Prayers for Avery

Please pray for Avery... a CDH baby who is having a tough time after surgery but has a strong will to live. Our prayers are with you.

What do you think?

Here is an interesting study conducted in Sept. 2007 (Wyatt was born in Oct. 2007) about which delivery method is best for CDH babies. I always heard that vaginal delivery was the best for CDH babies but this study says other wise. The results are not statically significant, but it was an interesting read!

Wyatt's surgery is scheduled for June 25th. It's nestled between my birthday (June 24th) and my wedding anniversary (June 30th- 8 years). Maybe one of these days Benji and I will get to go somewhere... we always said for our 10 year we would return back to where we had our honeymoon in Jamaica. Not this year.... but who wouldn't rather be with Wyatt??

My sister is now in the top 10!!! Thank you for everyone that voted. The deadline is Thurs. at 5pm. Danielle came up with a new plan... e-mail 10 people and ask them to vote and forward to 5 of there friends. If everyone does this... she could be number 1!!! Here is the link- http://hostourcoast.com/submission.cfm?v=52116A26-3048-71C2-17D97D0931D9BBEF

Thank you Team Sofia!!!

We are in the final stretch for voting for my sister and I would like to give a BIG THANK YOU to Team Sofia!! Her mom, Jen posted Danielle's link on her blog. Voting ends at 5pm on Thursday and Danielle is currently number 13!! Let's make her number ONE!!! If you have a blog or would like to send an e-mail out to your address book... please do!! We need about 1,000 more votes and I know we can do it!! Remember to only vote once per IP address (per computer). We are in the home stretch and I know Danielle can accomplish this!! Please help:)) Click here to vote!! - http://www.hostourcoast.com/submission.cfm?v=52116A26-3048-71C2-17D97D0931D9BBEF

Thank you again!!!

We have a plan!!

Today was a long day. It started with a long drive to Hopkins at 7:30am... driving in traffic 20 miles per hour and two hours later we were finally there (1 hour late), then we waited for another 1 1/2. We had a good time waiting... we got to see the clowns and they entertained us for a while. Wyatt enjoyed popping bubbles! Finally we saw Dr. A, Wyatt's surgeon and created a plan!!!! Yipee!! Dr. A said that he talked with the other two surgeons Dr. L and Dr. C for a long time about Wyatt and they all agreed that it is in Wyatt's best interest to have a Nissen Fundoplication. where the stomach is wrapped around the esophagus. This will help with his reflux, GERD, and will also correct his hiatus hernia. Dr. A is also planning on putting a patch near the esophagus as well. We have been postponing doing this procedure hoping that we would not have another surgery... but given that Wyatt has part of his stomach in his chest and is requiring more oxygen, we feel that this is the best solution. Dr. A said Wyatt will get a complete tune up. He will also have two other procedures done as well (circumcision and repairing an undescended testicle). We will find out surgery date tomorrow. It will most likely be June 11th or June 25th. Wyatt was in a great mood, saying hi to every one and talking a lot. Dr. A told his assistant that Wyatt is a miracle baby and that developmental he seems to be just fine.. overcoming a head bleed and vocal cord paralazation. That's my boy!!

By the way... my sister needs 1,000 more votes by this Thursday. I feel like I am harassing every one to vote for her.... but the top 5 people will be granted an interview and my sister wants this job very badly. She has a great chance for it too!! Please forward this information in an e-mail to your address book or post it on your blog. I am not a big fan of forwards, but she has never wanted something so much and she really is a good person and deserves this:) Here is the link to vote- http://www.hostourcoast.com/submission.cfm?v=52116A26-3048-71C2-17D97D0931D9BBEF

Sneek Peek....

