The End of Rachel's Journey

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.

After impressions were taken, Rachel was given a toothbrush to go and brush her teeth. She took this video in the restroom as she saw herself without braces and her new look for the first time. 

After the above checklist was done, we were able to leave for about and hour and a half while her retainer was made. We took a drive up to Oak Glen and went to the candy store and acquired a caramel apple to enjoy this weekend. We then stopped and took some cute pictures of her and her new look. 

Back to the office to get Rachel's retainer. The ortho tech gave Rachel the entire run down of taking care of her retainer, and making sure not to through away on any meal trays, etc. And then Dr. Garcia gave her the news that she only needs to wear the retainers at nighttime!! 

Rachel was given a Starbucks gift card and an appointment for when she's home on Spring Break in March if she feels she needs to have things checked on. We left a gift of homemade Christmas cookies and a thank you note and said our goodbyes. 

We went to dinner at Famous Daves tonight so Rachel could enjoy ribs and corn on the cob!! 

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It's crazy to think that this is the end of Rachel's Journey as far as her cleft journey is concerned. 

There's been some seasons where the journey was quiet, not much going on, just waiting for the next phase of the journey. 

And up until now, there's always been "a next season". But there is nothing left medically to be done. If Rachel chooses, she could have a lip revision or a nose job, but if you ask her today, she's perfectly happy with her new look and doesn't desire to have those things done. 

When Rachel was born, it was overwhelming to think about all that laid ahead of her, and for us as her parents. 

The Lord was with us every step of the way. We saw His hand on so many things through the years. Seeing us through six surgeries related to her birth defect. Countless doctors appointments, orthodontist appointments, finding just the perfect speech therapist that worked one on one with her for years, insurance difficulties and approvals and so much more. And we give Him all the glory!! May Rachel's Journey be a testament to His goodness! 

"For you formed my inward parts; 

you knitted me together in my mother's womb.

 I praise you, for I am fearfully and wonderfully made. 

Wonderful are your works; my soul knows it very well."

Psalm 139:13-14

LeFort 1 Osteotomy: Tips and Advice

When I started this blog 18 1/2 years ago, the primary reason was to have a central place that could keep friends and family updated on Rachel and how she was doing, surgery dates, recovery, etc. 

Because I had found helpful information and encouragement in a blog whereas the little girl was older and ahead of Rachel in her treatments and surgeries, I wanted Rachel's Journey to not only keep our family and friends informed as to Rachel's progress, but I wanted it to be a source of information and encouragement for others who were also on this journey of having a cleft affected child. 

Since keeping this blog, we have made many "cleft friends" via Rachel's Journey. While we've never met in real life, our hearts are all tied together having had a child born with some sort of a cleft and all that entails.  

I know many of my posts through the years have been helpful in sharing what to expect, some tips we found helpful for Rachel, as well as offering some hope and encouragement, I wanted nothing different when it came to sharing about this surgery, Rachel's biggest surgery in her journey. 

Therefore I have constructed the following information and things we found helpful through this recent surgery. 

Every child is different. 

Every Surgeon is different in how they do things. 

Every outcome is different. 

The following information and tips are things that pertain to Rachel and her surgery and what worked for her recovery. Hoping that once again, some of this information is helpful to our cleft friends. 

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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. 

Talking/ Communicating 
Prior to surgery, we bought a white board from The Dollar Tree. Rachel packed it in her hospital bag if she needed to write on it to communicate with the nurses in the event we were not there. 

Because of the internal swelling, pain, and splint, her speech was hard to understand, especially the first few days. Quite a few times we had her text out what she was saying/needed those first few days. 

She became easier to understand as the days went by and she’s able to open her mouth more. She's been a lot easier to understand since the splint came out. 

Pain Management
Rachel received Oxycodone and Tylenol while in the hospital. She was discharged with those meds as well. 

On Day 3 Post Op, we were told Advil was acceptable for stacking with Tylenol as they would not refill the Oxycodone. 

