Tuesday, December 30, 2008

Christmas 2008

This Christmas was such a joyful season. We enjoyed spending time with family, good food and making special memories. We had a great time watching Emma actively participate in the festivities; from making cookies to decorating the tree with Pooh Bear ornaments. This year she really understood about gifts and as most 3 year olds do thought, she they were all for her. It was so much fun seeing the excitement on her face when she was given a gift. She was able to unwrap them with only a little assistance. It was great to see her progress from last Christmas.
This season, we were blessed abundantly by family and friends who are dear to our hearts. We are so thankful for you all and your generosity. The Spirit of Christmas touched our hearts in ways we didn't know possible.

Emma in her Christmas dress from Grandma Carol


A VERY Thankful Family


Dreaming of Sugar Plums on Christmas Eve after a fun filled day.

Sunday, December 21, 2008

Making Christmas Cookies

I realize that it has been a long time since we sent out an update. Emma continues to work hard with her Speech, Occupational & Physical therapists. Her language, eating, fine/gross motor skills are emerging; although she still has a long ahead. We are praying that she learns to walk this year.

Its been busy with the Christmas season in full swing. Emma is enjoying the lights and decorations that brighten her world, although it did take her a little while to get acclimated to the decor. She has been enjoying watching Christmas DVDs with her favorite being Frosty The Snowman. Emma has had lots of fun visiting with family. She has even been able to help bake some yummy Christmas cookies when Grandma came over last Monday.

As for the new baby; due in April...So far she looks good. The Doctor is pleased with her growth and we will continue to be monitored closely every 2-3 weeks. We continue to pray for Alissa's progress with being able to consume food and tolerate liquids. As of now she is making progress one day at a time and hopes to be able to enjoy some Christmas dinner. She continues to be on bed rest with modified activity, which is hard on everyone. Please pray for us.

We are truly blessed with wonderful family & friends who are there to help support us during this time. Thank you for all you do.


Making Cookies w/ Grandma, such adoration


Adding Sprinkles

The Finished Product, such pride in her work


Sharing cookies with Grandma
Tasting her Work


What a Happy Girl

Rocking her handkerchief baby


Playing Dress-up at Nan & Papa's


Monday, November 17, 2008

It's A Girl and The Latest on Alissa

Sorry to combine this, but we are burnt out. We found out Thursday we are having another little girl. Unfortunately, Alissa had a rough weekend. She has now lost over 20 pounds since becoming pregnant and the doctor is more concerned now. He is putting her on total nutrition through her IVs to make sure she and the baby are getting fed. She is on the way to Mission Hospital to be admitted for a few days in order to begin the TPN IV nutrition. After she has been on it for a few days, they will send her home to continue at home. Our new baby girl is doing fine though. Alissa is 17 weeks today with a due date of April 20. We really pray that the TPN will reverse the weight loss and help her make it through the rest of the time.

Wednesday, October 29, 2008

A Special Visitor

Today we had a very special visitor stop by our house. Katy and Eddie brought Liam by our house so that Alissa and Emma could meet him. We had a great time watching Emma with her new cousin.
Emma Holding Her Cousin Liam
Alissa Holding Her Nephew

Sunday, October 26, 2008

Our New Nephew

This morning my sister Katy gave birth to a healthy baby boy. William "Liam" Ryan Eccker was born October 26 at 5:05 am weighing 6 lbs 8 oz and 19 inches tall. I visited my nephew this morning and took a few pictures. Unfortunately Alissa is still feeling horrible and is stuck on IVs, so she was unable to come. Here are some pictures.

The Happy New Family

Eddie and His Son Liam
Uncle Mark and Liam

Friday, October 10, 2008

Wheel of Fortune


My buddy Josh is going to be on the Wheel of Fortune on Wednesday October 15. Due to the presidential debates, it will not be airing until 10:30 PM though. Be sure to set your DVR's to catch this episode. Josh is going to rock Canada Week, eh.

Sunday, October 05, 2008

Thanks Grandma and Grandpa

For the past few weekends, Grandma and Grandpa Fitzwater have taken Emma for a day of fun. They had so much fun while Mommy and Daddy had some time to relax alone. She has had fun playing in her ball tent at Grandma and Grandpa's, going for drives, and riding on the ferry at Balboa. Here are some pictures.

Emma playing with her Autopia Car
Emma in her ball pit at Grandma and Grandpa's
Such a Big Girl in her Lawn Chair
Riding on the Ferry to Balboa with Grandpa

Thursday, October 02, 2008

Big Sister

Around April 20, 2009, Emma will be a big sister. We are almost 12 weeks pregnant and it has already been an adventure. Alissa has been on disability for 2 weeks due to hyperemesis. She spent 5 days at Mission Hospital getting IVs and was sent home on disability. She is hooked up to IVs at home around the clock to keep hydrated. The good new is that so far, the baby is looking great. Please pray that the nausea will subside quickly and that our baby remains healthy and growing steadily.


Our New Baby

Sunday, September 28, 2008

Post Trach Photos


So Happy to Have Her Trach Out


Taking a nap with Curious George


At the Santa Ana Zoo with Uncle David and Auntie Karen


I don't take naps anymore, so sometimes
I fall asleep during my nightly breathing treatment.

