I love my Tubie Baby!

Dear Son,

On March 28, 2014, after careful consideration, we proceeded with a 3rd surgery in less than a year for a G-tube placement.  For several months, you have failed to gain adequate weight due to pain from previous hernias.  As a result from the hernias, you developed poor eating behaviors such as a bottle aversion and acid reflux. You also have fallen behind developmentally, which the doctors and I believe it is due to you not getting enough nourishment. It was very scary when you would gag and throw up your entire meal, refuse your bottle, or not drink enough fluids during the day. Since three doctors encouraged us to get the G-tube, we decided it was the right solution to help you gain some weight in the following months.  Our goal is to get you 10-20% on the growth chart.  The tube hopefully will only need to be in for six months.  I intend for you to eat normal during the day and supplement as needed at night. Additionally if you throw up your meals, we will then supplement too. 

During the early morning of surgery day, you were brave, happy, and full of smiles.   In fact, when the surgical nurse wrapped you up in warm blanket and took you away to the surgery room you didn't scream at all.  After surgery when you woke up in the recovery room, I was there to cuddle you.  You were transferred to the pediatric floor and Dad and I stayed with you until you got discharged from the hospital the next day.  The surgery went a little different than the doctor expected. Due to adhesions from your previous surgeries, the surgeon had to open you up again from your precious chest scar instead of doing a laparoscopy method.

  Remarkably, you healed pretty well after three weeks and seem back to your normal routine of rolling, sitting, wanting to stand. The only complication we had was a little granulation (skin healing near the site) that had to be addressed by the doctor otherwise it has been okay adjusting to the G-tube routine.  I'm happy that you have been tolerating the night feedings well and on the days you struggle (gag and vomit) we feed you through the tube. We named your iv pole "Stanley"! Big sister and little sister are very helpful in assisting Daddy and me with your tube feedings at night. We are happy that you are gaining weight and babbling more. In due time, I bet you will catch up on gross motor skills when you are ready.

Love, Mom and Dad

Student of the Week

On April 17, 2014, little sister was student of the week. It was a total surprise for her!  The teacher's room Mom got her a purple balloon and favorite treat Reese's Peanut Butter Cups. My assignment was to write a paragraph about her and bring a picture of her.  The class had to guess the clues who the mystery person was. Sister knew right away it was her and after they guessed it correctly, little brother and I came in as her special guests. Then the class asked her questions and little brother and I got to eat school lunch with her.  Little sister was very happy and felt so special that day! 

The following paragraph is what I wrote about her:
Savannah Jolene Free was excited to join her family. In fact, she came four weeks early on April 15, 2003.  Savannah is the middle child.  She has an older sister Audrey and little baby brother Zachary.  She also has a small poodle dog named Jagger, which she loves to cuddle, run outside with him, and help feed him.  Savannah is unique because since birth she had one stubborn kidney that didn’t want to grow.  It is a functioning tiny kidney that is only 3 cm long and thankfully she also has a normal growing kidney too.  Since Savannah was a baby she had curly locks and loved to smile.  Her hobbies include the following: listening to music by One Direction and Taylor Swift, reading, helping Mom with her little brother, playing card or board games with her family, and doing anything creative such as drawing, sculpting, and painting.  Her favorite foods are strawberries, Nutella on toast, cheese, and Reese’s Peanut Butter Cups.  Savannah is silly, polite, helpful, kind, and sensitive. The world is a brighter place with Savannah’s beautiful smiling face!  XOXO

Our Beautiful Birthday Girls!

Big sister turned 15 years old on April 5, 2014.  I cannot believe around this time next year she will be driving and dating, ack! Where has the time gone? She is growing up to be an incredible beautiful young woman!  

For big sister's 15th birthday, her friends took her to Denny's for breakfast.  Then she went shopping with a friend to the mall with some birthday cash. Her young woman leaders decorated our front door and gave her a cupcake. She got clothes, a curling iron, Tarzan, bow, iTunes card, ear phones, candy, and body sprays. As a family, we went to Olive Garden for dinner and ate a High School Musical chocolate cake for dessert.  She was very embarrassed when the Olive Garden staff sang Happy Birthday to her.

Little sister turned 11 years old on April 15, 2014. I can hardly believe this is her last year of primary.  Next year she will be a young woman and in six grade, weep! She is becoming a gorgeous young woman! I love her smile and curly long hair!

