Busy Busy Week!

Wyatt had three doctors appointments this past week. First, Kathy our nurse and I took Wyatt and Chloe their peditrican for their flu shot and Wyatt's one year check up. Wyatt was a good sport during his four shots:) Wyatt is in the 50% for height, 30% for head, and less than 5% for weight. Our next appointment was to see his GI doctor at Hopkins. Dr. G was not pleased with Wyatt's weight gain and since he is now over one, he was switched from ElaCare to Neocate formula. His calories were increased from 27 cal/oz to 30 cal/oz and his rate was increased from 44 ml and hour to 50 ml and hour with .... drum roll please four hours off compared to only one hour off!!! Iron was also added since his hemoglobin was a little low. Erthromycin and Prevacid doses did not change. We were there for several hours and Chloe so patient and sweet. Wyatt did not really tolerate the increase of calories, but he is getting use to it. We are currently up to 46ml hour since we are slowly increasing the rate... we don't want too many changes at once!! Wyatt has weighed 17lb 14 oz for the past month or so... I am really hoping to cross the 18lb mark!!! (I just weighed him and he is now 18lb 2oz!! There is a big play structure in our peditricians office and I heard, "Mommy, look at me!!" and Chloe climbed to the highest spot!! She is getting to be such a big girl!! Another change with Wyatt is a new feed pump!! He is using the Infinity pump. Wyatt's NICU friend Drew is seen here modeling the cool new backpack and his mom does a great job showing the differences between the pumps. We just received ours yesterday and love it!!!

CDH babies to pray for- Eventhough I have not blogged in a while, I still keep up with all Wyatt's CDH friends. Baby Carter just got off ECMO!!! Yeah and we are praying for a smooth ride!! Baby Nayeli just got her surgery repair and is doing GREAT!!! Two year old Ava is on the road to recovery! Our entire family has been praying so hard for her.

Another late night....

I have not blogged for a while, because my sister has been keeping me very busy!! This past weekend, we had her shower at my house and then me and 12 other of her friends had a nice dinner in Washington DC and then went out dancing (I would of rather slept!). I was so tired since I stayed up late the night before getting ready for her shower and the last weekend preparing for Wyatt's Birthday Party, but I was a good sport! Above are so pictures of Danielle having a good time! We are soon off to a secret location for her actual wedding!!!

Mommy Look! There is Jesus!!, Chloe says.

This is just a cute story about Chloe. Every week Chloe goes to Tumble Kicks. When we got out of the car last week, Chloe said, "Look Mommy, there is Jesus." So I looked around and did not see anything. I said, "Chloe, where do you see Jesus (thinking, oh my gosh... maybe she really does see him:) She pointed to the parking lot space and said, "Look, a cross." So I took a picture just to remind us that children allow you to see what you would normally overlook and that Jesus is everywhere. She is so precious.

Birthday Pics....

Here is a video montage (it's long) and some more pictures in case you can not watch video from your computer or you don't want to sit throug the long video. We had a great time, especially seeing everyone. Chloe enjoyed playing with her friends Lily, Molly, Savannah, Sofia, Haley, etc...... Wyatt enjoyed people watching!!

Make an on-line slide show at www.OneTrueMedia.com

Celebration Time!

What a long day of partying!! Benji and Wyatt both pooped out after all the guests leave!




Today was a GREAT day! We celebrated Wyatt's First Birthday with a party. All of our closest friends and family attended for this joyous occasion. Wyatt was in a good mood throughout the entire party and did not take a nap at all. He was so sociable, smiled, and enjoyed his party very much. We had a great time catching up with friends and so many people took time out of their busy schedule to spend the afternoon with us, such as my friend Stacy from Virginia, my friends Laura and Susan that live over an hour away, my friends Pam and Paula who sat with Wyatt in the hospital all day long while I had to be at work, cousins, aunts, uncles, neighbors, high school friends Teaette and Nicole, college friends Whitney, Stacy, and Laura, my mom and dad, Aunt Danielle, my grandmother, so many more people that have supported us throughout this entire year. What a year it has been and it was so joyous just to thank everyone for their selfless acts of kindness. Singing Happy Birthday was more more emotional than I ever imagined. Benji and I both started crying during the song as he held Wyatt and I held Chloe and as I looked around, I don't think their was a dry eye in the house. Thank you very much everyone, even if you could not make the party, or others that live too far way to come... thank you with all my heart.

It was an adventure getting ready for this party... Benji was in Las Vegas for work all week, I worked and attended a conference in Ocean City on Thurs. and Fri... but we did it!! Next week... I am a hosting my sister's Wedding Shower, attending her Bachlorette Party, and then off to the wedding destination to be the Matron of Honor in her Wedding... busy, busy, busy... but I love it!

Floor Time and Bath Time!