Tuesday, September 23, 2008

Long Awaited Update

I apologize for the long wait on an update. Emma has been doing so well without her trach. She keeps us so busy now. She has not needed any oxygen since getting her trach out and has been relatively healthy. She is adjusting to the changes quite nicely and has definitely discovered her voice. She has had a few crying fits that have lasted an hour, which is tough on us. Other than that, she is just increasing her vocabulary. A lot of it is just babbling, but she is daily saying new words. She likes to ask for help a lot and says thank you and I love you. I promise to have some pictures and video up by the end of the week, but at least wanted to put something up.

Thursday, September 04, 2008

24 Hours

After 24 hours of being without her trach, Emma is doing wonderful. She actually got to come home already since she was doing so well. For her entire life, she has required oxygen at night. Last night, she didn't. She has been breathing completely on her own and has had great blood oxygen levels ever since getting her trach out yesterday. She has been making so much more noise, but won't talk very much on camera. Here is a small clip of her without her trach.

Wednesday, September 03, 2008

Trach Free

At 2:00 we took out Emma’s trach and has been doing great since. She is talking up a storm and currently has the hiccups. I will let you all know how things go over the first 24 hours tomorrow.

The Big Day

I just received the call we have been waiting for. The doctor is ready to take Emma's trach out. I will be bringing Emma down to the hospital this afternoon. After they take it out, they will be observing her for a few days before sending her home. Please keep us in your prayers.

Monday, August 18, 2008

In the Last Week

Emma has been doing ok since she was discharged last week. Unfortunately, she has come down with pneumonia but seems to be responding well to the antibiotics. The good news is that she has been able to stay at home while she's recovering. She has had 3 doctors appointments that had all led to the same conclusion; she probably doesn't need her trach anymore. So in a couple of weeks, provided she gets and stays healthy, we will head back into the hospital to attempt decanulation (getting her trach out). Please pray for us as we are very nervous and cautiously excited. Pray for Emma's lungs to heal, and trachea strength to keep her airway open as well as her ability to breathe safely without the trach tube. We will send updates as we get them.

Sunday, August 10, 2008

Happy Belated Birthday Daddy...We're Home

Dear Daddy,
This year I wanted to give you a special birthday gift, but I was in the hospital. I worked very hard to get better quickly so I could come home to you as soon as my Doctor's would let me. So today I am sleeping in my own comfy bed in our house. I made you a banner when I was in the hospital and I hope we can really celebrate your special day now that I am home.
I love you so much and I am glad you are my Daddy.
Happy 35th Birthday!
Love, Emma


Working hard to make it just perfect for Daddy...

Happy Birthday Daddy, this year Emma and her smile (despite all of the procedures she endured) were a very special gift just for Daddy on his actual day.

Saturday, August 09, 2008

On Room Air

As of now Emma has been in the hospital just shy of 2 weeks. Yesterday, Emma had a 3rd bronchoscopy and the Pulmanologist was able to place a shorter non-custom tracheostomy tube instead of her normal customized tube. She was in the PICU for the procedure and did so well she was transferred to the Pediatric floor(where she has been staying) shortly thereafter. Emma has continued to need Oxygen (O2) support to keep her blood-oxygen levels up since the original bronchoscopy on July 28th. Well we are happy to say that Emma has worked hard along with her Nurses, Respiratory Therapists and Doctors to wean off of the O2; and is now on ROOM AIR. This is wonderful because not only is she back to her baseline from when we were admitted but she is also on a standard tracheostomy tube and tolerating it. This is BIG because she IS one step closer to getting her trach out. There is no actual date in site but we are getting there. Praise God for our Little Miracle and how far she has come in such a short time. We are still waiting on the results of the EEG but we may not here the results before we are discharged, as we are tentatively scheduled to be going home tomorrow. We will keep you all posted as we get more information. Thank you all for your prayers and support during this hospital stay and always.

Sunday, August 03, 2008

Emma's EEG

Emma is happy and is acting more like herself despite being in the midst of a 24 hour EEG test. She is currently hooked up to about 25 electrodes to record the electrical activity of her brain. They are working to confirm or deny that she has been having seizures. She has been a real trooper. Yesterday she had very few desats of her oxygen levels, while the previous several days she was having them several times an hour. It is now just a waiting game to see what has been going on.



Emma having the electrodes placed on her head



Emma wearing her "hat"

Thursday, July 31, 2008

Argh

Well, Emma is back in the hospital today. She continued to have trouble breathing at home and had some apnea episodes last night. When she went in for her follow-up appointment today, the doctor insisted we admit her. Luckily she is back at CHOC at Mission where they know her. Shortly after arriving, Emma appeared to have possibly had a seizure. She began to desat and went from playing to staring and unresponsive. She quickly was back to herself, but the 2 nurses in the room showed concern by the episode. We don't know for sure that it was a seizure, but we will be hopefully run some tests to confirm.

