Monday, January 3, 2011

New Year, New start

Grace-3 months old-time of due date-5 pounds
This blog for Gracie has been dry for quite a while. Partially due to me being one week behind at the last entry, and going home that following week with Gracie. Something to do with going home for the first time in 3 months WITH Grace made my days very, very, full. From here on, I'm starting over and going to try to keep up with our days and occasionally reflect back on the time I missed.


Reflection: The diagnosis for Grace at Children's Hospital was that of Serious Milk Protein allergies. Not to be confused with normal milk allergies as those are usually lactose intolerance. This is a fairly new thing to diagnose, they said at Children's, because they didn't know the proteins from dairy products went through breast milk. So not only was the milk I was giving her, but also the donated breast milk from an anonymous donor (who very well may have been eating dairy products) was a horrible nightmare for little Grace's digestive system. This is why she would get sick...treated by stopping feeds, get better, then worse...x4). Each time weakening her ability to fight and causing her to get more and more sick. Mother's hunch was when they wanted to start her on breast milk fortifiers, which were cow's milk based, I feared she may not tolerate the milk because of Daddy's allergies when he was a child. Who knew? Mother's intuition was striking the nail on the head. I'm grateful for the Kadlec NICU for not starting the fortifiers and listening. I'm very thankful for the NICU team at Children's Hospital in Seattle for their diligence to find out what was ailing Grace and not being "satisfied" with all the other tests coming back as normal. The digging for more, saved Grace's life. She may not have survived a 5th attempt at starting feeds and failing, falling beyond the scope of help.
  I'm also very appreciative to Ronald McDonald House in Seattle for having a room for me, and occasionally my family. Not just a normal small room, but a room that slept 6-7 people!

This is House A, their newest house. It was enormous inside.
Three floors in the back half with a basement. Beautiful!
This picture was taken when Hubby drove to Seattle to take
Gracie and I home. Love the packed car!!
Awesome amenities! If anyone wants a place to donate to, please consider Ronald McDonald Houses (you know, those little red boxes in McDonald's drive-thru?) Better yet, donate to them directly. 100% of donations go to the houses. They are amazing. Free everything for families with children needing care at Children's Hospital for long periods of time. Laundry, soaps, food pantry, entertainment, haircuts, fun games for children, movies in their movie theater, computer room, DVD rental, video game rental, toys, handmade quilts, cable t.v., wonderful staff and so much more! Such help during a trial-some time for many, many, families!
This is the food pantry...free for all who needed it. This was
only a portion of the room.
This is only the kid's area of the dining hall. We loved sitting
around the tree to eat.
This was my assigned kitchen. There are four kitchens in this
one large kitchen. Then there is a second large kitchen with
four more smaller kitchens just like this one. We were assigned
a two-door cabinet and a fridge for our use. They were all
locked. You can see the white fridges all lined up and the cabinets
above them.
This was part of the basement where there was an indoor padded
playland. (The cleanest playland in America!) Cleaned daily.
This is the game part of the basement. Plus a teen room and weight
lifting room.
This is the theater in the basement. Very cool!
This was my favorite room! I was assigned to clean it daily.
Did someone tell them I loved laundry?? Now, if I could only
have a laundry room like that! I loved putting all my loads
in and everything was done in an hour! 
Daughter and Mommy getting free haircuts the day Gracie was
released from Children's.
They made that time so great for my family when they came to visit. The children all LOVED that place! There were sad times of children passing away (like our neighbor on the third floor, Henry) due to cancer and families being apart because of treatments and various other reasons. It was amazing to meet so many strong women, men and children who were placed in their situations not by any desire to be there, yet how we all stuck together, prayed together and were able to give hugs to comfort during distressing times when words didn't help. We all hate to see our children go through endless tests and painful pokes. It was an incredible, heartbreaking, rejoicing and triumphant, yet humbling time.

First time in her life with no leads to
any monitoring machine! Yay, Gracie!
Getting ready to go "home" to the Ronald
McDonald House for a few days, before
going 3 1/2 hours away to our "real home".
After failing her carseat test, they put her
belly down in a preemie car bed. Whatever
it takes to get her home! She was
sort of buried in blankets.
 Grace came home November 1st, 2010, 8 days shy of her due date. The trial came and went. My family seemed to come through shining. I can't thank people enough who came to aid my family during those three months I was absent. Besides some clothing not going through the wash quite right (I get to go shopping, hehehe) and the girls hair having the "bed head" look (they all received haircuts when I got home), they fared quite well. John was amazing. What husband can take all eight kids, the house, the chores, his career, and even grocery shopping and laundry and rise to the occasion of "single daddying" it? (like my new word?)

