August 21, 2007

First Couple of Weeks!!

I think one of the biggest issues cleft parents face is feeding. The hospital sent us home with Nuk nipples and squeezable bottles. We had to squeeze every bit of milk into his mouth. Then we got in touch with some nurse at Shands Hospital in Gainesville, FL and they advised us to use the Mead Johnson nipples. They have a cross-cut tip. They worked better and we could get more down him faster than the Nuks. The Nuks were taking anywhere from 45 min. to 2 hours to get 3-4 oz. down. The Mead Johnsons help us to only 20-30 minutes. There are a few more "cleft nipples", but these are the only ones we tried.

Finally, a friend showed us the Haberman nipples. We had heard about these and the Boston staff advised us to use them. We just didn't get any from the hosptial and hadn't ordered any yet. THEY ARE WONDERFUL!!! A HUGE LIFESAVER!! This website gives specifics on how to use it - http://www.medela.com/NewFiles/pdfs/Haberman_Inst.pdf



We used the longer nipple. Bauer didn't do well with the shorter. I've heard the smaller one is for smaller mouths. Don't really know.

It took us (mom,dad, and Bauer) a few times to figure out how to properly use them, but once we did it was great. He did a lot of it on his own and was still getting down at a normal rate.

With any of these we had to remember to BURP, BURP, BURP!! So much extra air getting in means lots of extra tummy bubbles coming out!! :)

We found another cleft mom's suggestion for leaking bottles. Occassionally, the teats (nipples) will leak if not put on properly. Somtimes they're on right and still leak a little bit.

"We discovered how to eliminate or minimize the leaking. If you notice there is a grove in the disc. This is where the leaking milk comes from. A simple way to fix this is to line that groove in the disc up with the flow line you use and the tab on the collar. This will keep the grove always on the top so milk doesn't drip out of it. I loved these bottles and hated them until I learned to put them together right. Also, not all store bought bottles will work with them. With some the teat will pop right off. What a wonderful thing to happen when you are trying desperately to feed a starving baby that has a hard enough time to eat. The Haberman shouldn't be boiled like you would your other bottles. Exposing them to hot water can ruin them and cause them to leak. Even warm milk can do damage. When I called Medela about this they said only serve room temperature milk in the Haberman." (cleft mom)

BIRTHDAY!!

He's finally here!!! July 17, 2007 at 2:36 a.m. our beautiful boy was born. We were so excited. I was very thankful that we knew what to expect beforehand.


After birth we found out both palates (hard & soft) were cleft. Maybe it's a mom thing, but I immediately went into "medical mode". I just kept thinking, "okay, when do we go the hospital?, how do I make it easier for him to eat?, can he swallow?, will he need a Latham device? ( www.newfacesfoundation.com/Latham.html ), how early does the surgeon need to see him?, will he need tubes in his ears soon?, how is his hearing?, etc. etc.



We were just trying to prepare the best we could to make this as smooth as possible for Bauer.


It's amazing how quickly we didn't "see" his abnormality. Through our eyes he was a normal beautiful, happy boy. In the hospital the doctors and nurses were surprised and excited that he could get a little bit of suction and was eating so well. We were beginning to understand that our baby was just as normal as any other baby. He would just need a little "fixer upper". These pictures are of him in the first week.




May - June 2007


Over the last 10 weeks of our pregnancy we heavily educated ourselves. We were scared to death with what we witnessed off the internet. Nobody had given us any idea of what to expect. The first time I typed in "cleft lip/palate" my husband and I just took turns crying the rest of the night. These are some examples:
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First, your child will NOT end up looking like these children after surgery. In fact, the majority of all cases are finished by 18 months. Other than maybe a few crooked teeth, their outlook will be nothing like this. I'm not a doctor and I can't guarantee your final result, but from what I've found nobody ever goes past 3-4 yrs. old without almost everything being completely repaired.


After reading articles and speaking with families familiar with this issue we started to realize that it wasn't going to be the end of the world and that every part about it, no matter how extreme, was repairable. It didn't mean the next year would be stress free, but it was reassuring knowing that there was a "light at the end of the tunnel".
In May a friend of ours found at Children's Hospital in Boston, MA. http://www.childrenshospital.org/ We had been looking around at different hospitals not really knowing what was good and what we should stay away from. I contacted this hospital and within 12 hours I had talked to both surgeons. After speaking with them we knew it's who we wanted to use. It's like the Lord just flew up the doors to these people. Dr. John Mulliken is one of the surgeons. He regularly answered our e-mails and phone calls. I think this was one of the most impressive points about CHB because we hadn't yet given them a dime of our money. It was easy to see that Dr. Mulliken was passionate about his work and his joy came from changing the lives of children.
We sent the hospital our 2d & 3d ultrasounds and they discussed the possible degrees of cleft we could be facing. They suggested getting a fetal MRI to find out about the palate. By this time I was around 34 weeks pregnant and didn't feel comfortable flying up to Boston to have it done. We would have to wait until birth to get an answer. However, I highly suggest doing this. Even though finding out doesn't change anything, it gives you a head start on what to expect. Make sure you find a place that has experience doing this. It's not a popular procedure and only a handful of hospitals do it. All I know of are Boston and Vanderbilt.
But if you are unable don't stress about it. We decided it would be best for us to just prepare for the worst. Then aren't any surprises!!

April 24, 2007

On April 24, 2007 we were 30 weeks pregnant. We were both very excited to soon be getting a 3-d view of our baby boy. Was he going to have my face? my husbands? could we see his hands? his feet? As we watched him move around we noticed something wasn't quite right. My husband asked, "Are his lips suppose to look like that?". The ultrasonographer went to get the doctor. Of course, we were immediately in "oh-no-what's-wrong" mode. The doc came in and told us the baby had a cleft lip. They wouldn't know anything about the palate until birth.

He said it only happens in 1 and 800 births. I'm not sure if that was suppose to make us feel better or not. Honestly, at that point I don't know that anything could have made us feel better. Naturally, my husband and I were scared and confused at what we had done wrong. A few days later our doctor suggested we see a "specialist". (Our OBGYN team was very supportive and tried to help in any way they could. We couldn't have asked for better)
Unfortunately, the specialist wasn't the most tactful. As if we weren't scared enough, he decided to let us know our child had a 5% chance of Downs Syndrome because of the cleft. We soon found out that there is no correlation between the two. Several other doctors gave us a strange look when we asked about it. We're still kind of confused at what that guy was talking about.

One thing I want to mention is that he actually brought up abortion. When someone says this you automatically think, "It must be bad if that's an option". Trust me, this guy was the worst person for us to go to. We never would have aborted for any reason, but he made us feel like our new adventure into parenthood was going to be anything but joyful.

Let me fully assure you that cleft/lip palate is not as bad as this doctor made it sound. It is a challenge and involves research and special needs resourses, but please know that it can be dealt with in an incredibly successful way.

NOTICE!

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