New Blog

Because of all of the scary things that I have heard on the news. I don't feel comfortable putting pictures of my little lady openly on the web. The Utah Cleft Group has created a wonderful site with useful information which I will defer to. Grace did have her surgery and everything is going well. The recovery is a long process however, and it is hard to have to watch her be so tough (but she is). Here is the site for the Utah Blog:
http://kidswithcleftsutah.blogspot.com

Baby Grace Has Arrived

Baby Grace joined us at 11:34 PM on September 13, 2009. She is beautiful and doing very well. She was 8 lbs 15 oz and 21.5 inches long. She has a unilateral incomplete cleft on her left side. We are so blessed that her pallet was not affected and she is nursing like a champ. We are so proud of our little lady!

Bands Just In!

I just got these bracelets in for Craniofacial Acceptance Month! Now to track down everyone I can to wear them!

September is Craniofacial Month!

I know here in Utah we are doing a picnic on the 19th of September. I hope I am able to go but it just depends on when Grace arrives (although I don't think she will be going if she is here already!). Most states seem to have one taking place this month, so you may want to look into it. Also you can call and order support bracelets from Jill Gorecki at 800-535-3643.

An Option for Babies Hands

I was told about these the other day to use instead of the NoNo's after surgery. I haven't used them yet as Grace isn't here yet, but I thought I would share now. I think I am going to order one, just to make things a little better for her. Let me know if you have tried them and what you think!
http://babyhandsdown.com

more ultrasound pictures

I just wanted to share a couple more ultrasound pictures for those of you who would like to see what they look like. It may be good if you are wondering and want to compare as well. We really got some great shots. I just think she is too cute for words!

New Update!

We had another ultrasound today. Although she really wouldn't cooperate for the first 20 minutes, we were persistent and she finally did. I can't get over how cute she is with those chubby little cheeks. She is growing a little ahead of schedule, but they still think that the cleft lip is unilateral and fairly minor on the left side. The ultrasound tech, said that we are handling things very well and seem to be very prepared for her arrival. We are doing the best that we can and trying to get everything into place. Although we still won't know the severity for sure until she arrives, we are optimistic that she is going to be great! We can't wait to meet this little one. We love you Grace!

Pediatrician

I was told that it is very helpful to have a pediatrician ready to go for your baby, and to make sure that they are aware in advance of her cleft lip. We went and met with a recommended pediatrician and loved her. We are so excited and Dr. Baar is going to try and come by and see our little one at the hospital when she is born. Someone from her clinic will be there for sure she said. It is a great to start getting all of these little pieces in place. She also wrote me a prescription for a medical grade breast pump, which is nice to know I have and can get started on getting that to my house and ready. Time is getting closer... Can't wait to meet my little girl!

Pacifiers

I was told by LeAnn at Primary Childrens that we will probably want to have a special pacifier for when Grace finally arrives. She told me about Wubbanubs that you can buy from places like this:

http://www.wubbanub.com/wubbanub-pacifiers.html

Wubbanub Infant Pacifier - Pink Horse

I decided to try and make my own at home. McDonalds has the small Ty toys with their happy meals right now so I thought that would be perfect for a newborn. Then I bought the Soothie pacifiers for Newborns and just sewed them on. I guess these are great for Premature babies as well, so they have something to hang on to. I think they turned out okay!

Choosing a Surgeon

Yesterday was a very big and stressful day for our family. Choosing a Surgeon is a very big and difficult decision. We wanted so much to get the best person we could find to work on our little girl. I know that this will impact her for the rest of her life, and I felt a lot of stress worrying that we were going to make the right decision. Over the past couple of months, I have been doing a lot of research into surgeons in our area. I created a spreadsheet (I know it sounds a little silly) where I had their names, information, number of surgeries in the past year, any awards or recognition, whether or not I had received any recommendations about that surgeon, and even looked at pictures from their surgeries to see who I thought was the best. I talked with many mothers here locally about their experiences with their surgeons, why they chose them, and even got to see a lot of pictures. After all of my research I cam to the conclusion that Dr. Morales here in Salt Lake was the best. I was aprehensive however, because many of the families and mentioned that his bedside manner wasn't very good. I knew that I needed to feel comfortable and trust my surgeon in every aspect before I would hand my little one over, so we decided to go and meet with Dr. Morales. We met with him yesterday and I was so impressed. He was very direct (which is good), but also very kind. We looked at a lot of results, went over the processes, and discussed plans, he looked at our ultrasound and gave us some insight and was just overall fantastic. I feel so much better knowing that my little girl will be in his hands. He did tell us that he thought based upon our pictures that the palate was most likely not affected, but he thought maybe she would have a little hitch on the the other side as well making it a bilateral cleft lip instead of unilateral. He did say that they look incomplete however. Obvioiusly we have to wait until she arrives to see all of it, and know for sure. Although I am still very nervous about the surgery and sending her off, I do feel much better knowing that we have made a decision and have a person that we trust to work on her. We will start 6-8 weeks after she arrives either with a surgery or with pre-surgery preparation depending on whether or not her palate is affected. What a big day for our family.

