Long overdue update

Claire is going to be 2 before I know it! I can't believe how fast time flies or how much she changes and yet stays the same. Day to day her clefts are not on my mind at all. I think more about how many spills are all over my freshly cleaned floor! She was due for a surgery last summer, July or August? Anyhow, we're on medicaid and have had some crazy issues with them. Honestly, I could write an entire blog on medicaid and how terrible their system is! It got close to the holidays and my husband and I decided that we wanted to wait for them to pass before doing this procedure. Last year was great don't get me wrong but her post op care did bring daily issues along with it. I remember Xmas morning she lightly bumped her nose and she was so upset because it was still so tender. It broke my heart that she had this hindrance on her first Christmas. That being said we... Well I.. Got started back up doing the medicaid dance so we can get her next surgery booked. I am starting to get nervous about it. Not so much about the actual surgery this time more about the million appointments (hopefully this time it's not as bad) that are 4 hours away. Claire's not as car friendly anymore! Also, the after care and of course and how this will feel to her. This surgery is a soft palate fix which will help her vocal cords and in turn help her vocabulary development. We communicate really well now and she has her own crazy toddler language like most kids do. She's outgoing and fearless, always into something! Just like last time we went through surgery I have a lot of conflicting feelings. Part of me is really excited to watch her vocabulary grow and there's also a very big part of me who is very sad to say goodbye to her quirky sounds. Obviously all of her insane sounds aren't caused by her cleft but I know some are. As any good mother would I feel an enormous amount of guilt knowing that she's waited longer than the doctor wanted even though I did do some research and a lot of hospitals won't do this procedure until the child is 2 so that's taken a little guilt away. One of my very dear friends told me in the beginning of our journey that I must be Claire's advocate and do what I think is right. I would like to think that I am doing that. She's such a happy kid and I really don't feel like this has hurt her in any way. She's developing great and I wouldn't change the last 6 months for anything. We've had a lot of fun! I have learned that no matter how hard we try as parents there will be mistakes and there's no such thing as a perfect parent. Though I am fairly sure there is a perfect child & I got her ;)

NAM appointment #2

We just got back from our second NAM appointment with our Orthodontist, Dr. Yamashiro. Claire has been fighting the mouth piece for the last week. In other words, she did great the first week, but horrible the last week. I honestly believe that if we would’ve started this procedure in the first 2-3 weeks of her life this would be SO much easier. She is so mobile now and is used to her own routine of putting her tongue in her palate cleft while she sleeps so it’s more comfortable for her to breath. She certainly has continued her hand sucking for self-comfort to. This means that having this mouth piece in is a choking hazard. As I have mentioned before she has ALWAYS liked to suck on her hand. Having her hand in her mouth made us get extra ultrasounds because she kept us from seeing her mouth. As much as we think these things are cute while I was pregnant with her, they are habits that continue after they are born. So, now that Claire is 2 months old (OMG!!!) she has her own self soothing routine of having her hand by her mouth and/or face basically 24/7. If we were trying to break her of this habit as a newborn it would’ve been difficult but not impossible. Now we are talking about pinning her arms to her sides so she can’t rip the tape off or dislodge the “retainer” from the rubber bands and choke. She has demonstrated before that she can unhook it. Seeing her do this, now I am scarred for life about leaving it in while she sleeps. But, am I doing the right thing by making her comfortable and not doing the NAM or, am I totally blowing it because I am not strong enough to get through the discomfort stage and let her adjust?

I am having a huge personal conflict about doing the right thing here. I don’t want to take a chance o risking her motor skills by pinning her arms down but don’t want to be weak and not do the NAM and have her resent me down the line because her nose may possibly turn out “lazy” or “flat” because I didn’t do the NAM.  There are different beliefs and approaches to the NAM and pre-surgery procedures. I chose the doctor who likes to use the “retainer” that isn’t permanent. A friend of mine chose the doctor who still uses the permanent “retainer”. In my opinion, I don’t see a huge difference in the outcome. BUT I think that if you had asked me that 4 months ago my answer would’ve been different. I made the decision to go with Dr. Schmelzer because of his new approaches and open mind. Now I doubt it because I know that his approach is much more invasive. People think I am crazy when I say that. Why someone would chose a permanent mouth piece “retainer” over one that you can take out? Well when you have an infant who can’t keep their hand away from their face the situation becomes a little more real, and dangerous.

