Baby Christina's Recent Surgeries: Eyes & G-tube

About a month ago Christina had her right eye sutured closed to allow the cornea to heal. Her right eye had been damaged due to glaucoma that enlarged her already large eye. Also the damage was increased by dryness and getting scratched because she cannot close that eye and it bulges out of her eye socket. These stitches have since come out and the cornea has healed with some scarring. Her doctor wants to more permanently keep that eye closed to prevent further damage but because of her most recent g-tube (gastrostomy tube) surgery that didn't go well any further eye surgeries are going to be postponed until she gets bigger and more stable. 

A week before Christmas Christina had surgery to insert the g-tube to aid in feeding to help her gain weight. We put off having a feeding tube until it was her last option. She continued to lose weight over a period of a couple weeks and after trying all sorts of methods to increase her food intake she was then categorized as "failure to thrive" and went in for surgery. The surgery its self went well with no issues, but when they tried to wake her up from anesthesia she went into respiratory arrest and had to be re-sedated and re-intubated to make her breathe and she was sent to the pediatric ICU.

Within 12 hours she was doing better and she was put on oxygen.

Her room overlooked where the helicopters land at the trauma center for the hospital! It was pretty cool to see them come and go all day. Too bad James wasn't allow in the PICU to see it!

After a couple days in the ICU she was stable and off oxygen and sent to the normal pediatric floor of the hospital. At this point I was pulling my hair out trying to get the doctors to let her come home! It felt like the NICU all over again! They seemed terrified of her with all of her conditions and issues which I think forced them to observe her for so long but at the same time I think they were happy she had a competent mother that wanted to care for her at home without all their "help"! But she did get to come home on Christmas Eve and everyone was much happier to have sweet baby girl home!

Here she is with the feeding tube setup. As she gets older she won't have this strange contraption but for the first couple months this is the "official" way to use it. They actually just use a rubber band and a paperclip and hang it on a string. It is so makeshift and I still cannot believe that this is how they do this and of course it comes apart and makes a mess! You would think there is a market for this to invent something better! But basically you just pour into that tube the food she doesn't intake orally. And I'm serious about inventing something more effective for the feeding! Okay enough of my rant! 

But we are adjusting to the feeding tube. It is not my favorite thing in the world and it seems to make Christina more fussy than she was before, but I realize it was necessary. She has put on some weight since the surgery but still not nearly as much as the doctors want, but I feel that this may always be the case for her!

Christmas 2013

Merry Christmas to all! We hope everyone enjoys this Christmas season and carries it on throughout the year. Wishing you peace and joy!

And an angel of the Lord suddenly stood before them, and the glory of the Lord shone around them; and they were terribly frightened. And the angel said to them, "Do not be afraid; for behold, I bring you good news of a great joy which shall be for all the people; for today in the city of David there has been born for you a Savior, who is Christ the Lord. "And this will be a sign for you: you will find a baby wrapped in cloths, and lying in a manger." Luke 2: 9-12

(James really is a goof and he was in all the shots we took! But I always prefer more authentic photos that capture life as it actually is!)

My BYU Admission Essay

I thought I would share this essay I wrote when I was 17. This is what I submitted to BYU as part of the admission process where they ask you to tell something unique about you. It's interesting to see my thoughts 8 long years ago to where my life has taken me. 

My mom recalls the day like it was yesterday. The phone rang. “Mrs. VanDerwerken, I’ve got good news and bad news. First, the good news, you are having a healthy daughter. Unfortunately, she’s a carrier.” My mom slumped to the floor, crying tears of joy, mixed with a little sorrow.

I am child number four, the first daughter. I have a balanced translocation of chromosomes #2 and #13. That is what makes me a “carrier”. A big chunk of my #2 chromosome is translocated and sitting on the end of my #13 chromosome. Except for this huge aberration of every single cell of my body, I am otherwise totally and completely normal. The challenge of a balanced translocation lies ahead: I have a 50/50 chance with every pregnancy of having a severely handicapped child. My parents have had one goal in raising me---to raise a daughter equal to the challenge of reproductive Russian roulette. 

