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.

Cleveland NICU

Here you are...3 days old. You didn't do so well eating the first night in the NICU, and the doctors were forced to put a feeding tube in. You still have your IV in your head which doesn't seem to bug you too badly. You HATE the pulse ox. on your toe. You kick it off every chance you get. The nurses think you are pretty fiesty for only 3 days old! I agree!

See those socks on your hands? Those are to keep you from pulling on all your cords. It helped for awhile...then you even managed to get those things off of you! What a stink you are!

Daddy holding you. We were so glad that we could hold you in the NICU. I think that's about all I did there. I just wanted you close to me. I wanted you to know that your dad and I were there with you from sunup to sundown and beyond. We couldn't get enough of you. I hated leaving you each night, but I knew you were in great hands. Your nurses were fantastic. We were blessed by their loving care for you.

Monday, November 5, 2007

Well, you were taken by the NICU ambulance from Wooster to Cleveland...about an hour drive. It was scary for us because we couldn't ride with you. Your dad and I followed behind in our car, and you got all settled into the NICU bed #9 after lunch. You were sharing your room with 3 other babies. After seeing them, I feld guilty for even thinking that you were in "bad shape". After seeing a baby that weighs 1 lb. 8 ozs. next to you, I quickly realized that there were many other needs here far greater than yours. I still pray for your 3 roommates each day and hope they are doing as well as you are.

You dad and I got a room at the Cleveland Ronald McDonald house because we could not stay with you in the NICU. It was a great experience, and we appreciated all the support that we received from the other many wonderful familieis that were staying there as well.

First hospital night

Here is Daddy and your big sister with you. You were having trouble eating from the start. You ate from the Mead-Johnson feeder, and just didn't have the hang of it. The nipple didn't give you enough, and you were frustrated. You ended up getting an IV the first night at the hospital. You are a fighter, and it is apparrent. You did not tolerate an IV.....anywhere! So, finally, the nurses had to put one in your head. You got your first haircut that night. They had to shave some of your hair (because you had so much) to get the IV in. You didn't mess with it then, and seemed to be tolerating it ok. You were only eating about 2 cc's at a time. Not enough to sustain you. We knew you would be transfered to a NICU somewhere. Off to Cleveland we were. You were born Sat. night, and by Mon. morning, you (and Daddy and me) were off to the Cleveland Clinic NICU.

It's a Boy!

I am dedicating this journal to big hero. I love you to the moon and back....always. .......Mommy

November 3, 2007
Here I am...ready to see who this little mystery person is who I have grown to love over the past nine months. I was SO ready to meet you, Reid. I just couldn't wait to see you!

It's Reid!!!! We had no idea that you were a boy, first of all...and then your bilateral cleft lip and palate were a surprise as well. You know how to make an entrance, kiddo! I was scared beyond belief when I first saw you. How could I possibly meet all your needs? God really trusted your dad and I to do the best that we could for you, but I was really overwhelmed. I thought you were beautiful from the start. I first saw your beautiful eyes and all that hair! I knew you were a big baby just from how much room you took up inside of me. Never would I have imagined you were THIS big! You were so beautiful, and I was amazed that your dad and I had been given this perfect gift. You know, those were the first words out of your dad's mouth to me. He saw you first, and he told me right away...."you were just perfect." And that, you were.

Your cleft was large and off to the left side. Your palate was wide open as well. I was sad that you could not nurse. I was looking forward to that time with you. But, I would find other ways to bond with you later.

9 lbs. 6 ozs. and 20.5 inches long. Wow, Reid! No wonder I was HUGE! You were HUGE!

Just you and me, kiddo. This was the first really good look I got of you, and I was so honored to be your mom. You looked like Ellie in some ways, but you were definitely your own person. Now where do we go from here? I remember feeling so lost and just worried about you. I wanted to show you to the world, but I wanted to hide you as well....because I didn't want you to be looked at funny or stared at. I didn't want to answer questions. I just wanted to protect you from all that. I would soon learn that my ideas about all this would drastically change as time went on. I am proud to be your mom, and I think that you have a lot to show this world of ours. I just hope people will open up and listen with their hearts. I love you, Reid.