This is why I am going to STRESS, STRESS, STRESS to any parent who is reading this; if you are expecting a baby with a cleft lip and/or palate. Get started in the first 2 weeks. I know how hard it seems to take you brand new baby into an orthodontist and get the tape and “retainer” going so soon. But that is your parent mind talking. DO IT!!!Get that baby into the routine quick so you don’t have to worry about breaking habits. Make this your routine. Even if you don’t elect to do the NAM procedure you still need to think about how your baby will do with splints on their arms and stitches in their lip. I honestly am so scared right now. I don’t know how we are going to break Claire of this habit. It’s bittersweet because I know that doing this for her NAM and stitches now, will probably mean that I won’t have to deal with thumb sucking but at the same time I feel guilty. She can’t have a pacifier because of her palate and she has been ingenious enough to fit her little hand just right in there to make her own pacifier. I feel bad taking that away, but I know I have to.

I don’t regret much in life, actually nothing at all, and that is a lot coming from me. I am mindful enough that I know that there is something to be learned from every situation and as long as you can walk away from that situation knowing that a lesson was learned; hard, easy, good or bad, as long as you learn something you shouldn’t regret a second of it. I could easily regret not starting Claire on this 2 weeks BUT I know that the reason that this happened to me is so I could write about it and let another family know that its ok to jump right into it. Its better in the long run. I was the most planned out, prepared mother I knew how to be, this was my slip up. This is where I feel like I failed her. I don’t regret it because I am writing about it and my mistake can help someone else, therefore I do not regret it, but I don’t honor it either. If there is nothing else to take away from my blog let this be it. Please, don’t wait till the baby is old enough to develop habits. Do it within the first 2 weeks. I know it is so very hard to see your precious new baby go through these things and adjust to having a baby or an additional baby, but it really will be worth it. Do the NAM, and do it soon!

Mommy Mind vs Medical Mind (our first NAM visit)

I can’t even begin to describe the events of the day. I have been a wreck ever since. It is so hard to go through this as a mother and try to see things from a doctor’s point of view. It’s so easy for them to tell you that you have to put tape on your daughter’s baby skin EVERYDAY and this “retainer” that has these prongs on the front that can be described best as fangs. This was a very hard appointment for me. I knew going up that we weren’t going home the same. Dr. Yamashiro is amazing, and so patient. He placed the NAM for us as well as the tape on her lip and Claire did so good to! He really is so good with babies. I feel so blessed that we were able to have him as our orthodontist. The best part about Dr. Yamashiro is that you go right to his office. It isn’t like seeing other doctors where you see a receptionist, nurse, etc, etc… You sign in and the sweetest receptionist will call you in, and you go straight to his office . You can spend 10 minutes in there with him getting right to the point if you want, or he will spend as much time as you need him to reassuring you and explaining things to you. He is so great to work with, for the child and parents. He made us feel very confident and very safe. His entire office has that feel about it. You head back to that wing of Primary Children’s and his name is on every plaque by every door.  It gives me a warm fuzzy feeling in the middle of so much chaos to know that I am taking Claire into HIS office and HE is going to sit with her personally and talk to us about every detail for as long as we want. He never so much as glances at his watch.

We left with a new lease on life thinking it was going to be pretty smooth, that’s how Dr. Yamashiro made it look and hey, I could do it to. Right?

The first week was a collage of situations. One minute Claire was totally fine with it and the next she was pulling it out and choking. I was very diligent for that first week. Then her cheeks started to bleed and she started fussing from the second the mouth piece went in until I took it out. I couldn’t take it anymore. Day 10 was the last day I did anything. It’s been 14 days since our last appointment today.

The whole idea of doing the NAM was great when I was still pregnant. I knew that it was the beest and right decision. But its so much harder when you see how our child reacts to it. They say a lot of babies will grow very attached to their retainer and suck on it like a binky. But Claire absolutely hates it.

The reason I named this entry ‘Mommy mind vs. Medical Mind’ is because I wish I could’ve been more prepared to differentiate between what the doctors were saying and what it actually entails. This is so much harder than I planned. I know I have a lot of strength in me, but I don’t know how I am ever going to get through this. Let alone the actual surgery!!

