Nope.

So we had our first road trip this weekend. The kids, for the most part, did great. Monster boy really enjoyed the car ride - but most especially getting to stop by the side of the road to go to the bathroom (boys....). Miss Sunshine did NOT sleep most of the way, but as a result did learn how to hold her own bottle this weekend! So there is that. I hate when routine gets interrupted though, because the kids are cranky and it just knocks everything way out of whack. We did get Monster Boy to take a nap on Saturday amazingly, but it was a late one and he fought it for so long we wound up having to wake him up in order to make it to the dinner on time. So he was really cranky - he does not do well with being woken up. Miss Sunshine didn't take a single nap all weekend long, and kept herself up until after midnight both nights! She was a total crank by the end of it all, but she did sleep most of the way home in the car at least. She is not a fan of the carseat for extended periods so sleeping pretty much didn't happen. Oh well, live and learn. nd we don't make this particular trip for three more years so it's all good.

We heard back from the ENT finally about Sunshine's appointment. Turns out they can't get us in until the end of July anyways, so she will go back for her hearing test before she goes to the ENT. But I am glad we already have the appointment, instead of waiting to get it made and having to wait ANOTHER month to meet with the doctor. I am nervous about what is coming. I just want everything to be okay and her to not need surgery any sooner or more often than necessary. I'm starting to get more and more nervous about her palate repair too - that they aren't going to be able to get it fixed in one surgery and we are going to have to go back for more surgeries and it's going to delay her speech even further and on and on... and I still have six months before we even set a date for the surgery! It's honestly rather terrifying at this point and I try not to let myself dwell on it too often... It happens some days, and what do you do? You just have to move on from it. I just try to remind myself how lucky we are to even have her, regardless of what is to come. :) That usually helps.

I hate the term "Special Needs"...

So I finally heard back from Miss Sunshine's doctors office yesterday about the ENT appointment. They can't get her in until July 20th! So much for getting her seen right away. Oh well, the audiologist didn't recommend seeing an ENT until after her next hearing screening on the 15th anyways, so I guess the timing works.

I have been kind of stressed the last week or so. I think reality is just setting in. Other than the bottles, Sunshine's cleft is generally not noticeable, so it's kind of easy to ignore it. I can't forget about it - because it is always in the back of my mind. But when I look at her, because it is only the soft palate that is affected, I don't see anything wrong with her. And then things like having her hearing tested come up and I remember that I don't have a "normal" child. Not that she is abnormal, just that she requires special testing, etc that children without this defect...

For the first time last week, someone referred to her as "special needs". And yesterday a woman at work asked me how she was doing with her disability. Both times I was taken aback. I just don't look at her in this way. To me there is nothing wrong with her that cannot be fixed, so I don't think of her as disabled or "special needs". Of course, I grew up with a cousin with spina bifida, and it was a very big deal to his parents and the rest of our family that he not be treated any differently than the rest of us - so we don't see people as disabled... which is a great way to grow up. I hope to raise my children to believe the same. My cousin is in a wheelchair, so it is very obvious that there is something different about him, even to small children, but we don't treat him any differently. People comment all the time about my teasing him (we are the same age so we spent a lot of time together growing up) but I know that his feelings would be hurt if I didn't do these things. I guess just trying to reconcile Averie as someone who falls in that category just doesn't sit well with me. I'm trying to just let it go but honestly it is sticking in my head a lot these days. Hopefully I will get past it soon...

One step forward, two steps back...

So yesterday Miss Sunshine had an appointment with the audiologist. Since cleft babies are prone to ear infections and potential hearing loss, we have to have additional hearing screenings for her. We went into the appointment expecting everything to come out fine. She passed her initial hearing screen in the hospital with no problems. She's been reacting to sound, turning toward us when we call her name, mimicking sounds we make to her, etc, so we were confident she could hear. But when they tested her, that is not the result she got. She failed in both ears. So then they tested for fluid and she has fluid in both ears. They looked to see if her ears were inflamed and said they saw no signs of infections, so we have to go back in a month to see if she can pass then. They said if she failed again we would need to see an ENT. Well, I decided to be proactive on this. I was concerned about the fluid in her ears, so I went ahead and called her regular doctor, even though they said they saw no signs of infection. I wanted to make sure he didn't want to see her, just in case. Her doctor decided he didn't want to wait a month to see the ENT and risk any hearing loss, so they are setting us up with an appointment for the ENT, hopefully early next week. I am so glad he decided to do that.

