Happy CDH Awareness Day!

Today was CDH Awareness Day. Jack's mom hosted a blood drive in honor of Jack in Frederick. After work I traveled to Frederick to give blood. As Vicki and I donated blood, we were saying that our little boys endured so much compared to this. They are tough little fighters that gave everything they had to survive. Wow!! we are so proud of them. Baby Sofia and Baby Ned's blog has two great CDH Awareness Day stories. The above photo is a picture of the CDH moms. Jack's mom and Andrew's mom are standing next to me. Andrew was born at Hopkins after Wyatt and Jack at 32 weeks with CDH and survived for just a couple of days. We are always thinking about Baby Andrew and their family.

Busy Weekend!

Nurse Chloe making adjustments to Wyatt's monitor

Making funny faces..

I want to be like Wyatt!!

Painting a picture for Nanny with the help of Wyatt, the dog, and cat!


We had a busy weekend! Benji and I hardly saw each other and we are realizing, two kids is much harder than one kid!! Today, we had a play date with Lily and they painted Nanny a picture while Wyatt observed! Then Chloe wanted to be like Wyatt so she put a chair next to him similar to his bouncy seat to sit in! Overall, a great weekend! Tuesday we have our ENT appointment... only three appointments in April.. not too bad!

WEAR TURQUOISE ON MONDAY in honor of all the CDH babies!

Monday, March 31st is CDH Awareness Day... in honor and support of all the CDH babies wear turquoise. Also on Monday, Jack's parents are hosting a blood drive in honor of Jack in Federick. You can always catch a ride with me, if you live close by.

Today Benji and I divided and conquered. Chloe and I had a mother/daughter day and Wyatt and Benji had a father/ son day. Chloe and I attended two birthday parties. The first party was a Pirate Picnic at my college friend, Laura's house. It was a great party and Laura always thinks of the little details. Then off to the next party for our neighbor, Savannah. It was at GymJam and Chloe had a great time!

Wyatt had a bath today and was happy for most of the day because he got to play with his Dad all day. Tomorrow, Chloe's friends Lily and Molly are coming over for a playdate, so Wyatt will be surrounded by the ladies... which he loves:)))

Cardiologist appointment

Today Wyatt had his cardiologist appointment at Hopkins... they took an EKG and did an Echo cardiogram of his heart while he watched Baby Einstein. Wyatt was so well behaved and looked all around. The appointment took several hours, but when we were finished, Wyatt's cardiologist said we never have to come back!!! One thing Wyatt has is a good heart! The duct that was open is now closed, there is no fluid or pressure around the heart and he even has an extra Vena Cava (vein going into his heart) on the right side which connects to the original. It's not bad or good.... well I guess it's good for his central line, since they had another vein for access. So Wyatt got the clean bill of health and off we went. He also had a bath today and all the oxygen tubing was changed. The doctor who was present while he was placed on ECMO came by to visit and was very impressed with his progress. She was the doctor who came into the labor and delivery room shortly after I gave birth saying they needed to put Wyatt on ECMO and gave me all the consent forms to sign.... an unforgettable moment. Check out Baby Sofia's blog- she just had her repair surgery is it was successful!

A Fundraiser in honor of Wyatt, organized by our friends....

Our dear friends, Maria, Joe, and Jessica organized a fundraiser for Wyatt... Wow!! we feel so blessed to have such a huge support group. We really do have the best friends in the world. Below is an e-mail that Joe sent me and asked me to pass it along and post on the blog.

"Dear Friends,
As many of you know, our good friends Gina and Benji Koger had a little boy named Wyatt on October 9, 2007. He was born with a Congenital Diaphragmatic Hernia (CDH). It’s taken him several surgeries and trips between two hospitals to finally have him home.

In spite of the surgeries and the lengthy hospital stay, Wyatt is a lucky baby. He was born to great parents. I don’t think I could have weathered the challenges Gina and Benji have endured since Wyatt was born.

