Wednesday, November 30, 2005

Happy To Be Back in Her Crib

Today is the first day of naps without being strapped in and confined to her car seat...and she's sooo happy about it!

Tuesday, November 29, 2005

3 Week Post Op Appointment

It's hard to believe that yesterday marked 3 weeks since Rachel's surgery!

This afternoon was her 3 week post op appointment with her plastic surgeon and it went great. Rachel has been given the green light to ditch the restraints, return to normal food, and to have her sippy cup. We didn't waste anytime, the restraints were off before our appointment was even over.

In the car, on our way to see Dr Martin, sporting a happy face. Little does she know this could be the last time she'll wear her restraints in the car again.
Dr Martin said Rachel's muscles were all there and that he was able to match them up and stitch them like a normal formed mouth. While he can't say for absolute, but because her muscles lined up, her speech shouldn't be affected. But it's something we'll have to see as her vocabulary and speech develop.

While the palate won't be completely healed until approximately 6 weeks post op, at this point, there is no chance for a fistula (hole in the palate) to occur. It's healing and looking great and the rest of the dissovable stitches should be dissolving in the next week or so.

Last week, after looking closer, and getting a second opinion from my mom, we determined that Rachel DID NOT suffer a chipped tooth in surgery. Instead the roughness I was feeling was some of the dissovable stitches poking through her gum, just below the tooth that is coming through. Dr Martin confirmed that what I was seeing and feeling is the end of some of the stitches. What a relief for her not to have a chipped tooth!

Perhaps Rachel realizes this is the man responsible for her being restrained, diet subject only to soft foods, and her sippy cup taken away for the last 3 weeks. She wasn't happy to sit on his lap. LOL.
Her next surgery could possibly be at the age of 5, when she will could have a 'nose job'. Dr Martin said it's at this age where kids become more aware of themselves and of others, and if needed, a nose job would be done to minimize the teasing and making fun that other kids can do. But this surgery is it as far as reconstructive surgery until Rachel is 6-8 years old, when she'll have a bone graft to repair the cleft in her gum.

Having packed a sippy cup in the diaper bag, I gave Rachel her sippy cup shortly taking off her restraints. She grabbed it and hugged it. Here she is enjoying her cup in the car.

After 3 weeks of not having anything but liquids and soft foods, Rachel had a burrito for dinner, followed by a snack cake. Both in which she enjoyed, in addition to being able to feed herself!! And as for bedtime, tonight is the first night Rachel will sleep without being strapped into her car seat. I put her to bed and she snuggled right down and went right to sleep. I think the lil girlie is happy to be back to 'normal'.

It's such a relief to have this leg of Rachel's journey behind us. The Lord truly had His hand on this recovery period as Rachel did awesome. Her pain was limited to a couple of days, she tolerated her restraints better than I ever imagined, and managed to deal with the frustrations of only being limited to soft foods. I am constantly amazed at how God answers prayers exceedingly and abundantly.

Monday, November 28, 2005

Enjoying the Fall Leaves

The kids on the Cul de Sac have been gathering leaves from every yard on the street and working together to make a large leaf pile to jump and play in. It was such a beautiful Fall day that we spent some time outside this afternoon. Rachel enjoyed the leaves, as well as having some outdoor time without her restraints on.

Friday, November 25, 2005

She's a Climber

Proving to us that she can indeed climb the kitchen step ladder, even with restraints on! She did the same the next day when Daddy was putting Christmas lights on the house with the big ladder!

Thursday, November 24, 2005

Moving Along at a Snail's Pace...

Uncle Bart made this rocking snail for Rachel. He brought it as an early Christmas gift when he came for Thanksgiving Dinner.

Wednesday, November 23, 2005

Recovery Day 17

Not much to report as far as Rachel's recovery goes. Everything is going great and it's hard to believe that surgery is already 2 weeks behind us.