Today we spent the day at home and Wyatt had a nice long bath with the help of Chloe. Wyatt is now sitting up with out support in his bath tub and enjoys splashing the water. Well... we always create a huge mess during bath time because on Sunday's because I clip his fingernails, clean out his ears really good, put extra thick lotion on him, vaseline his lips, change all the oxygen tubing. Afterwards, Wyatt enjoyed floor time. He loves playing instruments like the little piano and the drums... I think he just likes hitting things with his drum stick in general... such a boy!! Wyatt and Chloe are enjoying their grandparents (Benji's parents) since they are staying with us for this week... pictures to come!!

Fancy, Pancy....

My parents rarely dress up and go out... but Saturday night they went to a fancy gala benefit dinner for a local hospital... so I had to post pictures of my Dad wearing a Tux... since he won't be wearing one to my sister's wedding in Mexico in a few weeks!! They are just going to love me even more since I posted this:)))

Eating Cake

Happy Birthday to you!!

Do I have to eat this cake, Mommy??

Ok, I'll try a little bit

Yuck, this chocolate cream pie is gross... it makes me gag!!

We finally sang Happy Birthday to Wyatt on Friday and he got to "blow out his candle." Wyatt is not a big fan of food...not even chocolate cream pie, so you will see him in the pictures investigating the cake and then pushing it away. He did taste a little bit of it but decided he prefer non-flavored EleCare formula through his g-tube instead... what fun!! That's ok... he will have another chance to taste cake during his BIRTHDAY EXTRAVAGANZA!!

Wyatt Turns One Today

Wyatt's nurse Susan today gave him his first birthday present. Then she played with in the Jumperoo! Finally Wyatt graduated from the Bumbo to the high chair as he joined us for his birthday dinner.




365 days later, 307 blog posts, 33,000 hits, 7 surgeries, 5 months in the hospital plus additional stays, two different hospitals = and a happy little baby... Wyatt James Koger.

