Thursday, January 29, 2009

I am here...

I am really sorry for not updating this blog in so long.....I will organize my photos soon and get some pictures up real soon. Thanks for being a faithful follower.....

Sunday, October 12, 2008

Another palate look...

Reid never opens his mouth long enough to snap a pic of his palate. But, he was in rare form today, and I snapped this in the car this afternoon! It's a good before pic of the palate before surgery Thursday. Compare this pic with the lower one. He definitely has had some positive movement over the last 5 months. His palate has closed up somewhat as he has grown.

Saturday, October 11, 2008

5 days and counting....

This picture was taken in May o8 prior to Reid's lip repair surgery. This is one of the only good shots I have of Reid's open palate. I know, he wasn't happy here...and it is sad to see...but it does show a great view of his palate!!!!! I have had so many people ask me about his palate, what it looks like, and what surgery will entail. I just wanted to show you a good visual...and show you how amazing it is that the kid can eat virtually "normal" and does so well! I will be excited for no more cheerios to fly out his nose at breakfast and for the toast sneezes to end. Reid has come a long way....and in 5 short days, we will head to the next phase of this journey with his palate surgery and gumline revision. We will keep you all posted as we progress through the week. Keep us in prayer. Reid is battling double ear infections right now. I just want him well for the surgery to take place. We hope for a full recovery from the ear infections....and plan to continue with surgery on Thursday unless we find out otherwise. Keep your fingers crossed for us....and your toes, too!

Sunday, September 28, 2008

Could this be the end?

Well, Reid is starting to wean himself from the bottle a bit. He is not really all that excited about it. He just wants solids when he is really hungry. We are working with putting the formula in a cup a bit more, which he is not totally crazy about. I am just wondering if this would be a good time to go ahead and work on changing him over slowly to whole milk. With Ellie, we waited until she hit her 1st birthday. Reid is close. He will be 11 months next week. If we are going to do this, I want to just bite the bullet and get this done before palate surgery. Reid takes 3 bottles a day...maybe. I am thinking that this would be a nice time, since he is not terribly interested, to begin switching over. I gave him 2 ozs. of whole milk mixed in with his formlua today to begin the switch. Have I serioulsy bought my last container of formula? Could it be? Any tricks out there cleft families on switching over? Is this bad to do before palate surgery or helpful? He has to be off the Haberman before surgery day. So....I think I am going to try this and see if we can actually be done with the bottle in the next week or so. He is very excited about yogurt now and is also enjoying cheese and bites of bread. Have we actually turned the corner??? Wow....more updates soon. Wish me luck!

Friday, September 12, 2008

Plastic Surgery appointment- Preparing for palate repair

Reid's mom here....what a great day it was! We traveled to Cleveland this afternoon to meet with Reid's plastic surgeon for a post-lip repair visit and a pre-palate repair visit. First of all, you have to know our surgeon to appreciate this.

Dr. Gosian is the most gentle, mild mannered, considerate, humble doctor I have ever met. Truly. He is genuine and he truly cares about his patients. After the lip repair when I first saw Reid, through tears, I thanked Dr. Gosain in the recovery room. His comment to me was, "Thank you for allowing me to work on your son." Then, he gave Brian and I time alone with Reid to take in his new face. So, today, when we were waiting for Dr. Gosian to come into the examining room, I was anxious to see what he would say. Would he tell us the stents did their job? Would he be upset that we quit using them after 3 months? Would he say the lip looks as good as we think it looks? Are we doing everything we are supossed to be doing for Reid? I was anxious. Dr. Gosain walked in, greeted us smiling, got down to Reid's level, and said, "Wow....his lip really looks good." YES! We thought so....but to hear that from our surgeon was music to my ears. He looked Reid over, and was really happy about his nose. He thought it really came together nicely, and the stents did help in stretching out his skin under the nose. He commented about how uniform and symetrical everything looks. Reid's front gumline is also ready for revision since nothing was done to it during the lip repair.

