Sunday, May 31, 2009

G-Tube Feeding

These past two days at Children's Hospital have been pretty routine. Our nurses have been wonderful and Noah's monitors have been very kind and are not beeping unnecessarily. Kc and I have learned how to feed Noah through his new G-Tube. It looks just like the "plug" on a beach ball – you know, the thing you would use to blow up the ball.
We use special tubes that lock into the G-Tube. So far, Noah has tolerated his feeds quite well. He started out with 30 ml (that's one ounce) every three hours and we have added 5 ml to each feed. We're hoping to get up to 100 ml (just over three ounces) per feeding. If Noah can tolerate that amount, Dr. Hodge says we can go home tomorrow. Yippee!!! Noah enjoys "helping" me hold the syringe. The most amazing part about this weekend has been the lack of vomit. Noah normally pukes after every feed. We wake up at least once every night to clean him and the mess he makes. He goes through a minimum of four changes of clothing every day. Because of the fundoplication procedure, Noah now smells like a baby rather than acid and curdled milk. It has truly been a glorious couple of days.

Friday, May 29, 2009

Success

Thank you for all of your thoughts and prayers. Noah's surgery went well today. He now has a Mic-Key G-tube in his little belly and the fundoplication procedure was a success. Dr. Hodge was encouraged by how "low" the colon was and said it was easy to attach to his anus. It was a glorious moment when I finally got to hold him after he came out of recovery. He is sleeping away right now...with the help of some pain medication. Hopefully tonight all three of us will sleep like babies.

Thursday, May 28, 2009

Tuesday, May 26, 2009

Chunky Monkey

So...we've been working hard at gaining weight. Well, actually Kc and I have been working hard at loosing weight. We both have some "baby weight" that we need to loose. Noah, on the other hand, has been working hard at gaining. We have been feeding him smaller amounts of food every hour and a half to help "keep it down" as well as feeding him on a continuous pump of food at night. We are SO excited to announce that today his stats are:

Weight: 12 pounds 8 ounces
Height: 24 inches

He is still behind where he should be. According to the experts, by four months most babies have doubled their birth weight. By that formula, Noah should be over 16 pounds. For as many surgeries and procedures he has endured, we are thankful that he is gaining weight and finally becoming a chunky monkey. His little rolls on his arms are too cute!Noah has developed "knee dimples". They are SO adorable.I wish that Kc and I had to work hard in order to gain weight. It just seems to come so easy for the both of us.

Monday, May 25, 2009

Big Surgery Day

This Friday, the 29th, Noah will be heading back to Children's Hospital once again to go under the knife. First, his ENT doctor, Dr. Dunham, will perform a trachioscopy, which will allow him to look down Noah's trachea and "see what's going on". Next, Dr. Hodge, will perform the Nissen Fundoplication and insert a G-Tube. If time permits, he will also do the first part of Noah's colostomy reversal – connecting the bottom of the colon to his anus. Once that has healed, in about six weeks, Noah will go back for the final part of his colostomy reversal – putting the colon back together. We'd love prayers on Friday for the doctors and nurses, for Noah, and for Daddy and I who will once again be spending several days and nights in the hospital.

Sunday, May 24, 2009

Tap Dancing

Nana taught Noah how to tap dance last week and it is now one of his favorite things to do!

Tuesday, May 19, 2009

Busy Two Weeks

Noah has had a busy couple of weeks with Nana and Papa. They have traveled to Children's Hospital several times for a swallow test, upper GI, stomach emptying test, renal ultrasound and voiding cystogram.

The swallow test was to determine if he had any physical reason that he was not able to swallow as well as rule out the possibility of aspiration. Noah passed with flying colors and is now working with his OT, Elsabe, on swallowing. She is putting small amounts of milk in a medicine cup and encouraging him to drink from the cup. Noah is not really a fan, but we're continuing to work on it.

The upper GI and stomach emptying tests were ordered by Noah's pediatric surgeon, Dr. Hodge. We are most likely going to put a G-tube (tube going directly into Noah's stomach) in that will replace his NG tube. We are also considering doing a Nissen Fundoplication procedure in which the top of the stomach is wrapped around the esophagus to create a "one way" valve that will not allow acid or vomit to come up.Noah also had an ultrasound of his kidneys as well as another voiding cystogram (pee test) in preparation for an appointment with his urologist.

He continues to amaze us in his development. He just LOVES to raise his legs and whack them down on any hard surface. Because of his braces and the bar between them, the noise and vibrations are quite impressive. Noah is also much more aware of his surroundings and enjoys looking at the pictures of a good book as well as grabbing my hair when I hold him.
This journey we are on continues to excite and amaze us. The ups and downs of Fraser Syndrome are many, but the love we feel makes it all worthwhile.

Thursday, May 14, 2009

Pouty Face

What kind of Mother am I??? When Noah is a bit grumpy and he puts on his pouty face, I can't help but smile. He is SO cute when his little lip puckers and his eye looks sad. I should be sympathizing with my son, but I am giggling at his cute little face.

Wednesday, May 13, 2009

Miner Fair

Last Friday, my school put on their annual carnival – The Miner Fair. Our school mascot is the miner and our carnival has an "old timie" theme to it. Noah loved the fishing, panning for gold, and sandy candy. He also loved meeting the parents of my kiddos and the staff I work with. It was a VERY long night, but thanks to Kc, we made it through. You know what they say about too much of a good thing...

