Joyful Noise

Life just carries me away sometimes. There aren't many moments where I can just sit and write. Sun up to sun down, there are people to take care of, chores that need to be done, errands that need to be ran... I am sure you all understand. My year (and a half) in review is fading quickly from my memory so I have decided to comment on our most memorable moment of the year, which is the birth of our littlest blessing, CB. She was born on April 28th. Her birth was a blessing because it was a successful v-bac delivery. I labored, we went to the hospital, they hooked me up for some good pain relief and she came so calmly and perfectly timed. I was due on Friday May 1, but my Dr had told me that Tuesday worked great for him since he worked all that day. Well, she is such a good girl that she must have taken that to heart and came on the Tuesday before her due date. Shortly after she was delivered, I tried to feed her. I though it a little odd that she didn't eat right away as the others had done, but really didn't think too much about it. After several minutes in my arms, the nurse took her to check her out. That is when we heard first word of CB having a cleft palate. Her lip was in tact, just her palate was missing. None of that showed up on the many ultrasounds so it really was unexpected. I think we took it quite well considering. She was quite healthy and surpassed what I think everyone expected of her. At first, the concern was getting her to eat. Nursing wasn't likely, but not impossible. We tried and tried and tried to nurse, but it wasn't happening, so out came the PUMP. Really, it is quite natural for me to nurse a baby in front of nursing staff, friends and family, but having the dreaded pump hooked up while you are trying to talk to someone is not only distracting but a little embarrassing. I am thankful for the staff that walked me through the process of doing this and also for helping me use a special bottle for her called a haberman feeder. One of the nurses that helped me the most was some one that I went to school with. Although, I didn't know her all that well, it was comforting to see a familiar face. At first the staff had wanted to keep us longer than the normal 1 day stay in order to make sure that CB could eat and gain weight, but she did stellar in so many areas that they released us from the hospital the next day. I was so thankful for that!!!

This next part always gives me goose bumps. As we were being discharged, there was a student nurse that was with the hospital nurse. I was so tired that I didn't recognize her at first, but she is the sister-in-law of my childhood best friend. As we were leaving, she said that she wasn't supposed to give out her personal info but since she already knew me she told me that her daughter was born with a cleft palate and that if I needed anything at all to contact her though me friend. I felt so blessed that God placed her, of all people, in my room that day. I might add that she was only a week from graduating form the nursing program and that she was not staff at the hospital so if had been a week later, she wouldn't have been in my room that day. I will actually come back to her later in my story of CB. So, we have our baby girl home at this point and we have an appointment at Children's Hospital for when she is 2 weeks old. While we are waiting, we notice something slightly odd about her chin. It wasn't much to go by, but it seemed as though she didn't have much of a chin- it just seemed small and set back some. She also would make this horrible gagging noise in her throat. I pretty much slept upright with her on my chest because it didn't seem to do that sound as much when she was in that position. I started doing some research on the Internet and began to wonder if she had something called Pierre Robin Sequence. It is not considered a syndrome so much as a series of events- the chin forms small and/or recessed, which caused the tongue to float up rather then be pulled forward during the time of the formation of the palate. My suspicions were confirmed at her 2 week check up. The Dr felt that she was doing well despite that diagnosis but wanted her to have weekly weight checks and another appointment at 6 weeks old. I cannot tell you what exactly changed, but at about a month old, she was gaining weight and she stopped making that choking noise. Her jaw was expected to grow and pull that tongue forward over time, but her progress started so quickly. By the time we made it to her 6 week appointment, she was doing great considering the diagnosis. I was told to let her sleep on her tummy not her back to keep the tongue forward and out of her airway and also to keep using her special bottle. In the mean time, the Dr here at Kitsap Children's told me that a nurse at the hospital had suggested to her that maybe CB had Pierre Robin, but that she hadn't thought that at the time. She said she wished she knew which nurse it was to tell her that she was right. Well, I had a suspicion and called up my friend to ask if her sister-in-law was the one. She was in fact the one because her daughter that was born with the cleft palate also had Pierre Robin! Goosebumps! Her sis-in-law said that CB was only the 3rd case of this in Kitsap County. Especially considering how rare it is, I find it awfully kind of God to bring her into our hospital room that day. And just to show what a giving God he is, he let me meet one other person with Pierre Robin quite coincidentally. About 3 month ago now, on the first day of soccer practice, I saw a van with the business logo of a lady who I had received some homemaking magazines from via freecycle. Jason had gone to pick the magazines up for me over a year and a half ago so I never met this particular lady. When we had made the arrangements though our e-mail for him to pick up the magazines, this lady and I realized that we had some people we know in common. She is a birth doula and she is actually the one who recommended the DR that delivered CB because he is one of the only ones that will do a v-bac in Kitsap County. So, at practice, I watched a boy get out of the van and walk up to someone that I assume was his mom. I decided to introduce myself. I thanked her for her recommendation for the Dr. and then proceeded to tell her about CB and her condition at which she said "Do you know how rare that is; my son has Pierre Robin and was born with a cleft palate!" The boy I had watched that led me to her was the son with Pierre Robin. I don't know if the statistic that CB is only the 3rd case or not, but if it is, then we just met the 3rd case without even trying! How amazing is that- God put both of these people where they were for me to meet. More goosebumps!

So, here we are at 6 months old. I think I expected her to be delayed because of all of this, but it is quite the contrary. She started inch worming and rolling both from front to back and back to front at about 4 months old. She got 2 beautiful teeth then as well. Within the next month, she was crawling and now she is pulling herself up! She is proving to be a go-getter for sure. We have an appointment in a week or so, where they will test her hearing and her sight. They should also tell me more about when to expect corrective surgery for her palate. Normally, I think they do it before year except when dealing with Pierre Robin patients. They wait until they are close to 18 months old to allow for more growth in the jaw. When you fix the palate it restricts breathing to some degree so they want to make sure that the jaw/chin thing isn't restricting the breathing as well. At her 6 week appointment, the Dr. did say that he thought the surgeon may consider doing it closer to a year old since she was doing so well. I would like it to be sooner than later to help with speech but I am just praying for success no matter the timing. Also, just another turn of events that I find interesting is that we found out that G-man needs to have jaw surgery in about year which is the same surgery that we were told CB will need when she is his age. We won't know if CB's Pierre Robin is an isolated case or related to some other syndrome until after her appointment in week, but if it is an isolated case, it makes me wonder if it is somehow related to G-man's jaw issues. Maybe hers are just more pronounced and that it is what caused the cleft palate with her. I guess we will find out more soon. Please keep us in your prayers!

This is the most recent of all of the children together. We took a trip to the zoo in May, so CB is only a month old or so in this one. I really will do a year in review here soon, but I am finishing up a yard sale tomorrow. It's funny, but when I started our family blog, I had been prepping for a yard sale then too. We like to do one each year so we have a little fun money to use for our summer activities. I can't justify spending money that should be applied to bills on things like the fair or swimming. We did go the fair yesterday though. We used some of the money we got selling 3 of our goats. The kids earned our family free tickets from the library by reading at least 10 hours (although they did at least 30 hours.) The kids each paid for their own ride tickets so all we paid for was some food. Not too bad on the budget and we all had a blast. The animals are my favorite! I know it may seem strange, but I just love the smell of the barns. Even though we have goats, ducks, rabbits and chickens of our own, it makes me long for the farm life.