We were happy with our visit. Reid had lots more pictures taken of him from about every angle and was a trooper for the whole visit. He flirted with his favorite nurses...and gave lovies to as many as would take them! We are on track for an Oct. 16 palate repair date for surgery. We are not first thing in the morning....but close. Looks like a 10:30 start time. Not terrible, I guess. I like getting there to get things started as quickly as possible, though. Now our next challenge will be getting Reid off the bottle prior to surgery. Our surgeon would like Reid to be only on a sippy we will work on that. Reid does a sippy now everyday...but he also loves that bottle! We will work on this goal soon! So much to be thankful for. It was a great visit....and allowed us to breathe a little easier. Oh, yeah....we got the official word that the taping and stents are totally done now. Now, I can truly breathe easier....and so can Reid. Finally.

***Sidenote....Reid was weighed today at the doctor. I just have to laugh. The kid is HUGE. And I wouldn't want it any other way. Weighing in at 24 pounds 7 ozs. and 30.5 inches long. As I said....the kid is HUGE. He is about 6-7 pounds heavier than what Ellie was at this same age. HUGE! : )

Saturday, September 6, 2008


Happy..... I love the baby blues!

Really happy! 2 bottom teeth now! They seem to be in good position right now. Let's pray that continues!

Concerned and wondering where Ellie is.

Curious about the camera. And everything else as well!

Simply cute.

We have a palate surgery date of Oct. 16 as of now. We will go see our p/s next Friday and so we will know more then. Reid's palate has considerably grown together over the past few months and only has about a 1/2 in. gap or so. It was much wider than this at birth. We are thrilled with how his lip has progressed. Feel free to double click any picture to get an up close and personal look at his lip. We always thought that he looked good....and now...he just looks even better. I am anxious to see what our team thinks of Reid...and if they think that the stents have made any improvements in his nose. I am going in with an open mind...and will see what everyone says. I pray that the stents can stay out. We have not used them since I have been back to work. 3 months was enough to endure. More updates soon.....

Wednesday, September 3, 2008

Reid's surgeon.....a part of a Dr. Phil Story...

Dr. Phil ran a story that aired yesterday (Sept. 2, 2008) that involves a little girl named, Teeba. She has an amazing story of being hit by a roadside bomb in Iraq.

Here is little Teeba. The reason she is near to our hearts is because her plastic surgeon is Reid's plastic surgeon. We have seen Teeba in Dr. Gosain's office before.

Here is Teeba on the Dr. Phil show yesterday. You can read about her story below.

More pics of Teeba on Dr. Phil.

Here is Teeba's plastic surgeon, as well as Reid's plastic surgeon, Dr. Arun Gosain. I feel so lucky to call him "our surgeon". God is so good. Please read of Teeba's courageous story below. It's one that is worth your time.

Text below taken from Dr. Phil's website- from show date 9-2-08
“She had the saddest face. And whatever it was about her face, it just compelled me. I couldn't get it out of my head,” says Barbara, describing 6-year-old Teeba. Barbara first learned about the Iraqi child in July of 2006, when she read an article about children in Iraq who needed extended surgeries. The doctors were fleeing the country. Teeba had been the victim of a car bomb. “I e-mailed the correspondent in Baghdad,” Barbara continues, “and said 'If I can get her the help that she needs, would you talk to the family?' and he agreed. Ironically, Teeba arrived one year to the day after I first read about her. She came with her grandmother because her mother had just had a baby.” “When Teeba got off the plane we both looked at each other and just started to cry," recounts Tim, Barbara’s husband. Barbara recalls the day she met Teeba at the airport. “When I first saw her, I didn't see the scars, and I looked at her, and I thought you are just so beautiful and precious,” she says. Barbara and Tim arranged for Teeba to meet with Dr. Arun Gosain to talk about her surgeries. During his meeting with the child, Dr. Gosain asked her to move her head in a variety of ways. “The major issues that she's pointed out that are bothering her are, of course, her neck range of motion,” he says. “She feels a little tight.” Dr. Gosain invites Teeba to ask whatever questions she likes, and through a translator she wonders if her face will be beautiful. “It will take a lot of surgery,” the doctor replies with candor, “but certainly each time we do surgery we're going to try to make her more beautiful than she already is.”