Here are a few photos of our Memorial Day Weekend... it's getting late, so there are more to come later! Chloe and I drove to Savannah, Georgia this weekend for my cousin Sabrina's wedding along with my other cousin Christine and her daughter Carolyn who is 9 years old. Wyatt and Benji stayed behind (we still don't feel safe taking Wyatt away from Hopkins). We met my entire extended family in Savannah. It was rainy... but it stopped just in time for the wedding and Paula Dean catered the wedding!! It was a fairy tale wedding and we congratulate Sabrina and Joel. Savannah is a great city!!

Today we attended the Memorial Day parade on Main Street and then had a play date at Lily and Molly's house.. Nanny was in town for the weekend!!

It's not too late to vote for my sister- http://www.hostourcoast.com/submission.cfm?v=52116A26-3048-71C2-17D97D0931D9BBEF. She still needs MANY votes, so please pass along the website to anyone you know!! Thank you very much!

Host our Coast

My adventurous sister applied for Host our Coast and she needs your support. There is limited time, so please spread the word. The number of views of her video on You Tube plays a part of being chosen for this awesome job. Here is the link to her video . Watch it many times and ask your friends to watch it too!!! If you want to learn more about the job, the description is here. Danielle's Blog also has more information on it and there is even a short video of Wyatt scooting on the floor!! Danielle has backpacked through 25 countries, is a published writer, keeps a cultural blog, and loves the outdoors. She is overqualified for this job and I know if chosen she would be a perfect fit!! Please view her video by May 24th and give her support!!

We still have no word about Wyatt's future surgery. We have an appointment with Dr. A on May 26th and we hope to find out what his plan is for Wyatt. His pulmonary doctor recently put him back on his diuretics to help remove the fluid from his chest and he is back on carafate to help with reflux. I think it's working!!!

Today, Chloe had her very first show and tell day and she decided to share pictures of her brother Wyatt. Gabby said that she talked all about Wyatt and showed pictures of him wearing his "pea" costume on Halloween, she even told all her friends that Wyatt was in the hospital, she showed pictures of Wyatt with his nurses, Daddy, and Mommy. It is surprising all the things a two year old can pick up. She understands much more about Wyatt than I imagined.

Stay tuned for pictures of Chloe and Mommy's adventure after the weekend!!

Go view the video now and spread the word!!

Also, Wyatt's buddy Drew is at Hopkins and needs your prayers.

Chloe Flower...

Today, Chloe, Wyatt, My Mom, and myself went flower shopping and Chloe wanted to ride in the cart... we almost covered her with flowers and nicknamed her "Chloe Flower."

Chloe is showing her creative side (she gets it from her Daddy)

Chloe and her friends made a picture of a pig next to a mud puddle. All her friends pigs were nice and clean (all pink), but Chloe insisted on making her pig dirty. Why not... do you ever see a perfectly clean pig???

Playing Together...

Chloe and Wyatt are acting more like brother and sister than ever before. They tell on each other, they push each other, and they enjoy each other. They also love to play together and every evening ends with them kissing each other good night:))

Mother's Day

We had a pleasant Mother's Day. Benji's parents and my parents were visiting and Benji made a nice brunch for everyone. After brunch we just relaxed on the front porch. Benji planted more trees, my sister and I mowed the lawn and the grandparents enjoyed their grandkids while we were hard at work:))

Happy Mother's Day!!

Happy Mother's Day to all the Mom's. I am so proud of Chloe and Wyatt and love them more than anything in the world. They are my pride and joy and I can't think of a better present, than the love they show me every day. Below are some pictures of me pregnant with Chloe, Chloe's birth (Aug. 15th 2006) and Wyatt's birth. Two VERY DIFFERENT experiences. I think one of the toughest things in the beginning was not having Wyatt in my hospital room with me while Chloe spent every minute with me. I remember with Chloe all I wanted to do is sleep and all she wanted to do was to stay awake and breastfeed. On the other hand, with Wyatt... I missed the cries, breastfeeding, holding, and staying up all night. Tomorrow, Benji is making brunch for my parents, sister, grandmother, and his parents. It's going to be a fun day!!!

Pregnant with Chloe... the night before her birth....

