It's crazy to think that last week marked 1 year since Rachel's surgery!
Sometimes I see pre-surgery pictures and I'm in awe of just how different Rachel's face changed with the repositioning of her jaw.
Rachel was born August 31, 2004 with a unilateral cleft lip and palate. This blog follows Rachel's progress on the journey of repairs, her continued progress, and development into a young woman that brings many blessings.
Posts specific to cleft issues are listed on the right sidebar.
It's crazy to think that last week marked 1 year since Rachel's surgery!
Sometimes I see pre-surgery pictures and I'm in awe of just how different Rachel's face changed with the repositioning of her jaw.
I started this blog just over 19 years ago. Rachel was days away from turning 2 months old. I started this as a place for people to stay up to date on Rachel's Journey, and hopefully offer encouragement to other cleft affected families behind us on the same journey. And after the events of today, I have come to the realization that we have reached the end of Rachel's Journey.
Yesterday marked 6 months since Rachel's jaw surgery. We have a 6 month post op appointment the end of next week with Dr. Martin. I think everything is settled on the outside. We'll see what he says next week about the inside.
Today was the big day! After 3 1/2 years in this current set of braces, Rachel's braces came off!!! We had a mid morning appointment with Dr. Garcia whereas they took everything off, cleaned the glue off, took impressions for a retainer, took a couple X-rays, and took pictures inside and out for record keeping.
This first picture Rachel took of the Xray shows a perfect side view of her new jaw alignment and the metal hardware that was placed during her jaw repositioning surgery. The second picture is like the one taken last month, except this one is with all the braces and brackets and wires completely gone.
Rachel had an Orthodontist Appointment this morning before heading back to school, and it was the best appointment ever!! Rachel will be getting her braces off on December 22nd and she is beyond happy!!
Her last big medically needed surgery is behind her.
Her jaw is repositioned.
Her teeth are all straight.
For over 19 years, we knew what things laid ahead for Rachel in this journey of having been born with a cleft lip, palate, and alveolar ridge. And with the pending removal of her braces in a few weeks, that means that each of those milestones have been checked off the list. The only things that lie ahead for Rachel is if she wants some cosmetic things done like a lip revision or nose job. But everything medically has been done!!
It's amazing to look back at how far her mouth has come. Here is a comparison over the last 12 years.
Last week was 3 months since Rachel's surgery. She came home for the weekend in order to go to her 3 month post op appointment this morning with Dr. Martin.
This last week held a couple of milestones for Rachel!
We celebrated Rachel's 19th birthday a few days early with her favorite dinner, cake, and presents. We were traveling to Phoenix on her actual birthday. I can hardly believe our baby is 19 and this is the last year we will have any teenagers!
On Thursday, Rachel's actual birthday, we hit the road early afternoon to make our way to Phoenix, to move Rachel back to college. Thursday night, and all day Friday we spent unloading the storage unit and moving in to her apartment on campus, setting up her bedroom and the living room she will share with three other girls.
Saturday we went to breakfast and just spent time together, visiting the Lope Shop and getting drinks at the campus coffee spot. We went for a nice dinner and then it was time to say our goodbyes and then we needed to hit the road for the long drive home.
Rachel will be home in 3 weeks for a post op appointment with Dr. Martin.
Rachel had a couple of days to settle in, getting to know her roommates, and developing a new routine before school started today. She had one class today and absolutely already loves this professor. This years classes are all related to her major, which she was very much looking forward to! She sent me this picture for her 1st day of Sophomore Year at College.
We saw Dr. Martin today for Rachel's 2 month post op appointment!
It was a pretty uneventful appointment. Dr. Martin looked took a look inside and said everything looks great! Diet can now include very small bites of steak and working up to bigger bites over the next several weeks.
We return in 4 weeks for another appointment.
It's been 8 weeks. Time for some Side by Side comparisons!
It's hard to believe that it was one month ago today that Rachel had her surgery! It was a busy morning of appointments.
First up was with Dr. Martin. It was a quick visit and the most important thing to come out of that visit was that Rachel's diet has been upgraded! She can now chew small bites of chicken, ground beef, PBJ sandwiches, etc., in addition to all the soft stuff she's been doing. She was ecstatic to say the least!
Dr. Martin said everything inside looks great, swelling on the inside is all gone, stitches still intact, bite and the alignment of teeth looks great. We actually don't go back to see him for 4 weeks! Thankfully this is all working out as she moves back to Phoenix for the new school year a week later.
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Length of Surgery
The length of surgery will depend on if the upper jaw and the lower jaw are being repositioned.
Rachel had only the top jaw repositioned. We were originally told surgery could last 4-5 hours, however surgery lasted just shy of 3 hours.
Hospital Admission
Rachel's surgery was the first one of the day for our plastic surgeon. She spent a quite a few hours in recovery while waiting for her to come out of anesthesia and then waiting for a hospital bed to open up. It was early evening by the time she actually got to a room. She ended up spending two nights in the hospital.
Being discharged home all was dependent on:
1) Her ability to take in liquids. They want to make sure dehydration wouldn't become an issue and land you back in the ER.
2) Her ability to take oral pain meds. I don't think Rachel received any IV pain meds after the first night. She was on liquid Oxycodone and Tylenol.
3) Her ability to be up and walking and moving about. The morning after surgery, Rachel was in her own comfy clothes, and was up and about. Going to the restroom herself, walking the halls, and drinking, drinking, drinking.
They kept her a second night to watch for any signs of respiratory distress that could surface due to all the swelling. Respiratory distress was not an issue for Rachel.
Dietary Restrictions
At Rachel’s Pre-Op, we were told she would be on liquids only for 2 weeks, but she was actually placed on a “soft mechanical diet.” Meaning anything soft that requires NO chewing.
