A few sides of Claire <3

My crazy Claire Ann

Pre-Op Consult

Claire has an appointment with Dr. Schmelzer this coming Wednesday to get checked out, discuss surgery plan and schedule that surgery. This is my itinerary anyhow, what he has planned may be different but I am really hoping to get her scheduled and done before the month is over. As I have previously wrote about, the holidays were dampened a tad by my own guilt. Though this is going to be her second procedure I have prepared myself for this three times now, since the last one got canceled at the last moment I had been on quite an emotional journey preparing myself for the surgery. We have had a change in career, Chris is now working for the Union Pacific Railroad so we have amazing benefits for Claire and no more run around nonsense from Medicaid. I tried to reapply and we were denied because god forbid a person work hard and get a raise, that's an entirely other subject. 

I've been wondering lately if this process ever gets any easier; planning and worrying, not knowing when it will even be! I asked the girl who answered the phone if he had any openings for surgery this month and she wouldn't even tell me if there was a chance that we could get in. I'm not asking for patient's phone numbers to try to swap them appointments lady, I just want to know a ball park figure. Jesus, just tell me yes he's booked or no he isn't booked; he may be able to squeeze you in. I obviously wasn't expecting a definite answer. 

Little things like this are what makes this process a living nightmare. For instance the lovely nurse who rode the elevator with us post-op who said, "oh, I bet you don't want anymore kids after this". Are you kidding me? You do realize you work in a CHILDREN'S HOSPITAL right? My daughter's issues are small pebbles compared to the boulders some of these brave children face. If you are talking to me like this then how are you even able to hold this type of employment?

Big things run through your mind in fleeting glances. Sometimes its hard to get passed those little things that consume you and I think I do it subconsciously to deter from the big issues. She will be taken out of my arms and into a stranger's to go to a strange place. When she wakes up there will be confusion, anger and pain. When I get to walk in to see her she will look at me once again with those eyes that scream 'why mom?!' and I will fight back the tears that are too forceful for my efforts and make themselves apparent no matter how hard I try. I will fight the urge to let guilt consume me because I need to be the rock my daughter sees me as. The rock that I forget exists. 

Sometimes it is so hard to find that rock. I will be going about my day, minding my own damn business and BAM! I am struck by this overwhelming flood of emotions and I find myself having what I like to refer to as an 'episode'. In my rational mind I know that this is all necessary and that I am there for her in all ways possible doing right by her. There's also that little voice that tries to drag me into the dark side.The side where I can wear my guilt like a comfy sweater. I don't have to be strong because in this place I am alone. I can crumble and feel my emotions instead of giving the predetermined response to an inquiry. 

I dont think that this will ever get easier. I think that as she gets older it might be easier to prepare myself because I will be more focused on preparing her and being open about discussions. At the same time I think my guilt will worsen as she becomes aware of the process. I think the only way I can fight through this is to wear that comfy sweater and embrace it. Embrace my passion about being a mother and the fact that it consumed my life and thats where my real comfort zone is, as a mother. My path is easier than some, harder than others, but its all I know and I love our journey that's showing me that hidden strength day in and day out. 

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!