Barbara recounts that their next appointment was at Wigs for Kids, where they fitted her for a wig, and she and Teeba chose a color. “All she wanted was a wig so the kids wouldn't make fun of her when she went to school,” says Barbara.
As little Teeba takes her wig off and puts it back on, Barbara exclaims, “Ah, Beautiful! You're beautiful with your wig and without your wig, you know that? Come here.” She embraces the child. Barbara explains that Teeba has had five surgeries so far and will need tissue expanders done three more times. Tissue expansion will provide the doctors with additional skin to put on her face.Tim says of Teeba, “If we have a new friend over, she'll say to them, 'Did you notice I got my face? I got burned in Iraq,' and that the balloon on her neck, 'This is my new skin. We're going to put it on my face.'” “Sometimes people will look at her, and she'll say, 'Don't be afraid. I was just burned,'” says Barbara. “We encourage her every day by telling her her new skin is beautiful. We rub it. We touch it. You can just see the gratitude in her eyes.” Barbara notes that Teeba’s English has become fluent over just a couple of months. By way of example, Teeba thrusts one tiny cheek forward and says, “Mommy, why don't you give me sugar?” “Oh,” says Barbara with a kiss. “I'll give you sugar.” “If you talked to her and looked at her, you would swear that she hasn't had any bad experiences,” says Tim. “She's just like any other 6-year-old girl.” “She's starting swimming lessons,” says Barbara. “She has made friends. She loves the snow.” “We didn't know a little 6-year-old was going to come in and steal our hearts and captivate our day and our time,” says Tim. “It was a love affair that started early and just never ended.” Barbara adds that they express their love for one another verbally. “You're my girl, huh?” she says to Teeba. “You're my mom,” she says back.
“She looks like she's just the happiest, most vibrant child in the world,” Dr. Phil says of Teeba. He praises the couple for giving her such a soft place to fall.

“Most people don't even know she's from Iraq,” says Barbara. “She has really absorbed American culture. And she's very loving, and she's very giving, and she shares. She's just been the highlight of our life, and I really think that we are getting more out of it, almost, than she is.”

Dr. Phil asks Tim, “Was this a difficult decision for you at the time? Did you wrestle with it and think about what am I getting into here?”

“We are now just taking it one day at a time,” he says. “We're trying to look at getting her through the first surgery, and just making each day as happy as we can for all of us.”

Dr. Ordon has spoken with Teeba’s pediatric plastic surgeon, Dr. Gosain, at the Rainbow Children and Babies Hospital in Cleveland. “What's in the future?” asks Dr. Phil.

“They're in great hands,” he says. “This is a plastic surgeon who has dedicated his life to helping kids. You see this thing in this child's neck, and you think that it's some tumor growing there, but it's a device like this that has been slowly inflated like a balloon over time to stretch the skin.”

Pointing out that Barbara and Tim haven’t asked to talk about the money involved in supporting Teeba, Dr. Phil says, “There are a lot of funds that are going to be important for her future in terms of education and things of that nature, correct?”

“Absolutely,” says Barbara. “In addition to the plastic surgery, she needs to have her ears reconstructed, she has a nostril problem.”
Dr. Phil invites Teeba to come out and join the conversation, and when she approaches the group, Barbara sweeps her up and says, “My little monkey.” Dr. Phil introduces himself to Teeba and asks how she learned English so fast. “I don't know,” she says with a shrug. “Just kind of did, huh?” says Dr. Phil with a chuckle. “And what other language do you speak?” “I'm trying to learn Spanish,” she says. Dr. Phil says he heard that Teeba likes Barbie dolls. “Well, I actually called Barbie. Did you know that?” he asks the child. “And she sent me a letter, that I have right here,” he says, extracting a hot pink envelope from behind his seat. Teeba looks it over. “I can't read it but — “ “I know, but I'm going to read it,” says Dr. Phil. “You see your name right there? It says 'Hey, Teeba. You are such a brave little girl. Thanks for being so special. I hope you love all of these fun presents. They're my favorites.' And it's signed 'Barbie,' right there. What do you think of that?” “Can you believe it?” asks Barbara. “And look here,” says Dr. Phil, gesturing to a couple of wagons full of toys as they are carted out. “We've got some presents for you, OK?” “Oh, my God. Look at all this!” Barbara exclaims.

