A Regular Saturday....

I just discovered that there is a new reality show on Thursdays 10pm on ABC. It's called Hopkins. I missed the first show but you can catch the full first episode on ABC's website. There is also an interview called "Would you withdraw life support?" The doctor being interviewed is Dr. Berkowitz.... Wyatt's first doctor who put Wyatt on ECMO and came to my hospital room at 4am to tell me that Wyatt went into cardiac arrest as they were performing surgery to put the cannula's in his neck. The interview on the website took place on the 7th floor of the Children's Center- The PICU where Wyatt was on ECMO for 13 days and stayed their for about the first month of his life and for short stays after his surgeries. We still keep in touch with Dr. Berkowitz and we really think he is the greatest. I would always seek his advice throughout Wyatt's stay at Hopkins. We are looking forward to see him at the ECMO Christmas Party in December!! Check out his interview here

Today was a HUGE day for Chloe. Chloe went "pee pee on the potty" for the first time!! She is only 22 month's old and we were not trying to potty train her yet... but she took off all her clothes, asked me to take off her diaper and went to the toilet!! So I got out our "baby toilet" and she went in toilet!! She was so happy and ran around the entire house!! We celebrated by taking Chloe and Wyatt for a walk to the snowball stand and the playground (the above pictures) and then we went out to dinner with our neighbors. Wyatt fell asleep. I didn't realize today, but Wyatt has been on 1/8 liter of oxygen and kept his stats above 97 percent throughout the day (down from 1/4 liter). However, in the evening when he fell asleep, we had to move him up to 1/4 liter.

Keep praying for baby Seth. He is still on ECMO and needs your prayers. He has a carepage and a photo website. There is a nice picture of the ECMO machine.

Our Present to Gina

(psst...This is Danielle)

I got Gina a materialistic queen's dream for a present; but she'll never know what the name brand gem is. Instead, I'll be sporting it sometime in the future when just enough time goes by where she won't automatically question if my fashionable item was supposed to be her birthday present. Gina, in her not true to form way, in more words or less, shunned material presents this year and instead plead for her family's blood (yes I bled today), sweat and tears (well, not real tears, more like tears from the pouring down rain.) Her wish list? A new tree line in her backyard.

I know!! Nutty, right?? Her wish is my command. Plus, I've been thinking how much her previous bought present would go with so many things I own. Her goal was to extend the brush and woods behind her house at least five feet. My man, thekidg, assessed the project and said, "Danielle, there is no way you and your father will be able to do this. This is work for a professional."

Well, kidg, I have two words for you... EAT DIRT!! Literally, because there is now plenty of it and you can easily walk back there with out thorning yourself with bush and woods.

Ta-da!

Thank you for the birthday wishes

I would like to publicly thank my wonderful sister for advertising my age to the world!! What are sisters for??? I'll get her back someday!! My birthday was very nice and quiet. Chloe and Benji made blueberry pancakes and put candles in mine for dinner. My friend Whitney offered to babysit the kids after they went to bed so that Benji and I could go out for a little bit (our first time since Wyatt came home...thank you Whitney!!) I hear tell... my family and husband are planning a small celebration this weekend..?? Overall, it was a very nice day. I am looking back on my 34 years and I would not change a thing. I am so blessed and lucky to have two wonderful children, a wonderful husband, and a caring and wonderful parents, sister, grandmother, and in-laws. I have a job that I really like and great friends. I am very happy:))) Wyatt and Chloe gave me a really cool spider man card too!! (I think Wyatt picked it out).

Today we went to Hopkins for an appointment with Dr. Lefton-Greif for a swallow study. She decided not to give him the swallow study since he last had a bottle when he was 5 weeks old and we would probably only traumatize him. So based on his age, the scope from the ENT, and our opinions... Wyatt is now cleared to eat solid foods!!! Well... it's not as easy as it sounds. We tried to give him a little bit of applesauce at the doctor's office (a dot on his lip) and he gagged, cried, and wanted nothing to do with eating!! So we are starting at square one. We need to make eating enjoyable for him. He is getting all the nutrition that is needed through his formula (Elacare 27 cal/ 42 ml per hour/ 23 hours), so eating for now will be for enjoyment. We are suppose to play music, put him in his favorite chair, and make a big ordeal out of it. The debut food will be applesauce!!