Wednesday, July 30, 2008

Emma is still having trouble keeping her oxygen saturation up to an acceptable level but seeing as she was active and feeling better, we were able be discharged and monitor her at home. We will be going to see her pediatrician for a follow up appointment tomorrow to make sure she is still stable. Emma is still requiring oxygen around the clock and has a pretty loud cough now, but she is doing well. When we got home, Emma was so excited to be there that she crawled around the floor- oxygen tubing in tow-saying hello to all her favorite toys and stuffed animals. We are thankful that she is improving and home again with us tonight. It is great to be home. Were looking forward to a full night's sleep and more Doctor's appointments tomorrow.


Pre-Surgery...Emma was all smiles
Emma had a hard time waking up from her anesthesia;
but she was in good spirits as she listened to Caillou.

Daddy and Emma Spending Some Time in the PICU at CHOC


Tuesday, July 29, 2008

Oh the Saga Continues

Yesterday's Bronch and Eye-duct surgeries went well, or so we thought. As Emma was in recovery we were informed that a shorter-non-custom trach had been placed in Emma as a trial for weaning her off the trach. This was incredibly good news. The scar tissue that she was needing to be removed was not as bad as expected, so the Doctor didn't remove any. The eye-ducts had been successfully flushed. All GOOD news. Then her Doctor said that he had found a Submuceous Cleft in her pallate and he was refering her to the cranial facial team for follow up. What next?
Well Emma seemed to not be tolerating the shorter trach while in recovery as she couldn't keep her oxygen saturation level up. We switched back to her custom trach and that didn't help either. After about 5 hours in the recovery room, it was finally decided that Emma should move up to the new PICU. She slept a lot yesterday and woke up a little happier today. She is looking a little better and is about to start her feeding again. We have no idea how long she will stay, but don't expect for it to be too long. **As we are writing this, the earthquake hit. Being on the 6th floor of a building on rollers was quite exciting for Emma. **

Saturday, July 26, 2008

A Quick Update & Prayer Request


Emma is doing very well. She makes us smile and laugh at the constant comedy of her ever changing personality. The has been working very hard with Mommy and her OT to eat baby food by mouth. This has been a constant challenge from the beginning and over the last 4 weeks Emma has started to make progress. These are huge baby steps and we're very proud but cautiously optimistic. She is steadily gaining weight and currently weighs about 24 lbs. but that's not very official as we have not been to the Doctor in recent weeks. Speaking of Doctors, Emma is scheduled for a bronchoscopy, to remove scar tissue and to check on her trachea strength and eye duct irrigation surgery for Monday morning. Please pray the surgeries goes well and that the results are encouraging. We will post any news as soon as we are able.

Thank you all for your love and support.

Being Silly makes Mommy Laugh...

Sunday, July 20, 2008

Emma's 3rd Birthday Party

Happiness is celebrating Emma's 3rd Birthday with family and friends. On Saturday we had a small party for Emma. It was such a joy watching Emma having a good time seeing her friends and her Birthday Train Cake. She enjoyed soaring through the sky on the swings and popping giant bubbles.
All in all it was a great day to celebrate Emma..

Emma with Mommy & Daddy


Chance & his Mommy Popping Bubbles

What Glee she shows while opening presents

Giving Pooh Bear Great Big Hugs

Emma opened a Woody Doll and giggled with excitement

Enjoying Lunch

Push Me Higher Uncle Braden


Emma's Winnie the Pooh Birthday Train Cake


Woo Woo All Aboard


Thursday, July 17, 2008

A Special Day For A Special Girl

Our Sweet Miracle you have come so far. We are so proud of you and who you are. You inspire everyone you meet and even those you've not yet met but know about you. You are truly a blessing in our lives and we could not ask for a better daughter. We are honored to be your parents and love you SO much! Happy 3rd Birthday Emma...
Safe in Daddy's arms only 9 days old
Emma at 1 year old
Sitting with assistance, what a happy girl.
Emma at 2 years old
Silly and always happy, such a blessing...

Emma at 3 years old and still smiling...

Happy 3rd Birthday Emma!
Yesterday was a very special day for Emma and Mommy. Not only was it Emma's 3rd Birthday but Daddy was coming home from his business trip. We woke up in the morning and went to meet our dear friends at the Spectrum for a morning filled with fun. Later, after our nap, we drove to Long Beach to pick up Daddy at the Airport. Emma had a great day filled with friends & fun, water play, train riding, shopping, singing, lots of picture taking and Daddy. Happy Birthday Sweet Girl, We love you SO much. We thank God for you everyday, but today we celebrate you! This weekend we will be having a celebration, so stay tuned for more pictures.

Emma and Mommy getting ready to have some fun




I got my penny and I'm ready to make a birthday wish...



There is goes; wonder what she wished for?


Playing with toys at the Carters store while Mommy Shopped



Being Silly with Jen and Riley

Getting Ready To EAT at Johnny Rockets, oh what fun.

The Birthday Girl



Riley & his Mommy, Jen

Getting Ready for Daddy to come home,

Making Daddy a Welcome Home Daddy sign...

We are SO glad to have Daddy Home; the BEST Birthday gift EVER!