Grace at the Ronald McD House, no leads, no parent badge,
no hospital band...she's mine...all mine...whahahahaaaa!!
Sister stayed with mom and helped take care
of little Gracie for two whole weeks in Seattle.
Lucky me! 
In November, our friend, Billie, came over to our house and snapped heartwarming pictures to capture the homecoming of Gracie and the reunification of our family.  http://billiedphotography.com/





I love hearing my children's feet on the hardwood floors
 in our home.
Some day, I fear in the not so distant future, as time
has a funny thing of passing much to
quickly, I'll miss hearing
them running here and there.
The youngest big brother kissing his littlest sister.
To think, when Grace was born, Daddy's wedding band
fit over her entire foot.
Three of Grace's older brothers "checking"
her out.
Does this need words?

Grace was blessed in early December after waiting for John's parents to arrive. They, sadly, didn't make it because of sicknesses and weather. She received a beautiful blessing from her Daddy.

Grace's new hat from Granny-Christmas time.
Grace has to be present at the dinner table. She always cries
when we sit down and start to eat if she isn't there. How does
she know?
First bath at home.
Current: Grace has grown so much! We came home with her weighing just under 5 pounds and as of New Year's Day, she hit 9 pounds! Partially due to her 59% sugar formula, costing $98 per can! Crazy! She has had Thrush in her mouth so nursing has seriously taken a toll. She appears to be healthy, with only problems being her intestines not working as regularly as we would like.
We celebrated the Savior's Birthday by making gifts from the heart. It was a learning experience for all the children and stretched them to think about what their person would like and use. What great gifts they came up with. What fun we had with that. Next year? Another homemade year...it was that fun, except for those who procrastinated!

Daughter made this shadow box for me
Brother made these book holders out of canvas for these
little bookworms!
Sister made brother a photo frame with his name in it
Daddy made daughter a doll bunk bed out of oak
Sister (mommy because Grace is too little) made
brother a picture book to look at
Sister made brother a shadow box frame with pictures from a
trip he took to Florida
Sister made brother a homemade coloring book
Mommy made daughter a puffy "M" in a shadow box for decor
in room
Mommy made daughter a magnetic/cork board for room
Grace, big brother and Santa
Santa and Grace
Our traditions were changed just a tiny bit for me this year with not being able to have dairy or soy for the sake of Grace's allergies...what a sacrifice it was during Christmas! The Scandinavian Rice dinner was made with milk for everyone else and I made mine with Almond Milk. It wasn't as nasty as I thought but I definitely like the milk better. Oh yes, and omitting chocolate from Christmas goodies...torture. Not suggesting anyone do it...it wasn't a pretty picture. And restaurants...where to eat?? Thankfully I have found grilled dishes at Olive Garden and a Filipino restaurant to pad the pain...:) Olive Garden though is very pricey for us and the Filipino restaurant is only $6 per plate. Perfect for date nights with my hubby!

December brought a painful discovery of a toddler boy, Tiggy, (the same age as my Samuel) who lost his life from being crushed under a fallen dresser. My heart has been torn in sorrow for his family. I have never experienced such pain from children's deaths before this year. First little Lucy, a fellow NICU baby with Grace when she was born, passed away from NEC, now Tiggy. How do you comfort parents when things like this happen? What words can ease the pain? What service can bring hope for better days to come when there is a huge gaping hole in their hearts? I've looked deeper into my heart than ever before to try to do something, anything, to help them. My words wouldn't have done anything. This scripture helps me, “As ye are desirous to come into the fold of God, and to be called his people, and are willing to bear one another’s burdens, that they may be light; yea, and are willing to mourn with those that mourn; yea, and comfort those that stand in need of comfort,” (see Mosiah 18:8–9)What talent has Heavenly Father given me to help someone with such grief, such mourning and need of comfort? My love for canning or baking bread? No. Food does help the body, not the soul, but I wasn't at home for Lucy and Nebraska is a long way away to send a bunch of glass jars filled with peaches or homemade bread for Tiggy's family. My love for taking care of children? No. That wouldn't work for these families either. My love for music? Well, I would seriously need to practice before doing anything like that. My newfound love for making cards? Yes, but what else could I do? I love quilting...now there is an idea! Memory quilts to hang on the wall or large ones to wrap some love around the family left behind. I'm so very thankful for this talent, for this love of piecing scraps together and creating something beautiful. Sometimes I feel like my life is a quilt. I have all these pieces scattered in my life, some are made of ugly fabric, others are flowery and beautiful, and there is only One who can pull it all together by organizing them and creating something beautiful, something fit for His kingdom. THAT'S IT! I can take their favorite memories of their children, craft it into pieces fit for a quilt of love, memories and purpose. I can be used as an instrument with Christ's love showing me the way to serve these people who have been placed in my life by various circumstances. I'm so thankful for the opportunity to give of my time and talent for the sheer joy of trying to comfort people who need it so much. After all, I owe it to pass along all the good works we received from others this year, for so many months. I love this scripture, "Teach them to never be weary of good works"Alma 37:34 I'm grateful I've been taught to do good works for His purposes.
Happy New Year Grace! Happy New Year family and Happy New Year to all our friends. It's hard to believe 2010 is gone.

No comments:

Post a Comment