31 weeks and counting!

We are now 31 weeks. Art and I attended a 3rd trimester class to prepare us for labor and birth. I am really glad that we went and I learned so much. One of the main things I took away is that I have so much to focus on and do that day, that I can't be stressed at all about her cleft. It made me even more glad that I found out now and am able to learn and prepare in advance. Although I will still think about it often, and prepare for it for her (finding the right surgeon etc.) I have to focus on bringing her safely into the world. I love this little girl! We meet with a potential surgeon tomorrow. I will let you know how that goes.

Camping!

We went camping this weekend. I think Grace really likes it because she was very busy the entire time. I think I may be a little bruised in a couple of places because of all of her kicking. I love this little girl!

Information

Although I was a little overwhelmed last week I really felt like I walked away with some great information. I am now prepared no matter what we find out when she arrives. We will be getting one more ultrasound at 34 weeks, so maybe they will be able to see even more.
LeAnn took some time at the hospital to walk us through bottle feeding our little one, just in case she is not able to breastfeed. Some great things I thought that she shared is that I should allow her to try anyway, as it makes her feel like she is accomplishing things. It broke my heart when LeAnn told me that Grace will come out after practicing to eat for nine months, thinking that she has it down, and when it becomes hard for her, she will wonder what I am doing wrong, because she won't understand that it just won't work for her. I will still do the best I can and work on getting that connection and letting her know that she is doing a great job! The bottles are a little difficult, and I hope to remember all of the pieces and "little tricks".
She also gave us some information sheets that you can find online at their website:
https://kr.ihc.com/ext/Dcmnt?ncid=520408176
Now we are on to deciding on a surgeon. It is a very difficult decision. I have created a spreadsheet with all of the facts about each surgeon, history, awards, peoples recommendations. I think we are going to go and meet Dr. Morales as I have heard great things about him, and then maybe follow up with Dr. Warnock if we don't find a connections with Dr. Morales. (these are personal opinions although I am sure all doctors up there are great). I will keep you updated on the process, but I highly recommend before you have a surgery to really research your doctor, look at pictures, and ask people what their experiences have been. I will give more information soon!

Interesting Information!

Things went well yesterday when meeting with LeAnn at Primary Childrens. I have some great information to share, however, I will wait to do that until next Monday. I know it is the best, but she did go over everything with "worst case scenario" and I am still a little emotional worried about what my little girl will be going through, so maybe I can process it better by Monday. I did learn and interesting fact though, that although nationally kids are impacted by clefts about 1 in every 600/700, but here in the state of Utah it is 1 in every 450. She also said that St. George seems to be even higher than that. I thought that was interesting. Also one of the ladies on the Utah Group put this website up for Haberman feeders. I won't be ordering any yet, but I thought it may be useful to you.

http://www.kidsurplus.com/itemDetail-item-19%20MED%206000S~catid-218~fromsearch-true.asp

Update!

So nothing new yet, but we do go in to Primary Childrens Hospital here in Salt Lake City, Utah on Wednesday to meet with the nurse in charge of scheduling us to meet everyone involved in the cleft clinic. We have decided to take the clinic approach for sure so we know what to expect from the start, and to be able to have all of the doctors working together. I will post an update after our meeting there.

Also Happy Birthday to Dad! Art is 31 years old today.

I thought maybe you would all also be interested in this drawing, wouldn't it be fun to tour around with the little ones! (also on the sidebar)

Baby Update

We went into the doctor today for an ultrasound. Our little girl is doing very well. She finally decided to cooperate for some pictures so we could see her lip. It turns out that it looks like her cleft lip will be pretty minor. We were so realived to hear this. We are going to be referred to the cleft clinic at Primary Childrens within the next couple of days and should be attending soon. Here is a picture of her ultrasound, where you can see the cleft image. It is on the left side and it doesn't appear to go all of the way to her nose which is great news. It is amazing what they can do with technology these days. They did try to look at the Palate, and they told us that it is very difficult to see on an ultrasound. They were not able to see any fluid in there, so they think that is a really good sign. Sometimes when they are more severe you can see the fluid and know right away that the Palate is affected. They also looked again at the rest of her features. Here heart is good, her brain looks good, and they don't see any other concerns. Yeah! For now, we are just going through each day and looking forward to going to the clinic so we can learn more, and know what to expect. Isn't our little girl just beautiful! I can't get over her peaceful little look. We love you baby girl!