Also, Wyatt's feeding tube has a small tear in it, causing us to tape the connector piece to the tube which is a pain when trying to vent him. Today, during our appointment, the PA for the pediatric surgery came over to clinic to change Wyatt's tube. It's so easy and she gave us replacements for the future. Now we are mess free!! Wyatt weighs 16 lbs 8 oz and has not gained much in the past week. I think the reason for this is that he is off his feeds for more than 1 hour a day. When fussy the nurses and us will turn off his feeds until his is comfortable... I think when adding the time off it's adding up. We will have to change that in order for him to gain more weight.

By the way... my sister started a photography business and it's doing really well so far. Check out her blog for more info.

Also, Dr. Chandler (Wyatt's surgeon) just completed her two year fellowship at Hopkins and will be moving on to Florida. It's going to be weird not seeing her. She always made us feel so comfortable in such a big scary hospital. She is one of those people who not only does her job well, but has been part of our lives for the past 8 months. We will miss her and wish her the best in her next endeavor.

A few blogs worth checking out...

My sister's blog- I loaned my sister a cook book and she decided to write about it on her blog plus post a bunch of false statements about me:))

Wyatt's friend Jack gave me the sweetest birthday wish and I want to thank the Jensen Family. We are so blessed to have them in our lives.

A new baby was just born with CDH, Baby Seth, and he is now on ECMO. He needs many prayers now. You can follow his story on his care page. Keep fighting Seth!!!

Baby Kinley is doing well after surgery. She is off ECMO and is now getting weaned from the vent and her narcotics. It's a long process and we wish her the best.

Baby Sofia's mommy broke her foot and will be getting surgery tomorrow. Sofia is home on oxygen and is doing really well, but still requires a lot of car. Sofia's mommy can not bear any weight on her foot for a long time. You are in our prayers!!

Baby Claire just turned one year old and her adorable pictures are posted on her blog. She is so cute and a role model for Wyatt for when he turns one!!

It's Mommy's Birthday!!

Since she probably wouldn't tell anyone herself until after the fact, I'll go ahead and let you know ..... It's Gina's 34th Birthday today!!! Happy Birthday!!

The Weekend

Wyatt enjoyed a weekend with just his Daddy. I went to the beach with the girls and Chloe spent the weekend with my parents and Aunt Danielle/Uncle Gino. Wyatt and Daddy ventured out to the local grocery store together and instead of driving, they walked there! They also enjoyed hanging out at with our neighbor at the neighborhood yard sale together. Tonight is his last night of the diuretics and then he will just be on Prevacid!! This Wednesday is the swallow study!! Go Wyatt Go!!

The World is Flat

I think this is neat... I can only view the countries of people who view the blog. Just for today these are the countries where people viewed my blog- United States, Australia, United Kingdom, Malaysia, Japan, New Zealand, Costa Rica, Italy, Russia, Portugal, and Slovaka. The world is flat.

Happy 60th Birthday Dad!!

My Dad is great!! He is the best Dad in the world and loves my sister and I very much as well as his two grand kids. He is retired and enjoys refereeing sports as a side job. Today he turns 60 and to celebrate my entire immediate family came over to my house for an Italian dinner (my Dad and Grandparents are straight off the boat from Italy!) It was very special, because my sister who lived in Japan for the past fours years was able to join us and her new husband Gino. There were four generations of family there... my grandmother being the oldest at 85 years old and Wyatt being the youngest at 8 months!! It was a fun night with plenty of lasagna, apple martini's, and cake for everyone!! Wyatt decided to fall asleep early tonight, so he missed dinner... but he hardly napped all day today. There is another birthday tribute to my Dad on my sister's blog.

Baby Kinley needs your prayers. She is currently on ECMO and is scheduled for surgery tomorrow... she is not ready to get off ECMO, so surgery will be done on ECMO. There is a risk of bleeding b/c of the heperin so please say a little pray for her tomorrow morning. All CDH babies are fighters and special miracles.

The Girls!

This entry has nothing to do with Wyatt... however Nanny is in town and the girls went out to celebrate so here is a photo of Amy, Whitney, Lori, and me.

Super Cool Kids

My kids are so cool!! Wyatt has been very happy lately. The other day I turned on the TV (PBS) and discovered a show called "Super Why" and the main character super hero's name is Wyatt!!! I have my real life super hero who is Wyatt and his side kick Chloe!

Fun Day

Chloe and Lily eating snoballs




Nanny is in town this week from Oregon and we walked to our local snoball stand. The girls had a great time eating strawberry snoballs and playing on the playground while Wyatt slept. We really do miss Nanny very much!!!

A CDH baby needing your prayers

Baby Kinley was born on May 25th and is still on ECMO. She has CDH and is a tough little girl. Click here to follow her story as she is being weaned off ECMO. Very similar to Wyatt. She is in our thoughts and prayers.

