It was one year ago August 30th since we found out Paige would be a girl, healthy and bjavascript:void(0)orn with a right unilateral cleft lip. This logo was one of the first images I associated with joining the Cleft Family. September truly was my personal Craniofacial Acceptance month as I processed what this would mean for my baby. I also needed the support of my faith, family, friends and the Cleft Lip/Cleft Palate board on Babycenter.com. This group has meant soooo much to me and really helped me through the different things we had to go through. Thank you all! I hope that our experience here can be helpful for others who have the first year to get through. You can do it...it will all get better...and each part comes one thing at a time. You too will look back a year after finding out and wonder.
Here is this last year in review:
The minute we saw her she was perfect! So many worries melted away. The fact that she had only an incomplete cleft was a surprise but so was her complete cleft palate.
Breastfeeding didn't work for us as hard as I tried and hoped. I have been exclusively pumping for almost 8 months and hope to go to at least a year. We tried the haberman, pigeon and finally just a regular nipple with a cross cut. After her lip surgery she didn't even need to have the nipple cut because she figured out her own way of bending the nipple against her bottom lip to get the nipple to squirt out into her mouth.
At two month she had tubes put in because she hadn't passed her hearing tests due to fluid behind her eardrums they could not drain due to her palate.
These were the first and last days of enjoying her wide smile. I miss it...
Surgery At three months she had her lip/nose repaired. The pics below was our first time seeing her new face and trying to feed her after she woke up from anesthesia. A cupid's bow...something so many take for granted. First smile post surgery... Learning to tape nose stents and no-no's was a learning process... At 4 months with out nose stents for a day for Easter.
We got better at taping them using the tabs cut in half from clear rite aid bandaids. Wore nose stents until six and half months when she decided to swallow them and poop them out .
Now she is 7 months, almost 8 and enjoying NO nose stents, solid foods, crawling, pulling up and saying "ma ma ma"! Basically just being a happy baby who has food come out her right nostril from time to time. Her palate surgery will be in late Oct. or early Nov. Not looking forward to it but looking forward to getting through it and returning to just regular baby things and maybe a little speach therapy.
Some tears from time to time.... She is very proud of pulling up!
Okay okay...she has been here for two months. But shouldn't my first blog since her birth be an announcement. I apologize that I have not kept up with this since her time on this earth, out of the womb....but as many of you know, it takes a little bit of time getting used to the whole parenting thing. I hope to add to this blog more regularly in more bite sized portions...this first post will be a doozy, as we catch up a little on Paige's beginnings.
Birth
I went into labor at 2am on 1/1/11 and was convinced that I would have a New Year baby...but after 32 hours of labor and very very slow progression, Paige was born via Cesarean on the morning of January 2, 2011. Before I could see her....I heard everyone say, "Oh she has so much hair...now that's a good sized baby." Phil got to see her come out and was right by her side as she was weighed, measured and assessed as healthy. She was quickly wrapped up and put on my chest. I held her with my own hands for minutes just looking into her big wide gray eyes. That is what I remember the most. I had to remind myself to look at her lip. It was so secondary to what was happening the moment I laid eyes on the most beautiful baby I had ever seen. I was a mom....she was ours! We had made this little being and were now entrusted to care for her.
Most commonly asked questions...
How does she eat?
I was encouraged to try and breastfeed her right away but because we couldn't trust how much milk she was getting, due to her cleft, we had to bottle feed and supplement with formula for the first couple of days. Phil and I had it down. I would breastfeed her for five minutes and then hand her off to Phil while I pumped the rest and he fed her milk I had previously pumped and then finished up with formula until she was full.
We started using the Pigeon nipple which is really wide with a cross cut that allows the milk to flow a little faster for her. She drank so slow...we were excited when she drank 10ml in an hour. We then tried the Medela Special Needs Feeder, which are special bottles that have long nipples that go far into her mouth and has a part of the bottle that allows you to squeeze milk into her mouth. The only thing is this bottle costs over $25 a piece. Both of these bottles are specially made for babies with clefts but many babies are successful with regular bottles with cross cuts that you do yourself. For cost reasons we decided to try this and settled for Dr. Brown's bottles. It's nice to just use a bottle that looks like one any baby would have. She can now get down 2-3oz in 30-60 min. It only blurts out of her nose from time to time, and she really hates it when it happens. She just looks at me with tears in her eyes, like "Why?" The feeding nurse at CHOC and her pediatrician are very pleased with her weight gain and are not concerned. She was 9 lbs 10 oz two weeks ago. They require her to be 10 lbs and 10 weeks in order to do her first surgery.
Ultimately she does not have enough suction to breastfeed and therefore I am exclusively pumping. I was very happy that I have enough milk to have a supply in the freezer and she does not need any formula. It is a lot of work but I am happy to do it. She is completely worth it. As of today I have pumped more than 293 times and over 140 hours. Fun facts available because of an iphone app tracker. As Phil likes to say..."we live in the future." The nice part of bottle feeding is that I have the help of others to feed her, like Paige's wonderful daddy and even her little cousin, Lily!
What is her Cleft like?
We were happily surprised that her lip was considered an incomplete cleft. That means it does not go all the way through her nostril. We were not able to tell this on the ultrasounds. Her nostril is intact but a little flattened. Her case should be a little easier to fix. Her gum line is affected but it is also incomplete. Which means there is a notch but it too does not go all the way into her nose. Her soft and hard palate are completely clefted. It looks like an open slit in the roof of her mouth and because of the separation her uvula is separated and appears to be missing. The surgeon will probably sew it back together so it looks like she has one. Her lip and nose will be fixed about 3-4 months and her palate will be at 9-12 months. I hope to get a better picture of her palate soon and I will post it once I do. You can always click on the "Paige's Cleft Journey" page to the right for updates on her surgeries and such.
Our little girl...
In some ways its like her cleft isn't even there for us and truly is just a part of her, but in many ways it gives her personality and I think its cute. I heard before that people miss their little ones' first smiles after surgery, and I am beginning to totally understand that. Here she is at 5 weeks old giving her very first smiles.