I met with Benji the day he found out Wyatt would be born with CDH. He explained to me all the plans they had already made for the upcoming months before Wyatt was born. Throughout the pregnancy Gina remained upbeat and positive and researched CDH.

Many of Gina, Benji, Chloe, and Wyatt’s friend have organized a fundraiser called “Friends of Wyatt Benefit Concert/Dance” to be held on Saturday May 10th at the Westminster VFW on Poole Rd. from 8-12 PM. Our intention is to help those who helped Wyatt. Funds raised will go to the Johns Hopkins Children Center, Mt. Washington Pediatric Hospital and Wyatt’s expenses.

Expect a night filled with music featuring local bands Eternal Buzz, Muggsy Thuggo, Time Alone plus DJ Chris Swam. There will also be a money wheel, silent auction, 50/50 raffle, beer and cash bar.

The cost of this fundraiser is $25.00 per person.

If you are interested in attending, please send me an email so I can contact you when the tickets are available. If you know anyone who is interested in coming please forward this letter and have them contact me. E-mail- jncarr@k12.carr.org

Thanks,
Joe"

GI appointment

Today we had an appointment with the GI doctor at Hopkins and we really like him! According to their scale, Wyatt weighs 13lbs 3 oz which puts him in the 3rd percentile for his age group. He is 25 inches long which is the 50th percentile and his head circumference is 41 cm which is the 40th percentile. The doctor is very pleased with Wyatt but said that Wyatt needs to gain weight. His feeds were increased from 31 ml to 35 ml/hr. He also stopped the Carafate and prescribed cream for Wyatt's g-tube site. It's just a little red, which is normal and it's not infected, but this cream help. Wyatt is starting to grab and pull my hair and then laugh!! Is this what boys do??? On Thursday is the appointment with the cardiologist. Chloe also enjoyed playing with her friend Savannah while we were at the appointment. We are also so happy for baby Sofia who came off ECMO today after 12 days. Her repair surgery may be tomorrow, so please keep her in your prayers.

Below are pictures of what we did on Monday.... Wyatt and Chloe colored together and then had a tea party!!! Wyatt better watch out... before you know it, Chloe will be playing dress up with him!

Congrats to Drew's Family!- Welcome Home!

On a very very very happy note, Wyatt's friend Drew is home from the hospital! What a wonderful Easter present! He has been in the hospital since around Thanksgiving and his parents never left his side (expect to sleep). They were such a great support for us and the way they loved and cared for Drew gave us strength everyday. Congrat's to Drew's Family!!!

A great day!

I did it! My first full day with Chloe and Wyatt was a success! It was crazy fun! The morning was a little hectic, but after everyone settled down, we just played all day. At 1:30pm, they both took one hour naps and that was the only break I had all day from 6am until now. It was so fun to be with the both of them and I finally had time to watch Chloe play. Gosh she is getting to be such a big girl. She is using more of her imagination by reading books to her stuffed animals, etc... Tomorrow Wyatt goes for a GI appointment at Hopkins and it's Chloe's first day with our neighbor Jan!!! Thanks to my friend Whitney for surprising us with dinner and to Amy and Jobe for bringing Lily and Molly over to play with Chloe!!

Happy Easter!!

Wyatt joins us for Easter Dinner



Found an egg!!

At the circus looking at the elephant paint at the pre-show

Finally a holiday where we are all home together since Wyatt was born!!! Well... almost... Chloe was not acting her self yesterday. We had an entire "Chloe" day planned with her. I took her for an Easter Egg Hunt in our community, she got to see the Easter Bunny, pet real bunnies, see a 2 day old calf, sit on a tractor, and see a fire engine. Then we took her to out for lunch, and then to the circus!!! At the circus in Baltimore (it was weird driving to Baltimore for something other than going to Hopkins), she was a bump on the log, low grade fever and pointing to her ear. So I called our doctor and he said to go to Promptcare, which was closed. So... this morning on Easter I took her to the ER and it turns out she does not have an ear infection, just a 24 hour bug, and she was fine by the end of the night. I knew something was wrong when she did not want to hunt for eggs, but by the end of the night she was back to her old self! I would love to say that this was the first holiday I spent outside the hospital, but it's not true... spending a few hours in the ER with a screaming child was just how I wanted to spend my Easter morning.