Pre-Appointment Jitters

It’s the night before we head up for Claire’s appointment with Dr. Yamashiro. I am having some crazy anxiety and emotions. I am really excited that we are going to be beginning the next part of Claire’s journey but really sad at the same time. While I was pregnant I would sometimes worry about how everyone would react to Claire and how different it would really be to have a baby with a cleft. Now that she is here all those worries are gone and I don’t even see her cleft anymore, I never really did. She is just my perfect little angel who brightens my day every day, and my nights and very very early mornings! I have never thought about her as having a defect or a handicap. Sometimes that in itself makes it hard to sit in the waiting room.

I remember waiting to see the genetic counselor in St. George. I didn’t really know what to expect but when we got to the waiting room it was completely full. I looked around at the other children, and most of them were mentally handicapped, and honestly that was really hard to swallow. All I could think is, “what are we doing here? Claire isn’t handicapped?” I felt like we were all under this “label” and it was hard to swallow. I see my baby as completely normal! Seeing her that way in my eyes and having to alter her appearance for her well-being is very bittersweet.

So, I sit here tonight thinking about how this is our last night without having to worry about retainers and medical tape and I find myself very sad. I don’t want to look at my daughter everyday and see this medical tape on her face. I don’t want to have to take this retainer in and out of her little mouth everday and put her through that. And I really don’t want to see my daughter change. Its hard enough to watch them grow so much so fast, but this is going to completely alter her appearance. That to me is the epitome  of bittersweet.

I thought that one of the hardest parts of our journey was going to be the waiting. Waiting to start the NAM procedure, waiting for surgery, now I know the hardest part is actually having the time come and letting go of this beautiful smile that is Claire’s and no one else’s. Its my daughter’s smile, the smile that I got the first time she smiled at me, the smile I get in the morning when she first sees me, and also the smile I get when she is farting like crazy! Its part of the perfect, beautiful face that belongs to my angel and I don’t want to see it change.

I get scared that its going to be really hard to get her retainer in and out. I am really afraid to do the medical tape for  her lip and worry that Miss Busy Hands Claire is going to pull at it all day because she cant keep her hands from her face. She couldn’t before she was born either! We would always see her with her hands by her face in her ultrasounds.

I guess this is the calm before the storm. This is the beginning of our bi-weekly visits. Thankfully we are lucky enough to have Grandmas who have the time to make these trips with us. It makes it so much easier to have extra hands and support. The plan is to make bi-weekly visits with Dr. Yamashiro to do adjustments on her retainer  until we do her first surgical procedure which we plan on doing in September. It’s the beginning of a very long, and not so easy road. I am so grateful that we have such an amazing family, and strong extended support systems as well. We are amazed and appreciative everyday by the constant support that we have!  

Claire's First Consult

Claire’s first visit was on May 20^th. We had an appointment with Dr. Schmelzer and Dr. Yamashiro that day. I had previously met Dr. Schmelzer, but not Dr. Yamashiro. As if these appointments weren’t packed enough of anxiety for me you have to make sure you figure in the 4 hours of driving we have to do every time we go. So, not only do I get to stress about every appointment every day, I get to have 4 hours dedicated to it RIGHT before the appointment. I tend to get myself worked up over these types of thing anyways, as I have learned with previous specialists and ultrasounds, so I get myself stressed about the stress I am going to have on the ride!

 Besides the ride, I think that one of the worst parts of these visits is the waiting room. I look around at all of the other families and see how fortunate we are. Its hard to see all of the other children and not feel lucky, and hopeful. Its hard to sit there with children who have it much worse than Claire, the room is so heavy. There is such sadness in the room, but at the same time so much hope, happiness and love.  Its as if all of your emotions have been thrown on a roulette spinner and you are just watching the ball bounce. Its nerve racking to sit and watch the nurses come to the front of the room and call names, you never know if you should look up and smile at the family walking towards the patient rooms, or pretend that you aren’t dying to be the one called back and go about your business “reading” .