Aside from still wearing the restraints, sleeping in her car seat, and being restricted to a soft food diet, she's prety much back to her old self. Except she has developed this spoiled brat attitude through this whole ordeal. LOL. Needless to say we're all looking forward to hopefully getting the final okay to ditch the restraints and the okay to return to her normal diet.

She's recently discovered the Little Tikes playhouse we have in the backyard and she loves it!!! It's so funny to watch her toddle from one end of the yard to the other enjoying her freedom and the great outdoors! Taking her outside has helped distract her a couple of times when she was frustrated for one reason or another.

Saturday, November 19, 2005

Some Words of Advice

For those of you who follow Rachel's Journey because you also have a journey like mine, having a child affected by a cleft of some sort, I have a few words of advice that I'd like to offer up.

If your baby was born with a cleft lip, don't be afraid to take pictures. Once your baby has their lip repaired, you'll be surprised at how attached you had become to that face and smile you came to know and love. When Rachel was 4 weeks old, I made it a point to take her for professional pictures before her lip was repaired. I've never regretted it. Taking pictures is a way to document your baby's constant change and development. For a breif time following surgery, you'll miss that 'wide smile' and you'll regret not having pictures to look back at if you didn't take any.

If your baby has a cleft palate, before the palate repair, take video of the words, noises, and babbling he/she makes. After their palate is repaired, you'll be amazed at how different her/his cries, babbling, and words will sound. We didn't do this with Rachel and it's something I wish we had done. The thought never crossed my mind. I never thought her noises would change so much.

Just some words of advice from a mom who's "Been There, Done That" and has learned a thing or two along the way. :)

Friday, November 18, 2005

Recovery Day 12

Rachel's doing good. I'm trying to get back into normal routine of eating together as a family. She's eating much more the last couple of days. I think being back on routine helps her too. She really doesn't want much to do with her bottle. Last night she took her bedtime bottle just fine. But other than that, we've been getting her to drink out of a cup. I'm sure once she's able to have her sippy cup back, she'll be off the bottle.

We had a bit of a rough night last night. Around midnight Rachel started crying. We got her up and let her stretch for a while. She's strapped into her car seat all night long and sleeps in the same position, who wouldn't need some stretching?!!?! Normally she just goes back to bed nicely. Last night she didn't. So we ended up bringing her to bed with us. Something we only do under special circumstances as both our kids are bed hogs and all over the place. Poor girlie kept trying to just get comfortable. She did end up sleeping the rest of the night. She'll be so happy when her restraints come off.

It's amazing how taking off Rachel's restraints changes her mood. We are able to take off her restraints as long as we're right there watching her closely. Last night she was so funny, she kept putting on the Darth Vadar mask!! This picture is especially funny because you can see her eyes! I discovered something pretty disturbing yesterday...I was giving Rachel some Motrin and discoverd that one of her top teeth (she only has 4) was chipped during surgery!!! While I know it can be filed, and I know it's only a baby tooth, this really frustrates me. She already has enough strikes against her when it comes to her mouth.

Rachel does somthing strange since surgery. She stores up her drool on her cheeks. She stores it up to the point where it's literally a pool of drool that flows out all at once. For some reason, she just doesn't swallow it. She swallows liquids and her food just fine. Maybe since surgery she just makes more saliva and she doesn't know what to do with it. This picture is how she looks when "she's storing up". LOL. Everyday, I am constantly reminded that this leg of the journey will soon be behind us. Despite being woken in the night, or the frustrations of not being able to just throw whatever food we're eating on her tray, this recovery has really gone well thus far. And at this point, there's no reason to believe it won't continue to go well. I'm so thankful the Lord has, and continues to answer my prayers, and the prayers of many others, that Rachel's recovery is going so smoothly.

Tuesday, November 15, 2005

Post Op Appointment / Recovery Day 9

It's hard to believe that this time last week, we were sitting in a hospital room, waiting for the swelling in Rachel's tongue to diminish.

