Our son Ronald Diltz III (RD3) was scheduled for palate surgery February 10, 2020. My husband and I had the date scheduled since early November. We anticipated surgery and recovery being much easier than his lip repair. However, we were wrong. Writing this two full weeks after the surgery and entering into the third week of recovery, I understand why my husband and I were not informed on how surgery and recovery could be. I am primarily writing this so other mothers can know what to expect when your little angel has to have palate surgery. Thankfully, by God's grace, our son pulled through and is now sleeping through the night. It took two weeks for that full night's sleep, but he made it. We are thankful to God for giving RD3 strength and courage to push through, and for giving us strength to help him get through his recovery as comforting as possible.
Pre-operation appointment was January 28th and went as usual. RD3 was weighed and measured. He weighed 24.9 pounds and after measurements we waited in the patient room for Dr. Ruiz and his team. Once there, our favorite nurse Suzanne came in and greeted us along with Dr. Ruiz and team. We were briefed on the surgery, how he would be the second patient for the day, and how the routine procedure would go. We were also told RD3 would be able to have liquids and stage 1 to 2 baby foods after the procedure for the first week. After being in the recovery room for an hour to a couple hours, we were to try him with different food options. We could try yogurt, applesauce, anything pureed, smoothies, etc. We were also told he could not have anything to eat after midnight prior to surgery except for clear fluids up until 6 hours before the procedure. However, they preferred if he did not have anything in his stomach prior to the operation. We were also told that we should not be in the hospital for more than one night. I was happy about that as I know our son, RD3, thrives so much better when he is home. After being given instructions, it seemed like a routine procedure, get him in and get him home for recovery. That was the appointment.
RD3's surgery ended up costing $2,000 in out of pocket expenses. The insurance picked up the rest of the cost which was several thousand dollars. We found out about the cost the Friday before his surgery scheduled for Monday. Despite finding out right before, we were thankful as we know medical costs can be so much more. My husband and I were prepared to stay overnight and made sure we packed a suitcase for us and a bag for RD3. We filled his bag with toys and books we knew he would enjoy. We also brought his favorite blanket. I am so glad we brought the blanket, as it made him more comfortable in the hospital.
Prior to surgery I made the conscious choice to eliminate dairy and meat from RD3's diet for at least 30 days. I only gave him almond milk and non dairy yogurt, such as coconut yogurt and others. I also gave him almond milk chocolate pudding, which he loved. I also made sure to pump up his diet with plenty of fruits, vegetables, nuts and grains (blended smoothly). At 13 months, I wanted him to be as strong as he could be for this major procedure. The almond milk was fortified with bananas, carrots, beets, nuts (a mix of one brazil nut, cashews, almonds, walnuts), dates, granola, peanut butter and/or coconut oil. I would just use whatever ingredients I thought would give him strength during recovery. I packed 5 full bottles of almond milk smoothies, coconut yogurt, and almond milk chocolate pudding in a cooler for RD3 to have after surgery. I am still keeping RD3's diet dairy free and meat free for at least another 30 days after surgery. Let's face it, dairy and animal products cause inflammation. I didn't want anything else besides the surgery contributing to RD3's inflammation, so that's why I made this choice and I'm glad I did.
We were scheduled to arrive Monday morning February 10th, 2020 at 8 am. We were sent to the pre-operation room where we changed RD3 into a hospital gown as we waited. He was in good spirits and was very happy playing with us and his toys. After all the doctors came by, the necessary papers signed, RD3 was taken to the operating room and his surgery started at 10:43 am. His surgery ended about 1:10 PM and he was in the recovery room thereafter. Dr. Ruiz came out to speak with my husband Ronald (Ron) and me.
Dr. Ruiz explained that the surgery usually takes about an hour and a half but it took longer for our son because his cleft was about 20 mm wide. RD3 ended up needing more than 50 stitches to repair his palate. Dr. Ruiz calmly told us that RD3 only lost about a teaspoon of blood and did very well during surgery. He told us there would be some swelling and secretions but not to be alarmed. He was happy with how everything looked and told us we could head to the recovery room as soon as RD3 started waking up.