Holding Chloe for the first time shortly after I delivered her at St. Joseph's Hospital in Towson.

Chloe, only 11 months old holding Wyatt who is still thriving inside of my belly. I was not in a rush to deliver Wyatt, because I knew while he was still inside of me, he was happy, healthy, and not suffering.

Chloe on her first day of life....


Below are a few pictures of Wyatt's birth.... a little different from Chloe's birth.
Visiting Wyatt in the NICU

Holding Wyatt at 5 weeks old for the VERY FIRST TIME....

Wyatt's home for 5 months... Hopkins NICU, PICU, 6th floor, and Mt. Washington Pediatric Hospital.



Today.... they both love spending time with each other... they are even the same size!!

Today Chloe was helping Daddy and Grandad plant 11 trees in our yard!! Can you spot Chloe??

Happy Nurses Week

We want to thank our two wonderful nurses this week. They really are the best and Wyatt would not be making so much progress if it was not for them. We are very lucky to have Susan and Lovette care for Wyatt. They have become part of our family and we appreciate all their hard work. We would also like to thank the nurses that cared for Wyatt in the hospital.

Wyatt really dislikes standing. As you can see in this photo... he is not exactly thrilled that both of his feet are flat on the floor.

Home Sweet Home

Everyone was so nice to us but we are very thankful to be home!!!!!!!!!! Here is the plan... there is no plan. The surgeons meet every Wednesday. Dr. A. will present Wyatt's case to the GPS group and they will decide. Will they be conservative and elect not to do surgery or repair the hiatus hernia now before it gets worse? I am always a advocate for no surgery, but I am also at the point where I just want everything repaired and move on. So I will leave it in the hands of the very talented surgeons. I am more concerned about the fluid that he has in his chest and abdomen. Tomorrow I will be calling the pulmonologist to see if we should re-start his diuretics and will be calling the neurosurgeon to see what the cyst of fluid is all about. So the good news is that we have more information about Wyatt and he did not have a complete reherination.
Please pray for Wyatt's buddy Drew. He is back in the hospital for low sodium levels and fever. We are also happy to hear that Baby Sofia is home and happy and that the surgery went really well.

Tuesday update from the hospital....

Well... Wyatt and I are just hanging out in the hospital... he is finally napping. We have no plans to go home yet:((( We are in my favorite room across from the nurse's station and we are the only people in it. It's not very busy. Wyatt is done with all his tests. The MRI did change his shunt setting from 1.5 to 2.5, so neurosurgery had to re-program him back to the original settings.

Here is what the MRI report said-

Chest- "Moderate dependent segmental atelectasis right side greater than left. Trace of righ pleural effusion, mild shift of the mediastinum to the left. Left lung is slightly hypo plastic. Small to moderate sized hiatus hernia.

Abdomen- No definite recurrent diaphragmatic hernia. Artifact in left hemithorax from air results in poor evaluation of diaphragm. GT is noted, liver, gall bladder, adrenal glands, pancreas, kidneys, and spleen are unremarkable. Mild ascites.

Pelvis- There is a 2.3 x 1.3cm cystic lesion in the left adnexa, i.e. along pelvic sidewall which contains a fluid- fluid level. Conus medullaris terminates at L1.

In laymen's terms- his stomach protrudes through the diaphragm when full (hiatus hernia) and he has fluid in his lungs and abdomen. The fluid from his abdomen is probably from the shunt.

GI Series-
This test was traumatic for Wyatt. They made him lay on his side, chest, tummy, (I thought they were going to make him stand on his head next!!) and took pictures as barium was injected through his g-tube (first they tried mouth). It showed A LOT of reflux up the esophagus and the stomach going into the chest.

Blood Work-
White blood cell count 20,000 (normal range- 6,000-17,000)
Platelet Count high 554 (normal range 150-350)
Mean Corpuscular Vol (Size of red blood cells) high 89.5 (normal is 70-86)
Dr. K, the hematologist just came by and is going to look at his slide of a smear of blood. Wyatt's red blood cells are a little larger than normal. He said that this may mean nothing and that Wyatt's immune system is in overdrive and his numbers are high because his body is healing from a traumatic birth defect.
Everything else normal.

