Ethan's First Surgery

Ok, I am definitely behind, but things are a little crazy around here. 

Ethan's surgery to close his lip was on May 15th, 2012.  The surgery went beautifully!  I maintain that we have an excellent surgeon!  They came and took Ethan from me around 7:30 that morning and we were able to go back to him around 11:30.  We have a great anestheologist, who kept us very aware of the happenings in the OR.

 

Second Surgery is scheduled for October 16th, 2012.  The results of that surgery will not be as dramatic on the outside, but will hopefully make a difference for Ethan and his eating.  This baby has got to grow!

Just for Fun!

I feel like I only write about the crazy going on in our lives and while it is always crazy around here, sometimes it is fun crazy!  I decided to just post a few pictures with comments about the fun we have been having recently too!  Enjoy my handsome men!

One of Caleb's favorite things to do is climb into furniture.  This piece of furniture sits low to the ground so I was able to take a picture.  Many times I have turned around for a moment and he has scaled the bookeshelf and is laying out in the middle of the shelf. 

The boys both enjoy running around in Jonathan's clothes.  I laughed so hard this night, neither of the boys wanted to take the t-shirt off.  These two adore their daddy! 

Caleb's first cotton candy.  Purchased against my better judgement by Jonathan.  They loved it, but they were both NASTY by the time they were done!  I believe the most fun for Caleb was smashing the goo between his fingers.

All three of my sweet boys in the bathtub.  Ethan loves being with his big brothers.  Jacob didn't really want him in the tub with them and fussed for a little bit, but he decided it was better to turn his back and enjoy the tub instead of crying about it.

Jacob's fisrt trip to the dentist.  He decided he did not need the dentist's help.

Mixed Emotions

Ethan's surgery is scheduled for May 15, 2012. 

Two weeks from Ethan's first surgery to close his lip and there is a list of emotions I am feeling:

• Proud
• Relieved
• Scared
• Powerless
• Nervous
• Overwhelmed
• Prepared
• Blessed

Proud:  There was a time when I wondered if we would ever reach the point where he was ready to have his first surgery.  I was not sure he would keep the NAM device in and I wasn't sure my taping abilities would have the results the doctor was looking for.  I am proud of Ethan because he has been a trooper through everything so far. His face started bleeding from the tape and he never cried about it, not a single tear, not even a frown.  He has remained one of the happiest babies I have ever known.

Relieved:  This is about knowing we have reached the first major step in Ethan's journey.  I will focus on worrying about the next step a little later.

Scared:  I am filled with fear for the pain my child will feel.  I try not to focus on this much, but when he looks up at me with his big, beautiful, blue eyes, my heart breaks just a little bit thinking about what those eyes will tell me in two weeks.  I am afraid I will not recognize Ethan.  This surgery will change his appearance and I am in love with him the way he is now.  I know I will love him just the same, but he will be different.  I will miss his big wide smile!

Powerless: There are two ways I feel powerless in this process. I will want to take away Ethan's pain, and there is nothing I can do about that.  I am not usually the kind of person that asks for drugs, but I hope there are some good drugs given to Ethan.  The doctors we have chosen are incredible, but I will have no control over the outcome of the surgery, I cannot go to the OR with him.  I am placing all my hopes for Ethan in their hands. 

Nervous: One of the things most parents do not have to think about is how to feed their infant child.  You give them a bottle, they suck the milk down and their baby is full and happy.  Feeding Ethan has never been easy and I am very nervous that it will only get harder.  We will meet with the feeding specialist the day before his surgery and she will tell us a few of the differences to expect, but this will not ease my mind and I know I will be nervous until he takes a good bottle.

Overwhelmed: This comes feeling comes from so many places, not just Ethan's surgery.  Sometimes it feels like the "to-do" list gets bigger everyday.  I know this is just part of being a mom!

Prepared:  I have signed the forms, called the insurance company, arranged for family to be here to help, and taken notes and written my last minute questions out.  These are the few things I can control.

Blessed:  Admittedly, the other emotions are what I have been focusing on the most.  However, I do know my family is blessed.  God has taken care of me and my family and I know he will continue. 

