My little sunshine

I keep joking that Wyatt is very mischievous... but he really is the sweetest little boy. He was so excited about feeling better that he only took 1/2 hour nap today. I call him "no nap Wyatt." Here is a picture of him sleeping soundly... now if I can only get sleep.

My Little BOY!

Every time I take Wyatt out of his crib and we pass by his IV pole he likes to grab his fluid bag and laugh!! Since the fluid is not connected to him anymore and he is just getting his formula now, I let him do this fun activity. It lets time pass by. He finally fell asleep around 9pm and now I am preparing myself to sleep in the nice comfortable chair by the door in a tight little space that the hospital provides. Every four hours he gets his cares from his nurse and every OTHER four hours he gets breathing treatments from the respiratory therapist. So that means him and I will get woken up every two hours.... but I don't think we will get any sleep anyway because Wyatt's neighbor's mother has not stopped talking on the phone since I arrived at 12:30pm and it's now almost 11pm:))) Yipee it's going to be a fun night!!

Update on Wyatt

Pulling my wires, throwing things, and playing.... back to my old self!!





Wyatt is back on the 6th floor at Hopkins. It's pretty sad when Benji told me the room number Wyatt was in, I knew exactly where it was... I think we have been here too many times:) Wyatt is back to his old self again of pulling wires, throwing things over his bed and wanting to play. His stats are back to normal again- heart rate is around 145, oxygen is about 98 on 1/4 liter and his feeds are started back at 40 mls/hr. He is on a precautionary antibiotic until his blood cultures come back. His white blood cell count is 31,000 which is very high. Wyatt has a normal high white blood count of around 20,000. If Wyatt stays on track it looks like we may go home tomorrow. The ER said that it was good that we brought him in since we caught his virus early and he was very dehydrated which was the cause of the high heart rate so I am glad we acted on our instints. All his docs checked in on him... Dr. G his GI, Dr. A, his surgeon, and Dr. C his pulmonary dr who is also his main doctor on the floor. I am so happy because he knows Wyatt very well. So keep those prayers coming that Wyatt gets to go home tomorrow and is well.

Does This Make You Smile?

Gina,

It's Danielle. All good news so far, it seems like he is in the best care. Do you know what you and this blog need at the moment? You guys need some smiles. I think this is one of the cutest shots from Wyatt's photo shoot with Gino the other week:




Since our return to The States after living in Japan, Gino has really focused on his professional photography. Look at what he captured at Thanksgiving, this will surely make you smile.




What a face! Gina, you are a lucky mama!

ER Update #2

I just heard from Benji that they are keeping Wyatt overnight for observation to just make sure he is ok. Benji is going to stay overnight with him and I will be going tomorrow morning. My parent's are going to come pick up Chloe. Wyatt sleeps most of the night... so hopefully he won't even know he is in the hospital!! I feel so good that they are keeping him overnight because I would be so nervous at home knowing that he could destat or have a high heart rate... especially since we have no nursing this week. Plus he will be on IV fluids in the hospital. Benji is super tired since he stayed up with him last night and now tonight (I did the two nights before that:) He is a good Daddy:) Please keep saying prayers that this virus will pass quickly. Thank you.

ER Update

Wyatt and Benji are still in the ER, but good news.... the chest x-ray looks good so he has not reherniated!!! The docs think that he has a respiratory virus and is dehydrated. He is currently on IV fluids and is sleeping. His heart rate is 135 which is much better compared to 190. They may keep him overnight for observation. He is no longer under surgery since his x-ray looks good, so he will be under pediatrics. We are just waiting to find out blood work results and what they want to do. I want to thank Wyatt's care team. When Benji was driving Wyatt to the ER, I e-mailed his doctors and nursing agency. His surgeon, Dr. A called me at home two minutes after I sent the e-mail and said that he was on-call this weekend and will check on Wyatt. When I called his pediatrician Dr. G, he answered his cell phone immediately... I did not have to leave a message. He also called the ER to let them know we were coming. Our nursing agency called me within 20 min of my e-mail to offer any help... even offering to babysit Chloe. We are so thankful to have such a wonderful care team for Wyatt who answered our calls/e-mail and go the extra mile on a Thanksgiving Weekend Saturday night. Thank You!!! My little guy always keeps us on our toes:))

What happens on a Saturday Night on a Holiday Weekend in the Koger's House???