Nutrition Consult- Wyatt is a growing maniac. He is currently between 25 percent-50 percent for weight and 50 percent for height. Six months ago he was barely on the charts... so he is growing and doing great! He requires 105-110 cal (??) for his age range and he is currently getting 118. He can be off his food for 4 hours a day. We don't really keep track... we just make a guess so having a little wiggle room to leave him off more is good. We are trying to beef him up for a possible surgery.

What does all this mean???????? I have no idea... we are waiting for a plan. Wyatt is his normal self and you would never know that even though he acts well and is well... he was a very sick baby and it's taking a LONG time for him to recover. He is still sick but doing much, much, better and making progress.

So we are just sitting here waiting for the plan. Benji spent the night at the hospital last night and I arrived early this morning. He took Chloe to her first "drop off with out parents" Tumble Kicks for the first time. I was so nervous because we did the Mommy and Me class all year, but I thought this time we will leave her there for the 45 minute class to get her ready for preschool next year. She did awesome!! The instructor e-mailed me and told me she was very active and fit right in. That's my girl!! I really appreciated that e-mail since I am stuck at the hospital.

Quick Update...

More later... but Wyatt is back to his old self... You would think he had surgery today!!! They had to intubate him and we were in the recovery room for a while. Around 4pm, we got a room on the 6th floor and he was dancing and playing. It's hard to confine a toddler to a bed, stroller, or your lap!! We have no results yet... however, I heard through the grapevine that maybe a little bit of the stomach protrudes through. We will find out more later. I don't think it's as bad as we thought. They also got images of his ECMO wound too and the upper GI is scheduled tomorrow at 10am. They also took blood (gave it to me to give to our doctor??? isn't that weird... We also have a nutrition consult tomorrow too. The MRI doctor also saw both vocal cords moving today!!! yeah!! I feel like Wyatt is getting a big tune-up!!! We will have more details by tomorrow. Everyone was so nice today and helpful!

MRI updates.....

We checked in and just went back. They put him to sleep while I was holding him... he was screaming and fighting it and then just went to sleep. We have to wait about an hour and then will be in the recovery room before we get admitted. The are also arranging to get blood from Wyatt for the hematologist and he will get his upper GI tomorrow.

CDH News

Marion and Jason, lost their daughter from CDH after a 22 day fight. Marion posted on her blog a fund raiser that will help families similar to them. If you purchase a t-shirt for $16.00, it will pay for a family to stay at the Parker Reese House. Click on Baby Addison's Blog to learn more how you can help.

Here is an e-mail from Marion-
"I lost my daughter, Addison, to Congenital Diaphragmatic Hernia ("CDH") on March 11, 2009 after 22 days of fighting. While she was in the ICN, Jason and I stayed in a house similar to Parker's House out in San Francisco, CA. It really makes a difference to have a place to call home when your entire life has been turned upside down. I am helping raise money for the Parker Reese Foundation by selling t-shirts. Each t-shirt sold sponsors a family for one night at Parker's House.

Imagine caring for an entire family by simply buying and wearing a t-shirt. That’s what “Sponsor a Night” is all about. Purchase your $16 t-shirt today and wear it to show your support for the families staying at Parker’s House. For more information on The Parker Reese Foundation and Parker's House, please visit www.cdhawareness.net."


Wyatt has his big day at the hospital tomorrow. We are so lucky... we get to stay there overnight:)) Monday he will have his MRI and Tuesday will be the upper GI.