What the tape has done to my poor baby's face

Heidi's Crazy 48 Hours

Monday, March 5, 2012: The day started out like any other day.  Jonathan and I went to work and the boys were well taken care of by Miss Jessica (our incredible nanny).  That night's routine went like every other night; the boys brushed their teeth and I changed their diapers, then we rocked and sang a few songs before I put them in bed.  Sometime during rocking the boys I started feeling a little sick and by 9 pm I thought I was going to die.  My stomach hurt and I knew I was going to be sick.  This had happened a few other times since Ethan had been born and I thought my stomach was more sensitive to different foods since his birth.  After getting sick, the pain did not go away, it just worsened!  Jonathan asked if I wanted him to drive me to the ER, but there was no way I was waking up my babies for that, so I took myself a little after 11:00 pm.

Tuesday, March 6, 2012:  Sometime around 1:15 am, and after scaring everyone in the waiting room with my small moans in the corner of the ER, I finally was given some good pain medication and I found relief about 1:45 am!  They did an ultrasound because they believed it was my gallbladder.  After blood work and the ultrasound the diagnosis was confirmed, my gallbladder was the source of the pain.  At this point I was told I would need surgery and I could not be released. I was also told I would see a surgeon in the morning to discuss the diagnosis and treatment.  At this point I really did not understand why I could not go home, I felt better after the pain meds and I thought I could arrange to have the surgery done at a later time.  Sometime around 5:00 am they finally moved me from the ER to a room (if you can call it that!).  This "room" was extremely small and did not have a window or a bathroom.  I was frustrated, hungry, tired and a little lonely, but I took comfort in thinking I would soon meet the surgeon and have this issue resolved so I could go home!  My dad came to the hospital and stayed with me until late afternoon and I was glad to have the company.  This was an incredibly busy week for Jonathan at work and was not a time he could take off (I think this ordeal might have been harder on him than me!).  Finally, I gave in and started begging for ANYTHING the nurses would let me have to eat since it had been about 18 hours since I had even had a sip of water!  They reached the surgeon and I was allowed to have clear liquids.  Let me just say, chicken broth was not really a satisfying meal!  It was 9:00 pm before the surgeon came in and I finally had answers to what was happening.  I had gallstones, one of them was large enough to obstruct the bile duct and my gallbladder was now infected.  I could not leave because they wanted to keep me on an antibiotic drip, this procedure could not wait a few weeks because I would not be able to eat until the gallbladder was removed.  The surgeon told me I was in the middle of the scheduled surgeries for the next day and I should have my surgery about noon.  From now until the surgery I tried to just sleep as much as possible, my head hurt from not eating and my blood pressure was acting up (I think it is the white coats that do it to me). 

Wednesday, March 7, 2012:  The day started with the nurses telling me my surgery was scheduled for 3 pm.  I didn't think I could make it to 3 without eating and I was feeling just fine at this point!  Luckily, it was about 1:15 when they came to get me for my surgery.  The surgery went well, but I was very sore immediately after.  As soon as I could I started walking up and down the hall and preparing myself to go home that night.  I wanted to be in my bed and poor Jonathan wanted me home too!  (his words: "I feel guilty if I am at home with the boys because I should be taking care of you and I feel guilty if I am here because I should be taking care of the boys.")  They had started another round of antibiotics around 6:30 pm and it was going to take 4 hours to administer the IV, so we both agreed that when the IV was done we wanted to go home.  The nurses thought I should stay, but I was feeling better with each hour that passed and they weren't giving me any pain medication anyway.  The nurse tried to tell us that we could not be released since there was not a doctor there to release me, but Jonathan basically told her to find one.  We left the hospital a little before 11:00 pm and pulled into the drive exactly 48 hours after I had driven myself to the hospital.

It is Sunday now and I feel pretty good.  The three small incisions on my abdomen are a little sore and I cannot think about the cut in my bellybutton without getting nauseous, but that is just because I am weird.  There are no stitches and with the exception of the boys pushing on my stomach, I have no real pain.  I should also add here that during all of this my mother and Jennifer, Jonathan's sister, and Jessica were very helpful and made sure my boys were covered when Jonathan was with me at the hospital.  We are very lucky to have such wonderful support.

I am so thankful that is over!  Now, if we could have a few weeks of calm, that would be just perfect!!