Wyatt on the other hand had a bath this morning and I weighed him too. He weighs 13lbs 7 oz. Wow!! When he came home on March 12th, he weighed 12lbs 4 oz, so he gained over a pound in less than 2 weeks. We are so proud of him. He did have a small spit up of brown stuff, so we put him on pedilyte for 4 hours, and that seemed to do the trick.... he did not have a spit up since then and his g-tube was even cleaned. Wyatt enjoyed his first Easter... he was awake for most of the day, just enjoying the excitement around him (my parents and grandmother came over our house and brought most of the dinner with them!!). We even hooked him up to the portable oxygen tank so he could join us for Easter Dinner. Wyatt seems to be on a schedule ever since we brought him home from the hospital. He will take about 1 hour morning nap and another nap in the afternoon. Then around 7:30pm he will fall asleep for the night. He usually sleeps through the night and will awake around 5am.

Finally, I just wanted to say that I live in the BEST neighborhood anyone could ever imagine. My neighbors have supported our family since I was put on bed rest in September and their selfless giving has continued. We want to thank them for their support, kindness, and generosity.

Final thought- we enjoy Wyatt being home and we think he is thriving so much in a home environment... .however, having two kids is much harder than one. Juggling two kids, a home, a job, and life is super hard, but worth it and I finally feel that my house is a home. The real test will be tomorrow... it's the first time the kids will out number the adults. Chloe and Wyatt will be together tomorrow with their mommy.... since our nanny decided to fly the coop to Oregon! Does anyone want to go out for happy hour:)

Neurosurg check up

Today we saw Dr. Carson and his PA Judy for a post-op neurosurg check up. It was great! They were very pleased how Wyatt is progressing and Wyatt was also showing off how he rolls over half way. They decided to increase the flow of the shunt by moving it from 2.0 to 1.5. This is done by putting a magnet on Wyatt's head (like a compass). Dr. Carson said in years back, you would need surgery to change the setting, but now it's so easy to do with a magnet. Also, our awesome pediatrician got us an appointment with the GI docs on Tuesday. We originally had an appt. in May, but our pediatrician thought it would be better to get in sooner, so he e-mailed them and we are in!! Wyatt enjoyed his visit to Hopkins today... he looked all around and was all smiles! Tomorrow is Chloe day... we are taking her to an Easter Egg hunt and then to the Circus!!!

A tribute to Nanny

I thought I take a little bit of space on the blog to give a tribute to our Nanny, Lori who has devoted her life to Chloe, Lily, and Molly and who has been part of our family since Chloe was 3 months old. We also like to thank Amy and Jobe, who through this process has become life-long friends. Lori has become Chloe's second mommy when I could not be with her and I thank Lori for helping to raise such a well-rounded, full of personality, young lady. How can you thank someone for helping you raise their child in the same way you would? We were so lucky to have Lori, Amy, Jobe, and their girls in our life. We will miss Nanny and we love her very much. Below are pictures of Best Friends Forever from the past year and half. Check out Nanny's blog- http://www.loriventureswest.blogspot.com/ We wish her the best!

Wyatt had his check up with his peditrician yesterday and it went really well. Wyatt got 4 shots and he didn't like it too much. No major changes, we go back on April 8th. We now weighs 13lbs 2 oz!!!

How nice...

Family time with Mommy, Abby, Chloe, and Wyatt

Chloe and her Nanny... it's Nanny's last week :(((( Ignore the blue furniture. I hate the blue furniture and I can't wait to get REAL furniture... but it's not a priority now.. (it was in our basement of our old house)!!!!!!!!!! The lamp adds an extra special touch :))

Chloe and Daddy during story time...