The white board we bought for taking to the hospital, we used for keeping track of her meds once home. I set up this little spot on our kitchen counter with everything we needed.

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! 

The "I Am Hallway"

Back in October, Rachel went to a photo shoot for an upcoming project at Loma Linda University Medical Center. I am happy to share that this project is now complete and this evening, we went to a reception in honor of all those who participated.

The project transformed the main corridor of the Medical Center into what is now called the "I Am Hallway". Lining this hallway are about twenty pictures, very big pictures. And everyone one of the pictures has an "I Am" statement.

Here is Rachel and her picture:The inscription on her picture reads:
I am Beautiful

"There is something that draws people to Rachel; it might be her sparkling eyes, or gentle heart. It might be her smile that captures others. That smile came at quite a cost to this young girl who has already had 5 surgeries in her few short years. Born with a unilateral cleft lip and cleft palate. She had her first surgery at five weeks of age. The most recent one required a bone graft from her hip to form the front gum line and nose revision. Through it all, she has had a host of people praying for her and her family. The result is beautiful, but everyone knows it’s not the skin that creates beauty—it’s the caring spirit that shines from within. That is beautiful!"

*****************************What a wonderful evening. We met some people with amazing stories. We are very blessed to have been part of such an amazing project.

We were given an 8x10 framed picture of Rachel's picture with her "I Am Beautiful" inscription, as well as a button. All the participants were wearing theirs proudly. The photographer will be putting up all his pictures onto a website soon, so that we can download the pictures we want, for free.

After a few words from the people who made this happen, they went around the room and had each participant introduce themselves and share their "I Am" statement. All very touching. But the one that touched me most of all was when Rachel stood up on her chair, her teddy bear clenched in one arm, head held high, and she said "I'm Rachel and I am Beautiful!".

Little Girl Sees Smile for the First Time

One of our cleft friends posted this video on her Facebook page a few days ago, of course it touched my heart, as I'm sure it will yours.



We fell in love with Rachel's wide smile on August 31, 2004, and fell in love again with her new smile on January 26, 2005.

Rachel's Journey Through Pictures: Updated

Three years ago I put together a slide show of Rachel's journey up until that point.

With the most recent hurdle of this journey now behind us, it was time to add pictures to the slideshow...

God is Good, isn't He???

Some Tips Following Bone Graft Surgery

When we learned back in August that Rachel would be having her bone graft, I immediately went on a search for other families that had already endured this surgery. I searched and searched for personal blogs, message boards, somewhere I could ask my questions and get answers from another Mama that had already walked in these shoes.

My search was unsuccessful as far as those places.

Eventually, I did find one Mom through a Facebook page who's son had had a bone graft this last Spring. I sent a private message asking if I could ask questions. It took weeks for her to answer. And when she did answer, all of her answers to my questions were extreme, it was borderline anxiety producing thinking that's the road that soon laid ahead for Rachel, and for us.

One of my goals of keeping this blog has not only been to keep family and friends up to date with Rachel and her going ons of having been born with a cleft lip and cleft palate, but it has also been my goal to help journalize the cleft specific things to offer help, ideas, and encouragement to all the families that are behind us on this road. I've 'met' many a wonderful Mama's all across the United States, and some even outside of the U.S, where we share the common bond of having a child born with a cleft of some sort.

For the past six weeks, I've been jotting down notes, tips, and suggestions for all of YOU, who will someday in your child's future face a bone grafting to the alveolar ridge. I hope that this post is of help to someone...
******************************************** Length of Surgery
The length of surgery will be different for every child depending on the severity of the alveolar cleft. When I asked at our pre-op appointment for an estimate as to how long surgery would be, we were told 2-3 hours, but that our plastic surgeon doesn't stop until he's completely happy with his work, which is a nice quality to have in a plastic surgeon when having work done on ones face. :)

Rachel's surgery took two and a half hours from start to finish, and that included a nose revision.