We saw Dr. Martin for Rachel's post op appointment this afternoon and it went well. He looked inside and said her palate is healing well and looks great for it only being a week post op. I asked him about possibly giving her sippy cup back, and he said not until he sees her again in 2 weeks. Same for the restraints. One final look at 3 weeks post op to make sure everything has healed and no fistulas have formed before giving her hands and sippy cup back. So we see him for a 3 week post op appointment in 2 weeks.

As far as Rachel's recovery is going, she's getting better with each day. Her pain seems to be diminishing. Her last dose of Tylenol with Coedine was yesterday morning. This morning, we tried regular Tylenol, and that seemed to have done the trick. She also drank an entire 6 oz bottle this morning. Which was a nice way to start off the day, with some fluids in her. Although she hasn't wanted any more fluids since then. She did eat some cottage cheese and yogurt at lunch. I'll be so glad when I can just give Rachel her sippy cup and can give her the food she wants.

Having the arm restraints on, doesn't stop Rachel from going, going, going all day long. She's still managing to toddle about and get into things. Since her surgery, and the swelling has gone down, Rachel holds her mouth differently...It's basically closed all the time. Which changes the look of her face. She's also not smiling like she was prior to surgery. Sometimes she looks so depressed. I'm sure once those restraints come off and she's back to eating real food again, smile and be back completely to herself.

As far as eating, still not drinking a whole lot. I did ask the doctor if there was a certain amount of ounces she should get in a day. He said the more important thing to watch are making sure her mouth stays moist, her energy level, sunken eyes, etc. So she's doing just fine to the doctors standards.

Rachel is still sleeping strapped in her car seat. There's been a few nights where she gets up in the night for a stretch and a snuggle and then goes right back to bed. It has to be terribly uncomforable sleeping in the same position all night long, strapped in. I might try one of her naps tomorrow without the car seat and she how she does. She'll probably do just fine and manage to be all over her crib despite the restraints.

We're so thankful for one week of recovery to be behind us. One week down, two to go.

Monday, November 14, 2005

Pudding Face

One of the things we tried a few days ago was chocolate pudding, which Rachel loved. After finishing half a carton of yogurt this afternoon, she appeared to be on a roll, so I offered her more pudding, she finished that off as well! I'm sure she has to be hungry. Yesterday, she ate a jar of baby food, so this afternoon, I asked my friend next door if she had any jars of food in her cupboards I could have. She did, and Rachel polished off two jars of baby food and almost half a glass of watered down juice. Whoo Hooo. That makes me happy.

Desperate Times call for Desperate Measures

Rachel still isn't taking in enough liquids as far as I'm concerned. So today...I had the brillant idea of going and getting her an ICEE. LOL. I fed it to her on a spoon turned sideways, and she liked it for a few bites. At least it was some liquid. :)

Sunday, November 13, 2005

Recovery Day 7

It's hard to believe that tomorrow will be a week since Rachel's surgery...time flies when you're having fun huh?? LOL.

Last night was the first night since surgery that Rachel didn't wake up in the night. She slept her normal night from 8-6, still in her car seat all strapped in. She seems to not mind sleeping in her car seat.

I've been reading the cleft message board to see how other babies did post palate repair. And after reading several of the posts, I do believe Rachel is having a drinking strike. She really wants nothing to do with her bottle or any liquid that is in it. We can't use her sippy cup, so this morning I've been using the dropper method with a straw, giving her watered down White Grape Juice. She seems to like it , and so far it looks like she's taken about an ounce and a half. This whole not taking in enough liquids is so frustrating to me because I know how quickly babies can dehydrate. I'm trying my hardest all day long to get her to drink. I've done the usual milk in her bottle, last night Steven even made it chocolate milk, chicken and beef broth, and water. I think she's just plain tired of being given the bottle. Prior to surgery she was down to only 2 bottles a day and the rest was all food. She's our little eater. I'm glad we see the plastic surgeon in 2 days. He'll be able to tell us how things are healing and maybe give us the okay to use her sippy cup.

