CDH updates

Super Sofie came out of the muscle flap surgery with flying colors!!! Check out her blog for the details and keep the prayers coming!!

Weekend Update...

Today was beautiful!!! Since I worked on Friday, my parents watched the kids and Chloe asked if she could have a sleepover at Mom-Mom's house and then they would deliver her at my cousin's First Communion party today. Chloe had a blast and played so much.... I heard that Aunt Danielle took her on a hike, then they went swimming in the stream, and then fishing. She also had breakfast over Gino's parent's house and I heard she used her manners!! We were happy to have her back and enjoyed Garrett's First Communion Party today. I think Wyatt enjoyed the party too... pictures are below.

The first two pictures are from last weekend... the kids with Duncan and Abby...

Cousins... Duncan and Abby.... Friends Forever...

Wyatt getting sleepy... all partied out...

Chloe and Mom-Mom

Wyatt and his Pop-Pop... Wyatt loves his Pop-Pop


Me and my sis....


Daddy and Chloe swinging... Chloe will swing forever:)

Chloe getting sleepy....

My cousin, Tim and my sister Danielle



Check out Nanny's Blog for pictures of last weekend... there is a really good one of Wyatt!!

Baking Cookies

Our nurse is running a marathon in Nashville, so I get to spend more time with Chloe and Wyatt!!! This morning we walked to the grocery store in honor of Earth Day and bought ingredients to make cookies!! Then we went to story time to learn about bears. While Wyatt was napping, Chloe and I made oatmeal raisin cookies. Chloe was such a good little helper... her favorite part was putting the sprinkles on! Very rarely do I get the opportunity to be alone with both of my kids together.... I was always very nervous going out in public with Wyatt and a 2 year old... but it wasn't so bad after all and I enjoyed every second with them today:))

Hopkins called today and said that the MRI and Upper GI series is scheduled... however she said that it's normally an outpatient procedure, but in Wyatt's case the nurses reviewed his records and he will be admitted to the hospital for observation and will probably be in the PICU!! It is scheduled in the beginning of May. Only my boy would be admitted to the hospital for a MRI:))))

By the way... if Kellie, Carter's Mom is reading this... what happened to your blog? I went to read it this evening and it's invitation only and the letters for CDH blog was removed. Feel free to e-mail me:))) gbkoger@yahoo.com.

Letters for CDH....

Kellie, Carter's Mom had a great idea. Sadly another baby lost his battle with CDH today- Kaden Alex Kuehl. He fought hard for 17 days on ECMO and was doing great when he got off ECMO until recently. His family is in our prayers. Kellie said exactly how I was feeling from her Angry post. and came up with a wonderful idea to take action!! She formed a blog about her idea so go visit the "idea" blog and show her your support whether you are a CDH parent, a friend of a CDH baby, or just a complete stranger. If you know Oprah... Kellie would also like you to tell her about this idea. We need to increase the survival rate and share CDH with the world... It's not fair that babies that fight so hard like Addison, Maxton, and Kaden lost their battle with CDH. Please visit their blogs to show your support and help Kellie's idea become a reality.

Special People

Traveling to a hospital everyday for 5 months and staying all day long, you tend to think of the hospital as your community... many times I had breakfast, lunch, dinner, attended church in the chapel, and socialized with the nurses and other people who worked there. The cleaning lady even formed a bond with Wyatt and somewhere on this blog I have a picture of her. But most importantly, you become close to families in your same position. These families hold a very special bond with you because they see you in all conditions and situations, and they see your child at their most fragile state. We were so lucky to have met two families at Hopkins and have formed a friendship that I hope will last forever. They hold a special place in our heart because they have watched Wyatt grow and develop from being completely depended on life support to who he is today and they have also "been there and done that" too.

This was not planned at all... but a HUGE coincidence that the two families that we have become closest too had doctor appointments for the SAME doctor today- our GI doctor.. Dr. G. The moon must be full... the planets must be aligned for us to first have the same GI doctor and to have appointments at 2:30, 3:00, and 3:30!! The last time we saw the GI doc was 6 month's ago, so for this to happen... I think I am going to play the lottery!!! We are not talking about a little town... this is at Hopkins which is HUGE!!

