He's had a wonderful summer so far at day camp. He gets to go on at least two field trips a week and they have water play each week as well. We will be taking him to dinner tomorrow night and then doing some fun things this weekend. He's very excited about turning 7!
Posting here for those who do not read the Caringbridge site.
Well where do I begin? I guess I will begin with Katelyn is doing fantastic after her surgery! It’s been 3 weeks since surgery (June 3rd) and as of Thursday, June 12th, she is up and moving around and playing as normal. Father's day weekend she did quite a bit of walking Saturday and running in my parent’s backyard Sunday. She was very sore in the evening, as expected, since she doesn’t want to stop and rest during the day. I went back to work last week so she has been getting lots of snuggle & rest time with her Nana.
As for the surgery..I am glad it’s over. Tuesday was a long day as we thought it would be. We had to be at the hospital by 7:45 am to get checked in and complete whatever paperwork was necessary. This meant Katelyn could not eat after midnight or drink even clear liquids after 5:45 am. She didn’t wake up until 6:30 so she couldn’t have anything to eat or drink. Once we got to the hospital and did the necessary paperwork, it was time for her to change into her hospital gown and the waiting began. We did see Dr. Frantz before we left the exam room and he was about to go into surgery for another patient. This meant we had at least an hour wait or so we suspected. They had a big waiting room with lots of toys, games and a TV to watch. Katelyn was only amused with it all for about 30 minutes. Then she started telling us she was hungry and thirsty. This went on for another hour! We managed to entertain her a little at a time with some books, then a game, then our phone. Soon before10:00, different doctors started coming in the waiting room and introducing themselves; the anesthesiologist, the (male) nurse who would be in the OR, a resident doctor along with a doctor/surgeon who worked with Dr. Frantz and then Dr. Frantz came to explain again what he would be doing. It is quite funny that everyone but one person, who we did not meet, was a male. Katelyn is very hesitant of strangers but especially males! We were told that the nurse would take Katelyn to the OR and within 10-15 seconds she would have a mask put over her nose & mouth for her to breathe in gas that smelled like cherries (Katelyn had picked the flavor earlier). I had full confidence in Dr. Frantz and his colleagues but my stomach was in knots because I knew Katelyn would have a fit with us leaving her with a male nurse! And boy was I right. We walked into the hallway and I handed her to the nurse and she started crying immediately. We gave her a kiss and she started screaming “mommy no, daddy no” and we parted ways. We just had to keep walking and not look back because I know I lost it and I’m sure Dean almost did. We walked into the surgery waiting room and met my parent’s and was surprised they didn’t hear Katelyn screaming because for about 5 seconds I could still hear her. We then settled in for what we thought would be a 2-3 hour wait. After 3 hours, we had not heard anything so Dean went up to the desk and inquired and was then able to talk to the nurse in the OR. He stated everything was going well and she was about to be closed up. We finally breathed a little sigh of relief when we saw Dr. Frantz come in the waiting room at 1:45 (mind you we gave her to the nurse at 10:15).
The surgery actually went better than expected. She originally had all of her liver, intestines and gallbladder in her O when she was born. Most recently, Dr. F had thought the liver had gone back in and it was the intestines still in the sac because when we would compress the O with the ace bandage, she would wrap fairly flat, meaning the contents of the O were slipping back in the abdominal cavity. Well, it turns out that it was the top part of the liver that was in the sac and the intestines were in her abdominal cavity. We thought of it like a mushroom; the intestines were underneath the top part of the mushroom, aka the liver. Also, although there were adhesions on the sac, the liver was not attached to the sac which was great news. Dr. Frantz used Alloderm like he had told us that he might do but it wasn’t because he couldn’t bring the muscles together, he did it for reinforcement. The muscles came together but he felt that using the Alloderm mesh would be extra reinforcement and would help prevent a hernia in the future. An Abdominal hernia (where tissue or an organ protrude through the wall of the abdomen) can be common,especially in babies with an Omphalocele. He used two mesh patches and they sit like the letter T. As she grows, her muscles will just grow into the mesh. On a side note, it does not look like mesh at all; it looks just like real skin (because it is but with the cells taken out but the term "mesh" is deceiving). I have pictures but I will spare you all those! He then closed up her outer skin and her scar is almost like an “S”. Seems appropriate since she is like Supergirl! He was not able to make her a belly button since the end of the incision was too high on her torso. We were not at all disappointed; we were just happy he was able to close the skin all the way and not have to worry with another surgery down the road. Just as some kids are joking Ryan for his scar from his intestinal surgery when he was 24 hours old, I know she will have to face those jokes as well. But we have and will continue to teach both of them that they are special children from God and God placed his hands on them and healed them through Dr. Kelly (Ryan’s surgeon) and Dr. Frantz.
We were able to see her right after Dr. Frantz talked with us and she was obviously scared and still sort of out of it because she cried when we walked in the recovery area. We had to wait almost an hour to get a room and she dozed off for almost the entire time.
So that’s the surgery day in a nutshell. If you are still reading, more power to you because I know it’s probably a boring read. I just wanted to get the details down so when I finally print this blog, she (and us) will know exactly what went on.
I will update the rest of her hospital stay and recovery at home in another post.In the meantime, here is what her incision looks like now.
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!
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.