20,000

Wow!!! My blog just received 20,000 hits over the weekend. I never imagined so many people would be reading it. I feel obligated to keep up with it... but's it's fun and one day I'll make it into a book for Wyatt. As you read... don't grade my writing.... because half the time I am updating around midnight and just say whatever is on my mind. I originally did not share the blog and later decided to post the address on Wyatt's crib... it took off from there. I started the blog Christmas week and now it averages about 100 people a day from all over the world. It's so much more than I ever imagined. Don't worry... I have no idea who is checking... I just know the number of people each day and from what state (just check the bottom of the blog). It's relaxing at night and I think good for me to recap the day, especially during the early days when Wyatt was in the PICU. We have made so many connections and friends through this blog from around the world. It was a good decision to share it with the world... it really makes you realize that we are all part of ONE planet. Thank you to all Wyatt's supporters. We have strength because of you.

Weekend Re-cap

This weekend was fun and busy!! On Saturday, we went to my cousin's Sabrina's house for a party. Wyatt stayed home with Daddy... but Chloe had a great time. Sabrina lives in Federal Hill, Baltimore and her house has a top deck... Chloe felt free as a bird running around. Father's Day was Sunday, but Daddy had to work all through the night and day since it was "network down day." So Father's Day is post-poned until next Sunday. I decided to venture out to the parent's house an hour a way with both kids. We had crabs and pizza outside and Wyatt enjoyed every minute of it. Chloe loved playing soccer with her Aunt and Uncle. Our ex-nanny is in town, so Monday night the girls went out to catch up on life. Nanny is very happy in Portland and we are very proud of her!!!

My sister wrote another sweet message about baby Skyla on her blog.

On a side note, Wyatt's feeding tube has a small tear in it and it's impossible to keep tight!! We have to tape the food tube to it and it's really annoying!!! Hopefully we can solve the problem soon.

Wyatt Travels to My Crib!!

Well not my crib, my parents crib. It's Danielle posting today. After an hour of packing, checking and rechecking for all needed supplies, Gina, Chloe, Wyatt, three tanks of oxygen, a feeding tube and a stat machine drove the hour to Fallston to spend Father's Day with our dad. Wyatt seemed overjoyed to be out of the house. He arrived at 4 pm, stayed until 9 pm, skipped all of his naps and ignored his usual 7 pm bedtime. He was sociable and smiley the whole time. He watched us eat Maryland crabs, gazed at the sunny skies and let the fresh air hit his face. At 8:30 pm, when he couldn't stand it any longer, he passed out on his side on a blanket on the grass. I'm sure Gina will post pics soon!

Danielle's comment

My sister wrote a comment on Skyla's blog and I just thought I would share it... because it's so true....

"From the above comments you can honestly say your little Skyla brought the world to tears. She also brought us hope, empathy, tolerance and admiration. She's amazing! I used to look at Wyatt's bad days and feel so sad for him and tell all the people who asked about him how grave his situation was. As soon as I found Skyla's page, that changed me. Instead of looking at Wyatt's suffering, I would instead look at the happiness that was in his eyes and appreciate the fight that he was putting up. Skyla always seemed happy and not fazed by her million and one obstacles. She seemed ready to conquer anything! Kristy - thank you for taking us on Skyla's journey. The world would have never known her if you didn't share it.

-Danielle
Maryland, USA"

June 15, 2008 12:28 AM

A Tribute to Baby Skyla

Baby Skyla received her angel wings today. Skyla and Wyatt are both 8 months old born with CDH. Skyla fought to the very end... she is so beautiful and sweet and was always in our prayers. Our hearts go out to her and her family. Wyatt's supporters followed her story from the beginning. Life is just not fair!! Skyla's mother posted a beautiful tribute to her on Sklya's blog. She will always be with us. I just don't know what more to say... :(((

Wyatt had a pulmonary dr. appointment yesterday. Besides Wyatt being super upset, it went very well. We took him off oxygen for a little while and he de-stated about five min. later, so he is not ready to be weaned. His diuretics were discontinued as of Monday!!! So all that leaves is Prevacid and Flovent for his medications!!! He has an x-ray on July 7th and a follow up with his surgeon on July 8th... then we will formulate a plan for surgery if he re-herniated.

It's Chloe's turn to be in the spot light!

Chloe is 21 months old and she loves to imitate people. For example, this morning I caught her putting on deodorant!!

Chloe and Wyatt's cousins came over today to play. She had a lot of fun with Allison and Jonathan.


Last night I looked over at Wyatt's crib and saw his two little feet sticking out... this is what he looked like... I thought it was funny.