Drew was Wyatt's neighbor in the NICU on the 2nd floor together and then spent some time together on the 6th floor in the same big room. Drew looks awesome and is doing fabulous!!! He is walking around everywhere!!!




Jack, Wyatt's CDH buddy and his mom Vicki have been our mentors and taught us so much about CDH. Jack looks fantastic and is about Chloe's size now. Jack is also going to be a big brother... Vicki is pregnant with a girl!!!



Thank you to Jack and Drew's family for their support and friendship and for helping to make this entire hospital experience a positive one...

by the way... the appt. was fine... Wyatt needs to keep getting g-tube feeds for 20 hours a day:(( but needs to be increased to 65 mls/hr (5 more) so that he can gain more weight before a potential surgery in June... he also needs an upper GI done very soon. Good news...Wyatt is 10 percent for weight and height. He currently weighs 23lbs 7oz and he was in a great mood the entire day!! We went to the appt. together as a family and even though it was a doctor's appointment, I really enjoyed it. We got to see Drew and Jack and Chloe and Wyatt were so happy all day. We stopped for dinner (which we never do) and it felt like we were a real normal family:)) In the car ride home... Chloe would say Eenie meenie minie ____ and Wyatt would finish the sentence with "mo".. it was so cute that they were truly interacting like brother and sister and they were both laughing so much together. It was a good day!!!

Our Weekend

I earned the "wife of the year" award because I persuaded my husband to go fishing with two other neighbors for the weekend while I stayed home to hold the fort down... well my hubby says I sometimes tend to exaggerate things ... it wasn't so bad... on Friday Lori (aka NANNY) was visiting from Oregon. We missed her so much, especially Chloe who gave her a giant hug when she came over to visit. It was great to see her! Chloe's best friends Molly and Lily came over for lunch to play with Nanny too!!! We had a blast... in fact Chloe played so much, skipped her nap, and went to bed early. Thank you Nanny and Amy for a great visit! Check out Nanny's blog here. On Saturday, my mom came over to help... it was a beautiful day so while she played outside with the kids, I had the opportunity to clean:((( I would of much rather of been outside playing, but I have to take advantage of the opportunity when I have it or things just would not get done. Then Saturday night Benji came home. Sunday we went to the Peep Show at our local arts center. It's three rooms of marshmallow peeps that people make sculptures from. Wyatt saw a red peep and yelled out, "ELMO!" He also liked the giant dinosaur made out of peeps and Chloe liked the dress made out of peeps. It was a nice weekend!

Pictures of our lunch date...

Just being a toddler....

The other day I could not find Wyatt... until I spotted him over at the dog food bowl trying eat a tasty snack! He knew he was not suppose to be doing this. If you look closely at the last picture, I think he was trying to tell me something in sign language:)

CDH News

Sofie is about to have surgery for a third reherniation. This time it will be a muscle flap surgery... the same thing that Wyatt's surgeon would like to do. Also, keep praying for Baby Kaden, he recently got off ECMO.

Surgery Update

Today we had our follow up appointment to last month's x-ray which showed possible reherniation. We arrived at Hopkins in the morning for a chest x-ray and then met with Dr. A, Wyatt's surgeon in the afternoon. The x-ray was extremely fuzzy. Fuzzier than last month. Since the radiologist did not have time yet to read and write a report, Dr. A was going by his observations. The x-ray baffled him. He really isn't sure if he reherniated or not. Because of his increased oxygen requirement, Dr. A said it's about time we get answers. So he called pediatric radiology and asked if a CT or MRI would be better to show if he did reherniate. They advised a MRI. Wyatt has never had an MRI, only CT scans. So Wyatt will get a MRI in the near future (it's getting scheduled) and will need to be sedated for it. Dr. A scheduled Wyatt in for surgery on June 18th just in case. Today at our appointment we had VIP status and got to jump ahead of the others waiting (not that I want to or even asked to), but Dr. A said Wyatt earned his right to be seen ASAP. Wyatt has been in the BEST mood lately... he really shows no sign of distress and you would never know he needs increased oxygen. He is saying all kinds of words, loves to entertain us, and enjoys moving around the house. If he did reherniate, this will be a BIG surgery. Dr. A plans on removing part of his latissimus dorsi (back muscle) and to build a diaphragm with the muscle. Studies show this is very effective in recurrent CDH cases. Most likely a plastic surgeon and/or another pediatric surgeon will be in the OR. I really want to avoid surgery because it's such a stress on Wyatt's body, but on the other hand I don't always want to wonder if he has reherniated and it's preventing his lungs from growing to their full potential. I am ready to face the answers from the MRI. We have an appointment every week in April- GI is next week, Hemotology is the following week and the MRI will be sometime between probably. We are also looking at pre-schools for Chloe and our first appointment for that is tomorrow, and two the following week. Oh... and we have to work too... I just love life... but life would be boring if we did not have these things to keep us on our toes... and our Monday day nurse quit....

CDH News...

Pray for Baby Kaden today for coming off ECMO. Yesterday's trail off did not go so well... but everyday is different.

An Easter Day Hike

No... this is not what you think... it's not a smooth park trail... my sister decided to bush-wack a trail in the woods behind my parent's house and we were privileged to be one of the few to walk on it so there were still many sticker bushes, deer carcases, cliffs, water to walk through, etc... you name it! But we made it to the destination and Chloe walked the entire way by herself. It brought back many wonderful memories because these are the woods that I played in as a young child. All summer, the neighbors and I would make forts, go on hikes, walk to the stream, etc... we just didn't go this far back. We made it back to my parent's house in one piece and Wyatt enjoyed extra special time with Mom-mom and Pop-Pop while we were gone. Our dog Abby, who is typically afraid of water and my parent's dog Duncan loved it!!

Easter at Mom-Mom and Pop-Pop's House!

After church we ventured over to my parent's house and my mother made a feast... much better than usual I think! We had lamb, roast beef, ham, asparagus with hollindase sauce (thanks to Benji for stirring it for 45 minutes), broccoli, bread, sweet potatoes, and the list goes on... we also had another egg hunt and Easter Baskets. The kids loved their lollipops of Dora and Thomas the Train and Chloe loved her very first umbrella ever! It was a great day!!

Easter at Mom-Mom and Pop-Pop

Easter Morning

The day started at 7am when Wyatt first woke up and then Chloe shortly after at 7:30am. Chloe knew the Easter Bunny came to our house because their was a trail of eggs leading from her bedroom to the family room. Our Easter Egg hunt immediately started! Wyatt enjoyed throwing the eggs that Chloe found as you can tell from the picture below. Then Chloe enjoyed her Dora book bag for school next year while Wyatt enjoyed his bubbles. They each loved the green Mickey Mouse bouncy hopper ball!! I love that they are so close in age, that they can share toys. Then the Easter Bunny surprised them with an Elmo and Cookie Monster cupcake for breakfast!! Can you believe that? A cupcake for breakfast?? only on Easter! Chloe tasted a hard boiled egg, but she said that "it was not tasty." They each picked the cupcake they wanted, Wyatt said in a hoarse raspy voice, "ELMO" and Chloe picked Cookie Monster. Phew! I am glad that worked out because the Easter Bunny only brought one of each! Then we went off to church to celebrate the true meaning of Easter. Wyatt had a poopy diaper and I forgot to bring extras, but he feel asleep and woke up with Mass was over. Chloe was an angel:) Then off to my parent's house for an Easter feast and playtime with Aunt Danielle.

Dying Easter Eggs

This was the first year Chloe dyed Easter Eggs. She finally seemed old enough!! I really did not have to show her much. She took charge and wanted to do every thing her self! Her supervisor Wyatt was not too far away... he "supervised" from his high chair. Maybe next year he will be old enough to actively participate!

An afternoon at the mall...

Here are some pics of Chloe and Wyatt visiting the Easter Bunny (again:) and riding the horses at our local mall. Wyatt stayed in the stroller because he would cry if the Easter Bunny held him (stranger danger)and just think about all the germs!!! Chloe was not shy at all and had a blast.