Dietary Restrictions
Following surgery, Rachel was placed on a soft food/no chew diet. She was allowed juices, ice cream, soups. Once home, we did applesauce, ice cream, frozen soft yogurt, pudding, mashed potatoes, soups, shakes, graham crackers broken into pieces and soaked in milk.

At our post op appointment, just 5 days after surgery, Dr. Martin told us we could do a soft food diet that included soft foods such as mac and cheese, scrambled eggs, refried bean cups, broken up soft french fries, anything soft that could be chewed with the back teeth.

To get protein in Rachel, we tore up slices of cheese, tore up lunch meat, cooked and diced hot dogs, I took spaghetti and cut the noodles into tiny pieces with my kitchen scissors and served with marina sauce.

After another post op appointment, we went a little further. Cooking and dicing up chicken tenders, mandarin oranges broken into pieces, apples diced up into bite size pieces.

She was not allowed anything hard or sharp, such as chips or crackers. And nothing that required taking a bite with her front teeth, things such as sandwiches (although I did make a PB&J sandwich and cut into tiny pieces to eat in the back of her mouth), chicken wings, pizza, etc, etc.

Rachel was on a soft food/ easy to chew diet for 3 1/2 weeks.

One of the things I found helpful was using plastic spoons. One of the local frozen yogurt places has these great spoons that I save and use in the girls' lunches. They came in handy for Rachel's recovery. They have a very skinny end that allowed for successful dropping into Rachel's mouth the week following surgery. We did not want to take any chances of a metal spoon hitting that sensitive bone graft area, so we used the plastic spoon, and we fed her the first week post op.

Rachel was also not allowed straws or sports top bottles for 3 1/2 weeks following surgery. I found the best thing was to have paper cups sitting on the counter for her to use. A paper cup, if the upper gum or lip should be hit, would be less painful than a hard plastic or glass cup. When she returned to school, I sent a paper cup and a water bottle to sit on her teachers desk.

Feeding Rachel was been VERY difficult. Coming up with things for her to eat has been very stressful. She's become very picky since surgery and sadly has lost 2 1/2 lbs, which on a little girl, is very noticeable. For almost two weeks after Dr. Martin lifted all food restrictions, Rachel was very hesitant to eat. Getting her to eat was very difficult and very stressful as we did not want to see her loose any more weight. But once her fears subsided, and she even began chewing and taking bites with her front teeth, she's been an eating machine! And that's okay with us!

Physical Activity/Restrictions
Rachel was up and walking hours following surgery. It is said that the most painful part of having a bone graft is the pain that comes from the donor site, the place where the tissue was taken, and in Rachel's case, it was her left hip. From Day 1, she had no limp, no pain to complain of from her hip, nothing.

Once school resumed, two days shy of being two weeks post op, Rachel did not participate in PE, or recess. The chance that a ball hit her nose was too great, and would be extremely painful. So I packed her a back pack of new coloring books, new crayons, a tablet of paper, and some other fun things to do while she was 'benched'.

She resumed Tae Kwon Do class, two days shy of it being three weeks post op, and that might have been a little bit too soon, as she woke up the next morning complaining of her leg (specifically the leg where tissue was taken) hurt. It was probably too much jumping and kicking about.

When Rachel was just a few days shy of four weeks post op, she went back to playing at recess and is participating in some PE, she still sat out on the days that PE involved a ball. LOL.

We're thinking that once she returns to school next week, after our three week Christmas vacation, she can go back to playing without any limitations, at that point, she'll almost be eight weeks post op.

Pain Management
Rachel received morphine while in the recovery room for pain, but once in a room, and upon being discharged, she received Tylenol with Codeine. We were told that the only reason she was kept overnight in the hospital was due to the pain and the access of having better pain control as an inpatient.