For some reason, her failing that hearing test yesterday really hit me hard. I think mainly because I was not expecting her to fail. Even though they said that the fluid in her ears is likely the reason she failed, it has made me face the reality that she could potentially have some type of hearing loss. And that just makes me sad. We already knew there was about a 95% chance she would have to have tubes put in during her repair surgery, if not before. I was just hoping that maybe we would be the lucky ones who didn't have to do that. But now it appears that she is having fluid in her ears with no discernable cause, so she may have to have the tubes even earlier. I just don't know what to think. I wish there was some magic wand I could wave to avoid all of this. I know in perspective that really we don't have it bad at all - her birth defect is fixable, and there won't even be a visible scar from it. The majority of what she will go through with it she will not even remember. But it's just the thought of everything she is going to endure while she is so little that just makes my heart ache. And I can't help but blame myself. What did I do wrong to cause this? I know in my head that there is nothing that I have done, but that doesn't make your heart stop asking that question. I just try to take it day by day now. She is gaining weight finally, and I am still keeping up with her with the pumping. I really hope to make it the full first year with no formula, but I feel if I make it at least to six months then that will be a minor triumph. So I keep trudging along. She has developed quite the demanding personality and I can only hope it's something she will grow out of. One child with attitude is more than enough, and Britton certainly has his fair share as well.

Frustration...

So I'm past the whole getting laid off thing. I am feeling okay about that now. Monster Boy will NOT stay in bed tonight, and I don't know what his deal is. Other than the getting out of bed, he's been doing really well... He's so freaking smart sometimes it cracks me up... Tonight for some reason Shane was singing "Brass Monkey" to Miss Sunshine- don't ask because I don't know! Anyways, we (Monster Boy and I) were at the table eating dinner (Shane had already eaten and was holding Sunshine) and Monster Boy starts singing it too! And kept singing it, at least the refrain... "Brass Monkey. You Funky Monkey" over and over and over... it was really pretty funny - very cute. And that little grin. He uses it. Man, does he use it :) He's starting to figure out it doesn't really get him anywhere with me or Dad though...

Sunshine was SUPER fussy tonight. I can't decide if it was the teeth or the tummy... so we gave her gas drops and teething tablets! I figured one of them would do the trick... I can't use orajel on her since it goes up into her nasal passages and (I'm guessing) burns due to her cleft. That is what worked best for Monster Boy, so I'm kind of lost as to what to do for her. Just another reason why I hate this cleft :). So we are trying the teething tablets. I'm kind of at a loss at this point. Monster Boy was an easy teether, he rarely fussed. She is a screamer... poor girl. And I don't really know how to make it better :(. She still looks exactly like Daddy except that she has my coloring. Pretty big blue eyes. Her hair is getting blonder with every day, which makes her look like she doesn't have much hair. But she has a ton, really... and still the mullet in the back.... Shane wants to get it cut off, ha ha.

Another one of THOSE days...

So I found out today that I am being laid off. It's like one step forward, two steps back. I can't decide if we are better off or not. I'll probably stay home with the kids, at least for a little while. I don't know what else to do. Right now, I'm just praying that we will be able to maintain COBRA long enough to cover Miss Sunshine's surgery. It's just one of those days, I suppose. I'm trying to feel better about things, and every time I reach a point where I think I can deal and start moving on, something else happens to knock me back. I'm trying to be positive about this, I have always wanted to be a stay at home mom. So now here is our opportunity at least temporarily. It's going to make things tight financially, which you know, with a baby with medical issues, isn't really ideal. But we are working on it. I know that it will all work out, or at least I am trying to have faith. Maybe if I say the words often enough they will come true. And I wonder how this will affect my son. If this is going to cause issues with him, since I wasn't able to stay home with him, but I will be staying home with her. Sometimes I feel so guilty about not being able to do that for him, but for her. I don't know. My hormones are all whacked out because of the pregnancy and my body trying to get back to normal, which does not make things any easier for certain. For tonight I am going to go bed and try to worry about this in the morning...