Protein is a huge aid in healing, so we really pushed (and still are at 3 weeks post op) the protein. Drinking at least 3 protein shakes a day, applesauce, pudding, mashed potatoes, refried beans, greek yogurt, juices, milk shakes, frappacinos (double blended worked out great). One day I even cooked up glazes carrots in the instant pot really soft and kinda mushed them, she was in heaven with something different.
Rachel had done some research ahead of surgery and one of the things another cleftie recommended was to have baby spoons. We bought some and they have been most helpful!! They are small, and soft and have worked out great!
Buy the multiple pack as you’ll be using them a lot! And be sure to pack one in your hospital bag in the event your child is put on a soft food diet following surgery.
Rachel was not allowed straws or any drinking that required slurping. She used spoons for milk shakes and frappacinos. She used a paper cup and drank her water from that.
We were stacking meds. First few days it was the Oxycodone and Tylenol and then it was Advil and Tylenol. We were evenly spacing apart the two pain relievers so she constantly had some sort of pain relief in her system. We kept track of “Last Dose” and “Next Dose” which made it easier to keep things straight. It also allowed her Rachel to know when she could have something in the event she was up at night and didn’t feel the need to wake one of us.
Rachel also had an antibacterial mouth she uses twice a day. The first couple of days home, she was also on Colace, as pain meds and anesthesia can make you consitipated.
Swelling/Bruising
Rachel’s swelling was probably the worst around Day 4-5. And the only bruising she really had was on Day 3 just under her eyes, but it went away over night.
At our 1 week Post Op appointment, even our plastic surgeon was not impressed with her swelling. Apparently it can be pretty bad!
We were not given any discharge instructions to put on ice packs. I did do it one day, and Rachel actually said she felt like it made the pain worse.
The first 72 hours, they want you sleeping upright, which is easy in a hospital bed. Once home, they suggested the head staying at a 45 degree angle propped up on pillows.
Our plastic surgeon said the more upright and walking about you can do following surgery, the better it is for keeping the swelling down.
One week post op and our plastic surgeon said she can’t undo thing is she chooses to sleep flat in bed, but she could wake up a little swollen. So it all depends on if you want to be totally comfortable and are okay with some increased swelling, etc.
We moved a recliner into Rachel’s room and she slept every night in the recliner for the first 3 weeks.
Breathing
Because there is so much swelling, it is possible to have some difficulty breathing, especially out the nose following surgery. The nasal passage will also be irritated and swollen as they will do a nasal intubation during surgery for an airway. Be prepared for bloody noses and a lot of dried blood following surgery.
In Rachel’s research, she also read it was good to have some Breath Right Strips on hand to put on the bridge of the nose in the event of a lot of swelling and congestion. Rachel didn’t end up using these.
Following surgery, one of the things prescribed was a saline mist nasal spray. It was given to her every 2 hours in the hospital. Sometimes they’d forget to give it to her, so she would ask. She also came home on this and it helped tremendously the first week!!
Rachel also had read that having a humidifier going in the room helps with easier breathing and making the nose moist. We bought a new filter and pulled out that humidifier from the toddler days (yes! I still had it!…LOL). Rachel said the humidifier helped a ton that first week!
Physical/Activity Restrictions
Only restriction Rachel was given was to not bend over to avoid pressure in her head. This was just the first few days.
Mouth Splint
Rachel came out of surgery with a splint attached to her upper braces. Everyday, throughout the day, she had to practice putting her teeth into that splint. The splint affected her speech quite a bit. And made it hard what she was saying at times.
Rachel had her splint in for 3 weeks. Dr. Martin said it's normal to be in for 3-4 weeks.
Misc Other Tips and Advice
* Rachel was given an ointment to put on her lips a couple times a day. Her lips looked pretty bad from all the swelling and stretching of the lips. We also bought a package of Aquaphor Lip Repair Sticks. She applies it constantly to her lips.
* Buy a baby tooth brush. They will tell you oral hygiene is still very important. The oral mouth wash will help some. But a baby tooth brush has a much tinier head and can brush some of the teeth a lot easier than a normal size tooth brush.
* One of the other things Rachel learned in her research was having squeezable condiment bottles on hand. This was going to be more helpful when we thought 1) she’d only be on liquids and 2) her mouth would be banded tighter, making it harder to open her mouth. We have only used one once so far and that was to fill with warm water and Rachel kinda just rinsed her mouth out.
* This time around, Rachel had terrible time with the anesthesia making her nauseous, which resulting in throwing up a few times. Rachel was given Zophran and Compazine. One of the recovery room nurses gave us some alcohol wipes to open and wave just under her nose. It's suppose to help ease nauseousness. The other thing that also helps is peppermint. So if you have any peppermint essential oils, remember to bring that in your hospital bag, just in case.
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These were the things that I felt were the most important to share and give advice and tips for.
However, if you are reading this post, and you have questions, perhaps something I might not have covered, please leave a comment on this post, or even sign Rachel's Guestbook, leaving your email, and I will email back!
I would love to answer any questions and offer and support and encouragement to help ease any fears you might have if your child is on the brink of having this surgery!
Today is officially 3 weeks since surgery!
After Rachel's appointment with Dr. Martin yesterday, the girls and I went to Disneyland for the afternoon/evening. Rachel did great - ate a couple of good sized meals now that the splint is gone! What a difference a full stomach can have on ones energy and mental status!
I took this weeks comparison pictures in the exact spot where I took her before pictures the week before her surgery.
It's been two weeks since surgery. Here is the latest set of before and after pictures.
And here are the front view pictures: