Prayer request

Last year I found an online support group for Mother's of Omphalocele babies. MOO's as the facebook group is known as, brings together not only mothers of Omphalocele children but fathers, grandparents, siblings and even adult survivors of Omphaloceles. I have come to rely on knowing that someone in that group will have answers or advice for my questions and I give my experience from Katelyn's "O" as well. We get to "know" each other pretty well and may even consider them like an extension of our family even though we have never met many of them in person. We share each other's joyous occasions like when our miracles start to walk but also share heartbreak such as losing a miracle child. In the past year I have come to know a mommy of twins. One of her twins, Elizabeth, was born with an Omphalocele like Katelyn. The twins were born on my birthday two years ago; just four months after Katelyn was born. Through her posts and pictures I got to know about her daughter and enjoyed seeing her sweet smiling face. She went through closer surgery several months ago and had a long hard recovery. Last week she was finally able to go home, play at the park with her sisters and they were trying to return to normalcy. Unfortunately, she developed a virus that she was unable to recover from and passed away suddenly Tuesday morning. I am beyond devastated for this family. I have cried and cried over this news and prayed for them countless times over the past several days. When Katelyn had her surgeon appointment a couple weeks ago, we talked about her closer surgery. The surgeon felt like she would be ready in a month or two but we chose to go ahead and wait until early summer. Dean and I do not want our child in the hospital during the winter months (think sickness) or near the holiday. She has already had croup once (last month) and I suspect it won't be the last time she is sick this winter. We want her as healthy as possible before and after surgery. So, when I heard about Elizabeth's passing, it just hit me like a ton of bricks and made me even more anxious about Katelyn's surgery. I know every person (child) is different and there were other circumstances that played into why she had such a long recovery but it is still scary. Please say many prayers for this family as they grieve and remember their precious little girl. Much love to everyone.

September update

Can you believe it’s September already? We had a pretty busy summer but it’s now back to school, doing homework and running errands on the weekend. We tried to do something fun with the kids every couple weeks during the summer…sometimes that didn’t pan out depending on the weather but I think we all had a good time. After my sis and brother in law went home after their visit, Ryan started camp at the Y and thoroughly enjoyed it. It was a new theme each week so he was able to learn about and have hands on fun with cooking, time traveling, awesome art and many more things. He also got to swim almost every day and most importantly, burn off energy by playing outside! There were a few weeks that he did not go to camp like the week of his birthday but we (or my parents) did other things with the kids. Other Places we went this summer; Went to Busch Gardens, Kings Dominion, Williamsburg, Outer Banks. Katelyn is 35 ½” (just a hair under 36” with her shoes on) so she was able to ride quite a few rides at both theme parks. Ryan just loves all the rides and would stay until the park closed if we were able to! He is tall as well and just under 48” which is the minimum height to ride the Lochness Monster at Busch Gardens…but I would never let him do that right now! I mean, he is only 6! Maybe when he’s 10 or something…haha!

Ryan is now a 1st grader! Where did my little preemie prince go? Time sure does fly by when you have kids. He talks ALL THE TIME now. I look back on some of my old posts when he was 2 and barely talking a few words and think if I had known then I would have nothing to worry about 4 years later, life would have been a lot less stressful. He loves Lego’s, board games & card games and of course still loves playing with hot wheels cars! He also loves to read. He will read road signs, signs when we are shopping and all kinds of books. Imagine our surprise when at his 6 year pediatrician appointment in July, he could only (barely) read the 3rd line of the eye chart! The 3rd line of the eye chart only has 3 big letters! I was dumbfounded. Besides the fact that he would complain of a headache every now and then, there was no indication he had blurry vision. He never sat close to the TV, never squinted that we saw and certainly never told us he couldn’t read something. We passed off his headaches as being dehydrated (since after all he was at camp all day) or allergies. So, off we went to get him glasses. He was pretty excited about the idea of glasses at first but when they came in and he had to wear them all the time, he was less excited (about them). The good news is it’s been about 3 weeks that he has been wearing them and he has adjusted to them well and does not take them off several times a day as he did in the beginning. Dean bought him a strap to wear if he wants and our next item to buy is sunglasses that clip on.

Big news for Katelyn as well! She is now in preschool 3 days a week! I was very surprised at how well she did on her first day. The teacher stands at the door and has the kids walk in one by one by themselves as the parent is telling them goodbye. I think the fact that she knew I wasn’t going to be there but that her Nana (my mom) would be back to pick her up helped a lot. At church, when we drop her off in the nursery she cries but I think it’s because she knows we are there (in the sanctuary) and just wants to be with us (wants us to come in the nursery and play with her). After about 30 seconds though she is fine. Her Omphalocele is getting smaller the bigger she grows. She is 25 lbs. now and right at 36” with her shoes on. The surgeon mentioned the S word (surgery) last month so sometime in the near future we will be looking at closure surgery. We would definitely like to wait longer and have most all of the contents of her O compressed back inside her. We also want to get over the winter cold & flu season before having to stay in the hospital. With that said, we’ll talk more to the surgeon next week at her monthly appointment about the procedure, recovery time, etc.

If you haven't read my last post about making the blog private, please read it. I'll be making the blog private this week so please email me your email if you want to continue reading my updates..even though they are few and far between. Making the blog private might motivate me to post more pictures.

Here are some recent pictures:

First day of 2 year old preschool

First day of 1st grade

Pirate birthday party

Katelyn loves to read her books in her crib!