I know what it is like to raise a severely handicapped child. My brother James died six years ago when he was 19. James had Trisomy 2q—he got two normal #2 chromosomes and the dreaded #13 with the extra #2 on the end. James was profoundly retarded with numerous physical problems. He lived at home with us. He was completely dependent on us for everything. I learned blessings come in unexpected ways.

When I was nine my parents adopted a newborn baby girl from the Marshall Islands. I finally had a sister. It’s been a blessing to see that there is more than one way to create a family. 

As a young child in Primary I was taught to choose the right. This is a great place to start, but there is more to moral decision making than choosing between right and wrong. The harder decisions are choosing between competing goods, recognizing that any choice has costs and consequences. I guess everyone figures this out eventually, but my awareness has come earlier than most because of my genetic inheritance. The BYU community will benefit from my ability to bring this much needed insight into its conversations.

James-isms & James Lately

Since James' vocabulary and speech have really taken off lately, he is never quiet and is very chatty! Much like his mother! And with his endless chatter he has said some funny things. 

 Here are some highlights that I could remember (with some context where needed!): 

“You’re a person.” - James said this out of the blue to an adult family friend.

“I like those in my mouth” - I was baking chocolate and butterscotch chip cookies and he saw the butterscotch chips bag on the counter.

"Look at me, I'm handsome!" - No context needed here!

“Mom! Hurry, go kiss daddy! He’s leaving!” - Every morning before Brian goes to work, Brian and I have a mini-make out session and Brian was about to leave for work and we hadn't kissed, or at least James didn't think we had!

"Mom, a both-of-us showie, okay?" - This is said when I'm going to put on a show to watch that is for me and isn't animated. James suggests that we watch one that has real people, but is family or kids oriented as a compromise. E.g. Stuart Little or Mr. Bean.

"Royals...royals" - He loves this song, Royals by Lorde and totally sings along!

Here's some other stuff James has been up to!

I went upstairs for about five minutes and came downstairs to this! How did he even know how to set it up?! It must be part of kids' genetic makeup!

Playing trains. I always have to help set it up, but then he'll play for a long while! 

Loving his sister. Though she seemed not to love it as much! 

Oh yeah. And this happened. I heard James crying in his room but I couldn't get him to come out. When he finally did, this is what I saw! He'd put on sister's shirt and was crying trying to get it off but it was stuck and digging into his arm pits! Oh, I laugh every time I look at this picture!

Christmastime Fun

Today after church we got in the Christmas mood and made a gingerbread house. If only I was super domestic and made everything from scratch, but it came from Wal-mart and James was none the wiser. Maybe next year. James was excited all day to make his "ninja house" as he liked to call it. I guess ninja and ginger aren't completely different sounding... 

Brian was in charge of the major construction of the house and then I helped with the decorating. I was taking my job seriously, by the look on my face! It's funny because I have a scowling resting face all the time. I'll be doing something, anything, and Brian is often worried that I'm mad because of my expression, but it's just my happily, brooding brow! 

Updates on both Christinas

Despite Thanksgiving being wonderful it has been a difficult week. Christina's health is not doing well. She is now losing weight and she will barely eat. In a couple weeks she will be having surgery to put in a gastro feeding tube into her abdomen. Before she has this surgery she needs a test done to make sure nothing is anatomically wrong with her stomach and/or intestines that have been preventing her from eating or gaining weight. 

In addition to her weight and eating issues, she is still having eye problems. She will need to have another eye surgery this week to suture her eye nearly closed. Christina's right eye still has a large abrasion on the cornea and scar tissue is developing. Because she cannot close her eye and maybe partly due to her lack of calories, this wound is not healing and it just continues to get worse and worse and I think causes her pain. We use lots of eye lubrication and have tried taping her eye closed but these methods have not worked to heal her eye. So the next step in preserving her eye is to force it closed. 

All of this may sound dismal and depressing and at times it is. But we are so grateful for modern medicine to help our little girl. We have such a wonderful team of doctors that truly care about helping Christina and listen to my opinions and hopes for her. 

People frequently ask me how I am doing through all of this and I can honestly say I am doing well. I find happiness in the day to day. I love being Christina and James' mom. I always wanted to be a mother. Most days we keep busy with normal things like getting dressed, running errands, getting a Diet Coke from Circle K, making dinner, cleaning the house, watching an episode of Parks & Rec, etc. Our normal life routines carry on and probably keep me sane with some doctor visits thrown in. I also like to find humor in things and joke around. It's not that I take the situation lightly, I would just rather be happy than sad. I often think of President Gordon B. Hinckley when he said, "In all of living, have much fun and laughter. Life is to be enjoyed, not just endured."

Certainly when I get a moment of alone time my thoughts wonder and my emotions are more raw, but in a healing way rather than in a self-pity way. We have great friends and family. I have an amazing husband who loves and supports me and I still can't believe married me! And most importantly I find comfort in the Savior and his love for me and his love for baby Christina. I rely on God and I know He hears and answers my prayers. 

Thanksgiving at Grandma & Grandpa's

For Thanksgiving we went to California to visit Brian's family. The whole drive there James was convinced that we were driving to the airport and not California. He thinks you only can use luggage if you are going on an airplane. 

James had such a blast! Over the weekend grandpa was working all around the house and let James "help" him with all the tasks. James thought it was terrific! 

They used the lawn mower.

And they used a saw (and chainsaw!) to cut down tree limbs.

James spent the whole time following grandpa around the house from project to project and was in little boy heaven! At one point Brian and grandpa tried to ditch James to get something done and they told James. "We'll be back in a minute." To which James retorted, "I wanna  be back in a minute!" They didn't fool him!

I guess James tired grandpa out!

It was a fun long weekend with lots of family and yummy food. A great way to kick of the holiday season! We really do have so much to be grateful for! 

Plus, James got to take home an old school Teenage Mutant Ninja Turtle lunch box that Brian used as a kid!

Trouble in the Freezer

Today I woke up to this disaster in my freezer! Brian had put a soda can in the ice machine and forgot about it. And this was not his first offense. I would say every ten times he does this, he forgets one time. I'm no statistician, but those seem like pretty bad odds to me!  

What I mess! I made him clean it up after work today. Do you think I should make it one of the Nelson Family Rules? I didn't make one last year or this year yet. 

Christina at three months old

Today baby Christina is three months old. Time seems to be flying!

Christina at three months:

• She loves to be held.
• She loves to be touched---I know all babies do,  but she seems to especially like and respond to touch. She seems to like her hands, head and face touched. She loves when I use a cradle cap brush on her head (And her cradle cap is ferocious! Any tips on getting that controlled are welcome!)
• She enjoys bath time and usually will wake up during her baths.
• She responds and calms down to my (loud) voice.
• She prefers me over other people.
• Shes loves to be in her Babybjorn.
• She still hates sunshine, it is painful for her eyes.
• She still loves to be tightly swaddled. I have learned how to swaddle quite well. (I never learned with James because he hated being swaddled literally from day one.)
• She does wonderfully on outings and enjoys being in the car.
• She doesn’t seem to mind all of James’ kisses and hugs and touching (I think she would cry if she did). It's likely good stimulation for her.
• Her crying frequency is increasing (which in her case is a good thing). Before she hardly ever cried but now she shows some desires or discomforts and expresses it through crying. She generally cries because she wants to be held. She rarely cries over hunger. As long as she is held she would just happily hang out like that forever and is fine to never eat.
• She doesn’t coo or socially smile or look at you. Sometimes when she is sleeping she will smile and actually laugh and her body will shake like she is laughing, but she’s never smiled or laughed awake.
• She prefers breast milk and nursing over bottles and formula (big surprise, not) but due to her lack of weight gain, I cannot breastfeed her for nutrition and pumping is ineffective at this point. Sorry la leche league.
• Her right eye is still a mess. Her cornea is scratched and is having difficulty healing because she’s unable to close her eyes which causes dryness and leads to abrasions.
• She hasn’t gained any weight in two weeks. She only weighs 7 lbs, 10 oz. and is 21.5 in. long. Her lack of weight gain is due to a number of possible factors. She will not eat an increase in volume (she’ll clench her jaw or just sit there with the nipple in her mouth and not suck) so we increase the caloric value for the same volume, which she’s not fond of either. Also, due to her trisomy, her metabolic rate is such that she is just small, but no growth is still worrisome even with that perspective. Lastly, it is likely that her brain just doesn’t work right, meaning she doesn’t know how to grow, she doesn’t recognize hunger, nor care about eating to facilitate growth. She has a poor suck-swallow reflex. A feeding tube may still be in her future, but for her and our family, we want that to be a last resort measure.
• Her nicknames are: baby, sister, baby sister, sissy, baby Christina, Tia (Brian hates Tia though), sissy Christina, and other similar variations!
• Her skin is so soft and the top of her head smells so yummy. I love her milk breath and love to give her kisses.
• She seems happy and content and she is very loved.

My Big Baker

James loves to be my helper whenever I cook dinner or bake a dessert. It usually makes me extra stressed to have him "helping", especially during the witching hour, when blood sugar is low and fatigue is high! But after dinner everyone was feeling happy and content! So we got to baking pumpkin cookies. I love baking in the fall and winter, especially when the air starts to cool off. It makes the house all cozy and homey. 

What a goof!

Bright eyed and bushy tailed

Most of the day Christina is sleepy and placid, more so than other newborns. But for about an hour every night, she's awake --- I mean really awake!

I love how wide she opens her eyes! And she is even holding her head up on her own --- which is a new thing for her! What a cutie-pie!

Mom! I'm doing man work!

Since Brian had today off from work, he and James went to Home Depot and did some projects around the house. I went out with baby Christina and when I got home I saw James hard at work. James was so excited to show me what he was doing. He kept saying, "Mom! I'm doing man work!"  James is such a Brian-mini-me. I can't believe how much he loves to do what daddy does! I do love my manly men!

Christina's Blessing Day

This past Sunday was Christina's blessing day. We had lots of family and friends come and celebrate our sweet Christina and her blessing day. 

Her bonnet was a bonnet that I wore as a baby. Her blessing dress was given to me by my dear Auntie Arla who bought it for me for when I had a baby girl! (She got it super on sale at the Talbot's Kids store closing when I was still in high school!)

Her little feet are so tiny in newborn socks!

Her blessing was beautiful and wonderful. In the Mormon Church, a baby blessing is performed to give a baby an official name and to give a blessing for the child's spiritual and physical welfare. My husband, Brian, blessed Christina. Her blessing was different than most baby blessings because of her own unique challenges. Sometimes when I ponder her life and what it will be, I feel sorrow because I know she will not marry and she will not have children. She will always be dependent on others for her care. Her life will be simple. Even though I sometimes feel a deep sadness about this, I know this life is just a moment in her existence. I know Heavenly Father loves her and wants her to be happy. Because Christ died on the cross and was resurrected, I know Christina's physical challenges are only part of this life and that she will eventually receive a perfected body. 

This was her blessing (As much as I could remember):

Our Heavenly Father, by the power of the Holy Melchizedek Priesthood which we hold, and in the name of Jesus Christ, we take this infant in our arms to give her a name and a blessing. The name which she will be known on the records of the church and throughout her life is Christina Lois Nelson.

Christina, firstly, remember that the name you bear is a heritage of wonderful, righteous women.

Your coming to this earth was a miracle.

I bless you to have patience. Have patience to endure trials. Have patience to those close to you. Have patience with your broken body.

Christina, I bless you to find joy in living. Strive to become a righteous woman.

In this lifetime it is likely you will not be baptized or receive your endowment or marry in the temple. But because of Christ’s Atonement you will be able to receive all these blessings. Prepare yourself for the day that you will enter into these covenants.

And lastly, I bless you to have charity, which is the pure love of Christ. Look to your Savior as the ultimate example.

And this we do in the name of Jesus Christ, Amen.