Saturday, November 12, 2005

Finding Encouragement in the Cleft World

Last October, while visiting a Cleft Lip and Palate message board, I read a post with a link to website. It was a blog journalizing the story of her daughter, Emily who had been born with a bilateral cleft lip and palate. Seeing her blog was what inspired me to create Rachel's Journey.

Over the course of the last year, Emily's Story has been a huge source of encouragement to me. Not only that, but it's been a site that I continually go to for reference. Jackie, Emily's mother, has been a huge source of help, inspiration, and encouragement through her blog and through her emails. The names 'Emily' and 'Jackie' are common household words around here, especially this week, being post op.

This morning, as I was viewing Rachel's guestbook, I encountered a private entry, only viewable to the guestbook owner. I was so blessed to have this mother leave her entry. She's recently given birth to a son, where just like us, his cleft was a surprise and complete shock. She told me what an inspiration Rachel's Journey has been and that because of Rachel's Journey, they are developing a better understanding for what lies ahead of them and their son's journey.

I am thankful Rachel's Journey was able to be a source of perhaps encouragement to this mother. Emily's Story has been just that for me, and I'm so blessed to have done the same for another.

One Smart Cookie

When Rachel had her lip fixed in January, we quickly realized just how much easier it was to administer her medicine when her lip was cleft. All you had to do was just stick the syringe into her cleft and that was it. Following her lip repair, it was a little harder to give her medicine because her lip was closed. We no longer had that hole to push it into.

Now, her palate is fixed and the lil stinker already knows how to use that to her advantage! She now pushes her tongue to the top of her mouth and somehow spits the medicine back at us. LOL. It's a struggle to get her antibiotics and pain meds in her. It's amazing how smart kids are!

Friday, November 11, 2005

Cruising...on a Friday Afternoon

Gracie got her own set of wheels this afternoon. Now her and Rachel are able to cruise at the same time!

Recovery Day 5

It's been 5 days since her surgery and Rachel is continuing to do well.

She's still drinking from her bottles, although not always smoothly. I think it's frustrating to her to only be getting liquids. Prior to surgery, she was down to only two bottles a day, the rest of her nourishment was through table food and meals with the family. One of the most challenging things we are dealing with as a family, is trying not to eat food in front of her. So we've not been eating any meals in front of Rachel or as a family at the table. Last night I gave her some chocolate pudding on a Gerber baby spoon, barely touching the pudding to the top of her lips, so the spoon wouldn't go into her mouth. She was very excited to have something other than milk or water.

This evening, after changing her diaper, and it being dry since early afternoon, I put chicken broth in her Haberman bottle, in attempts to get more fluids in her, and she liked it...she drank 10 ounces!!! What a relief to get such a good amount of fluids in her at one sitting. We see her plastic surgeon on Tuesday for her one week post op appointment and I'm hoping that once he checks out her mouth and sees how it's healing, she can be cleared to eat some more foods.

While she is pretty much back to normal, she does has her moments through the day of being whiney and clingy. Which by all means, she has every right to be, she's been through quite a bit this week. As far as her pain control, she's still getting a couple doses a day of Tylenol with Coedine and sometimes regular Tylenol in between. Once the meds kick in, she's usually good to go for a while longer.

So far, the restraints aren't slowing Rachel down. She's getting around pretty darn good with those things on!! She has them off the majority of the day, with us watching her very closely. But naps and bedtime are for sure times when she has her restraints on.

Overall, just 5 days after surgery, Rachel is doing really well.

Thursday, November 10, 2005

Sleeping in Style...

First Night Home

Rachel's first night home went great!! We decided to put her in her car seat and strap her in. Thinking this would eliminate the frustration trying to turn over with restraints on would give her. She got up only once in the night for some water and snuggling and then went back to bed with no problem.

This morning she ate just about her entire 8 ounce bottle with hardly any fussing. It's such a relief to see her drinking so well. It will save me from the worry of her dehydrating.

We had her restraints off from the time she got up until she went down for a nap. She is soooo happy to be home. She went from room to room making sure everything was in place. She's happy to have her toys. She's happy to be able to roam free on the floor and walk about.