The NAM Device

First a quick update on the big boys...

The "Big Boys" waiting to see the doctor

Jacob and Caleb are both getting big fast!  Since Ethan came home they are learning what it means to be big brothers.  Jacob is in love with his new baby brother and he loves to help me burp him.  Anytime I enter the room holding Ethan, Jacob rushes over to pat his back and every blanket in the room needs to be wrapped around him.  It really is very sweet!  Caleb ignored Ethan in the beginning, but he is really very gentle with him and has starting paying him a little more attention.  They are both working on using utensils, sometimes more effectively than others.  Jacob is trying to talk and mimics everything we say.  Caleb is a little less interested in talking, but mimics our movements.  Both of the boys love music with a good beat and love to dance!  We are trying to get the boys over being sick.  Caleb had Strep Throat and Jacob had Croup.  It was horrible listening to my baby try to breath through Croup!  I hope we do not have to deal with that again anytime soon.

Now on to Ethan; there is a little more going on in his little life:

At the Orthodontist getting NAM device

Eating unassisted

Our first step for Ethan was to get the Naso-Alveolar Molding Device (NAM).  We went in November to have a mold of his mouth done so the Orthodontist could make the device.  This is the same material they use on adults that you have to hold in your mouth while it slightly hardens.  Ethan did surprising well with this.  He did not cry, he only tried to spit the tray out.  We waited two weeks for the device to be made and then we were going to learn how to put the device in and clean it everyday.  The moment the doctor put the device in, Ethan spit up.  The device was gagging him.  The doctor tried to trim the device, but we still had no luck.  We tried again the next week and again, we did not have success.  So now the doctor wanted us to wait a month.  I was heartbroken.  I just wanted to be on the path to fixing Ethan's lip and we were not able to even start.  We waited a month and came back on January 16, 2012.  Jonathan and I both had our fingers crossed that he would be able to keep it in his mouth without gagging.  He still did not like the device, but at least he could keep it in his mouth without gagging.  So they showed us how to put the Fixodent on to hold the device in his mouth and told us we should clean it at least 2-3 times a day.  They also showed us where to place the tape on his lip to help move his lip.  The past month has been filled with ups and downs for me.  I was told he would eat so much better and burp better with this device.  And also that he would grow to love it and not want it out of his mouth.  The first day home with the NAM, Ethan was able to use his tongue to push against the bottle nipple and we did not have to assist him at all.  I cried tears of joy (see picture of me trying to hold the tears back)!  It was the first step, albeit a very tiny one, to his healing.  The NAM definitely helped him eat better.  The jury is still out on whether this has helped him burp better.  I don't even understand how that would work, but he burps fine so I do not really worry about that.  Now to the third claim; he will love it and will not want it out of his mouth.  I call BS on this one!  We have had the NAM a little over a mouth and he does NOT like it (do not let the beautiful smile on his face fool you, he was even happier when I took it out).  It doesn't fit properly and he is able to push it out unless we load it with Fixodent and the Fixodent is not really good for him since it contains Zinc.  There are times that is takes me three times to set the NAM in his mouth properly.  It is a very difficult thing for me to willing put something in his mouth that he hates and has a substance on it that isn't good for him.  At our last appointment I told him the NAM wasn't fitting well and he said that he would add some kind of liner to it that would help.  While I am skeptical that the liner will work, you can see from the pictures below that the NAM and the tape are doing their jobs in moving Ethan's lip, so I will just keep trusting that our doctor knows what is best.

Before the NAM

After one month of NAM

Cleft Education

The first thing I would like to say about Ethan is that he is the happiest baby I have ever known. He started laughing when he was just a month old and at two months he squeals with glee when asked if he is funny.

This post is really about sharing the information I have received so far on cleft repair. I will cover all in detail as we go through each step, but I will cover the high points here. I am happy to answer any questions about Ethan or the process he is going through. If someone has a question I do not have the answer to, I will find out.