I always thought I wanted to have these long consults that proved that the doctors cared. I realize now that a quick in and out is what you really want. We were in and out very fast once our name was called. I realize now that it’s the children who have the most problems who have the longer appointments. I was so proud when he asked his questions. I had the answers he wanted to hear; about her eating, sleeping, breathing, alertness. Everything he was asking about Claire was doing, or was so much more advanced at doing than he expected. When I got into the waiting room I was wondering how Dr. Schmelzer was going to have quality time to spend with us with all of these children waiting. Now, I know that each patient gets quality time with him, but not all of us are lucky enough to be able to have a smooth, quick appointment.

Our appointment with Dr. Yamashiro took longer than our appointment with Dr. Schmelzer. Much to my surprise we are not going to see Dr. Schmelzer again until we are seriously talking surgery, which will most likely be sometime in September . We had previously committed to the NAM procedure. NAM is a technique in which the alveolus (gum ridges) and/or nose are molded with an appliance similar to an orthodontic retainer. This is usually done by a specially trained orthodontist prior to surgery, in order to make surgery simpler. The baby wears the appliance 24 hours a day for a period of weeks or months. It does not interfere with feeding or breathing for the baby. They also use a technique along with the NAM that helps with the lip being pulled together. At our visit with Dr. Yamashiro I learned that I will be doing a procedure with Claire at home with medical tape to help pull her cleft lip together, and he will be doing regular adjustments on her ‘retainer’ to pull her cleft palate together. To sum it up; we will be doing tape for her lip at home, every day and have her wear her ‘retainer’ all the time. They allow 15 minutes a day for it to come out so that it can be washed. We will also be doing an ‘adjustment’ appointment every 2 weeks for her ‘retainer’ with Dr. Yamashiro.

I was a little late getting this portion of my blog drafted so we are now T minus 1 day from her first ‘active’ visit I guess you could call it? I am very nervous about getting everything started. I have been an over-achieving planner for about 10 months now. The time has come to actually start everything and I am so nervous I don’t even know how to articulate it! I am excited that we are starting to do something that is going to benefit Claire for years to come, sad that she is already big enough to start, and scared that its going to be so hard that we don’t get to enjoy the simple things along the way. I know we are overly blessed by being able to be parents to such a beautiful, amazing, perfect daughter. I just hope that she is as blessed to have us as parents as we are to have her in our lives.

Our First Two Weeks

From the beginning I was pretty against being induced because I knew that it carried a higher risk of having a C-Section. Claire was due to arrive on May 25^th, 2012. That day came and went with no baby or any real signs of her coming. So, we waited for the 29^th to roll around so we could be induced. I went over that evening and started receiving the pill at 8:00 pm. They administer these pills every 4 hours in hopes that some dilation will happen. This was not the case for me. By 11pm I was having some major contractions but none that were very productive. By about 1am I was so miserable! They were starting to come harder and closer together which would’ve been great if they were bringing my baby! We went all night with contractions every 5 minutes and finally my doctor arrived.

He was concerned because we had a hard time tracking Claire’s heartbeat all night. After exhausting all of our options I started to get worried about Claire and asked my doctor if it was time to prepare for surgery, he agreed and off we went for an emergency C-Section after 16 hours of labor. I was very nervous about the procedure but was more concerned about Claire. Come to find out the umbilical cord had wrapped around her neck a couple of times.  I very impatiently waited to be introduced to my daughter, and when I finally got her in my arms the previous 17 hours all went away. I was in love! But the happiness didn’t last for long. My doctor expressed some concern about feeding her and thought it was best if she was life flighted to St. George or Salt Lake……without me! I was to choose either my mom or Chris to go with her. I freaked out. How was I supposed to let my less than an hour old daughter be taken away in a helicopter without her mama? She would’ve been away from me for 2 days. That may as well be a lifetime to a new mommy and baby. There was no way I was letting them take my baby from me.

As I was laying there saying that Chris should be the one to go with Claire I heard this voice in the back of my head saying “you have to be our baby’s voice. If the doctors, nurses or staff try to do something that you know isn’t in her best interest say something. Never disregard your instincts. You’re her mother and you know best.” It was the voice of one of the mothers who I had the pleasure of meeting with before Claire was born. I refused to let them take her. I begged my doctor to at least let me try to feed her. He agreed to call my plastic surgeon’s office and at least get a second opinion. I turned to my mom and said “please call Angie, please ask her to come over here and help us. They just can’t take her from me.”

