best possible outcome. Dr. Ruiz assured us that we would be pleased once we went back to see him.
SIDE NOTE: Dr. Ruiz, you are a phenomenal doctor. Thank you for always taking the time to assure Ron and I that you would take care of our son. You made us know we were special and we did not feel like a number to you but that you care. We knew our son would be treated gently and his surgery would go well because you would treat him like your own son. We are grateful to you, to Suzy, to Dr. McGraw, and to your craniofacial team. We are thankful God placed us along your path so that our son would have the best possible care.
RD3 woke up several minutes later and a medical assistant led us back to his bed in recovery. Ron and I rushed to see him. When we got to his bed, we could not believe our eyes. "Wow!" we both said. " Look at you D3! You look amazing!" Our son looked so gorgeous before and now he was even more handsome. He looked amazingly different too. I had to look at him several times. RD3 has a new nose, a new smile, and a beautiful new look. It's crazy how attached you get to the cleft smile. No one tells you how much you miss it until it is repaired and gone. I was so grateful for his new complete smile, but I sure missed the cleft smile I grew to love over these four months. We couldn't help but pour our love on him while we were taking him to his room to stay over night.
Now the hard part began. Recovery.
Recovery after the surgery was the hardest hours of our life. We were told that recovery would be challenging for the first few hours or even day or two but we did not know what to expect. Our son was swollen and in pain, so the challenge was to help him learn how to use his new anatomy to feed again. Something like this would be challenging for an adult much less a baby. We got in the room at around 11:30 am and we tried and tried to help our son feed. He tried over and over to get used to his new mouth and how to breathe through his new nose. Writing this brings back the emotions of the day. We were all holding back tears helping him. He tried soooooooo hard!!! It was painful to watch. All he wanted to do was eat, and he couldn't right away. Although he was getting IV fluids, he had to try and get his feeding down. This would be a positive step towards recovery. My mother eventually broke down because she couldn't bear to watch him struggle. Ron and I held it together as much as we could and kept coaching our son to keep trying. We tried breast milk, we tried formula, we tried Pedialyte, we tried Everything. All three of us took turns comforting him. He was getting so upset that he even ripped out his IV causing blood to get all over his hospital gown and my clothes. I knew he had it at that point. We just had to help him. I thought about a way I learned of another nurse feeding a cleft patient when D3 was in NICU and it hit me, help him get the milk down with a syringe. Now why didn't any of the medical staff think of this? or why wasn't this offered even as an option to help him? I was not happy.
By the time we thought of the syringe, our son started feeding on the bottle. What a sigh of relief. God answered our prayers. Crazy because once RD3 started feeding, one of our pastors called us that very moment to check on him. Literally that moment!!! BUT GOD! It was about 6 pm when he took in 6 oz. He was so exhausted that he went right to sleep after. When he woke up again, he could only get 2 ounces down, so I syringed the other 3 ounces down so he could get some more nutrition and strength. For each feed thereafter, he would take some down and I would syringe the rest until he was able to get in the full 5 to 6 ounces on his own. I understand why it was so important to get our son back on the bottle, but helping him along the way with a syringe definitely reduced his stress and our anxiety. Had we done this before there would have likely been less frustration for him. For the cleft moms out there, have a syringe ready to go to help your child get nutrition down in those first few hours of recovery. You don't want to go through hours of a struggle. It's the worst feeling in the world. Let your child try with the bottle for a while and if they cannot get it, it's ok to help them. You do what you have to do for your child. PERIOD.
We only had to spend one night in the hospital thankfully. Needless to say we were ready to go. We knew our son would thrive at home because it's an environment where he is comfortable. Before he left he had taken in about 19 ounces for the day, the very next day he was back to his 37 ounces a day. HE'S BACK. He has made a full recovery so fast and he is healing very nicely. His follow up appointment is tomorrow and we can't wait to see what Dr. Ruiz says about his healing process.
Thank you to the village of support and to my extended family for your prayers and encouragement on this journey. We overcame the first hurdle and we know we have overcome all of the hurdles to come. God is with us every step of the way and this journey has only made us stronger. RD3 has so much strength and we have learned so much from him. We are truly blessed to be his parents. We cannot thank you enough for your prayers and love.
So many of you have asked how you can contribute financially to our son’s journey. We came up with a T-shirt design and we screen printed it at home ourselves. We would love for you to purchase. The shirt reads “Fearfully and Wonderfully MADE”. All proceeds will go towards RD3’s journey. Just click on the SHOP tab or head here https://www.moniquediltz.com/shop . We cannot thank you enough! More items for the SHOP coming soon!
I hope this helps another mother out there, a cleft family, or anyone who needs strength in a rough time. You are never alone. You have more POWER than you know. God is ALWAYS with you!!! I just want to say to everyone who has dropped an encouraging word, prayer or thought, "Thank you and We love you all".
RD3 says "I love you and I Thank you! Can't wait for you to see my new smile!".
Again, Thank you Dr. Ruiz!! RD3 LOOKS PHENOMENAL!! God has blessed your hands!!! To God Be the Glory!!!