I can't tell you how nice it is to be a family at home. Eventhough Johns Hopkins and Mt. Wash is nice... home is much better. We don't have to run off any where, I don't have to eat dinner in the car on the way to the hospital, and most importantly, we can be all together as a family. The feeling is so good, it's a sense of calmness. While I worked all day, Wyatt spent the day with Daddy and Nanny :))) Tomorrow is our big peditrician appointment. Wyatt had a nice uneventful day and even received a couple kisses by his big sister. When Wyatt was crying, Chloe wanted to help him by bringing him his Flovent!! (Don't worry.. it's usually out of reach, but we just gave it to him and it was beside us). I think this blog is turning into a family blog... but it should since Wyatt is home with his family.

Wear Turquoise on March 31st

It's CDH Awareness Day on March 31st and my friend Vicki made Wyatt this cool bib that says that I am a Johns Hopkins CDH and ECMO Survivor... it's so nice, that I don't want him to spit up on it!! She also made me a T-shirt and sent an iron-on for Chloe. Thank you Jack's mom!!

Practicing our smiles!

I just had to put this one of Sputnik in here.... He thinks he is the boss!

Chloe says.. "Wyatt, Let's play peek a boo!"


Everybody cry now!! all at once!!

Today, Wyatt and I practiced our smiles. He had a bath, changed his nasal cannules, pulse ox, cleaned his g-tube site and the o2 guy delivered six cute little o2 tanks so we can travel around the house and to has three doctor appointments this week. Wyatt is also back to his baseline oxygen at 1/8 liter and his stats are good between 98-100 percent, so that's a good feeling! The last time we were at 1/2 liter was in the NICU when Wyatt was much younger and more fragile. He also gained an ounce. Overall, it was a nice day and Wyatt enjoyed watching Baby Einstein and playing with Chloe's toys while she was with Nanny (shhh... don't tell Chloe).

Wyatt's new onesie says.. "I'm New Here!"

I know it seems like every picture is taken from this blue chair... but don't worry, Wyatt gets to go to other places in the house and when it gets warmer, he'll get to go outside.



We decided to let Wyatt see the morning room during the hour off his feeds. It's really sunny and he can look outside while sitting in his cool new chair that Mt. Wash made him. It allows him to sit upright while also having his head supported. Don't worry... we just didn't leave him there, we sat on the floor next to him. Thank you to our neighbors and our friends Maria, Joe, Grace, and Dan for stopping by!!

It's the weekend and we are home... I don't remember the last time that occurred??

Fun times with Mom-mom

After a while, this gets boring...


Wyatt is doing great. It's a quiet Saturday. We decided to decrease his oxygen from 1/2 liter to 1/4 liter and he is doing great! We also decided to increase his feeds from 30ml/hr to 31ml/hr and is handling it just fine. He has been awake playing and smiling for most of the day and finally is taking a nap!

Baby Sofia was just placed on ECMO last night so please keep her in your prayers- http://www.babymiller08.blogspot.com/

Also... it's our super nanny, Lori's last week to be with Chloe. She has been with Chloe since she was 3 month's old and has played a huge part of what Chloe is today... a lovable, well-rounded, fun-loving, little girl. We will miss Lori tremendously. Lori started a blog of her adventures out West in case you are interested- Check it out here- http://www.loriventureswest.blogspot.com/ We'll miss you Nanny!!

156 days in the hospital

Wyatt was so happy today and is spitting up MUCH LESS... he also gained a little weight too. I also organized the medications by making a day sheet which has the medications listed by time, amount, and name and we check it off as we give it to Wyatt. I also numbered the bottles and syringes so they will not get mixed up. It makes life much easier! My camera's battery needs to be recharged so I will post pictures soon. Check out Jack's blog... you will see cute little Jack with a message to Wyatt. It's so cute and we thank our friends Vicki and James. You can click on the link on Wyatt's Blog side bar or go here- http://babyjackjensen.blogspot.com/

Family Time

How nice it is to sit down and eat dinner with out rushing off any where like a hospital. How nice is it not to drive on a highway for 1 hour during rush hour. How nice it is to have family playtime....

Thank you neighbors... I have the BEST neighbors!!!

From ECMO to HOME.....