Art in the Park and a bath... a hot Saturday!

Do you have to drag me out in the 100 degree weather, just so Chloe can do a craft??

Chloe doing a craft

Well... it's not too bad... I really liked the belly dancers!!

Wyatt has a helper with his bath and he is just thrilled about that!!

My friend Amy is a very talented crafter and made these cool cards for me to use as thank you notes. Check out her blog for more!! She has a family blog and a craft blog.

Today was a busy day.... we decided to have a family day and go to the Art in the Park. It was almost 100 degrees, but we had a great time! Chloe made a craft and Wyatt loved watching the belly dancers. We then walked to a local Mexican Restaurant for lunch. Chloe had a great time, but Wyatt decided to sleep through he entire experience!! We came home and they both took naps, then we went for a family walk. Overall, a busy, fun day! In between, Chloe helped us give Wyatt a bath. Wyatt now weighes an even 16 pounds and is currently up to 42 mls/hr as of today (his goal) Baby Sklya needs your prayers... her family has been through such a roller coaster ride, but Skyla always shows her strength!

Friday pics

Playing on the floor!

Green Day!

More pictures from our Magical Night... continued

For more pictures of the night click on Jack's Blog...
My sister updated her blog. We are opposites and she is trying very hard to be domestic. It's not exactly working out, but she is trying.

A Magical Night

Last night was definitely a full circle moment. After reflecting back on the night, I realize how much Wyatt has affected my life. He has changed my life completely for the better and I am so proud of him. We invited Nicole (Wyatt's surgeon), Vicki, James, and Jack over for dinner and had a wonderful time. Nicole is moving on with her career to Florida and will be leaving at the end of June. She has been with Wyatt since ECMO and has been part of every surgery of Wyatt's (except the shunt). Nicole forms a relationship with the parents and genuinely cares about your child and their parents. She visits the patients everyday, takes her time to talk to the parents, answers the millions of questions that you have no matter how silly they are, and loves your child. It's everything you want a surgeon to be since your child's life is in their hands. At a time of the unknown in the PICU, she was by our side. She is never in a hurry and always makes time for you. We wish her the very best in her next stage of life... a new job, new house, new environment. We are going to miss her. We owe it to Nicole for introducing us to Wyatt's buddy Jack and his parents Vicki and James. As Wyatt gets older, he will definitely know that Nicole has impacted our lives. Thank you!!

It was also the first time that Jack, born on August 20th with CDH at Hopkins met Wyatt. Jack is adorable and a miracle. He has grown so much from when I last saw him when Wyatt and Jack reherniated in December. Nicole introduced us to Vicki and James and their son Jack who have been a great support to us because they have "been there and done that" and who will be life-long friends. We learned a lot about CDH from Vicki and James. Jack is perfect and looking at him, you would never know all the things he has been through. CDH babies are patient, strong, and are adorable!

It was a great night and we are very lucky.

A Great Day at Hopkins .... and all tired out!

Today we had a nice day with Wyatt. First he had PT in the morning and then an ENT appointment. We were able to look at his vocal cords using a camera. We got to see both of them and guess what.......... they both closed!!!!! This is awesome news because it means that the right vocal cord is improving. Now it does not move like the left one, but there is slight movement and the left cord seems to be compensating for the right one. I guess this is why he is talking a lot now and his cry is getting louder. Wyatt has a swallow study on June 25th and that will determine if we can start feeding him by mouth!!

The GI appointment was nice too... Wyatt's height and weight are on the charts finally (the lower end). His feeds are increased from 40 cc's to 42 cc's an hour. Also, two of his meds- Carafate and Reglan are gone!! The Prevacid remains. We have to apply steroid creme around his g-tube site because it's a little red. It also looks like Wyatt's diaper rash is actually a yeast infection so we have cream for that. Overall it was a positive day and Wyatt was wide awake and happy for most of it!

Bath Time

Getting Clean!

Chloe is a great little helper!

All dried off!


All Done!

Since Wyatt had a central line, he was unable to take a normal bath (getting completely submerged). It was always a bird bath. Now that the central line is out, Wyatt took a real bath and he loves kicking and splashing around in the tub! We have this cool little tub that has a portable shower attached to it so that we can bring it to Wyatt rather than bringing Wyatt to the tub. He had a great time and Chloe was a great little helper.
Tomorrow we have an ENT and GI appointment at Hopkins.

Wyatt and Mom-mom

Family Pics

Pictures with Daddy, Aunt Danielle, and Chloe on a Saturday afternoon!