For little sister's 11th birthday, we made her favorite dinner cheeseburger soup and a yummy cookie dough ice cream cake! She got some clothes, Crazyloom, shoes, candy, iTunes card, belts, pens, bows, Frozen, and Tear Up This Book (a fun tween activity book).  As a family, we watched Frozen with her. Later that week, she and her Daddy went to Nickelcade to play games etc as a late birthday activity!

They both had marvelous birthdays!

March Madness

Not Another Hospital Stay!

On March 10, 2014, little bro went to Primary Children's Hospital in Salt Lake City for a ph probe test. It was an overnight test. We were both miserable staying at the hospital because they woke us up a lot and Little bro hated the probe down his throat. In fact, he pulled the tube out and they put "no no" socks over his hands. The best part of being there was a late night wagon ride and a trip to the playroom on the 3rd floor.  Little bro was very sad while there and when he finally got the tube out he was happy again. His test results came back normal, which means he doesn't need a nissen fundoplication procedure done while he gets a g tube surgically inserted.  I still wonder why he continues to cough, gag, and vomit while eating or drinking... He also continues to struggle to gain weight.  There has to be something going on to cause those symptoms if it's not GERD (acid reflux) unless his Zantac is helping him control the acid from coming up. 

Choir Concerts

Big Sister had her chamber choir concert on March 21, 2014 while little sis had a choir concert on March 27, 2014, which she sang many Disney songs.

Little bro is 10 months old!

 Milestones: He is slowly making progress but not gaining much weight. He is starting to drink from a straw but seems hyper sensitive to certain food textures such as macaroni, cottage cheese, cheese, thicker purees, etc.  I'm hearing a little more babbling sounds, but he is not improving much on gross motor skills yet (no signs of crawling, pulling up to stand, or walking). He is doing well developmentally in cognitive or social skills such as putting blocks in and out of a bucket, clapping, etc. We are working on waving bye bye. He seems timid or shy around strangers and always prefers Mommy over anybody else.

After School Programs

The girls signed up for after school programs. Big Sis volunteered to help out with the track team. She is a track manager who assists the coaches and attends the track meets. As for little sis, she has been enjoying her water coloring art class.

Stacy's Baby Shower

Recently my friend Trishelle and I hosted my niece's baby shower. Since Stacy (my niece) is not a huge fan of silly baby shower games, we did a simple open house baby shower with a theme of tan, blue, and grey. My duties were the following: designing the invitations, decorations, and diaper cake. My friend Trishelle made all the yummy food. She is an incredible cook and artistic with pretty cupcakes!

The Invitation:

Credits: For all my decorations and invitation, I used Kit by Shabby Princess I recolored some of it brown,  and used the following fonts MA Googly Bear, Print Bold OT, and Love ya like a sister.

The Decorations: Banner, diaper cake, door decoration, and cupcake toppers. 

Supplies: card stock papers, ribbons, scissors, paper hole punch, tooth picks, sticks, string, 
The Food Menu: blackberry lime chicken salad, chicken sausage soup, French bread, and cupcakes.

The Yummy Cupcakes and Cupcake Toppers

The Activities: Words for the Wee Hours and Guest Page!

 Words for the Wee Hours also known as late night diapers (I found the idea on Pinterest).

As for the guest page, I recolored a baby floating with balloons using some of my digital scrapbooking kits. I was inspired by something cute I saw on Etsy. Stacy and I thought it would be cute to add to her baby's scrapbook. It was a great turn out and I was happy to host it!

So Lucky to Have You!

Check out big sis as an adorable baby! These are very simple March layouts using a free scrap called Lucky Me kit that I found a couple years ago. It included alpha, elements, and papers.

So Lucky to Have You, 2000

 Credits: Template is by Jacinda and the Lucky Me kit is by Delicious Scraps. I used love ya like a sister and Lady Rene for the fonts.

Cousins, 2000

Credits: Template is by Cindy Schneider and the Lucky Me kit is by Delicious Scraps. I used grumble font.

Our Superhero is Nine Months Old!

Our Cute Superhero!

Can you believe nine months ago little brother joined our family? Time is just ticking away quickly and before we know it he will be a year old!  He has kept us busy night and day!  Unfortunately, he continues to be uncomfortable with acid reflux even with taking 2 ml of Zantac.  For example, he gags, throws up occasionally, coughs a lot after eating or drinking, and is very upset if we miss or late on a dose of his medication. He still "dream feeds" during bottle feedings and probably won't break that habit. We are offering him more fluids from the cup and he is slowly learning to slurp it and suck through a straw... He sill wakes up a lot during the night because he is hungry due to only being able to consume little amounts of food or bottle feeds.  If he doesn't wake up hubby or I dream feed him 1-2 times during the night to get in extra calories...  Three doctors all agree that he needs a feeding tube soon. In a few weeks, we will know when to expect his 3rd surgery for gastric feeding tube placement and possible acid reflux repair. First, he is doing an overnight ph study at Primary Children's Hospital on March 10th to see how bad his reflux is after meals and bottle feedings. Once the doctor determines the results from the test then he will get his surgery scheduled. We admire little brother's smiles and strength though all his medical issues. 

Milestones:He is currently 15 lbs 7 oz (1%), 28 inches long (32%) and 45.5 cm (63%). He is slowly making progress with help from Kids on the Move: physical therapy, occupational therapy, and a child developmental specialist.  Due to little brother feeling uncomfortable being on his tummy, he may not show any signs of crawling soon, which is very discouraging for me. I want him to succeed in all his milestones like a normal baby, but I've got to accept the fact that he will be behind for a while and will catch up in his own time.  For instance, he is not pulling himself up to stand or safely getting on his back from a sitting position instead he arches and falls backs, which we all think it is because of his bad acid reflux... I'm trying to teach him to place his hands on the ground to a crawling position then he can safely roll on his back... He has mastered rolling around all over the place and is eating finger foods. As for playtime, we recently took him to the park. He loved going down the slides with his sisters and flying like a superhero in the playground's swing! We love little bro!

Love One Another

During the week of Valentines Day, some ladies in our neighborhood gave our front door a heart attack!  They also gave our family a box of sugar cookies and kisses!  What a fun surprise!
Heart Attack

I helped little sister make an iPod Valentine's Day box since she was having a contest at school for the best box.
iPod Valentine's Day Box

Credits:  I used the following: iPod template, Sweetie Pie Kit by Shabby Princess and fonts were love ya like a sister, and calibri. Supplies to make it: shipping box, paper, foam paper with sticky back Valentine's embellishments, stick, yarn, scissors, glue gun, and glue stick.
Our Valentine's Flowers, chocolates, and car!

I adore my lovely family!

I hope you had a Happy Valentine's Day too!

Marks and Finlay Syndrome (Scalp, Ear, and Nipple Syndrome)

We recently got a few answers about what is going on with our little one from a pediatric genetic specialist Dr. John Carey at Primary Children's Hospital. He is not certain that little brother's hernias(inguinal, umbilical, and Morgagni diaphragmatic)are related, but he does know without a doubt that my husband, daughter, and son all have genetic characteristics for Mark and Finlay Syndrome also known as scalp, ear, and nipple syndrome.
 They all had similar traits as babies! 

What is Mark and Finlay Syndrome(Scalp, Ear, and Nipple Syndrome)? It is a syndrome related to aplasia cutis congenita, which is a scalp condition. According to Wikipedia, Scalp, Ear, and Nipple Syndrome is described as the following:
The key affected features of this condition are described in its name.
Scalp: There are raised nodules over the posterior aspect of the scalp, covered by scarred non-hair bearing skin.
Ears: The shape of the pinnae is abnormal, with the superior edge of the pinna being turned over more than usual. The size of the tragus, antitragus and lobule may be small.
Nipples: The nipples are absent or rudimentary. The breasts may be small or virtually absent.

My husband has aplasia cutis congenita (a scalp defect), the abnormal but cute ears, and accessory nipples (a second set),which we are not sure if it's related. As for my daughter (little sis), she has the abnormal but darling ears and an underdeveloped kidney, which is common in people with this syndrome. Her kidney stopped growing after birth, but remarkably it is still functioning, which we found out in 2010 after she had a kidney infection. Lastly, little brother like his father has aplasia cutis congenita, abnormal but adorable ears. So far no problems with his nipples, but he had many hernias, which we question is related to this syndrome or another one that we have not identified yet.
Father and Son's scalps

Look at those cute ears!

In the next few months, my husband, daughter, and son will be participating in a future research study in Washington by Dr. Michael J. Bamshed. Yes, that means they will be sharing a swab of their DNA for genetic specialists to analyze!

Marie Curie Wax Museum

Little sister was Marie Curie the polish scientist for her 5th grade historical hero wax museum! Marie discovered radium and polonium. She also helped with making the first X-ray! She was the first woman to receive a noble prize and awards in chemistry and physics! Her research efforts have saved many lives!

A few weeks ago, little Sis went on a "field trip" with us while little brother was getting his upper GI fluoroscopy done at Primary Children's Clinic in Riverton. She got the opportunity to see what an x-ray machine looks like! We are truly grateful for Marie Curie's discoveries! 

Winter Olympics and Adore You Scraps

Since the Winter Olympics are taking place this week, I decided to share my scrap page of when the 2002 Winter Olympics came to Utah. During that time, we went downtown to Provo to check out the ice sculptures, activities, and watched the Olympics on the television afterwards.

Winter Olympics, 2002

Credits: I used "Winter Wonderland" Kit by Shabby Princess and  Mareen's print for the font.

As for a lovely Valentine's Day page, I would like to share how much I adore my two daughters! They have such a sweet relationship as sisters. I am certain they will always look out for each other. 

Adore You, 2009

Credits: This is an old kit by Dani Mogstad called "Crazy Love". I used FO giggles and DJB fonts for the fonts.

Little Man is Eight Months Old!

Wow, eight months has flew by so fast and my little boy is getting so long and lean! It has been a struggle these last several months because of little brother's health issues and at the same time he has been a great blessing in our lives!  Having a baby with so many health problems is very frightening for me especially since I suffer with anxiety. He has definitely taught me patience!  For the last several months, my baby has been on feeding and nap strikes, which is very stressful for a Mother who is trying her best.  There were many dark moments when I was at my wits end or thought I was being pushed to my limit. I said many prayers to get through the most difficult days when my little man refused to drink his bottle (the days he only consumed 10 oz of breast milk in 24 hours, ack).  I recall he had feeding issues since he was two weeks old after we discovered his first hernia because he refused to nurse and didn't drink much bottle. So I have been diligently pumping six times a day so that my baby can benefit from the breast milk.  It has been difficult and time consuming to exclusively pump breast milk! I have suffered with mastitis, clogged ducts, blisters, and cracked sore nipples from the breast pump.  I groan or drift to sleep during my 5:00 AM pumping sessions, so that I can "sleep feed" my little one before he wakes up. Certainly, he has been in a lot of pain during his short precious life, which explains his horrible feeding behaviors.  The doctors and I believe he has developed a conditioned bottle aversion because it hurt so much to drink most of his life. I have been working with a dietitian and feeding therapist to address his feeding issues. We will be following up with a pediatric gastric-intestinal specialist next week. In the mean time, I am happy if he consumes 24 oz of breast milk a day while sleeping! The biggest fear for me is when he starts decreasing the number of naps during the day. Currently he takes three naps a day... As for his gross motor skills, I was referred to Kids on the Move, which is an early intervention program for infants and toddlers with developmental delays. Little brother was recently evaluated by a child developmental therapist. She determined that he needs physical therapy, occupational therapy, and speech therapy. In the next few weeks, we will be very busy with those appointments, which will take place at home, thankfully. I love how Kids on the Move will come to me instead of me going to their clinic. Lastly, we met with a genetic specialist, which I will blog more later. Basically, my husband John, little sister, and little brother have Marks and Finlay Syndrome...
Six Months Old

Milestones: At six months old, little brother was failing to thrive. He was 13 lbs. 5 oz., 26. 1/4 inches long, and 44.5 cm for head circumference. The doctor encouraged me to calorie pack by fortifying my breast milk and introduce other table foods such as fruits and veggies. He hated drinking the fortified breast milk. In fact, he would flat out refuse the bottle if he tasted it!  So I just went back to regular breast milk and fortified his milk with his solids, which he didn't notice. Luckily, he likes the stage one veggies and fruits mixed in with cereal, which helps him receive some added nutrition in his diet.   As for his gross motor skills, he was sat up with assistance, banged toys together, and laughed when we threw a cup. Sadly, he stopped rolling over around 4.5 months, which I thought was due to wanting to do other things. After his second hernia surgery, a doctor in the hospital told me to have him checked out because a normal baby just won't stop rolling over especially after mastering the skill.  The doctors and I believe he was weak and uncomfortable from his diaphragmatic hernia, which I don't blame him. I cannot imagine how much pain he has been in for the last several months dealing with hernia pressure on his vital organs!
Seven Months Old
Milestones: He is slowly gaining weight and barely below 0 on the growth weight chart for his age. He was 14 lbs. and 7 oz. on December 26, 2013. He continues to eat fruits, veggies, and cereals. To our surprise, he is not a huge fan of pears and had a reaction to berries. His diet includes the following: custards, sweet potatoes, and avocados to help him gain weight.  The doctor prescribed him acid reflux medicine Zantac, which seems to help with the volume of feedings, however, he still continues to consume most of his liquids during a sleep state. He will sit up for a few minutes and then fall over due to weak core muscles.  At a post surgery check up appointment from our pediatrician Dr. Cox, we decided to get many other specialists involved such as a genetics, GI doctor, feeding therapist, Kids on the move, etc.
Eight Months Old

Milestones: On January 23, 2013, he was 14 lbs. 15 oz and 1% on the growth weight chart. He still struggles with his bottle feedings, however, he will drink a couple ounces while awake on his own. The doctor recommended that I fortify his milk again, which he is doing okay with it. I am crossing my fingers that he will continue to drink his milk with formula.  Every little bit that helps increase his calorie intake will make a huge difference!  Our happy little boy is rolling over again, yay!  Once he figured out it no longer hurts to roll over he is moving all over the place!  He still hates tummy time though, which we need to work on with physical therapy. Little brother isn't sitting up unsupported very well because he arches his back and falls over, which can be very scary or dangerous.  In due time, he will master sitting up. I started some simple sign language to help with his communication. As for fine motor skills, he is starting to grasp at small objects and clap his hands. Slowly, he is making some progress and definitely makes us smile every single day. We love our little man!

Princess School: Daddy Daughter Date

Princess and King Free

The beautiful invitation was made by little sister and her activity day leaders:

Once upon a time, little sister had a daddy date on September 27, 2013. It was held at a nearby church, which our daughter's activity day leaders put together. First, each princess were formally introduced to their "king" with a paragraph about their hobbies and interests while wearing a crown, tutu skirt, and sash, which they made during previous activity days.

On each table there were royal King and Princess name cards.

 They ate a lovely dinner (coconut chicken, mashed potatoes, beans, rolls). As for dessert, they ate pretty cupcakes and rainbow jello.  For the activities, they did Princess School, which included the following subjects:  fencing balloon pop, dancing, making caramel apples, building a castle out of gigantic Legos, and the Kings had to walk in Princesses shoes (large shoe sizes but nothing fit King Free).  It was evident that they had a marvelous time since they came home "happily ever after" with smiles on their faces! 
  What a fun enchanting activity for Dads and daughters, which they will never forget!

December 2013 was a busy month!

December 2013 was also an eventful and stressful month for our household. We had several events and doctor appointments going on each week such as state report homework, Festival of Trees, choir concerts, young woman activities, little brother stayed at the hospital, followed up with doctor appointments, big sis got her braces off, and celebrated baby's first Christmas.  I cannot believe how fast this month went by since we were extremely busy!

State Report
At the last minute, hubby and I helped complete little sister's state report (we were up most the night, ugh). She did the state of Illinois for her report and hopefully learned her lesson to never procrastinate ever again! Around the same time, we had horrible internet issues, which finally got resolved three weeks later, grrrr! We actually had to go to the public library since we couldn't research at home.

Festival of Trees
For Big sister's foods class at school, she went on a field trip to see the Festival of Trees in Salt Lake City. Her favorite Christmas tree was the Audrey Hepburn Breakfast at Tiffany's and Toy Story display.

Christmas Choir Concerts

Big sis had a chamber choir concert at school while little sis performed at a local mall, nursing home, and her elementary school. According to Dad, they both did a great job! I wasn't able to attend due to little brother not feeling well and went to the hospital. 

Temple Square

For Young Woman activities, big Sis went to Salt Lake City to see the Christmas lights at Temple Square and went ice skating at Seven Peaks.