What Went Wrong!

After I found out that Grace was going to have a cleft lip, I asked myself what I did wrong. I was told that often times it can be genetic, however, neither Art or I have any history in our family of cleft lips. So I continued looking through my research online. Many articles say it could be because the mother exposed herself to something that caused this to happen. I felt so horrible, that maybe it was my fault. My doctor reassured me that indeed it was not my fault and things like this just happen. Our little girl just picked us, and she is going to be just fine. For those mothers going through their lists out there too, just to see if there is anything that happened, here are some of the precautions that I took, and our little girl still has a cleft lip.

-Grace was a planned baby and we wanted her so badly. In preparation I started taking prenatal vitamins five months before I became pregnant. I even took the vitamins to my doctor to make sure they had all of the correct and healthy ingredients needed. They did!
-Upon conception, I no longer drank any alcohol (although it was occasional prior to that)
-I have never smoked a day in my life!
-I stopped drinking caffeine-oh how I miss my coffee and mountain dew on occassion!
-I started eating healthier-more fruits and veggies, soy milk, cheeses etc. No hot dogs, sushi, or cesear salad etc.
-I even contacted the EPA to ask about the quality of the water from my home and workplace to make sure it was safe to drink. I shared the results with my doctor and pregnancy risk line and was informed by both, that the water in my locations would be way better for my child than bottled water.
-I bought a metal water bottle, so as to avoid any plastic issues in my water.
-I called the pregnancy risk line and talked to my doctor to make sure my face/body wash was safe for my child.
-I continued to exercise, but was much more careful, not pushing it, and not playing any contact sports.
-I didn't paint in my house, clean with harsh chemicals, or work in the garden. My husband was very helpful. Later in my pregnancy I did paint a dresser, but I wore a mask the entire time.
-I didn't go in places that I was worried would not be healthy, I was aware in every way possible.

Needless to say, I was very careful. I did the best that I could do to give my baby a good start. I still wonder what happened, but I know now that sometimes it just does. It doesn't pay to be hard on yourself or cause added stress. Sometimes it just happens and we love our girl no matter what! Now we move forward and try to make sure that we give her the best chance going forward, the same as we did in the past. So for mother's out there in my same position, I hope to share the message, that it isn't your fault. It just happens some times, and your baby will be okay!

Welcome

My name is MeriAnn and I am starting this blog to tell all about our journey and experiences relating to our child with Cleft Lip. My Husband and I were at our routine 20 week ultrasound. Everything was going well, until the technician started turning her head to the side and then left the room to grab the doctor. We became very worried, as we weren't sure what was taking place. The doctor came in and he too, started looking very closely. Our little girl is so active, that they had a very difficult time being able to get a good view of her nose and lip area. Finally he got what he felt was close enough, and informed us that our little girl (Grace) was going to have a unilateral cleft lip. I cried, and although the doctor was informing that it is probably minor and cleft lips are something that are very common and easily fixed, it didn't quite set in for me at the time. I started to worry about my little girl having to go through surgery, about her being made fun of in school, and about all of the hardships she would have to face. I couldn't stop crying. It only got worse when the doctor informed me that sometimes cleft lips can be a part of a bigger problem, and that they would be doing additional testing. My Husband and I spent the day talking about it, crying, and feeling so sorry for our little girl, and so worried that we would have more to face. Three days later we recieved a call from the doctor that the additional testing had come back negative and that they think it is an isolated issue with just the cleft lip, although they can't see the palate. A huge wave of relief took us over, and we knew that she would be okay. Although the worry of having Grace have any hardships in life won't ever pass, we are more prepared to face the future with a positive outlook. Some people call me the internet research queen, as I am a huge internet fan, and spend a lot of time, just learning and figuring things out, so that is where I started my search to become as knowledgable as possible about what we had to look forward to. I found many medical sites, but really wanted to hear about personal experiences. I found it difficult to find individual stories from people about their experiences, and I wanted to create a place for people in my shoes in the future to go to find information and connect. I have recently seen some blogs about children with cleft lips, but they are under their own names and difficult to find, in a search engine. I will be updating on our experiences and thoughts, as well as hopefully posting some new ultrasound pictures soon where you can see it, hopefully we can get those. Please feel free to email me or comment here with any questions, or to leave your personal blog that details your story about cleft lip or cleft palate that I will link to on the side. Welcome everyone, and I hope this is helpful.