Ron and I were just ready to see our son and comfort him. We were called back a few minutes later. We rushed down the hallway with the nurse that led us to his bed as they were moving him to his room on the floor. As soon as I saw him, I held back tears. His lips were very swollen and there was blood coming from his mouth and he lay on his side. All I wanted to do was pick him up right then but I couldn't since they were transporting him to his floor in the hospital. We took the elevator ride to the second floor and we were led into a large room. After his bed was locked into place, Ron and I were at his bedside. RD3 was still in and out because of the anesthesia. I just rubbed his head gently. My husband covered him with the blanket we brought with us from home. He was hooked up to the monitors that would monitor his heart rate, respiratory rate, pulse, and blood pressure. Soon after we arrived in the room, a team of nurses came by to introduce themselves and explain the recovery process.
We were told the swelling will go down, the secretions from his mouth were normal as the palate is healing, the secretions will go from bright blood red to clear over time, try to feed him something as soon as he wakes up, give him a variety if he refuses anything, keep trying to feed him every 15 to 20 minutes if he refuses, he will have trouble sleeping as his anatomy in his mouth has changed, he will also have more secretions in his sinuses as his anatomy has changed, and because of that he will have trouble breathing at nights when going to sleep. The staff didn't seem to concerned about placing the arm restraints on him and said we could leave them off as long as he didn't put his fingers in his mouth (To our surprise, RD3 did not put his fingers anywhere near his mouth during the entire recovery.)
Once he woke up, RD3 looked around and did not recognize the hospital room. He saw Ron and I there and then started to cry. I can only imagine what he was going through. The thoughts in his mind as he woke up one way earlier that morning, went to sleep, and woke up with an entire new anatomy in the mouth. I asked God to comfort him, to help us to comfort him, and to explain to him in his own way what happened and why it had to be done. RD3 fell into my arms and did not want to leave. He would not go to anyone else and I just wanted to give him all the love and comfort I could give. Once we were able to calm him down (we sang to him, we prayed over him, we turned to his favorite LITTLE BABY BUM shows). I tried to get some nutrition in him. We were only supposed to use the approved SIPPY CUPS and I poured some of the smoothie I made at home in there. RD3 tried to take some down. The approved SIPPY CUPS had no valve so that the liquid would just pour and he didn't have to suck. I poured in some smoothie little by little. He took it in as much as he could trying to understand his new mouth. He got frustrated after a while and I helped him get more down with a syringe I brought with me from home. With the nutrition, we noticed he started having some more energy but continued to lie on me. We poured all of the love and comfort on him that we could. We were ready to stay up all night if we had to just to get him through. The nurses just wanted to be sure he was hydrated and kept recording how much intake he was taking. They also collected his pampers and weighed them. One of the nurses noticed his IV was not in the best place. I also noticed that it was hurting him as it was in the vein on top of his left hand. It just seemed like an awkward spot. Every time she tried to administer medication through the IV , he would cry out in pain. I asked the nurse if everything could be by mouth instead of IV. Since he was taking in several ounces of the smoothie I prepared for him, they wanted to try him with by mouth medications and I was okay with that. The doctor OK'D everything to be by mouth as well and the IV was immediately removed. This was about 6 hours after surgery.
That night in the hospital, RD3 could not get comfortable in his bed waking up every few minutes to an hour. The sheets and baby pillow (from home) stained with blood tinged secretions. I pulled him from the bed and kept him on me so that he could drain better upright. He seemed to sleep much better that way. I was not comfortable in the chair I was sitting in but his comfort meant more than my own. The doctors and nurses came in about every 2 hours to check on him, give him medicine, check his blood pressure, etc. I'm sure he wouldn't have gotten any sleep anyway with so many people coming in and out of the room, even if he could sleep. I honestly was ready to leave the next day. I knew RD3 would thrive better at home in his own environment.
The next morning, RD3's cleft team came by to do a quick check and we noticed his secretions looking pink to clear. He was already doing better. They also noticed that he took in 500 ml of fluids (smoothies and apple juice) and they were pleased that he took in that much. They also noticed the marks around his mouth and let us know that it was from the device used to keep his mouth open for 2 plus hours. "Keep putting moisture on it", I was told. I was already ahead as I began putting VASELINE on it as soon as I noticed it. I planned to use aloe on it as soon as I got home. Because RD3 was taking in fluids, taking medications by mouth, and his secretions looked like they were clearing, we were told we could be discharged that day. We would just have to wait for one more visit from his surgeon, Dr. Ruiz.
While we were waiting, RD3 wanted to get up and move around. When a nurse came in I asked her if he could take off his monitor so that he could be free. She unhooked everything and he was off. We let him play with some of the toys we brought from home around the room. We also took him to the play area down the hall and got him some toys for our room. I just looked at him as he wanted to play as if this major surgery didn't even happen. I promise you, we learn the biggest lessons from our children. He just had major surgery in his mouth and wanted to get up and play like nothing happened the day before. It was indeed a new day. RD3 continued to take in some of the smoothie I made (thank God I packed enough). He was not able to do the thick pudding or yogurt I had and the smoothies worked out great for him. Dr. Ruiz came by that afternoon, took a peek in his mouth, liked what he saw, and said we were clear to go home. He even said he heard more resonance in RD3's voice already. Crazy how much we take our palate for granted.
We were already packed to leave while we were waiting on Dr. Ruiz and once he gave the authorization and we got RD3's prescriptions, we were able to go home. We were thankful we did not have to stay another day and it was just one night. We were sent home with Motrin and Lortab liquid. In the hospital, he was given Motrin and Tylenol around the clock, alternating every 3 hours, and Lortab for breakthrough pain if needed. I planned to do the same at home. We were also given an antibiotic, Cephalexin, and Ofloxacin ear drops since RD3 also had ear tubes placed in during surgery. The ear tubes are so small that you cannot even see them and they sit right on his eardrum. They helped with the drainage during surgery and after surgery. They were recommended so he would not have any fluid backed up in his ears and affect his hearing.
Once we were home, the recovery began. Before I even begin to write about recovery, I want to thank my MOM and DAD Diltz for being there for us. They sat with us while we waited for RD3 before surgery, during surgery, and got us food after surgery. They are likely the only reason I even thought of food as I was so preoccupied with RD3's well-being. The support from family is needed during this time. My mom wanted to be here but she had to help bury my dad's sister (my aunt) who passed away. She was able to come 10 days after surgery after she got through with the going-home ceremonies for my aunt. Of course, I felt terrible that I could not even attend my aunt's funeral. My son needed me, especially at this time.
The first week of recovery was the hardest. With our experience, this surgery was harder on our son than his lip repair. His secretions were less, but he still had them. Thankfully they were clear. We could only do liquids (smoothies) as he would not take anything else. I just wanted him to eat, so whatever he took and wanted, I was willing to give. Even with constant around the clock pain control, he had his moments when he was cranky and just wanted to be held. He would play with his toys and walk round. We could tell he was so happy to be home once we got here and he tried to swing back into routine, but he could not get comfortable. He wanted to sleep on us for naps and for bedtime. Ron and I took turns holding him. We would put him down when we thought he drifted into a deep sleep, and he would wake up soon thereafter. We were up every hour to two hours for the next week, each day adding an extra hour to him waking up. It didn't matter, we just wanted him comfortable and did whatever it took to keep him comfortable.
The great news during recovery is that RD3 was eating better and better each day. He got more and more confident with his eating and I know he soon realized that food no longer came through his nose. You honestly could not feed him fast enough. On the seventh day in, even though sleep was still not there fully, he had some apple sauce. That was a huge step, and thereafter, had pudding, yogurts, sweet potatoes, and purees of everything. He was an eating machine by day 8 and in the week after. My mom came at the right time, the 10th day after surgery, as he was getting so much better, and he was no longer in much pain. He was laughing more and soon he started to speak again. He started saying "Mama" and just laughing and laughing and getting into everything like he used to. Sleep eventually came as his secretions got lighter and lighter. After his follow-up appointment with Dr. Ruiz on day 8, we started treating his secretions with the Saline drops and kept on suctioning as much as we could throughout the day. Day 8 was literally like night and day with sleep after we started using the saline drops. God answered our prayers as RD3 got a good 5 hours rest before waking up and me putting him back to rest again. RD3's scars were also looking better as we were placing aloe on them around the clock. It was during the beginning of week three of recovery that RD3 began to sleep through the night again. We finally heard him breathing better and not snoring. Each night was better and better until we could not even hear him at all. RD3 was back.
We are grateful my mom could come when she did as Ron and I were able to catch up on rest. Mom graciously cooked meals and helped with cleaning. Both of which was a great help and she made sure the refrigerator and pantry were filled with food. We are eternally grateful to her.
To see RD3 smiling from ear to ear now gives me so much joy as we know that he has gone through so much that most of us could not endure. He inspires me every day, and I learn from his strength and courage. Looking back, I would have started the saline drops sooner to help with his secretions once we got home. He may have slept better a bit earlier. I hope this will help another mom and another cleft angel sleep better after palate surgery. I know for a fact that stopping dairy from his diet, 30 days before and continuing 30 days after surgery, also helped his healing time. He's eating better than he was before surgery, and we have his second follow-up appointment this coming Tuesday. His first follow-up appointment showed him having lost one pound, but his palate looked really good. I am sure this appointment will show a gain in weight, and they will give us the green light for him to have even chunkier foods and soon toddler meals. We are excited for him as he is truly a foodie and does not play when it comes to eating. He didn't even let Palate surgery get in the way of his food. He fought to get into the swing of things, and we couldn't be any more proud of our King in training. God we thank you for allowing us to make it through and for the victory!!
Mommy and Daddy love you RD3. You will always be our hero. May God continue to bless you on this journey as you bless others with your courage and strength. Two surgeries down, the next one is to tackle your encephalocele.
Things I packed for the hospital:
-5 (8oz) smoothies (Ingredients: almond milk, carrots, 2 dates, 1 banana, granola, nuts, small amount of coconut oil, peanut butter) - he had 4 and 1/2 smoothies
- Almond Milk chocolate pudding (he ended up not eating)
- Coconut Milk Yogurt (he ended up not eating)
- snacks for us (oranges, apples, sandwiches, chips, water)
- RD3's favorite blanket
- RD3's favorite teddy bear
- RD3's favorite books
- Electronic device for RD3 to watch LITTLE BABY BUM
- A syringe for RD3
- Overnight bag for RD3 (toys, clothes, shoes, socks, toiletries, etc)
- Overnight bag for us
Once home, I fortified RD3's smoothies with a small piece of turmeric (for inflammation) and beets (for healing) as well. I am continuing to keep him off of dairy for a while. Dairy would have likely increased the mucus production and he would likely still be battling those secretions. Thankfully, the amount secretions have gone down tremendously. For his continued journey, milk will not be a part of his diet, but I will begin adding yogurts slowly as time progresses. For me, milk is okay every now and then but does not need to be a staple part of a toddler's diet. I know that this has helped RD3's recovery immensely.
To my husband Ronald Diltz II, I love you beyond what I could ever write or say. Thank you for being my strength, my rock, and the shoulder I could cry on once RD3 went back to the operating room. Thank you for hand feeding me when RD3 would not leave my arms. You are an amazing husband and father. RD3 and I are so blessed to have you.
To Dr. Ruiz and his amazing team (Suzanne we love you), we thank you for being so thoughtful and thorough. You really take the time to make sure RD3 has the best care, and you are very delicate with his surgeries and treatment. We are forever grateful to you and how you allow God to use your hands to heal. We know RD3's journey is in great hands. May God continue to bless your practice and ministry.
To my cleft moms and cleft angels, hang in there! The first few days will be rough, but the light is around the corner. Keep praying and God will give you strength to make it through. God bless you all on your journey and know that this journey is not in vain. You were called for this, and God will give you everything that you need to make it through.
Update: We had our Second Follow-up appointment with Dr. Ruiz today, 3/3/2020. Dr. Ruiz took a look at RD3’s palate and said he was completely healed! He loved how everything looked! In three weeks! We expected 4 weeks! Look at God! We are so thankful and we have been cleared to begin him on thicker foods with chunks leading to toddler meals over time. The journey gets better my friends. Just hang in there and pray daily for God to see you and your angel through. I promise you, He will.🙏🏾
Monique Diltz