Dr. Phil invites Teeba to take a closer look. “What do you think? You think you might want to take that home with you?” Looking over the loot with awe, the girl nods. “And look over here. Look at all of this Barbie stuff over here.” Dr. Phil chooses a package from the display. “This is something that I have no understanding of,” he says lightheartedly.Among the stash are two dolls from American Girl. “One of them is in a karate outfit because you like karate, don't you?” Dr. Phil explains. “Now, there's something else that you don't know about either. It's called a Barbie Jammin' Jeep.” As he speaks, a young woman drives a child-sized pink Jeep onto the scene. “You can drive that back to Cleveland!” says Dr. Stork. “I can't,” says Teeba earnestly. “I have to go on an airplane.” “Very good!” says Barbara with a laugh. Dr. Phil tells Teeba that she also has a date for dinner with Ariel and some of her Princess friends at Disneyland tonight. “And, of course, we didn't want to forget Barbara and Tim,” says Dr. Phil. “We are going to give you guys, just the three of you, six days and five nights all-inclusive vacation to Azule Beach by Karisma on the Riviera Maya, Mexico. They offer excellent in-room amenities and contemporary accommodations overlooking the ocean, and they have kid-friendly activities, so thanks, Karisma Hotels.” If you would like to make a donation to help Teeba, visit the

Saturday, August 23, 2008

Stents.....3 month mark

Well, we have just about reached our 3 month mark with the stents. I am thrilled that we made it this far. I just remember back to when I didn't even think we would make it 3 hours let alone 3 months. We have done it. We have not used the stents this past week much at all due to trying to get into our routine with me back at work. He has not gone to the sitter with them in at all. I just refuse to put him through that mess so early in the morning to reapply all the tape, Mastisol, and clean Reid all up. It's a long process and one that Reid hates. I am not willing to wake him up and put him through such things. Not after we have made it so far!!! We don't have an appointment until Sept. 12 to see our p/s. I really don't see us using the stents much anymore. Our p/s did say that he wanted Reid in stents for 3-6 months.....but with having the NAM and using stents with that prior to wearing these latest nasal stents..I think Reid has paid his dues. (and us, tell the truth). It is so nice to see REID....not all the tape and gunk that we have used since literally he was just new. 9 months of tape, Mastisol, stents, the NAM, steri-strips. more Mastisol, more get the idea. We are hopefully hanging up our tape for now...and we are enjoying kissing those cheekers...tape free. Until next time....

Wednesday, July 30, 2008

First tooth or third tooth?????

Well, it's official....Reid has popped through a tooth! His bottom right has come up. It is so cute! I forget how cute little ones look with just those first couple of teeth!!!! I call this tooth #1 or #3? His first 2 top teeth really are through....but are so decayed that I don't know if I can call them teeth or not! This one seems to be in good placement, and hopefully that will mean good things for his bottom teeth...hopefully! Fun to see them coming in little by little. He was fussy through the night on Sat. and I just thought it was being fussy!!!! Well, maybe this was the true reason! Quite a trooper...because I didn't even know it was coming. It was a total surprise to me! I am sure there will be more to follow eventually!

Taping over the lip.....DONE FOR GOOD!

Well, today marks Reid's first day with NO TAPE over his lip area. In this picture, you will see a naked face as I call it. No tape, no stents, just Reid! Now, yes....we are still using the stents, but this was this morning before I put them in. Reid is obviously happy about his "naked" face....and so am I! He is looking good. Now the massaging of the scar starts. Wonder how that will go? Updates later!

Side view of lip area. Minimal scarring...and looking good! Double click either picture for an up close look. Pretty amazing, huh?????