It's so nice to have our Rachel back and home!

Wednesday, November 09, 2005

We're Home!!!

We're all home from the hospital!!!!

Rachel's tongue swelling is totally gone and is back to normal. And she's pretty much already back to her happy and spunky self, aside from some fussing when she eats. But even that is getting better with each feeding. She's eaten 4 ounces just in the last 10 minutes!!!

She's dealing with the restraints good so far. Not sure how she's going to sleep with the restraints. When she had her first two surgeries, she was small enough she slept in her infant carrier. Now she's used to turning, sleeping on her side, etc. She's not going to sleep well with the restraints. So we've brough her car seat in from the car and will try that tonight.

Just wanted to thank everyone again for all their thoughts and prayers for us the last several days. We are truly blessed.

Tuesday, November 08, 2005

Evening Update - Day After Surgery

Thank You again for all the thoughts and prayers. We sure appreciate them and would appreciate them continuing to come our way! For those of you who've felt phone messages, Thank You! We hope you understand us not being able to get back to everyone. But we're working on it.

Rachel was doing pretty good this evening overall. Some general fussiness, but we found out it was due to regular Tylenol being given for pain, instead of the prescribed 'good stuff'.

This afternoon the resident physcians (gotta love a teaching institute) decided to put a hold on Rachel getting any further IV fluids in hopes that it would make her thirsty and she would want to drink. To make a long story short, she was drinking this evening. We tried everything, her Haberman, plastic cups, a water bottle, and the I got small medicine cups from the nurse. Poor girlie, she's such a water drinker and you could tell all she really wanted was her sippy cup. Anyways, the important thing is she is drinking. Please pray it continues. It's an important factor on whether or not she'll get to come home.

Her tongue swelling is going down nicely and perhaps by morning her tongue might fit back inside her mouth?? LOL. You can tell it's getting back to normal as her cry is not muffled as it was yesterday, etc. Who would have ever thought after all my online research I never heard once of this complication?!?!?!

Pictures - Post Op Day 1

This picture was taken this morning. Swelling in her tongue is going down...little by little. Her overall facial swelling is going down too. Although around her mouth, especially in the corners, where they had to stretch her mouth to get into there, there are some chaffing sores.

After having her IV fluids stopped, we were able to take Rachel for a stroll around the unit in one of the many wagons that have been dedicated to the Children's Hospital. She loved it!

Pictures from the Big Day

This picture was taken in the Pediatric Observation Unit. This is where we are taken to prepare for heading to surgery. Rachel was sooooo excited to see that they had cars to play in! Once she was gowned up and all the final assessments and questions answered she was happy to play!

This picture was taken several hours after surgery. The blood from her nose is just drainage, nothing to worry about. Somehow, this picture just doesn't do justice in showing just how swollen her tongue was. It's been in a constant sticking out like that since. It's S-L-O-W-L-Y retracting back to how it should be.

Update from the Hospital!

You wouldn't believe the trouble it's been trying to find someone who knows anything about the internet and whether or not you can access it!!! Come on...this is the day and age of technology!! I can't possibly be the only one who needs to access the internet while their loved one is in the hospital!

Steven actually was able to pull up 10 wireless internet server thingys just within the hospital, but we have no username or password. GRRRR.

So here I am, happy as I can be to sneak away and find a computer that accesses the outside world!! LOL. I'm in the Medical Library. Nice place!

Anyways, on to Rachel. Just as my parents updated on the Carepage, surgery went well. They repaired the entire cleft!

We had a good night. We both got some sleep. We were the only ones on our side of the room, there were 3 others on the other side of the wall. But everyone was considerate and had the lights out early and everyone got sleep from time to time.

Rachels tongue is still swollen this morning. The swelling has gone down a little bit. She's had two doses of the steriod that is suppose to help in decreasing the swelling. Unless her tongue is back to normal and she's eating by the time I get back to her room, we won't be going home today! Her tongue is too swollen to be sent home. Sure wouldn't want it comprising her airway. And while she did take about an ounce of water from her special bottle, it's difficult to have the desire to want to eat when your tongue is huge!!!