There were two times in the night that I had the nurse page the on call doctor because it was evident that the pain medicine was not enough. Sadly, our pages were never returned and come morning, we discovered that Rachel had been severely under medicated through the night. When she should have been receiving 10ml of Tylenol with Codiene, she was only being given 2ml, the dosage appropriate for that of an infant. Once we got the proper amount of pain medicine in her system, things changed drastically for the better.

If you should suspect that the pain meds you're child might receive following a surgery might not be enough or doing it's job the way a pain drug should, be persistent about bugging the nurses to page the doctors on call, double checking they are paging the right doctors on call, even questioning the nurse that what she is administering is the proper dosage.

We were sent home with Tylenol with codeine, the proper dosage. And for the first three days, we gave it like clock work, every 4-6 hours as directed. For two nights, we even set our alarm in the night to get up and give her something in her tummy and give her a dosage of pain medication. It was important to break the pain cycle.

With Rachel, you could tell the pain meds began to wear off about 30-45 minutes before the next dosage was due. By Post Op Day 5, we were giving Rachel regular over the counter Tylenol. And by 1 week post op, she was pain free.

Bruising / Swelling
When I initially asked at our Pre Op appointment as to how much bruising we should expect with the nose job, I was told that because they were working with cartilage and not bone, there would be no bruising. That was not the case for Rachel.

Rachel's face began to swell the day after surgery. The worst of the swelling was at 3 days Post Op. And then from that day on, the swelling started to slowly decrease.

As for bruising, the bruising surfaced under her eye and her upper cheek bone on the side of her face where the majority of the work was done (her right side) on Day 4. It was a yellow bruising which usually is an indicator of deep tissue trauma. The bruising was gone within a week.

Nasal Stents
The morning following surgery, Rachel hated those nasal stents with a passion. She screamed, she hollered, she wanted them out! She continued to complain about them, but never once did she try to take them out.

Our plastic surgeon explained to me at the first post op appointment that Rachel's nose had a lot of scar tissue and scar tissue has a tendency to go back to it's original shape very easily. So he always prefers to leave nasal stents in place anywhere for one to three weeks post op. He also told us that it could take up to 6 months Post Op for the nose to settle down and become the new permanent look.

Rachel had nasal stents for twelve days. She was not self conscious about them. She went to church with them in, went out in public with them in, even went back to school for one day with them in.

Returning to School
This is one area that will be different for everyone. We scheduled Rachel's surgery for a time in which she was off track from school. She missed NO school due to surgery, or the time it took to recover afterwards. Rachel returned to school on the very first day back from vacation, which was 12 days post op.

******************************************** These things were the things I felt most important to share and offer some advice.

However, if you're reading this post, and you have questions, perhaps something I didn't cover, please leave a comment, or sign Rachel's guest book and leave your email address and I will email back!

I would love to be able to answer questions or put aside any fears you might have if you're on the brink of having a bone graft done to your little one.

Rachel's New Nose

I took this picture on Friday morning when Rachel's class was doing a book exchange. She was having so much fun and I just love the expression and smile I captured in this picture. In the last month, we've seen Rachel's nose change drastically. It really is an entirely different nose than what it was.

There are times when I just sit and stare at her little face. A lot of people now say she looks so much like Hannah with the new nose, which is absolutely amazing to me that people see that, and yet it was the work of a plastic surgeon that made her nose to look that way.

There are times when I think her nose is big, shaped a little funny, too this or too that, and then you know what, I look around at all the kids in her class, at the school, in Sunday School, even her little cousins, and they all have some silliness to their nose in some way. LOL. It's just how people's noses are and I'm simply not used to seeing such a 'normal' nose on my girl.

And just like the days and weeks following her lip repair, when you go through a time of missing that 'wide smile' that once was the center of your babe's face, you go through it again after a nose job when the nose has changed so drastically. There are at times I miss her little squishy, lopsided, and flat nose...

