Tuesday, June 9, 2009


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.



1 comment:

  1. Hi Wendy. I'm Cyndi, and found your blog from one of your posts on Baby Center. My son Parker was born March 30th with a cleft palate, we were also unaware until he was born. I have back-read your blog, and can relate to so much of what you are saying, especially the nursing part. I nursed my first for a full year, and it's been horrible for me to accept the loss of that bond with this baby. I'm continuing to pump as well. Parker's cleft repair has been scheduled for December 7th. I would love to correspond with you. You can find me at wwwrottenrascal.blogspot.com.