Thursday afternoon update- Wyatt has come a long way... here are two pictures when he was only one week old and now at 5 months. Thank You!! We just gave Wyatt a bath. I got to use his suction machine (nothing really came out..it was just fun to use). We also gave him his neubulizer (the machine is not as good as the hospitals'), cleaned around his g-tube, put lotion all over his body, changed his pulse ox. We also cleaned out his mouth, put Vaseline on his lips, vented his tube, and filled up his feed bag. I feel like a nurse... it's fun!! He was so worn out he fell back to sleep... see the pictures below.

Hopkins PICU- October 2007
Wyatt's on ECMO before repair surgery... sedated and paralyzed



After G-tube surgery- Feb. 2008


Home in his crib sleeping soundly- March 13, 2008... our miracle.

Home at last!!!!!!!!

Yesterday I was too happy and excited and busy to post. Wyatt is home where he belongs with his family. I feel like it's the start of summer vacation. There is a sense of calmness in our home, we feel like a family again, and most importantly we are all together. I remember being discharged from the Hopkins shortly after I gave birth to Wyatt. Leaving our little fragile son in the hospital was so scary and sad. We drove away from Baltimore thinking we are leaving our little guy in a big city with out his parents. It was sad and we both cried on the way home. Hopkins, Mt. Washington, and many people praying saved his life. Wyatt had a 50 percent chance of living and he defeated the odds!! This time, Wyatt was discharged from Mt.Washington on Wednesday, March 12th at 3:30pm and we cried on the way home. But not because we were sad, but because it was the happiest feeling in our lives. Wyatt was a fragile 8lb baby that could not survive with out ECMO and now he is a strong 12 1/2 lb baby that can breath on his own with many smiles. What a miracle he is. God is good. We have an army of people to thank. Most importantly, the many people that are praying for him, the wonderful doctors who cared for him, the nurturing nurses that were with him 24 hours a day and cuddled with him when he needed it and the two hospitals that became his home. We made so many friends along the way, who encouraged us to maintain our strength... Jack's family, Drew's family, and our other CDH friends likes Kaden's family.

We were home for about one hour getting Wyatt situated with feeds and oxygen before we picked up Chloe. When Chloe met Wyatt for the first time, she smiled and said "brother." Then she seemed more interested in his bouncy seat than him. Later she held his hand and gave him a kiss. She also shared her toys with him.

Wyatt's night nurse is very sweet too. It was nice getting a full night's rest knowing that Wyatt is being cared for one to one. Linda, his nurse, has a one year old that has a g-tube too. He was premature and in the Hopkins NICU for 8 months and also has a home nurse... so I feel good with Linda being with Wyatt at night.

The only hurdle we need to work out now is mobility. Wyatt seems to be stuck in a small area in our house where the feeds, oxygen, and monitor can reach. We need to organize and figure things out today. We have our nanny, Lori until March 20th, so it will give us time re-organize and allow Wyatt to become more mobile. Luckily, we are camped out in the family room/kitchen which is the hub of the house and all Chloe's toys are right there. By the way... Wyatt is so happy in his home. In my opinion he is spitting up much less and is less fussy. When he is awake, he is smiling and when he is sleeping he seems relaxed. We are venting his g-tube almost every hour which is helping and spreading out his medications so he is not getting them all at once. I think it's helping a lot. We have so many medications... our co-pays will be like a small car payment each month!!! That's ok... because he is home and happy :))) Stay tuned for more pictures... I just realized that I spelled Chloe wrong on my little chalk board!!! I was too excited!! Thank you again. ps- I took video... I just have to figure out how to post it. The pictures above show Chloe and Wyatt meeting for the first time, Wyatt's nurses, Michelle and Addelina and case manager, Jennifer. Even our dog Abby and cat Sputnik are excited for Wyatt. ps- Below are pictures after Wyatt and Chloe fell asleep for the night. The house was quiet and calm, everyone home and we had a sushi dinner with Champange and a baby cake!!! This is what Wyatt is doing now, as I am typing-

We even had time to eat dinner after the kids fell asleep!