So, what does a complete bilateral cleft lip and palate mean? Ethan does not have a roof in his mouth and his upper lip, under his nose, did not attach appropriately to the rest of his upper lip. What issues does this cause? The main issue for now is with feeding, since his upper lip is not attached, he cannot form a seal on a bottle and therefore he cannot suck (he definitely cannot nurse), even though he tries his hardest! Later in his life he will likely need some speech therapy, but this point seems minor to me. To overcome the feeding issue we used a special bottle called the Haberman bottle. The Haberman bottle has a very long nipple and instead of sucking on the bottle, we actually squeeze the nipple rhythmically while Ethan sucks. Unfortunately, when we squeeze a little too hard or not hard enough and this throws him off a bit.

Next, what are the steps to fix Ethan's cleft lip and palate? I am learning as we go, so I am sure some of this information will only be partially accurate because each child has a little different path.

1. Newborn - He will get a Naso-Alveolar Molding (NAM) Device. This should help him have more normal feeding patterns and also help move his pre-maxilla (the piece sticking out under his nose) back to the position it should be in.
2. 3 Months old - He will have a surgery to repair his lip and nose. During this surgery they will put tubes in his ears to keeps him from having ear infections. Ear infections are a very common problem for cleft palate babies. Luckily, Ethan has not had any ear infections yet.
3. 9 - 12 Months old - He will have his second surgery to close his palate.
4. Around 5 Years old - He will get a palatal expander that helps shape and widen his upper jaw arch and helps set-up his palate for his bone graft. He will start speech exercises as necessary and have hearing evaluations.
5. Around 7 Years old - Ethan will have a bone graft to fill in the dental ridge.
6. 7 - 12 Years old - Ethan will have Orthodontic treatment.
7. From 12 Years to final growth - If needed, they will perform additional surgeries to adjust his lip, nose, and scar. During this time he will likely need more Orthodontic treatment.
8. Around 18 Years old - This should be his final surgery and it is to his jaw. About 20-30% of cleft patients need this final surgery.

So that's the brief version of what lies ahead of my sweet Ethan. As each of these phases comes up I will have a better idea of what each step entails.

Ethan's First Few Days

If you missed the last post, Ethan was born with a complete bilateral cleft lip and palate.  Shortly after Ethan was born I started doing as much research as possible on what our next step should be for him and treating his cleft lip and palate.  Of course, all I could think about in the beginning were the questions I am sure any mother would ask herself: Why? Is this my fault somehow?  Did the surgery I have affect him?  Did I take the right vitamins and eat the right food? Could this have been avoided?  The thing that breaks my heart the most about his cleft lip and palate is the pain this poor baby will have to go through to get to the end result.  When Ethan was not in the room with me, I did as much research as possible on these questions.  Unfortunately, nothing really gave me the answers I was looking for and soon I had something else I needed to research; how to feed Ethan.  He was having a difficult time taking bottles and what we did get in him, he would spit up.  We were using a bottle called the Haberman bottle.  It was obvious that not even the nurses really knew how to use this bottle so I started watching videos and looking for alternatives in case this didn't work.  After a day or so we figured it out and Ethan took his first good bottle from me.  What a relief to know I would be able to feed my baby!

We are so fortunate that we have a family member that works directly with many of the craniofacial surgeons in Dallas.  She helped us in the beginning in two ways; first, she assured me everything would be okay and second, she helped us in finding a great surgeon.  I knew everything would be okay, but to have her reassure me of that fact made a difference in how I handled the thought of the next steps, I felt more at peace with what was going to happen.  Jonathan and I have both said we could have picked a great surgeon, but to have a recommendation from someone in the field gives us an enormous amount of comfort.  She told us about several of the doctors and let us choose from there, to say she has been a blessing to our family is an understatement.  We picked Dr. Barcelo with the International Craniofacial Institute (feel free to check out their website www.craniofacial.net).

After meeting with Dr. Barcelo, we know there will be 2-3 surgeries in the first year of his life.  The first surgery will be to close his lip when he is around 3-4 months old.  If the space in his lip is too large, they will close his lip in two surgeries in order to not stretch the skin too much in two directions.  This makes sense to me and I am glad they will do everything they can to make Ethan's scarring minimal, but I don't want the poor kid to have two lip closure surgeries.  The second surgery will be when Ethan is about one and that will be to close the palate, but only the soft palate.  The bone will be added when he is about 7.

We have many doctors in our future for Ethan, but we feel confident that we are doing the best we can for him and he will be a happy, healthy and very loved child.