Just when I was saying that I am happy not to be in the hospital on a holiday, Wyatt is headed to the ER. What happens on a holiday and on a weekend in the Koger household...just check out our Labor Day post. Wyatt had an awesome Thanksgiving.... but today around 1:30pm he started de-stating to the upper 80's/low 90's and his heart rate jumped from 140 to 190 and stayed that way. He does not have a temp and he is just not himself. My fear is reherniation. So Benji just took Wyatt to the ER while I am here with Chloe. Please pray that it is nothing and we are just over-reacting... but we would rather be safe:)))

Flying on Daddy's Shoulders

Had to stick this one of Chloe in too!

Fun Pics of Today

Today Wyatt enjoyed a ride on Daddy's shoulders for the first time. He laughed the entire time! Chloe enjoyed getting wrapped up after her bath in her new four-eyed monster towel and pretending that she was a monster. Wyatt and Chloe enjoyed spending time with Aunt Tori and Uncle Dani too.

Happy Thanksgiving!

As I think back to last year and how far we have come, I realize that our family has so much to be thankful for. Having children really make you realize it, especially a child that has been in the hospital for almost half his life. Obviously I am thankful for my children and for Wyatt's health. But as we continued with the tradition of going around the table during dinner to say what we are thankful for, my eyes filled with happy tears and this is what I said.... I said that one year ago, my daughter Chloe did not know her little brother Wyatt, even though he was about 6 weeks old. One year ago, holidays were just average days of going to the hospital. We spent Halloween, Thanksgiving, Christmas, Easter, and this past Labor Day in the hospital. What am I thankful for?... I am thankful for watching my children play together, interact together, and most importantly to see the love between them grow and grow. I am thankful to watch Wyatt become such a neat little boy who fought the hardest fight ever for his life. I am thankful for my little girl who is growing to become the sweetest, nicest little girl ever. I am thankful for our wonderful family who show their love and support for us everyday. I am thankful for our friends that support us so much and for the friends that I made within this past year because of Wyatt. I am thankful for our excellent medical care for Wyatt and for his doctors and nurses. Last Thanksgiving was unknown... we spent most of the time in the hospital (Wyatt was in the NICU at the time)and the rest of the time with Chloe. Our house became a hotel where Benji and I were like two passing ships. It was a place where we slept and showered and that was it. Chloe was either with one of us, Lori our ex-nanny:((, or my parents. Tonight was different, our house became a home filled with love, laughter, and a yummy dinner.

This year we got to stay home all day long and celebrate the holiday!!! So exciting not to go anywhere. Our first holiday in over a year of just staying home. It was a wonderful and day full of family fun! Benji's sister Tori and her husband Dani are visiting from Kentucky. My parent's and grandmother also came for dinner, and my sister Danielle, and her husband Gino came for dessert. In the morning we watched the Macy's Day Parade and Chloe was very excited to see Santa on TV. Benji cooked all the food all day and it was delicious! After dinner we just had family time in the family room. My father watched football and took little cat naps, Danielle designed my Christmas cards on the computer, Gino took lots of pictures with his nifty camera, my mom helped clean up, my grandmother rested, Tori read a book, Dani watched football, Duncan and Abby (the dogs) begged for leftover turkey.... all in the same room and I just observed everything and soaked it in. Chloe had a great time playing with everyone, running around, and acting goofy. Wyatt loved all the attention, and then fell asleep in my mom's arms during all the chaos. It was a magically evening full of family, love, and fun... I couldn't be happier:))) except... we don't have a night nurse for four days so I stayed up last night and I am doing it again tonight!!! But I am his Mom and I don't mind one bit! The pictures are from the entire day and last night. Last night when Tori and Dani arrived we had a sushi dinner and Chloe enjoyed putting tiny pumpkins on every one's heads, today Chloe enjoyed helping her Daddy cook dinner, and then you will see random pictures of the family in the family room after dinner. If you have time or want to, you may want to scroll throw last November's blog entries to see how far Wyatt has come! Finally I like to say thank you to my Aunt Laima and Uncle Tom for the beautiful flower arrangement. What a pleasant surprise! Happy Thanksgiving everyone!