Before I had been out of surgery an hour I had been on the phone with Dr. Schmelzer’s office making damned sure that they made it clear that we were ok to at least take a day to try to feed Claire. I also took this opportunity to schedule her first consult being the prepared person that I am. My mom had contacted Angie and told me that she was on her way. There was some relief for me but not much. I was so scared that they would change their minds about giving us the opportunity to try before taking her away.

Angie came over to help us feed Claire and she took to the bottle right away. Angie couldn’t get over how a like Claire’s and her daughter’s clefts were. It’s so comforting to know someone who has gone through something so similar to our situation. Angie and her family have been a real blessing to ours. And I am happy to say that since that first time there hasn’t been one concern about Claire’s eating habits. I will never be able to thank Angie enough. She saved my sanity that day, I will forever be grateful to her for what she did for me and my family. I’m also forever grateful to my mom who pushed me to reach out to her.

After getting over Claire’s first hurdle it was my turn to have some struggles. I felt great in the hospital and was excited to be released and take our little one home. Our first night home was as expected. It was hard on me due to being so sore from the surgery and against all my previous statements I had to let her sleep in bed with me because I could not bend over. I was in a lot of pain. I eventually had to give in and stay at my mom’s house. I had blinding headaches from the spinal block and just felt miserable. I was so sad and felt so guilty that I couldn’t be and do everything that my daughter needed.

I had been pumping for Claire so she could get the colostrum for her immune system and I decided to keep doing it. After 2 days her poor little butt had a horrible rash and so did her chin, plus she had a blister on the roof of her mouth by her cleft. I had given her thrush.  Poor Claire had a couple of hard days with me. We were both ready for the long exhausting weekend to be over so we could go to our first checkup.

I don’t know what we would’ve done without DoTerra Oils that weekend. Thankfully my mom and I had just discovered them and she had received her oil kit. We used lavender on Claire to help her sleep, and in her diaper rash cream. We used melaleuca on her feet and jaw line to help with the thrush, and DigestZen on her belly and feet to help her gassiness. I was using Past Tense for my headaches and it was the only thing that helped at all, although it didn’t seem to last a real long time any relief was welcomed.

Claire looked great and had gained an ounce. I asked for some pink swizzle for her poor butt rash, even though the lavender had helped a lot what mom doesn’t want pink swizzle on hand?  He said that all we could do for her blister was keep an eye on it and as long as she kept eating we were ok. As for me my incision looked great and wouldn’t ya know it? He recommended caffeine for my headaches. Dr. Pepper was my cure!

We headed home feeling much better. The caffeine did the trick for my headaches and I mixed some lavender in with Claire’s pink swizzle and after 1 day her chin was cleared up and 2 days after her butt rash was gone. Sadly, her poor mouth wasn’t looking any better. She was a trooper though. She ate and ate some more up until she was 2 weeks old when we ended up in the Emergency Room.

Claire had been pretty fussy for a couple of days and I had noticed that her blister was getting worse. I had started wetting her nipple before feeding her thinking that it may not rub so badly if there was a little slip to it. This worked but eventually she wasn’t wanting to take her bottle and when I finally got her to there was blood on her nipple. I was so worried. I debated with myself all day about taking her to the Emergency Room, and I finally decided we needed to.

They gave us some Tylenol and numbing stuff and sent us on our way. For anyone who comes across this issue, the numbing solution is a bad idea. She got it on her tongue and down her throat so it was impossible to feed her after, which was what the goal was. It was a really long night but she started eating regularly again the next day. I made an appointment to see our doctor anyways.

Claire surprised us at that visit by gaining an entire pound! We were all so proud! To have everyone be so concerned about her eating; concerned enough to want to take her away, then to have her gain a whole pound in 2 weeks! It was pretty vindicating for me. Looking at her mouth he decided that she still had thrush in her mouth. He also thought that the blister was a pressure ulcer. He prescribed her some mouth wash for the thrush and we are hoping that the blister will start looking better if the thrush isn’t irritating it to.

We had a very interesting first two weeks, as I am sure every new family does. She was such a tough little girl through it all. We had a tough start, but it only made us stronger.