Making blog private

I've decided to make the blog private. I don't like the idea of having a lot of our information and pictures out for the world to see. I've been going back and forth on this even though I only seem to post every few months. I would like to post freely without having the thought in the back of my mind that someone might steal photos of my kids. Yes, it can happen on facebook or shutterfly or any other site but having one less "public" place would ease my mind some. If you'd like to continue following my somewhat irregular posts (I have good intentions of posting more often!), then send me an email. Or better yet, if you are on Facebook and we are not "friends", send me a friend request. With that said, I should be posting an update this weekend..promise!

Mid-Year update

Okay, so I’m a little behind on posting an update but that’s not a shock to those who know me. I go to write and update and then something else draws my attention away and I never seem to get back to it so for that I’m sorry. So here’s what’s been going on lately.

Katelyn’s birthday party has come and gone and she had a lot of fun. We had an Over the Rainbow theme to celebrate. The inspiration for the theme came to me partially from Barney and partially from Pinterest. Katelyn loves Barney but I was not too keen on having a Barney party and I’m pretty sure the guests were appreciative of that as well (have you heard the Barney songs???). So I took the “rainbow” image that is in every episode and drew on that. It was a very colorful party with all the colors of the rainbow spread throughout the downstairs with balloons, banners, the food and even the cake. I had a shirt custom made for her and was able to order a rainbow colored tutu wholesale from one of my online friends. All of our family and close friends showed lots of love for Katelyn with the special gifts they gave her and we are so very thankful for everyone. Several weeks after her party we were finally able to get Katelyn’s birthday portraits taken and they turned out wonderful. I’m still working on sending those out so if you are on our Christmas card list, you should get your pictures soon (I had to order extra prints of my favorites).

Katelyn had her 2 year well check in late April and she is 24 lbs. & 35 ½ “. She’s a smidge taller than Ryan was at this age. He was 27 lbs & 35”. Developmentally she falls right on the charts for a 2 year old with her fine motor skills, social skills & speech. We are having early intervention still monitor her every three months due to her Omphalocele. I want to make sure she isn’t lacking in areas especially her fine motor and gross motor. She’s done exceptionally well despite her defect and even recently began laying on the floor (both the hardwood in the kitchen and carpeted area in the den) on her stomach and coloring in her coloring books. She’s still a drama queen and probably in about a year she will be running the show between her and Ryan. Even now when he does something to her, such as take away a toy, she lets it be known by running to tell us or screaming until he gives it back to her! We started compression on her O about 7 weeks ago. We have an ace bandage that we wrap her O with and tighten it as much as she will allow. We made a gradually transition into it and after about 4 weeks her O was looking smaller. Then a couple weeks ago on our “staycation”, we were at Dean’s mom’s house and Katelyn started telling us her tummy hurt. She was very tired because we had taken the kids to the pool the day before and it was also nap time for her. She cuddled up against me and went to sleep. When she woke up she continued to complain and started crying. We took her home and I took off the ace bandage and snuggled with her in our bed. She went back to sleep and when she awoke she did not complain of her tummy hurting. Needless to say, it scared us and we kept the ace bandage off for the next few days. Once we did so, her O began getting larger again. So we were back to square one. I eased her back into the tightening and so far she hasn’t complained of her tummy hurting. She definitely will tell us when it’s too tight so we can only make it but so tight. We go next week to see her surgeon so it will be interesting to get his opinion, although I’m fairly certain he’s just going to say keep doing what we are doing.

Now that I mentioned our staycation, I guess I should tell about some highlights. My sister and brother in law came in town so we spent the whole week off from work doing fun things with them and the kids. As I mentioned previously, we went to the pool at the Y and the kids had a great time (well, Katelyn had her moments but overall she was good). We also went to the Children’s Museum, rode a ferry across the river, went to a painting studio and the kids painted pottery, went to the beach, saw one of my best friend’s in North Carolina that I had not seen in years and had never met Katelyn, went to the Grave Digger monster truck shop, went to the Outer Banks and flew kites on the sand dunes (in Kitty Hawk). We also spent time with the whole family for Father's Day and got to visit with my 6 week old niece. The kids love their new cousin and Ryan is looking forward to her growing up and having another playmate. The kids (and us) were exhausted each night and slept so well.

Ryan is now a Kindergartener graduate. I can’t believe he will be 6 years old in about 3 weeks and a 1st grader in September. He LOVED Kindergarten and it’s been such a joy to see him grow. He is like a sponge and just absorbs everything and talks..boy does he talk. Which is wonderful; I couldn’t have imagined 4 years ago that he would be talking so much. He loves to draw and read. He insists on doing everything himself, right down to making his own breakfast (as long as the stove is not involved).

Ryan starts summer camp this week and was very excited this morning. We’ve enrolled him in the weekly camps at the YMCA and each week is a different theme so they will do different activities related to the theme each week. He had a great day of swimming, playing and meeting other kids. He will go this week and then won’t go again until the last week of July. One of my best friend’s will be taking him for a couple weeks and doing fun activities with him and then the week of his birthday my parents will do something fun with the kids and Dean & I are taking off work for a couple days.

I’m sure there is more to write about but I will close for now. Hope everyone is having a great summer!

Katelyn dancing

My girl LOVES to dance and I never tire of seeing her do it. She's starting to try and jump now because she sees Ryan doing it all the time so she really has a "bounce" to her dancing now. We will put on the music channel on the TV and the kids will just go crazy dancing. Here's a video of Katelyn (and you see Ryan at one moment) getting her groove on with Mickey!

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.