A Divine Appointment

I've mentioned twice before about "Divine Appointments". The first one was years ago when we met a couple at Lowe's who had a son with a cleft lip and palate. I refer to that as our Divine Appointment at Lowe's. And then there was a shift that I was working a few months back whereas I worked with a nurse that had had a cleft lip and palate and numerous surgeries. I refer to that as my "Divine Work Day". Today, while my Mom and I waited in the waiting room for Rachel's Post Op appointment, I had another Divine Appointment.

*****************************My Mom and I were sitting, waiting for Rachel's name to be called. Mom was knitting, Rachel was playing on Gramma's iPod Touch. And I noticed a young mom, who was also accompanied by her Mom, sit down across the room with a baby. I whispered to my Mom that the baby appeared to have a cleft. I could tell from across the room that her lip was taped and might have even had a NAM device in her mouth.

It was hard not to stare. Not because the baby had a cleft lip, but because me and that Mama, we shared something. We were walking the same journey of having had a baby born with a cleft.

My Mom encouraged me to go and talk to her. I couldn't at that point. All the emotions of last weeks surgery was too fresh. The emotions of knowing this was a Divine Appointment was almost too much to handle.

Shortly thereafter, some seats opened up right across from us. I watched the Mom holding her precious cargo motion to her Mom that they should move seats. I whispered to my Mom that it looked like they were moving over, and she referred to it as a "Divine Set Up." The Lord was going to open up the doors to talk this Mama after all.

And that's what happened. We made eye contact and started talking. Turns out, she had recognized me and Rachel from having visited this blog!

Her baby girl is six months old and has a bilateral cleft lip, and Is currently driving over 75 miles one way every week to the dental school to have her NAM adjusted. She was seeing Dr. Martin today in hopes of getting surgery scheduled for her lip repair. She's been told Dr. Martin's surgery schedule it full until March.

The other thing I shared with this Mama - she and her husband did not learn of their baby's cleft until her OB was performing a C-Section! None of her ultrasounds done through her pregnancy ever focused on the baby's face, only her major organs and measurements. Her story was like ours.

It's always nice to meet other Mom's traveling the same journey. Makes our little 'cleft world' seem a lot smaller than it is. And I'm always thankful for the divine appointments the Lord sends my way.

It's always been my goal in keeping this blog to offer hope to parents just starting out on their journey, to help give information from a family that's already walked the stretch of journey they are currently walking. And today, with meeting Melissa and Aubrianna, it gave me great pleasure to know my blog had done just that once again...

One Month

Today is October 17th. One month from today is Rachel's surgery.

One Month.

As I was thinking about the date and how surgery is only one month away this morning during worship at church, I couldn't help but have tears rise to the surface.

I know she'll be fine. I know the Lord will have His hand on her and all those who operate on her, the nurses, etc, etc. And I know our family and friends will cover her and us in prayers, but I can't get past how hard it's going to be to turn her over to the surgical nurse and watch her be rolled or walked away to surgery.

I think that's the hardest part of it all. The pre-op appointment is no sweat. The sitting through surgery I'm good. Even through the initial hours following surgery, I'm good. And the days of recovery, I'm good. It's the handing over of my child to a nurse and watching her be taken to surgery that I'm a mess. And Rachel can't see me that way, or she'll become scared or worried, or even upset herself.

Even writing this post, I'm in tears.

The single most hardest thing I have ever had to do as a mother is to watch my babies be whisked away to surgery. Both of my girls. Hannah had one surgery when she was four months old, and this will be Rachel's 5th.

Please be praying for me. Praying for strength to get through that time of driving to the hospital, checking in, helping her into her hospital gown, and ultimately standing there watching as Rachel is taken from us. If I can just get through all of that, I know I can make it the rest of the way...

A Divine Work Day

There's been a few times over the years where we've met people out in public who had children with clefts. There was the one time when Rachel was just a baby, and this couple had followed us all over Lowe's Hardware store and finally approached us. Turns out their son noticed Rachel's lip being taped and he'd had a cleft, repaired by Rachel's then plastic surgeon. We walked away that day knowing meeting that couple was no accident. It was indeed a divine meeting.