Dear Wyatt,

This letter is for you. Today you turned one and I am so very proud of you. As I write this letter, one year ago today, you were born at 4am and it was a beautiful moment. You were silent and the doctors and nurses kept you healthy and were working so silently and efficiently to stabilize you. It was like an orchestra playing silently, everyone had their little job and did it very well. Then I was able to hold you, I looked you in the eyes and whispered to you "fight really hard, I love you so much." then I said a little prayer and let God look over you. I was having signs of preclampsia so I was placed on Magnesium and was not allowed to get out of bed. Your Daddy stayed by your side until I recovered. All of your grandparents were taking pictures of you and showing me. You were still on the oscillating vent and I was so happy about this. I remember thinking... thank goodness he does not need ECMO because then I know the defect is very severe. THEN, the doctor came in my hospital room to explain ECMO and asked me to sign the consent for "just in case." I had such a nervous feeling inside of me because I could not be with you. About 2am, Dr. Berkowitz came into my hospital room and sat on the bed. He informed me that they tried every medication possible to control your blood pressure and it was still uncontrollable so you were placed on ECMO about 1am. When you were placed on ECMO, you went into cardiac arrest. CPR was performed and your heart started to beat again. Dr. Berkowitz told me all of this BEFORE telling me that you were now stable. I think my entire life flashed in front of me when he said this, because I thought it was over. You were on ECMO for 13 days and everyday the doctors did a head ultrasound to check for head bleeds since you were on Heparin. Everyday, your head was fine and this made me so happy. It was like winning the lottery. After experimental trial off of ECMO two times, Dr. Abdullah and Dr. Chandler performed surgery. When surgery began, he came out of the operating room in his scrubs and very seriously told us that "babies on ECMO have a 50/50 chance of survival and that after surgery he will 1. remain on ECMO, 2. leave the cannula's in your neck 3. the most aggressive- take the cannula's out completely and you will never be able to go back on it again, since your carotid artery will be closed up completely for the rest of your life (you need to eat healthy!!). When I saw the ECMO machine roll down the hallway, four hours later my heart sank... what happened?? I sat in the waiting room completely still for four hours praying the rosary and begging to GOD to let you live. The surgeon came out of the operating room and informed us that surgery was fine, but you still have a 50/50 chance of survival for the next 48 hours and then it is a 75 percent chance. I was on pins and needles for the next 2 days. The cannulas were completely removed from your neck, the most aggressive move. The night of surgery was the roughest night you ever had in your life. Your organs could not fit back in your abdomen, so a silo (bag of organs- spleen and liver) were in a plastic bag resting upon your belly. You were bleeding at midnight, your stats were very unstable. Your hemoglobin was down to 8 or maybe less. Dr. Abdullah and Dr. Chandler did not leave your bedside and allowed us to stay with Wyatt when normally he said they would ask the parents to wait in the hallway. Dr. Abdullah picked up the silo and soaked up all your blood like you would spilled milk with a sponge. Dr. Chandler placed a chest tube in your chest. Watching her do this was cool... she was totally in her element. The room was silent and everyone was doing their job... just like when I delivered you. Then Dr. Abdullah took us out in the hallway of the PICU at Hopkins and said that their is an drug used on the soliders in IRAQ to clot blood immediately called Factor 7 and it's very expensive, insurance may not covered it, but it may save your life. Who cares about money!! We said absolutely order it for him. It was like watching ER on TV, watching the doctors figure out the dosage of the drug and to discuss if you should get it or not. It was administered in the middle of the night. The surgeons finally went home in the wee hours of the morning even though they had a full day of patients the next day. All of these things combined saved your life that night and we are so grateful. A week later, Dr. Lau placed your silo in your abdomen and things started to look up... until devastating news... you had a head bleed. First it was minor- an IVH grade 1, no big deal... and the attending on call said it was the "least of her worries." I pressed on for weekly sonograms and the bleed progressed to the worse- IVH grade 4 with a bleed to the right temporal lobe. You were sedated, so who knows the damaged this caused. I was so scared and mad because you could not get a break- ECMO, Cardiac Arrest, Silo, Head Bleed. Your head bleed did not seem to be a concern to people, but I made sure it was the center of attention and because of routine scans, Dr. Carson (one of the best pediatric brain surgeons in the world) noticed you were developing hydrocephalus and needed a shunt. I was scared and mad again, thinking "why isn't my little angel getting a break?" On Halloween, you were moved from the PICU to the NICU. In the NICU after extubation, we noticed you did not have a voice. You were completely silent, making those silent cries. Something was wrong, but what?? The ENT did a scope of your vocal cords and saw that the one vocal cord was paralyzed. Again, I was scared and mad... what will the future be like for you? Will you be silent for the rest of your life? Then one day when we were home one evening, we got a call from Hopkins saying that you had a seizure and you were now on phenobarbital (?). I felt like a huge weight on top of me. Why is this happening to you? You are so tiny and fragile and I read about so many other CDH babies without all of these issues. The medication made you sleep all the time and I did not like it because it was hindering your development. You were drinking from the bottle- 20ml. until the swallow study which showed that you aspirated and all bottle feeds had to be stopped....however, I kept pumping and also trying to breast feed you so that you would still get that human touch. The doctor informed me that you would probably have to get a g-tube. I remember thinking, what the heck is a g-tube?? Boy have I learned a lot in the past year! You were then sent to Mt. Washington, a small rehab hospital that Hopkins owns. Over the next couple of months you reherniated three times, had a g-tube inserted, and a vp shunt. The day you came home, your Daddy and I cried of joy. Wyatt, you defied the odds over the past year... you battled so many obstacles and won. You have changed my life completely and showed me the real meaning. You have brought the good out of people, have brought family together, showed me who my real friends are, and allowed me to love my life. Before you and Chloe were born, I thought what is really my purpose? I was a leader in high school and in college, involved in 4-H, public speaking, rode horses, participated in the county and state fairs, camp director, resident assistant, hall director, and loved my job as a science teacher... but NOW I know my real purpose and I feel complete in doing my job... being a mom to you and spreading the news/educating people about CDH. When I first found out I was pregnant with you and about your defect, the doctors gave me an option to abort. That NEVER crossed my mind and I would not imagine my life without you in it. It was simply not an option to us. Your sister Chloe, so young when you were born, just turned 14 months old has also been a hero in all of this. She is like a bouncy ball and enjoys life... you would never know all the times we could not be with her because she was loved my all her caretakers...grandparents, Lori, and friends/family. She knew all about you and said "Wha Wha" even though she did not meet you until you were 5 months old. Wyatt, you are a little miracle, you are Gods gift. In the words of Dr. Carson- God is Good! Thank you Wyatt for being my son and turning one today!

Love,
Your mommy

We want to thank so many people over the past year and I have so many thank you notes to send out-

Thank you to my parents for giving up their entire life for our son and daughter.
Thank you to Benji's parents for your support.
Thank you to my sister for creating this blog and your love and support.
Thank you to Joe and Maria for organizing the benefit and giving so much of your time.
Thank you to Amy for all those dinners plus so many family and friends that made meals for us.
Thank you to all those that donated funds towards Wyatt's medical needs. All funds go directly to Wyatt and in a special medical need bank account.
Thank you to everyone for your consistent support and prayers.
Thank you to all the CDH families that have babies just like Wyatt and whom I learn so much from... especially Vicki Jensen.
Most importantly... thank you doctors and nurses... espeically Nicole Chandler who not only saved Wyatt's life (BIG responsiblity!) but also became a special friend to our family. Thank you Dr. Abdullah, Dr. Lau, Dr. Columbani for handling my son as if he was yours. Hopkins is truly a wonderful place that not only puts my son first but also value's the parents.

