A Mother's Heart....

Before Caden was born I was fortunate to only know how to parent "typical" children. I would go to their checkups eager to brag about all the milestones they had reached and walk away proud as punch that my children were doing so well. I would call all the grandparents to say that so and so was in the "90th percentile for height" or the doctor was so impressed at how many words she could say. I have now entered a whole new world of parenting.

Today I brought Caden in for one of his check-ups. Instead of walking out of there eager to call everyone to say how great he is doing I walked out of the doctor's office in tears with a referral to a neurologist. Caden is in the 5th percentile for height, weight, and head circumference. He is also a little bit rigid in some of his joints which could be an indicator of other problems. I thought we had covered about every aspect of Caden's health that was possible; we are now needing to see a neurologist. I just feel a bit defeated today. It seems just after we feel things are settling down something else arises and our world turns upside down again.

Being a mother has always been the greatest source of joy in my life. I am now experiencing some of the deepest pain I think a mother can experience. Being unsure of what is going on with your child and seeing your child in pain is extremely difficult. Caden seems like such a mystery sometimes. I never realized how"typical" my other children were until I had Caden. The uncertainty of all of this is really taking a toll. Where will all of this lead to? What does Caden's future look like? I guess in reality I really don't even know the answers to those questions for my other children.

For now, I will continue to pray, take things one day at a time, and be thankful for all the many blessings that I DO have. I will try not to question too much, and I will give Caden all the love in this mother's heart.

Mary

Recovery.......for all of us

Recovery has been quite a roller coaster for all of us. After we brought Caden home from the hospital after his surgery I think I was on a post surgery "high" for awhile and then I kind of crashed. Not only was it tough to see him in pain and having trouble breathing because his nose was plugged, but I realized I was so focused on the surgery for such a long time that it was a great distraction from all of Caden's other issues. Once his surgery was finished I was so happy that he made it through and looked so great, and then it hit me that this was not the end of the road. See, while I was pregnant with Caden we only knew he had the cleft lip and palate. We were pretty certain there were not any other issues. I kept dreaming of the day Caden would get to have his surgery and we could sort of move forward with our lives. I knew a cleft lip and palate were always going to be an ongoing issue with repeat surgeries, orthodontia, and speech therapy, but the surgeries were the big deals. It suddenly struck me after Caden's surgery when we were at the plastic surgeon's office and surrounded by other kids with repaired cleft lips that Caden has other things that can't just be "fixed" by surgery.

When I was pregnant I was devastated that Caden was going to have a cleft lip and now I wish that was all we were dealing with. It makes his encompassing diagnosis so real now. The lip repair was just one of the many things we have to walk through with our baby. Don't get me wrong, I am ecstatic with the outcome and so relieved that the surgery is over. It definitely is a weight off of our shoulders to have this surgery behind us and that he did so well, but we are still on an uphill battle with our little guy. The doctors appointments, therapies, and questions continue.

The good news is Caden is as happy as a clam these days. His nose stints are off and his arms no longer have to be in restraints so he is a free man! He rolled over for the first time last weekend, too, and we were so thrilled! He is just a little love and he probably thinks he is the cat's meow because everyone is always smiling and kissing on him! His personality is really coming out, too.

The biggest battle for us right now is to try and get his reflux to improve and work on consolidating his feeding so that he is not hooked up to the feeding pump 24 hours a day. It would be great for all of us if he was able to bolus feed someday. That way he could eat 3 or 4 times a day at a half hour each time. This is our next hurdle. He just doesn't seem to tolerate much in his stomach at any given time. He is also refluxing a lot still, and it is hard to watch him choke and gag so much. We are praying for something to change in this department.

On to other news, by the pictures I am sure you can see we added a new member to our family. Snowflake, the bunny, was given to Cara by the "pacifier fairy" Easter morning for giving up her pacifier and blanket. Snowflake has been a lot of fun for the girls. She really likes to be held and Cara is so proud to have her very own pet. If that bunny could only wear a diaper when she hops around it would make things a bit easier. I forgot how much pooping rabbits do!

I hope everyone had a great Easter holiday. Thanks for all the prayers for Caden during his surgery. Also, thank you to the many people that helped with meals and the kids, and dropped of goodies. You people are amazingly thoughtful.

Mary