Today, was another divine appointment.

I recently took a part time job, working in my profession as a nurse. I'm currently working different locations providing flu shots to the general public. Today, I was at a grocery store, about thirty miles away from home. I obtained the shift last night by accident, not realizing it was for today's date. But as my morning progressed, and I met the second nurse for our clinic, I knew today's shift was no accident. It was another one of the Lord's divine meetings.

Around noon, when the other nurse arrived and introduced herself to me, before she even sat down, I recognized something familiar about her face.

I was 99.9% sure she had been born with a cleft lip. I couldn't help but stare at her. I had to ask, but how do you ask? So we chatted, she asked if I was a new nurse, I explained I was a nurse coming out of Stay at Home retirement for the season. LOL. She told me she was a new grad, having worked a few months in home health before she quit and had to have surgery because she'd been born with a cleft lip and palate. And there it was...the door was WIDE open for conversation. I told her I had wondered if she had been, simply because my daughter had been born with a cleft. And I was familiar with clefts and repairs, etc.

I was overcome with emotion. I tried to hold it together, but there was no accident in me getting this shift today. The Lord knew I'd be paired up with this nurse. He knew I needed to meet her and see her and how far she's come. To ask her questions. HE KNEW!! And I KNOW it was Him who orchestrated me getting this shift today. And I'm so thankful.

I asked her if she cared if I asked her questions in regards to her cleft and all her surgeries, and she said "No, she'd love to answer any questions".

She was twenty five years old and has had at least nine surgeries regarding her cleft. She said she'd had so many she really couldn't remember how many, but she was pretty sure it was nine.

She had the surgery that Rachel will have in two months when she was twelve. She's never received any speech therapy, and there were some things she said that I could tell she'd had no speech. It promoted me to write an email to our speech therapist once again thanking her for all her work with Rachel.

When my shift ended, I sincerely thanked her for answering my questions. And as I got on the freeway for my journey home, I prayed and thanked the Lord for opening the door to today's shift and for my nurse co-worker.

Definitely another Divine Appointment. Thank You Lord!

Rachel's Story

I've recently become active on a Facebook page for families of cleft affected children. Every day, a new 'story' is shared about the life of one of the children represented on the board. This is Rachel's story...

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Because of my history of going past my due date and delivering such a large baby with my first pregnancy. An ultrasound was done and showed the baby already between 9-11 lbs, with ten days left until my due date. Therefore I was scheduled to be induced the next day, August 31, 2004.

I was admitted, hooked up to pitocin, and after ten hours of labor, and no progressing, my OB decided it was in my best interest, and the best interest of my baby, to do a c-section. Within two and a half hours, I was prepped and in the OR.

After all the tugging and pulling, I'll never forget the words, and how my OB said them, to the team of nurses, the anesthesiologist, and others in the room. "We have a baby girl with a cleft lip, complete, with cleft palate". Being a nurse myself, I knew what it meant. It meant I had just delivered a baby with a birth defect that had gone undetected. After cleaning her up a little bit, they brought her over to show me. And staring back at me, was this dark haired baby with a wide gapping hole just below her nose. Because they weren't sure if she had anything else wrong with her, they handed her to my husband, and then whisked him and her off to the nursery to check her over. I was left there in the OR all by myself (well, my OB was stitching me up and the nurses were there) to think and dwell on the fact that I had just delivered a baby with a birth defect and of the long journey that laid ahead.

The days following Rachel's birth were extremely hard.For nine months we'd prayed for a healthy baby with all it's toes and fingers, etc. Why did the Lord choose to allow this to happen to our baby? Rachel was indeed born healthy, with all her fingers and toes, she had no other health issues, or disorders, sometimes associated with cleft affected babies. He did answer our prayers. But allowed Rachel to be born with a birth defect so that we ultimately could give HIM all the Glory for all He would do in Rachel's life, through her journey that laid ahead.

