This past month has been a month of healing and recovery for our son Ronald Diltz III (D3). His surgery for cleft lip repair was May 13th, 2019 at Arnold Palmer Hospital. He has made tremendous strides since arriving home May 14th. We decided to stay one night in the hospital to bring our son home to an environment where we knew he would heal well and thrive. There's something about the hospital, and also being in a different environment, that has an effect on recovery time. After surgery, it took our son several hours to resume his normal feeding as he had to get adjusted to his new anatomy. Once he was able to eat, we knew home was the place to be. The doctors released us and D3 made strides immediately. He took only 15 ounces in the hospital with assistance from a syringe. At home, he began taking in 25 ounces, which increased to 30 ounces, then to 35 ounces, and even up to 40 ounces with his bottle. He did not need a syringe to help him get any milk down. We then began adding the rice cereal as we did before his surgery for a fuller meal. We saw our son recover in no time at all. We were instructed to keep his incisions clean with one part hydrogen peroxide to one part water solution twice daily. In addition to cleaning the incisions with the solution, we used aloe vera and breast milk to aide in the incision healing. The incisions were held together with dissolvable stitches, which we were notified would dissolve on their own once healed. Reflecting, the first three days were the worst since there is so much swelling initially. The swelling gradually improves as the days go by. Around Day 6 to 7, there was minimal swelling. Just so you know cleft parents, The doctors will send you home with arm restraints for your baby to prevent them from irritating the incision. I found that D3 could not sleep at night with them, so I took them off at night and kept at least one on during the day while he was being supervised. Eventually I gave in and took them both off so he could be free. He didn't bother his incision, but we definitely had our eyes on him.
Our follow up appointments were scheduled for one week after surgery and 30 days after surgery. Here are some photos of the recovery journey.
Surgery Day:
(Right before the procedure)
I truly believe D3 knew this was surgery day. Look at how happy he was and he did not complain once about being hungry. I fed him at 2 am that morning and this was taken right before 7 am. The nurses took him back shortly after for his surgery to begin at 7:30 am.
Day 1: Cleft parents, prepare for your precious baby to look totally different. You may have grown attached to the cleft smile and may even miss it. Your baby is beautiful before and even more beautiful now. Once we got to see our son, we were blown away, he looked amazing. He looked completely different and we had to adjust to his new features. We noticed how swollen he was, and the doctors made sure to inform us that the swelling would get worse but then get better around day 3 to 4.
The surgery takes about 3 hours including when your baby will wake up from the anesthesia. You will be allowed to go back once your baby wakes up. It is such a precious moment to be able to hold your child post surgery and comfort them. No parent wants their child to have to go through any pain, but to be able to be there and provide the comfort they need is a blessing. My husband and I made sure to give D3 whatever he needed and all he wanted was to be comforted. The strips that you see here were to protect the incision and we were able to take them off within 3 days. The most difficult part of the recovery would be in the next few hours as our son had to readjust to eat. It was very difficult. (Read my previous blog for more about the initial hours after surgery. Here's the link https://www.moniquediltz.com/blog/rd3-update-surgery-1-cleft-lip-repair Day one is by far the hardest day. Once you get through this day, the journey will be smooth.
Day 2: As told to us by the surgeon, the swelling would get worse the next couple of days before it got better. As you can see, our son is extremely swollen here. The day before, he managed to eat around 6pm and took in as much as he could throughout the evening. We had to help him with a syringe through the feeding. Today, he was able to get through most of the feeding on his own taking in about 15 to 19 ounces. The doctors allowed us to make the decision on whether to stay in the hospital for one more day, or to leave. We decided to leave to bring our son home. We knew once home, he would get through his recovery so much better.
Day 3: The swelling is still there but goes down tremendously. Our son is home and is
feeding very well despite the swelling. He was not going to let the swelling get in the way of his bottle. No sir!! We were able to take the steri-strips off of the incision. We kept cleaning the incision with the peroxide solution twice a day. D3 hated when we would clean his nose and incision site. I was left to do the cleaning as my mom and husband wanted me to be in charge of that. D3 would try to dodge me every time and would cry. As a parent wanting the best result, you have to do what you have to do. Cleaning time wasn't fun, but we knew it would be worth it. The arm restraints that you are sent home with are to prevent your baby from irritating the incision. D3 found a way to get them off every time we would put them on after a while, so eventually I just kept them off so he could be free. He's very clever and tries to figure out everything. We kept a very close eye on him to keep his hands from his face. The restraints can eventually be taken off by day 7 or so, so they are not on for long.
Day 5: As pictured, the swelling continued to decrease and some of the stitches started dissolving already. He was healing very nicely. We did notice there was more swelling on the left side versus the right side as well.
Day 7: When day seven came along we were ready for our post-op appointment. D3 looked better and better each day as the swelling continued to decline. He was eating well, breathing well, and sleeping well, Dr. Ruiz was very pleased with how he looked at this appointment and scheduled him for a 30 day visit. He is pictured above in a custom made onesie by me. I wanted to have this onesie for surgery day so bad, but God allowed for me to have it for his post-op appointment day. The adult version of this "Fearfully and Wonderfully Made" T-shirt is available in the SHOP for only two more weeks as more designs are on their way. All proceeds are for D3's medical journey. You can also check out the other designs we have available.
Day 10: D3 is playing and having a blast like he didn't have surgery. And look at that new smile!! He finally gave us the best smile he could after his lip repair. The doctor did say that the full smile would take months to see as the muscle was bruised during surgery and has to heal. We were just so thrilled to see him try!!
Day 11 : D3 is still thriving and is touching his toes, trying to talk, and trying to give us a good smile. He is more comfortable with his feeding.
Day 19: At day nineteen, we could see most of the upper stitches dissolved and just the stitches above the lip remained. D3 kept showing off his new smile every day. His smile gives us so much joy.
Day 27: On Day 27, D3 turned 5 months so we had to get him a cake (well us a cake) and take pictures to remember the moment. Look at that smile he is giving us. You cannot tell me God is not good. Just look at the progression of our son. He does better and better each day.
Day 35: D3's 30 day post operative appointment was June 18th, 2019. Dr. Ruiz was so pleased with his progress. All of the stitches were dissolved so now it was time to minimize the scar tissue. We were already using aloe and breast milk to aide the healing process. Dr. Ruiz liked our choice of aloe and also suggested Scar Away to help as well.
D3's next appointment is not scheduled until September. We will then find out the date for his next procedure. The next procedure will repair his nasal encephalocele (fluid between the eyes). We are very grateful to God for giving us strength on this journey. We cannot help but be optimistic of the journey ahead. Special thanks to Dr. Ruiz and his team for taking care of D3! We also want to thank each and every one of you for taking the time to read this and follow D3 as he makes progress. We have two surgeries ahead for now, but with God, family, and support from friends like you all, D3 is in great hands. We love you all.
For those asking about cost of a cleft lip repair, it all depends on the state, hospital, and whether or not there is insurance. The cost for D3's lip repair was $6000. After insurance, we were responsible for $1200. For parents having a baby with cleft, don't get discouraged. Know that the blessing and the assignment God gave you will be taken care of. Most hospitals allow you to make payments over time. Some insurance companies cover the procedure 100%, so it all depends on so many variables. One of my life goals is to have a non-profit organization that will help families offset the costs of cleft procedures. I know God will bring the vision to life. There is a reason why we were blessed to be cleft parents, D3's parents! Thank you all again for your love and support. If you would like to support our son D3, head to the SHOP for a T-shirt.
Now I get to head back to this cute face!!
Monique Diltz