She's in great spirits this morning considering her tongue is in a constant state of sticking out, her arms are bound, and she's got an IV, and another cord to monitor her oxygen levels. LOL. I'm trying to stay aware of her pain and making sure she gets her pain meds on a regular schedule just to stay on top of the pain. So far so good.

We're all doing good. Hospital time would go by much quicker if you could just get online and surf the day away for hours on end. But this place, despite such medical advances, is still in the dark ages as far as technology! LOL

I'm going to sign off and go answer some email. Thank you all for your thoughts and prayers....they are so much appreciated!!

Sunday, November 06, 2005

Keeping Updated while at the Hospital

We didn't make it to the hospital to assess the ability for wireless internet connection. So I wanted to post the alternative plan for updating while at the hospital.

Ultimately, I want to post updates here, on Rachel's blog. However, if you don't see any updating posts here, I've set up a CarePage, which is a service made available through the hospital. You will need to register with a sign in name and a password. Rachel's Care Page name is~~~> RachelFraser. Make sure there are no spaces in her name when searching for her page.

Unfortunately, if there are no updates at either location, then we weren't able to acess the internet or the special service through the hospital was unavailable.

How the Palate is Repaired

I've had a couple of people ask me how a cleft palate is repaired, so I thought I'd share this web site, Cleft Lip and Palate Repair, I've used it many times over the last year for reference. It's a great site because it has diagrams as to how the procedures are done.

Some Final Pictures Before Surgery...

Rachel LOVES this car. It's a toy leftover from Hannah. She points to it often when we come and go in the garage and wants a ride around the Cul de Sac. I'm sure it'll be something we use alot of in the next couple of weeks with Rachel in restraints. Enjoying her last solid meal of the night. Poor girlie, little does she know this is the last meal she'll truly enjoy for a couple of days if not a week. She's messier than usual, because tonight she decided she could feed herself with the spoon. And I must say, she did pretty darn good with it!!

Saturday, November 05, 2005

Baby in a Box...

Rachel and Hannah love this box. It's a box I got two weeks ago at Costco. Here Rachel is sitting and watching a cartoon. She's perfectly content.

Friday, November 04, 2005

Surgery is Confirmed!

Received a call this afternoon from the hospital, confirming arrival time and surgery time.

Surgery is scheduled for Monday, November 7th at 7:30am. The surgery should take approximately 2 hours according to Rachel's plastic surgeon.

I've been researching whether or not the hospital has wireless internet so that I can post updates. The verdict is still out on if we can or not. We're considering making a trip to the hospital this weekend to determine our possibilites. If not, I'm working on an alternative route of being able to everyone informed. I'll let you know before the weekend is over.

Thursday, November 03, 2005

New Facial Expressions

Rachel's been expressing some new facial expressions lately and they are really cute! I can't quite describe them, but it's really encouraging to see her make these expressions because she is using her upper lip muscles. Which is so encouraging because it proves her lip muscles are loosening and working properly!

I'll try getting some pictures of her new expression so I can share.

Tuesday, November 01, 2005

A Day of Pre Op Appointments

We had Rachel's Pre Op Appointments today.

First we met with her plastic surgeon. Went over the procedure once again, answered any of our questions, had us sign consent for the surgery, etc.

From there we saw the ENT, or shall I say, the nurse practioner for the ENT who will be placing the tubes in her ears. She went over the procedure, answered any questions, and had us sign the consent for that procedure as well.

And lastly, we went over to the Children's Hospital where the surgery will take place. Did the financial clearence stuff and then proceeded to have Rachel checked out by the Nurse Practioner in the Pre Admission Department. Everything checked out just fine and she's cleared for surgery!

Now to just keep her healthy until Monday. As I am battling a cough and sure don't want to pass it on to Rachel. Prayers would most defianately be appreciated!!!