Tuesday, July 29, 2008

Reflux = Laundry

Ahhhh, Reflux. I don't think I have posted about it before. Probably because I was too busy trying to get the spit up off the carpet, furniture, Reid, and anyone near him! As you can see by the picture, this is what Reid goes through on a typical day....just his bibs and burp cloths, mind you. I didn't even factor in the multiple outfits he is in daily. He has been on meds since about 10 days old. He started with Zantac and after repeatedly upping the doseage with little help we went to Prevacid at 4 months old. Then, at 5 months, we upped the dose on that as well. Does it help? Well, yes and no. Reid had lots of burning as he ate when he was really little. Classic signs were the arching of the back during feedings and screaming in pain. He was hungry, but everytime he would go to eat, the screaming and arching would begin. Then, the spit up. The neverending spit up. I know to keep him upright for at least an hour after eating, or else everything comes up. I know that if we are going in the car anytime near a feeding (up to an hour) when I get him out of the car, he is going to blast all over me. That's just the facts! His burning sensation while eating is gone. I think the meds help with that a lot. The spit up.....maybe the meds help a bit, but we haven't seen much change with that. Reid will be 9 months in another week, and I will be so glad to see the day that I don't have to have a bib around his neck every second of the day. Brian hates the spit up. It is just constant. I know that it will pass.....but it just is one of those things that is such a pain. I see all these babies who NEVER wear bibs....and get to show off their cute day. Not trying to be a total complainer here....but the Reflux has been bad from the start....and I am ready to see it end. Hopefully sooner than later.

Friday, July 25, 2008

Teeth issues I knew from Reid's birth that he may have major teeth issues since his cleft was so large. We were told soon after his birth that his cleft housed 8 teeth. Yes, 8. 4 baby teeth and 4 permanent teeth. Hard to believe. Anyway....during the NAM process, we noticed what we thought to be 2 sores from the NAM. After the dentist saw us that week, we were not happy to find out they weren't sores....they were baby teeth. They probably came to surface around 4 months of age.

Now, here we are...Reid is almost 9 months, and the top 2 teeth are down. They are his only teeth at this time, but they are black. It is hard for me to get a picture of this....maybe someday I will be able to snap one to show you. Our dentist knows about this and is watching Reid. He didn't think they were well rooted, and we feared what we still fear....Reid will lose those 2 top teeth. I know it isn't the worst thing in the world....but to not have your top 2 baby teeth until the permanent ones come in....I hate that. I don't know if anything will be done for Reid until his permanent teeth come in or not. Wait and see, I guess. Most of the cleft families that I speak to, their kiddos' teeth look so good!!!! I am always impressed! So, if any of you have experience with rotting teeth and the process involved with this....feel free to share your experiences with me. I am new at this situation...and am wondering what we are facing. Regardless....Reid's smile is priceless....teeth or no teeth!

Sunday, June 29, 2008

Feeding...a process to say the least

My helper feeding Reid.

As long as Reid is being fed, he could care less who it is doing it!

Ahhh....feeding the cleft baby, never an easy task. We struggled from day one with Reid, and that was only with liquids. We have added a whole new dimention with solids. As you see, I have my own little "Mommy's helper" who wants to be in on ALL the activities with Reid. Ellie is a great help.....just sometimes, it's nice to avoid the mess. I try to tell myself, though, that I would have LOVED to have helped with the feeding of a little one when I was young, so I let her help out a lot.

Anyway....some tips that I found to work well. We skipped stage 1 foods entirely. We went straight to 2's. They are a bit thicker and seemed to get down a bit easier. I found anything with asorbic acid was HORRIBLE coming out the nose. Most fruits, except bananas, have this acid in them (vitamin C). Reid would have fruits coming out his nose, and the session was over because he hurt so badly. I swear, Texas probably heard him crying from Ohio. I also found that when Reid's lip repair was complete.....we had VERY little food coming out the nose. Yes....totally true. We rarely have food come out during a feeding anymore, except when it gets caught in limbo between nose and palate....then watch out....the sneeze of all sneezes blasts sweet taters all over creation! But that is the only time we have a mess out the nose anymore. I think because he is older (8 months in a few days) and his palate has come together a lot in the last 2 months. His gap has closed considerably as he has grown.