Photo and video editing at www.OneTrueMedia.com

Wyatt's Photoshoot

Hey Gina, it's Danielle. Gino just showed me a picture from Wyatt's photoshoot. Not bad for being taken in a basement. If you have any friends interested in family christmas card portrait shots, let us know!

CDH Baby News

More prayers for a CDH baby Olivia that was born on Nov. 21st. She also has a healthy twin brother Mason. Olivia was just placed on ECMO and wish their family the best.

Great Saturday!

Chloe spent the night over my parent's house Friday night and had a blast! They made cookies while it snowed and played with homemade PlayDough. The most exciting part of all is that Chloe got to play with Aunt Danielle and Uncle Gino. So on Saturday Wyatt and I went to my parent's house to pick up Chloe. We spent the entire day playing at my parent's house with Aunt Danielle, Mom-Mom, and Pop-Pop, Uncle Gino, and Grandmom. I think Wyatt enjoyed being in another place for a change. He was great! Uncle Gino had a photography session with both kids. We took them outside in "nature" in the 30 degree weather for pictures. It didn't work out too well... I think everyone was cold. So we brought it all inside... leaves, plants, everything to make it look some-what like nature. We even took off Wyatt's oxygen for a little bit and put on a "big boy" outfit on him. It was fun! I also think Benji enjoyed the nice long day to himself since he has been holding down the fort for the past week.

Nature outside our window

I am feeling much better!!! My fever is gone and so are the chills and aches. I just have a nagging cough remaining. I don't think I ever had the official flu before and I never want it again!! This morning I woke up early to be with Wyatt. Wyatt and I discovered a few bright red cardinals outside as well as a buck and a little doe laying in the brush. She is very hard to see... but when the buck was finished eating, him and the doe ran off.

Playing Together

Yesterday, Benji stayed home with us since I still have the stinking flu (I am a terrible patient:) He took both kids to story time and they made mouse ears. Chloe is modeling them, eventhough she does not want her picture taken. They also built a tower together out of Lego blocks.

Dare Me!! I am all boy!!!

Well... I have never been around little boys before but I am learning quickly what a little joy they are. For example, Wyatt likes to "pretend" to disconnect his food and as he is doing it, he laughs and makes a very irony face. I love him so much!!

Sitting Together

My friend Susan's father does woodworking as a hobby. For Wyatt he made a wooden chair with his name on it. It was very thoughtful. Even more thoughtful, he made another one to be auctioned off at the benefit. So my parents won the bid and gave it to Chloe. Chloe loves to put both chairs side by side for both her and her brother to sit in. A day does not go by without one of them playing with these chairs. Thank you Mr. Famous!!!

Wyatt's Cool Toys

This is my "new uniform" in our house... I dislike it very much... It reminds me of what we had to wear at Mt. Washington.

I thought for sure that I would be feeling better today... but I woke up with 102 temp and with out Tylenol and Motrin, I would not be functioning. I am so mad at this flu!!! I even got the flu shot a few weeks ago and we have Purell in every room in our house. Thank goodness for good people around me. Susan played with Wyatt all day long and Chloe went to Gabby's house so that I could rest.

My friend Laura is one of the most generous people on the face of this Earth. I have her to thank for Chloe and Wyatt's love for books since most of the classics we have are from her. She also let us borrow the toy that Wyatt has in this picture. His Physical Therapist, Patty gave Wyatt this cool little chair and we sit Wyatt in the chair while he plays with Laura's toy. He has a great time!
Please pray for Baby Owain. He reherniated again and is having surgery today. Amber is mom is so sweet and also a big supporter of Wyatt.