Little Bro's Second Hernia Surgery

At 3:00 AM on December 11, 2013, Baby brother was struggling to breathe and we noticed a very loud rattle in his chest. We took him to the ER at American Fork Hospital, which he was admitted for bronchiolitis, swine flu, and Morgagni diaphragmatic hernia. He had to be life flight via helicopter to Utah Valley Hospital so that he could be treated by several pediatric specialists.  The next day he struggled to breathe on high flow oxygen maxed out while fighting his two viruses and the doctors feared he was too weak for surgery.  He had an x-ray on Thursday afternoon that showed that his hernia was larger, shifting his heart to the right, putting pressure on his trachea, and stomach. At that point, most the doctors feared he would crash eventually if he didn't get surgery right away because he was literally using all his energy to breathe (it was very scary to watch his chest rise and fall with labored breathing). So his team of doctors decided it was time to repair his hernia even though it was extremely risky due to his low immune system. To our surprise, little bro was remarkable during surgery and had zero complications! The doctor pulled his intestines out of his chest and repaired the hole in his diaphragm, which was under his liver.  Unexpectedly, he recovered fully from surgery and his viruses after a few days.  His pain was managed well, he ate up to four ounces of bottle, and he voided many diapers. He was discharged from the hospital on Monday December 15, 2013. What a strong little man and amazingly, I remained calm during this whole experience due to our baby receiving two healing priesthood blessings from my husband and family members. I knew he was very sick the day before he went to the hospital.  I had an emotional melt down and looked at my precious son in the eyes and said, "You fight for your life!" My faith and many prayers kept me strong!  On December 26 and 27, 2013, he met with his surgeon and pediatrician. Little bro will need to follow up with a feeding therapist, physical therapist, gastric intestinal specialist, and genetic specialist. He also got a prescription for acid reflux, which hopefully will improve his bottle feedings.  It is still unknown what caused his birth defects (four hernias, wow) or if he has some sort of syndrome, but we are hopeful he will continue to live a normal and happy life with help from many medical professionals. Sadly, he starting to fall behind on some major milestones and needs help gaining weight.  He unfortunately has a "conditioned" bottle aversion (I think when he drinks the bottle he is afraid of pain or may have bad acid reflux since he gags, spits ups, and coughs a lot after consuming his bottle) So we will address his feeding issues by a feeding therapist. As for his weak muscles, he many need help from a physical therapist to help him to accomplish his major gross motor skills such as rolling over and sitting up again, and future ones such as crawling, standing, and walking.  He will be evaluated by Kids on the Move and they may have other services available to him.  I am confident he will catch up on milestones and gain weight in the near future! 

No More Braces
On December 19, 2013, big sister finally got her braces off. Look at that gorgeous smile! She has to wear a clear retainer for the next six months!  That smile is worth every dime! She is very pretty!

No Place Like Home for the Holidays
One of our friends sent this Santa letter photograph to us, which they saw at a local elementary school. It said, "Dear Santa, Can you please give Zachary Free a good Christmas. He is very sick and in the hospital. Also I ask you to help him have a Merry Christmas." Isn't that adorable? We are so grateful for the love and service that our friends, family, and neighbors did for us during our time of need!

Baby's First Christmas

Having little brother home for Christmas was the greatest gift of all for us since he was expected to stay at the hospital for a couple weeks. It was a great blessing that he healed very quickly because of many prayers, positive thoughts, and well wishes. We had a peaceful and lazy Christmas day. My father in-law stopped by to visit, which was strange not having my mother in-law here for Christmas. We enjoyed spending time with him. Baby brother loved his new toys and clothes. The girls enjoyed spending family time watching new Disney movies, eating ham and cheesy potatoes leftovers, and drinking hot chocolate, etc.  

Bring on 2014!!!

I recall my husband lost his job earlier during the year and four months later was blessed with a great job opportunity. In June 2012, I suffered a miscarriage while this year we were blessed with a strong baby boy that joined our family in May.  Little brother has gone through two major surgeries and was such a trooper during both of them. My mother in-law fought cancer for six months and passed away peacefully in November. She is now our guardian angel who will watch over us always. After a year of challenges, sorrows, and triumphs, we can truly see that the Lord has blessed us in our lives. We are looking forward to seeing what 2014 adventures will bring us! Happy New Year!!!