Anything liquid, like juice or water, is hard. That seems to come out the nose pretty quickly....but formula gets to the right place. We never have issues with formula coming back out the nose, even with feeding with the open palate. Probably because he is tilted back in such a manner that gravity helps. Feeding liquids in a high chair isn't pretty for Reid! It's everywhere! So, my advice on solids....go slowly....take your time....if a feeding is done after 2 bites, that's ok....we started at 6.5 months and really took our time....I don't have super high expectations for each solid feeding...whatever happens, happens. The thicker, the better for getting it down. I also have thickened some fruits and more watery veggies with cereal. Sounds gross to put rice cereal in carrots...but it did help him get those down when he was younger. He does well now. His tongue is stronger and he really works it back now. Amazing what a couple of months can do. The bottom line is...they will do what they can. They know when it hurts and how to tell you. I tried to have an open mind and allow Reid to call the shots. So good. He's definitely thriving. 21 plus pounds at 8 months....yeah....he is doing just fine!

Sunday, June 22, 2008

Yes, it's true...

Ok, so when you have a child with a facial difference, or any difference for that matter, people are going to say some pretty dumb things to you. I have realized that it is just easier to smile, walk away, and remind myself that some people are just going to say things no matter how much you try and educate them. So, here are some comments that have been said to me or one of my cleft affected family friends over the past 7 months, and yes, they are all true.

"Oh, doctors can do such wonderful things now a days. He'll look normal one day."

"Just be glad he wasn't born 50 years ago. He would have to look like that forever."

"Mommy, what is wrong with that baby?" Mom responds to young daughter, "Oh, honey, that babies mommy did drugs. That's why he looks like that."

"I am sorry he was born that way."

"Doctors can work miracles. I am sure he will look fine later on."

"I just can't stop looking at his lip. It's just so odd to see something like that."

We loved Reid's first face from the very start...and miss seeing it. We love his new face and smile, but it's amazing how attached you get to that wide grin. I am amazed at the reactions of some people towards Reid. One of those comments from above was spoken to me by a doctor. Not a medical doctor, but none the less, a doctor. I was astounded that this was spoken of him/her. I am still amazed at the ignorance of some, and nevermind how these comments made me feel as a mom to a beautiful cleft baby. I guess what we looked at as "normal" some could not. Again, I am going to stand strong and say, this is why not all people are cut out to be the parent of such a wonderful gift. It is my goal to show people that Reid is Reid...not "the cleft kid...or the cleft baby." He's Reid, he's perfect, and we are so glad he was given to our family. Ok, I am off my soapbox now. Enough said!

Thursday, June 19, 2008

June 08- Post Op and addition of Nasal Stents

Here is our little guy. His lip looks incredible. He hates his size 5 stents, but is managing. He will wear these for 3-6 months to create the skin under the nose and stretch as much as can be stretched. His scar from his surgery is minimal and amazes us!

Looking good! We will tape the area on top of the lip until late July.

Mommy and Reid. Love you, and we are so proud of you!

Lip Repair Surgery- May 27, 2008

Reid and Daddy ready for surgery. Our last look at that wide smile.

Our first look at you after surgery. You look GREAT. Look at that lip! It's perfect.

Love that new face!

2 days post op. Looking so handsome!

May 08- NAM device has done its job!

Linda- a nurse with our team

Chris- a nurse with our team

Chandra- the gal responsible for adjusting the NAM each week. Thank you all for your help and guidance over the past 4 1/2 months! We love you all!

My how your NAM grows!

Feb. 08- Nasal Stents put on the NAM

Late Feb. 08- Bar put across nasal stent to add more pressure to the lip.

March 08

March 08

April 08

Late April 08

Fitting for the NAM (Nasoalveolar Molding)

Our dental team used the NAM (Nasoalveolar Molding) device to get Reid's cleft in placement. It was a whole lot of work, a load of tape, and tons of patience. But, the end result was well worth it. We had to have Reid go under anesthesia for the fitting since he was much older than most babies who start with the NAM a few days after birth. We then began our taping routine each night which also changed as his NAM went adjustments. We traveled to Rainbow (about an hour away) each Tuesday to meet with our team, to measure Reid, and to adjust the NAM. We did this for 4 1/2 months. Again, a lot of time, yes. But, the end result speaks volumes. Enjoy the pics! Above- Reid at day 1 with his NAM. It took about 3 days of adjustment until he was used to the feel of it in his mouth.