Medical Updates

On Wednesday we had an appointment with the hematologist. Wyatt has always had a high white blood cell count from birth. Normal for him is around 19,000 and high is 35,000. High (I think) for a normal baby is around 10,000. The doctors always said it was stress. Well, to put my mind at ease we had a consultation with a hematologist at Hopkins... Dr. K. He was awesome!! He said it may be stress, but he would like to find out the reason. It may be steroids (he is on Flovent), or other conditions, but he is pretty sure the reason is NOT malignant. So he is going to draw blood when Wyatt is in the hospital for some tests and then we will take it from there.

We have had an adventure with the MRI people. Wyatt's last patch was attached by wire and Wyatt has a shunt. His MRI is scheduled for this Monday and the doctors would like him to stay overnight and have the upper GI series done the next day. When the lady called to tell me about the MRI, I asked if it was safe since Wyatt has wire in him. She said, "I didn't know???" and will get back to us. Well she did not get back to us, so I called every day this week with no one returning my calls. Finally, our super nurse Susan called and a nurse finally called her back saying it was ok. On top of that, Wyatt's surgeon, Dr. A called our house to say it was safe and left his cell phone number for me to call if I had any questions. How sweet was that??? We are so lucky to have good doctors!!!

We will be spending the night at Hopkins on Monday and hopefully we will be finding out answers about reherniation.

New Equipment

Originally we were planning on weaning Wyatt from his oxygen this summer. I was really hoping that he would be off during the day time by the summer. It is still our goal but now that he may have rehereniated, he requires more oxygen. He came home on 1/8th, now he is up to 1/4th to 1/2 during the day time and at night around 1/2 to 3/4ths. We can have him off about one or two hours a day if he is doing well. So to monitor his oxygen he was always connected to the pulse oximeter (the big one). It's a probe attached to his toe, which is attached to his monitor. He is always on it. Well now that he is moving around, it's very difficult (impossible) to monitor his oxygen. So I purchased this adorable pulse oximeter that is portable. So at night Wyatt is on the "big" pulse oximeter and during the day we spot check him with the cute little one. This is very helpful when we are on walks and when he is off oxygen scooting around the house. We only had it for two days and it's a challenge for Wyatt to tolerate it on his finger for a short time, but I think after a lot of fun practice, he will like it. I did a lot of research to find a quality, not too expensive, pediatric one. So I hope it will be helpful for us and put our mind at ease!

Wyatt's Learning box

Recently Wyatt had his Infant and Toddler review meeting. It was suggested that Wyatt play with more developmental age appropriate toys such as a block sorters, rings, tea party, brushing the pony's hair, books about shapes, animals, and body parts. Wyatt has many toys but what he enjoys the most is THROWING them. We are working on playing together such as playing tea party rather than throwing the cup across the room (what boy wants to play tea party??), brushing My Little Pony's tail, putting blocks in a sorter, putting rings on a stick, practicing animal sounds, body parts, and shapes. So I created a Learning Box. I purchased age-appropriate toys and books for Wyatt. Since so many people work with Wyatt such as Susan, his nurse, parents, therapists, Chloe, grandparents... I wanted a consistent "curriculum" for him. The rules are that only one toy comes out of the box at a time and to make it fun by avoiding say "No" when he throws it (he is very sensitive and cries when you say no). So far it's working... we just had our assessment and cognitively Wyatt is on target for his age range so OT therapy was reduced from once a week to every other week. Physically, he is age 6-9 months since he is not walking, crawling, or pulling up. He is however a very fast "scooter" and "runs" all throughout the house. This seems much more efficient than crawling, so I don't know if he will ever crawl??? PT is still once a week and we love our therapist, Patty. Wyatt knows all his animal sounds, knows the parts of the face, and we are currently working on colors and shapes with him. He has a very hoarse raspy voice due to the paralyzed vocal cord but he likes to repeat everything you say. His favorite words are "no", "Chloe" "Abby", and "wait." He also loves to blow kisses and say and wave "bye,bye." He is the entertainer during dinner time and makes Chloe laugh by putting his spoon in his mouth side-ways and dance around in his high-chair. I have a funny feeling that he is going to be the class clown!!