What Now?

After finding out that my instincts were right I wanted to dive right into everything and anything I could to prepare myself for the rough road ahead. I made an appointment with a specialist for the following week after we found out. I remember that week going by so slowly. I was extremely sick with nausea and horrible heartburn. I also had a regular checkup appointment that week. I was measuring 4 centimeters too big which only added to my stress. As I have proven many times before preparedness is key to my sanity so I researched causes of measuring too big and when mothers are carrying babies with cleft lips or palates they sometimes have a hard time digesting the amniotic fluid.
At 27 weeks we went to the appointment with the specialist. He told me that there was no reason to be concerned about measuring too big. Everything looked great. It’s amazing how much they change so quickly. This time we could actually see that she had a cleft lip. We could see that it was on her left side, just like my dad's is. Although he didn’t think the lip was severe he agreed with the radiologist about her having a cleft palate.Sometimes cleft issues are indicators of other chromosomal issues. He reassured us that he didn't see any reason to be concerned about her having any other problems, such as down syndrome. He told us that there wasn't a whole lot that we could do until she was born and we knew how severe the clefts were. The next step was an appointment with a genetic counselor, and I had to wait for them to call me which drove me crazy.
I kept it together pretty well in the appointment. It was easy to stay optimistic while seeing our cute little baby on a big screen playing and jabbering to herself. But as soon as I got out of the doors I felt it hit me like a ton of bricks. We knew that because the radiologist was pretty sure about the palate that it was wishful thinking to hear anything different from the specialist. That doesn't mean that I didn't stay hopeful, and have a very hard, long, tearful ride home.

 Even though it was hard to hear everything be set in stone it was such a relief to finally be doing something besides research. I knew that I had to buck up and get everything in motion. I didn't want to be one of those moms who just went along with what they were telling me. Which was basically to sit back and wait for her to make her debut. I wanted to be proactive (shocker, I know) and set up consults with some plastic surgeons. The advice that we got from the specialist was to set up consults with them a couple weeks after I had delivered. The last thing I wanted to do was drag my baby from doctor to doctor when we could make that decision before she arrived.

We met with the genetic counselor and learned about pigeon nipples and got a list of plastic surgeons from Primary Children's. There was a lot of other information that she had to share with us but because of my diligence I had covered most of it for myself already. I am very grateful that I did so much research. It made it much easier to face each task with some knowledge. I cant imagine going through it all blind. Waiting for some doctor or counselor appointment to ask a simple question would've been nerve racking.

We were fortunate enough to have the opportunity to meet with a very well known cleft plastic surgeon while we were at our genetic counselor appointment. He was very nice and answered a few of our questions. Knowing that he was one of the most popular choices I knew that many mothers would have been satisfied with that and chose him. Which is obviously not a bad choice. I have seen his work and it is amazing, but I felt that I would be doing Claire a disservice if I didn't at least look into other surgeons before making our decision.

So, since the counseling appointment had passed we had nothing left to do but wait for our last weeks to pass, and choose a surgeon. I got online and looked at each surgeon's profile from the list. I knew I wanted a surgeon who had an obvious passion for cleft work. Out of the 10 surgeons I narrowed it down to 2 that I wanted to meet with. The first consult went well. I thought the doctor was a little on the odd side and wasn't so sure about him but although I wasn't sure about him I felt comfortable in making him our #2 guy. ( a go to guy in case the next consult was a bust) His success stories were great and his pictures on his profile were stunning. There was just something about him that rubbed me the wrong way. One thing that I disagreed with was that he wanted Claire and I to make an appointment to be seen within the first week of life. We live about 4 hours away from these doctors and the last thing I wanted to think about was bringing her to a consult so early.

The next consult was where we found our surgeon Dr. Schmelzer. I knew within the first 60 seconds he was our guy. He was straight forward, to the point and didn't dance around issues. I liked that about him and respected him instantly.

A lot of people gave me some grief about trying to include personality and bedside manner in my decision factors. I disagree with them completely. I think that they are VERY important. I am trusting this man with my baby. A very small baby! And come on lets be honest, my daughter's face is getting operated on, shouldn't I feel comfortable with the man who has the scalpel in his hand?