Introduction

I decided that I need a place to write things down today. With everything that is going on and all that we are going through, it seems like there aren't enough minutes in the day to even process a thought in my head, much less remember all of this. And I really want to remember as much of this as I can.

Our daughter, Miss Sunshine, was born on February 3, 2009 with a soft palate cleft. We were completely unaware until delivery that she had this defect, so it came as quite a bit of a shock to us. Me especially. Everything I had assumed during my pregnancy was just shot completely out of the water. After nine extremely miserable months, I now had a new issue to face. Our perfect daughter wasn't so perfect to anyone but us. I know that sounds perhaps cliche, but that's how it felt.

When you are pregnant, you go through many emotions, many plans. All these plans I had during my pregnancy - like breastfeeding for the first year - were no longer going to be possible. And now I had a special needs child. I hate that label. My daughter cannot nurse at all. It was heartrending to me. Some women don't feel comfortable with nursing, and I can understand that. For me, nursing my son was one of my most rewarding experiences, and I had really wished to nurse him longer, but had to stop at 6 months. So with Sunshine, I had really laid everything out to nurse her for at least a year. And all of the sudden, without any warning, I wasn't able to nurse her at all. It took me weeks to get past that. Honestly, I am not even sure that I really am. So now I pump. Sunshine has had nothing but breastmilk. I pump every day, continually sometimes it seems like. And I hate absolutely every second of it. Because it is just another representation of the fact that I cannot nurse my daughter. But I do it, because I know it is what is best for her, and if I am not able to nurse her, at least I can do this. And I will do it for as long as I possibly can, if for no other reason than I am ridiculously stubborn and refuse to give up.

Sunshine has to use special bottles that do not require much suction in order to eat. Because of the cleft in her palate, she basically has no suction at all. She cannot eat out of a regular bottle even. And every time I have to take these bottles out in public, people stare and make comments. I am continually astounded by the rudeness of some people. Couple that with the "Why isn't she nursing?" comments I get, and it makes you feel inadequate as a mother, even when you know you are doing your best. Some days I just want to scream at people about how insensitive they are. It really gives you a new perspective on things.

As a parent, you want things to be all right for your children. You don't want them to have to face any pain or hardships in their lives. Now my daughter has to have surgery by the time she is one. She may require additional surgeries - this is something we don't know yet. She will probably require speech therapy. Another thing we don't know. She will probably have to have tubes in her ears, and could potentially face hearing loss. Children with cleft palates typically have more ear infections and fluid behind the ears. We have to take her in for a second hearing test sometime in the next two months. She has weight gain issues - she should have nearly doubled her birth weight by this point, and she hasn't even gained three pounds yet. We think it is largely due to the cleft - because she has no suction, even with these special bottles she has to work harder than most infants to eat. This uses up calories that she needs to gain weight. She won't spoon feed. She seems to have an oral aversion to the spoon - another common side effect of the cleft. When she does eat food, it comes out her nose. She continually has stuffy noses, because when she eats, some of whatever she eats enters her nasal passages, because they are fully exposed since the roof of her mouth is open.

I know in the grand scheme of things, things could be so much worse. But when it is your child, every little thing they go through hurts you too. As far as birth defects go, we are probably lucky. It sounds so strange to say that. How can you be lucky to have a birth defect? But her defect won't potentially kill her. It won't render her disabled. It is repairable. She won't have any visible scarring from her surgeries. So yeah, I guess we are lucky. I know we are lucky to have her, and I know she is ours for a reason. God has a greater plan for us, we just don't know what it is yet. But we have faith. Some days, that may be all we have, but we certainly have that.