Omphalocele Awareness Day

JOIN US AS WE CELEBRATE OMPHALOCELE AWARENESS DAY

JANUARY 31, 2013

Who are we? We are the Mothers of Omphaloceles, also known as The MOOs. We are parents, grandparents, family and friends, over 600 strong, who are all connected by a birth defect known as omphalocele. Some of us are anxiously awaiting the arrival of our special “O” babies. Many of us have young children and teenagers who were born with the condition. There are several of us who were born with an “O” and are now grown adults, some with children of our own. And there are the parents of “O” angels. We have come together from all across the world to form a community of strength and support. Today we are asking for your help to spread awareness about omphalocele.

What is an Omphalocele? It is a birth defect in which the abdominal wall does not close properly, allowing abdominal organs to protrude into the umbilical cord. In some parts of the world it is referred to as an exomphalos. It is often detected between the 12th and 20th weeks of pregnancy. It is estimated that a small omphalocele occurs in 1 out of every 5,000 births, a large omphalocele 1 in 10,000. At this time there is no confirmed cause for the condition, and no cure.

There is still a lot of misinformation about omphaloceles. With the latest treatments the prognosis for our children is good. But many medical professionals are unaware of those treatments. Many of us are told that our babies will not survive. Many of us are advised to end our pregnancies. We are told that our children will most definitely be born with additional complications. But what we have learned in our community is that our children CAN and often DO survive when given a chance. With advancements in pre-natal screening and treatment options, including surgery and non-operative management (aka Paint and Wait), the mortality rate is drastically reduced, and more of our babies are living and thriving.

Today we are asking for your help in sharing this message. We are asking all of our friends, families, associates, medical team, and children to wear white and black in honor of our courageous children and in memory of our “O-Angels” and their families, January 31, 2013.

New Year Update

I hope everyone had a nice holiday season & are enjoying the new year. The kids are doing well and are still playing with the toys they received for Christmas! I know in years past we have bought something thinking Ryan would love it and he does, for about a day and then it never gets played with again! Haha! I guess that’s a benefit of having 2 kids; if one doesn’t like it then the other might. Katelyn’s favorite toy by far was/is a baby doll & stroller. My friend got her one and so did my parents. We are thankful for the two because Ryan always wants to play with her toys too so now he can push one and Katelyn can push one. It’s quite funny watching her play. She puts the baby in the stroller, buckles it up, gets her purse (or a tote bag) and starts strolling. Sometimes she will even come over and give us a hug, expect a kiss and say bye! If I can ever get her on video doing it, I definitely will. Ryan’s favorite toy(s) are his Lego vehicle sets and his Home Depot workbench. He loves to build so these are perfect.

Katelyn will be 22 months old in 4 days. That much closer to being 2 years old! Wow. Time has gone by so fast. She’s talking a lot now and is still saying new words every day. I try to write down all the words she is saying but have not done it lately (imagine that). I know she is saying at least 50 words and will string together 2 words such as “daddy work” or “what’s dat”. We were not scheduled to go back to see the surgeon until next month but Katelyn started itching at her O. She has the protector belt on all the time, other than for short periods of time like when we’re changing her dressing or for bath time so she can’t actually scratch her O but she was trying. So, we wanted to get it checked out. The surgeon determined it was probably just dry skin (as we all get in the winter) and gave us some aquaphor to put on it. That stuff works great! Up until a couple days ago, her O looked so smooth and had no ulcers developing. There is one part that is breaking down again and starting to bleed but we go through this every few weeks. It will heal up after we put antibiotic ointment on it for a couple days. As far as the size of her O, it is smaller than it has been, although she hasn’t gained much weight. She has probably grown taller though. She is still holding steady at 23 lbs. We are doing what we can with getting her to eat more calories but she’s like any toddler and sometimes just doesn’t want to eat. We’ve started giving her Pediasure for some extra calories so that may help. I feel like genetics is playing a big part in her size because Ryan is the same way, tall & skinny, and I’m tired of stressing over it. She is getting constipated every so often so we are adding Miralax to her milk mostly every day. I stopped for a while and then she ended up needing an enema (poor girl) so I’m trying to be diligent about the Miralax.

As far as her sleeping habits are concerned it is still wonderful. She is mostly still taking 2 naps in the day during the week and she will take one long nap in the afternoon on the weekends, since we are usually out running around on Saturdays and go to church on Sundays. She still goes to bed by 6:30 (although sometimes she plays in her crib for 15-20 minutes) and wakes up between 6-6:30. There was a couple weeks that she was waking up between 5-5:30 am and would not go back to sleep. I knew it was a phase because Ryan did the same thing but boy was that hard..especially on the weekends.

In a nutshell, other than just having a big tummy, Katelyn is a typical toddler. She knows how to throw tantrums, especially when she wants it her way and no other way. She dislikes the word “no” , knows how to open and close doors, climb on the couch and up the stairs, get under her brothers skin by taking his toys and has us all wrapped around her little finger. We may be starting on a new journey soon…the potty. That has yet to be determined though. She was saying potty for a couple weeks and would grab our hand and make us go to the bathroom with her. We didn’t have a potty chair for her so I would just sit her on the big potty (with her clothes on) but she would just get off immediately. So, we took her out and she picked out a potty seat that had a frog on it but nothing has happened on it other than her sitting on it for a couple seconds every now and then. I’m not forcing the issue whatsoever.

We got a little snow last Friday and as soon as I got home from work, Ryan was anxious to go outside. Even though it had only started about 45 minutes before I got home, it was coming down fast and everything was covered. It was pretty and Katelyn had never been out in snow, so I caved. What I hoped would only take 10 minutes or so to get ready, took about 30 minutes. I could only find one of Ryan's snow boots. While I was tearing up his closet by searching, Katelyn was busy pulling out ALL his books from his totes. I finally gave up and told Ryan to put on his Stride Rite boots (similar to hiking boots). Then I got Katelyn double layered up, had no problem finding her boots, but then could only find ONE glove. Really? Why can't I just be organized!! Finally I gave up and put two pair of socks on her hands. I was more than ready to get outside because I was sweating! The kids had fun and I got some pictures.