Wyatt's Mommy has the flu:((

Well Wyatt's Mommy has the flu! It's the sickest I have been in a long time... 101 temp, chills, achy, headaches... I feel like a wet noodle. Benji has been doing EVERYTHING around the house, cleaning, taking care of the kids, and taking care of me. It's the true meaning of marriage because I know he is so tired of staying up late, waking up early, plus doing everything when we usually split it 50/50. So this is a public thank you to my hubby:)) I love you!!! Please say BIG prayers that Wyatt does not get what I have. I have been wearing a mask and washing my hands but I know the germs are still floating around the house. I went to the doctor today and got some meds so hopefully in the next day or two, I will start feeling better. Enough about me!! Wyatt has been saying "mommy" more often... especially when he wants something. He is also holding his own cookie (teething biscuit) and putting it in his mouth and licking it. This is HUGE that he is choosing to do this by himself. I think he heard that he has his "eating" check up with Dr. LG next Wednesday. I am so proud of my little guy. If you want to read a sweet letter from a Mommy to her son- click here.

We have a football fan!

Benji turned on the TV today and it was the Steeler's game. Wyatt loved it and cheered each time the crowd cheered. Here are a few pics of him watching. His Pop-Pop will be proud! I didn't have the heart to tell him that we are Raven's fans:))

Playtime at our house

Almost nightly now... we have some active playtime since it's rainy and cold and we are staying indoors. Chloe enjoys riding on Daddy's shoulders through out the house and swinging upside down... while Wyatt laughs his hysterically at Chloe and Daddy do this. We told Wyatt that we could not hang him upside down just yet:))) But we did try airplane with him. He enjoys being a spectator rather than a participant.

Music Class

I think I got the touch of the flu this weekend. Benji has been wonderful and stayed up late and woke up early to be with the kids and even cleaned up! We did all go out yesterday as a family to a "Music Together" class which was fun and I even took both kids to church by myself this morning. I usually only take one.. but both were really well behaved. Overall good weekend... I just want to start feeling better:)) Wyatt has finally reached his feeding goal. It took almost a month, but he likes to go slow and he has been tolerating all the changes really well. Last weekend, he reached his goal of 50 ml/hr for 20 hours and this weekend, we switched his formula from Elecare (which he has been on since he started eating) to Neocate for one and older. Dr. G said it's a better formula for babies over one because it has more of the nutrients he needs.... especially since he is getting more active. Wyatt still gets 1.2ml iron a day (we split this .6 and .6 during the day) and 1 ml of his multivitamin in the evening. So far so good! I was so nervous about switching formula, but he seems to be tolerating it ok.

Family Movie Night!

I don't like popcorn!!




I was not feeling well today... flu like symptoms. So tonight we decided to have our first ever movie night. We will watch Sesame Street while we are making dinner and sometimes the Wiggles but that's about all. So we made a big deal of movie night and laid blankets on the floor, lots of pillows, popcorn and all snuggled together until Chloe and Wyatt lost interest:)) We watched some Kunfo Panda movie... It was fun!!

First RSV Shot!

We had a great day today! Chloe went to Tumble Kicks and Story Time and Wyatt went to the doctor to get his RSV shot and Polio. Our pediatrician checked his ECMO wound which was draining liquid and said that it looks good. (It's still not fully healed). Wyatt was so happy in the doctor's office, but when Dr. G walked in, Wyatt looked at me and then started crying. He reached out for me to hold him. Dr. G was so happy that this occurred because he said that is normal. He is such a cool doc!! Wyatt's oxygen when he falls asleep has been great! His monitor reads 100 percent and we turned him down a little below 1/8th!! It's awesome!! But we know he still needs o2 because during the day, if the cannulas are out of his nose, his monitor alarms because it's below 93. Sometime we have to turn him up to 1/2, but his average is 1/4 liter. It's a mystery to me... but I am glad we are making progress. Wyatt only gained 5 ounces this month so we are working hard to beef him up!! He will reach his goal of 50 ml tomorrow (it has taken us a month to get there!!) and in another two days we start his new formula, Neocate. I hoping he will gain more after these changes. So far, he has tolerated the increases, but we are doing it very slowly on Wyatt's terms:)

We received one of our largest bills today from Hopkins. Apparently, our insurance company denied Wyatt's surgery over labor day. We recieved a bill which amounted to a teacher's salary (ummm... and I am a teacher:)) So we will be calling the insurance company tomorrow!!!! Oh.. and we get a 1% discount if we pay it in full by Nov. 29th... how thoughtful...I'll just go out to my little garden where I planted the money trees and pick some:))

Gandhi marries Bridezilla!!

My sister's rehearsal dinner was a halloween party. Gandhi marries Bridezilla!