Monday, May 19, 2014

Consider the lilies . . .

Yesterday afternoon, as I was cleaning up yet another mess of throw up and feeling sorry for myself and Elsie, I paused as one of my favorite songs came on the radio.

Consider the lilies of the field,
How they grow, how they grow.
Consider the birds in the sky,
How they fly, how they fly.

He clothes the lilies of the field.
He feeds the birds in the sky.
And He will feed those who trust Him,
And guide them with His eye.

Consider the sheep of His fold,
How they follow where He leads.
Though the path may wind across the mountains,
He knows the meadows where they feed.

He clothes the lilies of the field.
He feeds the birds in the sky,
And He will feed those who trust Him,
And guide them with His eye.

Consider the sweet, tender children
Who must suffer on this earth.
The pains of all of them He carried
From the day of His birth.

He clothes the lilies of the field,
He feeds the lambs in His fold,
And He will heal those who trust Him,
And make their hearts as gold.

He clothes the lilies of the field,
He feeds the lambs in His fold,
And He will heal those who trust Him,
And make their hearts as gold.

I've always loved this song, and it never fails to bring a tear to my eye, especially the part about the "sweet tender children". But this time, I noticed a specific word that I've never noticed in the song before, and it hit a very tender spot in my heart. It says that He will "feed" those who trust Him. He will feed us, if we trust him. 

Feeding has by far been the biggest challenge for Elsie. There have been times when I've cried in frustration when she won't eat, when I've had to hand the vomit-covered baby to Clayton and go hide myself in the bathroom until I could control my emotions, or when I've wanted to throw a spoon across the room because Elsie has refused to let it near her mouth. I just cannot mentally understand her fear of eating. I mean, I can understand, but I guess the word I'm looking for is empathize. I cannot empathize with her fear of eating. I love eating; in fact, I love it too much, and it frustrates me to no end that something so seemingly natural and easy should be so difficult. It frustrates me that her progress is always "one step forward, two steps backward." She'll be doing so well with oral eating practice, and then catch a cold or cut a tooth, and then oral eating shuts down completely and we have to start all over. Or she'll practice a new skill at therapy and do really well, and I'll get so excited, only for her to refuse to do the same skill at home with me.  

And then there's the puking. Elsie throws up at least once almost every single day. Things that can cause vomit include but are not limited to: feeding her too quickly, feeding her too much, Elsie choking/gagging on something in her mouth while she is being fed or immediately after she has been fed, Elsie crying too hard while she is being fed or immediately after she has been fed, coughing too hard, gagging on mucous drainage in her throat, and several other reasons, one of which also being "I have no idea why she threw up, but she did." All of these things are exacerbated times ten when she has a cold or isn't feeling well. It's extremely frustrating and disappointing to work so hard to feed her and help her to gain weight, only to have all of our work undone by vomiting up the food. 

Luckily, Elsie is currently in good health, knock on wood, and the puking has been less intense lately. It still happens, but isn't as bad as it has been. Anyway, the point of all my complaining is that feeding issues are very sensitive to me. It is a huge challenge that we deal with every day. It's getting better, and will slowly improve with time, but it's very hard.

When I heard the lyrics of that song yesterday, it struck me hard that He will feed us. What exactly does that mean? Is Jesus going to come to my kitchen with a spoon and jar of baby food? No. But I thought of the story in the New Testament when He feeds the multitudes with a few fishes and loaves of bread. I thought of Him eating the Passover meal with the apostles and instituting the sacrament. I thought of Him eating with the disciples at the home of Mary and Martha, and his gentle admonishment to Martha. There's so many stories of Christ's life and ministry, but not one where He commands a baby with an eating disorder to stop throwing up and start eating with her mouth. But wait. There were times when He healed the sick. He healed the lepers. He raised Lazarus from the dead. All of these miraculous deeds and so much more were brought to pass by His power of the priesthood, and by faith. 

I know that someday Elsie won't need her feeding tube anymore, but until that day, I need to have faith and trust that it will all be ok. I need to have faith in myself that I am doing the best that I can to nurture my child. I need to have faith in Elsie and help her to believe in herself as well. She can do this. She can overcome this trial, after all the huge obstacles so far in her short life. It might take longer than I would like, but that's ok, and I need to believe that it is ok. I need to put my trust in Him. He understands what we're going through, and He is always there for us to turn to. 

He will feed those who trust him ... He will heal those who trust him.

Monday, May 5, 2014

16 months!

Standing up like a pro!
April is usually one of my favorite months of the year, and it was still pretty great, but I'm glad it's over. Due to Elsie and Evje catching a series of colds/infections, April was full of boogers, sneezing "snot rockets" (you know what I mean: when sneezing causes boogers to shoot out of the nose all the way down to the chin), sleepless nights, and puke. Lots and lots of puke.

Elsie's gag reflex is so very sensitive that when she has "mucus" drainage, aka boogers going down her throat, it makes her gag and then vomit All The Time. Also, when she gets phlegm into her throat/chest, making her cough, it makes her gag and then vomit All The Time. I had a random moment of contemplation, when I was trying to put myself in her situation. I thought of when I was pregnant and as most pregnant ladies have experienced, your gag reflex at this time is usually pretty sensitive. I know there were several times during my pregnancies that I coughed or even sneezed hard enough to make myself gag. Elsie's gag reflex is on super high alert All The Time, so when she has a respiratory infection, aka cold, she gags even more than normal. This means that if she is gagging, coughing, or sneezing right after or during a meal, she'll throw up. It's inevitable. And during her continuous night-time feedings, when her throat gets dry and she starts coughing, you know what that means ... more puke.

When I'm getting pressure on every side for Elsie to gain weight, throwing up is not what we want. It has been very stressful and frustrating, to say the least. At times I've felt like giving up, or at least like throwing the feeding syringe across the room. I've been trying my hardest to feed her high-calorie, nutritious food, but I can't stop the vomiting. At the same time, I feel so bad for poor Elsie, puking all the time. I know that's not fun or comfortable for her. She has understandably had a decreased interest in oral eating, and I can't say that I blame her.

Anyway, enough complaining. Just know that it sucked. And that most of mine and Elsie's clothes and her sheets now have vomit stains. She is getting better, so we're back to normal amounts of vomit. Ha ha.

In between the puking sessions, April was pretty great! Even though it was a bit early, we declared ourselves free of RSV isolation, and brought Elsie with us wherever we went. We went on a trip to the zoo, to the local indoor swimming pool, and had a picnic in the canyon. We celebrated Easter, and enjoyed playing at the park and outside in the yard. Elsie was also able to come to church with us for the first time since October, which was pretty darn exciting. It's so nice for all of us to be together as a family wherever we go. We are complete.

Developmentally, Elsie is still moving right along and is where she should be. She's still cruising on the furniture and pulling herself up to stand. No independent steps yet, but she'll get there. Elsie is very cautious by nature and is taking her time with this skill until she knows she can do it right. She loves playing with her sister, and snuggling with mom and dad. AND she finally got her first tooth! One cute little toothie, right in the middle of her mouth.

Can't wait to see what this next month will bring!

Here's a peek at that little toothie

Always has something in her mouth, except food ...

We just love this happy little face!