Wyatt feel asleep early tonight so he did not get a chance to eat cake. He still has his cold and his o2 requirement has increased... so we may be asking the doctor for a chest x-ray. I am so afraid of aspiration pneumonia.

Otherwise... Happy First Birthday Wyatt. You are so loved!!!!!!!

Thank you for the birthday wishes fellow bloggers and friends-
Check out Jack's Blog, Owain's Blog, Drew's Blog, and Lori's Blog.

Happy First Birthday Wyatt!!!!!!!!!

My little miracle boy is turning one tomorrow. I can't be any prouder and happier of Wyatt. He has fought so many battles with the best attitude. I am a better, happier, more understanding person because of him. I love life even more because of him and he enables me to see the little things in life that I would normally overlook, to brush off the unimportant things, to appreciate building relationships with friends, neighbors, co-workers. I love my life because of Wyatt and Chloe. They enable me to see the true meaning. There will be pictures of Wyatt eating cake tomorrow (I found my camera charger:)) and more to come!!!

Many prayers for Ava who has been battling CDH for the past 2 years, she is fighting hard now.

Weekend Update

Squenchy Face... (Nanny taught her that!)

One of my favorites of Chloe on her 2nd birthday at her party... photo taken by Gino Amasia. Click here for the enlarged photo

Lugi Amasia Photography Website and check out their new blog!
The two men in my life...

October 2007 Wyatt was a sweet pea... this Halloween he is going to be..... stay tuned:))

This past weekend we took Wyatt and Chloe to Baughers to pick pumpkins. Sometimes the cords to his food and oxygen get tangled up and this time his connector to his g-tube pulled out when we arrived. So we took him off his feeds and let him enjoy the pumpkin farm food free! Wyatt stayed awake the entire time and seemed to enjoy the bumpy hayride. Chloe picked the only white pumpkin in the patch and Wyatt picked a nice round orange one (we picked it for him). Wyatt and Chloe also enjoyed the petting zoo too! We also took Wyatt and Chloe to story time and Wyatt sat on my lap and smiled the entire time. From a health standpoint, I think Wyatt's cold turned into another cold because on Saturday his nose was runny again and he just seems so congested. We have to suction him a few times a day and he is not happy when we do it. It's so sad:((

I can't believe one year has almost gone by since Wyatt was born. Thursday he will turn one and what a year of growth it has been for all of us. I get teary eye just thinking about that I am the luckiest mom in the world to have such a miraculous little boy who is the toughest fighter I know. He is so kind, patient, and nice little baby. AND I am blessed to have Chloe who through all of this is such a bouncy ball... all the times we had to be away from her to be at the hospital and she is the most wonderful well-rounded two year old. She loves her brother so much. Tonight she was rubbing his head gently, held his hand, and gave him a good night kiss... all on her own with out me asking.

We are getting ready for a busy couple weeks ahead. Chloe and I will be going on our first vacation to Mexico and leaving behind Benji and Wyatt. My sister is getting married over Halloween. I have a wedding shower to throw and Wyatt's first birthday to celebrate... busy busy!!!

In other news... Jack, Wyatt's best bud took his first steps today... another miracle baby. Baby Carter, a CDH baby was born today and is doing very well. Finally, many prayers for Ava who reherniated at 2 years old. Her intestines were growing into the gortex patch. Just days before a video was posted on her blog of her dancing and having fun.... CDH is just so unpredictable. Baby Sofie may have reherniated but she is doing fine... however her surgeon is not!

Time with Friends!

Recently, Amy and I reunited with Nanny for Amy's husband's birthday.

Nanny and the girls:

Girlfriends:

Me and my boy:

Hey! Don't forget about me!

Best Friends

Lily and Chloe when they were REALLY Young!

Nanny and Chloe... we miss you Nanny!

Have to include a picture of Wyatt:))


Since I am still trying to locate my camera battery, I am posting older pictures. Here are some pictures I came across of BFF's- Lily and Chloe. They are growing up together and one day will have sleepovers, sporting events together, and double dating... but until then, we will enjoy those sweet little innocent moments together:)) Nanny is coming into town today too!!! So we wanted to include her and Wyatt of course in the pics!

Wyatt is becoming so attached to us- he cries when I walk away from him and when the therapists from the Infants and Toddlers Program come to work with him, he does not enjoy it at all. It's because they only come every other week for OT and PT. I am working on trying to get them to come more often. Our review meeting is next week. Last night, I was reading books to Wyatt and Chloe and they were both on my lap. Wyatt started kicking Chloe and Chloe yelled out "Stop Wyatt!!" in a whiney voice. I just love having normal problems!! Who would ever welcome brother- sister bickering but me:)))