Tuesday, May 12, 2009

Three Months

Ok, Ok. I know I am REALLY late posting Noah's three month pictures. But with all the computer problems and me going back to work, it just hasn't gotten posted. As of Noah's last appointment with the pediatrician, his stats were:

Weight: 10 pounds 12 ounces
Length: 23 1/2 inches

Sunday, May 10, 2009

Mama is...

Mama is patient, Mama is kind. Mama does not envy, and does not boast, and is not proud. Mama is not rude and is not self-seeking, Mama is not easily angered, and keeps no record of wrongs. Mama does not delight in evil but rejoices with the truth. Mama always protects, always trusts, always hopes, always perseveres. Mama never fails to love me.


Happy Mother's Day Mama!

Thursday, May 7, 2009

The Hands of God

Today was a day that we all knew would come...yet weren't quite sure how we would handle it. It all started at around noon when Nana met a good friend, Nancy, for lunch at a local cafe. She took Noah along for the ride and they all enjoyed sitting out on the patio. Nana and Nancy were chowing down on their salads while Noah was sitting in his stroller feeding through his NG tube. Nana noticed that he looked uncomfortable – kicking his legs around and waving his arms. He occasionally does this during a feeding because of the pain associated with his acid reflux. Nana reached down to pick him up out of his stroller and noticed that he looked VERY blue. She immediately grabbed him, laid him on the table, and quickly turned on the suction machine thinking that his trach was plugged up with mucus. While attempting to suction Noah, she noticed that his trach was completely out of his trachea – hence the not breathing and turning blue.

While at Children's Hospital, getting our initial training in trach care, we were told that trachs do occasionally come out. You never know when it might happen so you need to be prepared with extra trachs at all times.

Nana immediately put the old trach, which was still strapped around his neck, back in while Nancy called 911. Noah began to breath again, yet was still fairly pale. It was decided that a trip to the pediatrician's office was in order so the three of them headed off. Once at the office, Noah's blood oxygen level was tested and it was not as high as it should be. A decision was made, that for safety's sake, Noah should go to the Children's Hospital ER. Noah had his second trip in an ambulance and Nana got to ride up in front. During the ride, Daddy was called and he jumped in the car and met them in the ER. Many wonderful nurses and doctors took care of Noah and made sure he was doing well. After an x-ray (to check the trach's placement), cuddles from Daddy, a scrub down to get the salad dressing out of his hair, and time to relax and play on the gurney, Noah was deemed OK and discharged. It wasn't until after my students had gone home for the day that Daddy called me and told me what had happened. Nana said that I missed all the excitement while at work.

As I sit here, and reflect upon the day, I am completely amazed by my mother. She was so very calm and collected and did everything right in the moment of crisis. I have always looked up to and admired the awesome woman who has taught me so much. Even during this emergency, she gives thanks and praise to God for steering her through it. She said she knew the hands of God were guiding her every move. I feel I have so much more to learn from her. Thanks Mom for all that you have and all that you will do - I love you!

Tuesday, May 5, 2009

Cousins

Look at the difference a few months can make. Noah is three months and Hunter is one year.
Hunter, Noah and Uncle Adam at the park. Notice how Hunter is trying to touch Noah. After this picture was taken, Hunter gave Noah and Daddy a big "group hug". It was too cute.

Monday, May 4, 2009

Bittersweet

Today was truly a bittersweet day. At a few minutes after 7:00 a.m I dropped Noah off at Nana and Papa's house and headed back to work. I know that Noah will be loved, spoiled, and well taken care of by my parents, but I would be lying if I told you I didn't cry all the way to work. After the initial shock wore off, and after many hugs from sympathetic co-workers, I quickly got back into the swing of things. I was very excited to see all my kiddos and was almost knocked over by all the hugs. We had a fun day together filled with reading, flowers, writing about receiving a million dollars, and treats that Noah sent to all the students. I suppose if it had to happen, today could not have gone any better.

Sunday, May 3, 2009

First Hotel Room

When we traveled to San Francisco for Hunter's birthday party, we stayed in a nearby hotel. Imagine if a Japanese Anime cartoon blew up in a hotel, that is where we slept. This is the "modern mural" along the wall of our room. It was so nice to wake up in the morning with a crying girl surrounded by birds staring at you.Noah's duffel bag is larger than the suitcase that Kc and I share. It's amazing how much "stuff" a little boy needs.
Most people fill the ice bucket up with ice for a cool glass of water or perhaps a nightcap. Noah, on the other hand, keeps some of his medications refrigerated in the ice bucket.
All in all, we had a great first overnight trip to San Francisco. I imagine we'll be doing a lot more traveling in the future, although I don't think our accommodations will be as creative.

Saturday, May 2, 2009

Friday, May 1, 2009

Cousin Hunter's First Birthday Party

Last weekend, we traveled to San Francisco to celebrate Hunter Keola Smith's first birthday. It was a fantastic afternoon filled with loads of sun, tri-tip, laughter and cupcakes. This is Hunter eating his first cupcake. He enjoyed everyone singing to him and LOVED the cake.
Hunter was quite fascinated with Noah and wanted to touch him. He was particularly interested in Noah's trach nose. He wanted to take it off. I can tell that the two cousins will have so much fun when they're a bit older.
Here's the birthday boy and his Mama. Too cute!

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Our Family

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Daddy & Noah

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