Here is a shot of the NAM. The rubber bands go on the two points on the upper points of the NAM which are taped to his face. This applies pressure on the cleft and slowly moves the premaxialla into the correct position for lip repair surgery.

Transfer of care...let the taping begin!

January o8- a new year...a new beginning. We transferred Reid's care to Rainbow Babies and Children's Hospital in Cleveland from the Cleveland Clinic. Rainbow is the number 5 children's hospital in the US and number 1 in the Midwest. We found it to be inviting and on the cutting edge in terms of care for cleft kids. This was more like it. They work as a, orthodontists, craniofacial, speech, physical therapy, occupational therapy, ent's...and so on. YES! This is what we were looking for. So, we met our team and began getting to work. Since Reid was already 2 months old, we had some work to do. They like getting cleft babies at 1-2 days old to get them all set for their NAM device. So, since Reid was older, we knew we had to be aggressive with the taping. Which we were. As you can see, Reid didn't seem to mind the taping too badly. Love that smile.

We found through trial and error that Steri-Strips work best...not the crummy tape that our team provided. Theirs was supposedly waterproof...but not spit-up proof because it would fall off instantly once Reid spit up. Well, with Reid's reflux...that was going to be an issue. So, the steri-strips did the job. We also used Mastisol to secure the tape in place. This also was a life saver. Both items are expensive...but we learned that you get what you pay for. It was WELL worth the money to have the tape stay and not come off every 5 minutes. Much better! Also this month, we went to a Medela Haberman Feeder for Reid. He did great. He was able to "chew" on the nipple to get milk out, and we could ditch the syringes for awhile. Yeah! Mommy is happy!

Feeding after surgery

After our Cleveland Clinic ordeal, you weren't feeding well from the bottle because of the stitches and the soreness of your mouth. We then began feeding you with a syringe with a cut cathedar tube on the end. I know...sounds fishy....but it worked great to get the milk beyond your open palate. I would place a pacifier in your largest opening of your cleft so you could get the idea of sucking, and I would use the syringe to feed you. It was very time consuming (about an hour for a 4 oz. bottle), but you handled it well, and did not gag or choke during your feedings. It seemed to be a good fir for you at that time. It was hard to feed you those late night feeds this way. I was tired beyond belief, and fililng up a little 10 cc syringe 12 times per feeding was taxing. But, again, it worked, and we were thrilled that you were gaining weight so well.

Friday after Thanksgiving 07- Going home

I despise this picture because it makes me furious. This will be my venting watch out. While in Cleveland a doctor from the floor saw your 2 bumps on the back of your head which were caused by your vacuum birth 17 days prior. She did not consult with us, the other doctors, our surgery team, our pediatrician, no one. She made a judgement call that was way out of line on her own, and called Children's Services on us from abuse. She thought that your dad and I were capable of abusing your little body, and claimed that we were to blame for the 2 small bumps on the back of your head. It was humiliating and degrading. Just after you had gone through your surgery, and I was focusing on your needs, I suddenly had to answer a battery of questions from a social worker and then Children's Services came from our home county to also question us. Brian and I were split apart for questioning and taken to different rooms. I wanted to be with YOU...not taken away from you to answer questions that made NO sense to me. It was horrible. A case was filed, and your dad and I were now being accused of the unthinkable...hurting you.

To access the situation, you were put through about every test imaginable. You had to undergo a CT scan, an eye exam to prove that you weren't shaken, a full body x-ray scan, bone scans, and a MRI. had just been taken out of surgery a few hours prior to all this. We knew we were going to be "stuck" in Cleveland for awhile as we awaited the results of all the tests you were put through.

Meanwhile, back home, Children's Services was doing an investigation of our daughter's care. They went to my in laws home to see if Ellie was being properly taken care of and even asked her (a 3 year old) a battery of questions. I know, that they have to do their job, but us???? Are you kidding me? Our kids are our lives. This was degrading beyond belief.

