Katelyn's Surgery

Next Tuesday Katelyn will have her surgery to repair her birth defect. I’m getting anxious as the days grow closer but I am trying to stay positive (and not really “think” about it).

So here are the medical details of how the surgery is planned to go. Dr. Frantz is planning on opening her up vertically. The intestines are still in the Omphalocele sac and he believes they might even be attached to the sac itself so he may need to take extra time to remove the intestines from the sac. He will then stretch the fascia and connect the stomach muscles together. If he cannot pull the fascia together or there is not enough give, he will have to use a biological mesh called AlloDerm. AlloDerm is basically all natural (donor skin) so the body would have a very low risk for infection from it. He will then close her up and will try to make a belly button. There may not be enough of her real skin to close the outside or make a belly button so he might have to use some of the Omphalocele sac temporarily and next year when she has grown more, go back and do “cosmetic” work to use her real skin. Dr. Frantz will use dissolvable sutures so we won’t have to worry with getting staples or stitches removed. Katelyn will likely be in the hospital 4-5 days. Obviously, I’m hoping she’s a rock star and is on the lower end of that estimate. The most worrisome part is when she wakes up and the couple days after when the pain will be the worst. I know how painful a c-section is as an adult, so having abdominal surgery as a 3 year old is probably 1,000 times worse; but then again, children are resilient and she may be up and raring to go in a couple days!

Please keep her in your thoughts and prayers during the days leading up to next Tuesday. We want her 100% healthy!

Catching up!

It's been a busy several months since the last time I posted. Nothing out of the ordinary; just life. We've had Halloween, Thanksgiving, Christmas and Valentine's Day! Sorry for my lack of posting. Our computer is out of commission (it died and we don't want to spend the money to try and figure out why; we've tried a new battery and new rechargable battery cord to no avail). No computer means no typing blog posts or posting pictures unless I can do it while on my lunch break at work. I've been trying to write and post this one for over a week; I'm having major problems adding pictures! So I will try to catch up on all that's been happening.

Halloween was fun. We took the kids to the pumpkin patch and to a Halloween festival at the Zoo prior to Halloween. Halloween night, we ended up taking the kids to a church down the road from us because they had a big festival with bounce houses, games & food. Usually, we take the kids to my parents neighborhood but with Halloween falling on a week night, it was too difficult to get home from work, get the kids ready, feed them dinner and then drive there only to have them go to a few houses. The kids had a fun time and were dressed as Superheros! Ryan was dressed as Spiderman and Katelyn dressed as BatGirl complete with a tutu! With all they have been through, they truly are our Superhero's!

The weekend that followed Halloween ended up being special, although we didn't know it at the time. Dean's mom had been admitted to the hospital a few weeks prior due to falling and being disoriented. We all found out what she already knew; that her cancer had spread. She spent about 10 days in the hospital and then was sent to a nursing facility to start rehab and continue with radiation. Dean was visiting her during the week and we would all go on the weekends to visit. I took pictures of the kids with their Grandma this particular weekend and I'm so glad I did. As it turned out, this would be the last pictures we would have of the kids with Grandma. She passed away two weeks later. Fortunately, she was at home and had Dean's older and younger brothers there with her. It's been a tough few months since then (having to spend the holidays without her) but we know she is watching from Heaven and we will all see her again one day.

Thanksgiving was different for us this year because my parents went to visit my sister and brother in law out of state. Normally we would go to or make dinner for Dean's mom & brother so this year we just decided to have a quiet day (well, as quiet as you can get with two kids!) inside and eat in our comfy clothes (yes, think sweatpants!). We stuffed ourselves silly..even Katelyn ate good.

December was busy just trying to get all the decorations up, shop and get over sicknesses. Mainly Katelyn was sick with congestion and a cough but by Christmas she was thankfully over it. We visited Santa and Katelyn was still not a fan of him. She was SO very excited IN LINE but as soon as it was our turn to go next, she said "Ryan can go first, Ryan can go first" and I told her that they were going together but she grabbed onto me and wouldn't let go. Then came the tears. I did manage to get her loose from me and told her to just stand by Ryan. This is the picture that followed:

The kids were blessed with a good Christmas from "Santa",us and all our family & close friends. Ryan's favorite gift is his Kurio tablet that we allow him to play a couple hours a week, mainly on the weekend since we don't want that to interfere with his school work. Katelyn loves her Doc McStuffins doctor bag, all her DVD's,her new books, her princess computer and her Leappad. We had fun visiting with my sister and brother in law as always and are looking forward to their next visit soon.

The sicknesses arrived again in the household in early January and still haven't really left. My mom was first to get sick with the coughing and congestion and then it just moved on to the rest of the family. Dean, Katelyn, Ryan and myself. My mom and Dean are still coughing and it's been about a month! Katelyn ended up getting an ear infection and pneumonia. Luckily, the pneumonia was in the beginning stages so she was better once she started taking an antibiotic. Unfortunately, once the 10 day dose was done (early last week), she started coughing again. We are back to giving her the puffs of Albuterol hoping that will help.

Other things that have been going on; Ryan lost his FIRST baby tooth!! It was his bottom front tooth. He was saying for a few weeks that it was wiggly but when I had taken him to the dentist in December the dentist had said, it would probably be 4 months or so before it came out. Well, I guess Ryan wiggled it enough and it just came out on it's own at school. The nurse at school put it in this tiny holder that looked like a tooth..it was very cute. Since it caught me by surprise, I was not prepared and had not made anything special for this milestone. With no computer and very limited ink in our printer, my resources for making something was slim. I did manage to find a website that allowed me to print a certificate from my phone and the tooth fairy left that under his pillow along with $5!! Ryan was very excited when he woke up the next morning. Now the tooth next to it is very loose. The tooth fairy better get to the bank to get those silver dollars!

I can't believe in 7 weeks Katelyn will be 3 years old!! Where has the time gone?? She (and Ryan) make us laugh every day. In the evening she usually will whisper to me "I just want a little teeny bath mommy" and make her "teeny" hand gesture when she's saying it. I have no idea where she came up with that but it makes me laugh every time. She LOVES taking a bath but does not love getting her hair washed (hence the meaning of "teeny bath"; short bath with no washing of her hair)! We're making progress (with bribes) but it's baby steps.

Her and Ryan love each other but definite have their moments when they just want to be left alone. But I opened up the door to Katelyn's room one morning two weeks ago and found this on the floor:

It made me so proud and teary eyed.

Oh and how could I forget all the SNOW we've been getting! The first round was the third week of January and the kids were out of school for two days (and my work was closed as well). This is when the kids and I were all sick so we all ended up staying home Wed-Fri that week. Ryan had a make-up school day the following Monday but we were still sick so I stayed home with him and Katelyn. Thank God for my mother though, because she came over to help watch the kids so I could sleep. Then Tuesday afternoon another round of snow began (Ryan was already off from school due to a teacher work day). I was able to leave work early and then we hunkered down for the rest of the week. We ended up getting about 10" of snow!! I enjoyed being able to stay home and recouperate but I hated the fact that Dean still had to go to work and work hard clearing the snow from the properties he works at. We did go out at the end of the week to play in it since we were feeling better and the kids had fun; although Katelyn thought it was too deep. We had a dusting of snow a few days ago but it turned to rain quickly after it started coming down. This week it's supposed to be in the 60's! Go figure.

I'm not making any promises on when my next post will be but I'll try to update after Katelyn's next surgeon appointment at the end of March since we might nail down a surgery date or come close to it.

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!