We didn't know anybody who'd had experience with a cleft. Nor did anyone at the hospital. We had visitors bringing us stacks and stacks of information they'd printed out from the internet. We really had no idea what was in store for Rachel.

We ended up at Loma Linda University Children's Hospital, which is where Rachel's craniofacial team is.

Rachel's cleft lip was very wide. She had her first surgery when she was just 5 weeks old, a lip adhesion surgery. It was the first step to fixing her lip. The idea was that the two sides of her lip would be stitched together to cause that skin and muscle to stretch, and as a result, it would be good and ready for the time in which a formal lip repair would be done. Over the course of the week following surgery, we sadly watched the stitches come undone. The surgery had been unsuccessful.The formal lip repair came when Rachel was 5 months old. The Plastic Surgeon was able to do the lip repair in just one surgery because Steven and I were diligent to keep her lip taped for months leading up to the surgery. The idea behind the taping was that the two sides of her lip - the muscles, would stretch and surgery could be done in one. We changed the tape every day and were faithful to keep doing it. Upon seeing Rachel for the first time in the recovery room, with her new smile, my husband and I were moved to tears. She looked amazing. The plastic surgeon did a wonderful, impeccable job at stitching two pieces of her lip together just so. She stayed in the hospital one night and had no complications. In the weeks following her lip repair, she just looked better and better. But it's amazing how you do kind of miss that 'wide smile' once it's gone. It was the face that I'd fallen in love with. Just three weeks after her lip repair.
Rachel's palate repair, and tubes in her ears, happened when Rachel was about 14 months old. A little later than we would have liked, but her plastic surgeon left Loma Linda, and the new one was waiting for his California medical license to take effect. The palate repair went smoothly. However, she did suffer one complication. During surgery, her tongue became clamped down, and once released at the end of hours of surgery, it swelled. Swelled to the point her little tongue would not fit back in her mouth. Thankfully her air way stayed clear, and once given several doses of steroids, and after two nights in the hospital, we were discharged.In the Spring of 2006, Rachel began speech therapy at the young age of 18 months. She continued with speech therapy for over a year, first doing therapy once a week, and then eventually stretching to once a month.

In October 2007, Rachel had tubes placed in her ears again.Early this summer, Rachel started receiving aggressive speech therapy. And we are extremely happy to report that after only ten sessions, she is making great improvement and progressing quicker than our therapist ever dreamed.

Rachel's Journey has been rather quiet the last few years. But with a recent trip to her plastic surgeon, we have learned that we are in the next phase of Rachel's Journey.

We knew the next major surgery would be when Rachel was between the ages of six and eight, the bone graft surgery to repair the cleft in her alveolar ridge. Well, Rachel will be six at the end of this month and we are at the next phase. On November 17th, Rachel will be admitted to the hospital and will have her bone graft done, as well as her first nose revision. It's exciting. It's nerve wracking. It's a lot to think about. Like I said earlier in telling Rachel's story, I believe the Lord gave us Rachel and her birth defect so that we could be a light to all those we come in contact with through this journey. Telling people of His goodness and faithfulness through it all. I know without a shadow of a doubt that the Lord will guide and direct her plastic surgeon's hands when doing the bone graft and nose revision in a few short months. I know He'll get us through the recovery process. And I know that in the end, after stitches have dissolved, after wounds have healed, and bruises diminished, we once again can give HIM all the glory for having gotten us through yet another surgery....

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When Rachel was born, after the inspiration of another cleft affected Mommy, I began this blog about Rachel and her journey. It was a place to keep friends and family up to date on the latest surgery news, progress, and pictures. And through the years, because of this blog, I've met many a wonderful people online who are walking the same journey. I've always counted it a privilege to be available to answer questions, offer encouragement, or suggestions when it comes to anything we've already experienced. If I can be that to any of you who may read this, please don't hesitate to contact me.