We requested that we be present for all of Reid's medical tests during this week. We were involved in all but one test. This would be the day that I will NEVER forget. Your dad and I were in your room at ALL times. We went to the cafeteria to grab dinner after spending over 15 hours with you. We informed the nurses of where we were going and asked to be contacted if Reid was taken for his body scan test. While we were gone, you were taken for your test, and we were not contacted. So, when we came back to your room, we were informed that "we had just missed the nurses who came to get you for your bone scan." We were furious. We ran down to the basement floor where the test was being performed and heard your screams all the way down the hall. Since the test was in progress, we couldn't be there to comfort you at all. After an hour of listening to your screams, the technician and nurse came out with you. And I will NEVER forget your dad's face. He realized it first...then me. Your stitches had pulled out of one side of your lip while you were screaming. It wouldn't be long...and the other side would follow. Your surgery was a complete waste. What a feeling of absolute sickness I had. I just wanted to take you home and protect you. What a mess. I also realized that if I wasn't on top of your pain meds that nothing was getting done. I know that this was a holiday week, but it would be well over an hour past due for your meds, and I had to hunt down nurses to help you. I was just sick to my stomach to be there with you.

Thanksgiving day was spent watching your stitches fall out of both sides of your mouth one by one. Piece by piece. I was reminded that you are here and healthy, and for that I am thankful.

Your MRI was performed on Friday morning. All stitches are out now. They pulled throughout the night. Your surgeon did not come by to see you once. NOT ONCE. Yes, I know it was a holiday and all....but we hadn't seen him since the recovery room where he BRIEFLY showed his face. Otherwise, 1st year residents came to check on Reid. And I will quote what one said one early morning when we waited for our surgeon to show up (and he never did)...."Oh, this is what a cleft lip looks like." OK, he DID NOT just say that???? Yes, he did. And he is here to access MY son? I think not. At this point, I knew that we had to look elsewhere for our son's care. This would not do. Not ever.

Friday morning, you had your MRI and all results came back that afternoon. Guess what....ALL TESTS SHOW THAT YOUR BUMPS ON THE BACK OF YOUR HEAD WERE THE RESULT OF A VACUUM BIRTH!!!!! The abuse case was dropped, and the doctors were all in agreement that the traumatic birth that Reid went through caused the bumps. Nothing else. We never got an apology from Children's Services or from the doctor that "turned us in". We never saw or heard from her again except from her initial observation of Reid that first day.

We were discharged from Cleveland, and the picture above is what you looked like when we got home. I remember just crying over your car seat for all you had been put through that week. I apologized to you over and over again, and I prayed that you understood me. I vowed at that point that your dad and I would find somewhere else to take you for your care. I would not settle for the care that we received at the Clinic. The hunt was on.

Surgery #1- 17 days old (Nov. 07 -Thanksgiving week)

It hurts me to post these pictures, but I must. It was a part of your journey. You had a lip adhesion at 17 days old in Cleveland. The purpose was to pull your lips together and have the cleft center itself through this process. Since your cleft was so far to the left, we knew this was going to be a painful process. All looked to be ok after surgery. I just wanted to pick you up and hold you. You were so tiny to be put through this already.

The metal bar was to prevent you from grabbing at the sutures. It was literally glued to your face.

Another picture soon after surgery. Notice, the IV is in the head again! You kicked out your other 2 in your feet in the recovery room! Still a stinker!

Your sister's first good look at you

Here you are after your first bath at home. Big sister, Ellie wants to just squeeze you. She is fascinated by you. She loves you so much and worries about your lip hurting. We try to explain to her that you are ok, and your lip feels just fine.

The tubes are gone!

When we came in to see you Thursday morning, all your tubes were gone! We were thrilled! (and so were you!) The night nurse gave you a bath and washed your hair after the tubes came out. Look how your hair dried! How funny! Mohawk man! Too cute, Reid!

Daddy holding you....and no tubes to get in the way. You are feeding better. Still drinking out of the Mead Johnson nurser, but we cut the nipples to get you more flow. For now, we are seeing you eat fairly well. We are happy.

You getting ready to leave the NICU in your "going home" outfit. You didn't get to wear this from Wooster Hospital because you went by ambulance to Cleveland. I was excited for you to wear clothes. It meant we were leaving. This is MaryAnne. She was your favorite nurse in the NICU. She was fantastic, and she really meant a lot to Daddy and me. It takes someone very special to do what these nurses do. What a blessing they are.