Friday, March 21, 2008

Weight-y issues

It's amazing when we get to see God bring about great blessing from what we think could only be a negative situation. We got to see God work this way when last spring we began finding blood in Luke's stool. After pediatrician and Emergency Room visits, we finally were referred to a G.I. doctor at Mary Bridge. Of course, with a heart baby who has an NG feeding tube, doctors tended to overlook the simple answer. After trying numerous different formulas, replacing his NG tube, getting blood drawn and tested, etc. our G.I. doctor took about two seconds to diagnose Luke with a milk protein sensitivity. I stopped breast-feeding the next day and we started Luke on a hypoallergenic, elemental formula and we never saw blood in his stool again!

Seeing blood in your child's stool is very disconcerting and even though we were nervous that Luke would not outgrow this sensitivity, we soon saw God's purpose in this benign diagnosis.

The blessings of Luke's milk allergy:
  • It forced him to learn how to take a bottle. I had already been thinking about stopping breast-feeding Luke. As much as I wanted to give him breastmilk, breast-feeding was not the relaxing, enjoyable experience for us as it should be. I felt pressure to make sure he was taking enough from me, which led me to watch the clock and feel anxiety if he pulled off before I thought he was ready. So, with this new diagnosis, I would have had to go on a dairy-free diet and at that point, I thought it was better for everyone for him to drink from a bottle.
  • Through the G.I. clinic, we had a wonderful resource if and when Luke needed his NG tube replaced. No longer did we have to go to the E.R. if he pulled it out (which needless to say was a nightmare), but could simply go to the Mary Bridge Health Center office and have our wonderful nurse do it quickly and in a much less stressful environment.
  • Our G.I. doctor works hand-in-hand with a dietician and assigned one to Luke's case. This may have been the biggest blessing of all. Judy Tuider has truly been an exceptional guide in helping us to help Luke keep growing.
All that to say, we have seen Judy either weekly, bi-weekly or monthly since we met her last May. She acts not only as Luke's dietician, but as my counselor too! She has kept my anxiety over Luke's growth in check and given our family countless pieces of advice on how to make eating as enjoyable as possible for Luke. She believes that is our number one priority with Luke.

Two weeks ago, we saw Luke drop several ounces for the first time since last spring. The more people I talk to, the more I am understanding that this drop is not a symptom of Luke's heart function changing (which is my big fear) but simply of his increased mobility and his decrease in high-calorie formula (he only takes one or two small bottles per day — the rest is his milk + Pediasure mix in a sippy-cup).

We saw Judy again this morning for a follow-up weight check and Luke didn't gain any weight. Roger has already reminded me several times that this also means he didn't lose any in the past two weeks. To be honest, I was pretty discouraged. It is a huge challenge for me to relax about Luke's weight and trust that his body is perfectly designed to know how much food he needs. I definitely need the Lord's strength and wisdom in how to give Luke the resources to grow, but with a relaxed spirit. Whew, that is tough! Rog and I have seen more than once that the days when we feel more tense about his eating, he eats less and resists our attempts at feeding him more.

So, the new plan is to continue as we are, giving him 3 meals and 2 snacks per day of calorie-dense foods (avocado's, cheese, meats cooked in olive oil, olives, etc.) and mixing Pediasure with a small amount of whole milk. He can have this milk mixture with meals and in between. Judy is also prescribing for us another formula called "Just for Kids" that is 45 calories per ounce (can you say THICK?!) that we will give him before bed. Only at this time, though, since she doesn't want that drink to interfere with his hunger for people food. We will see her again in two weeks for another weight check.

Roger and I heard myriad stories of families whose heart kids seemed lethargic or low in energy and we prayed specifically for Luke to be strong and active. God answered this specific prayer as Luke is one of the most active kids I know. He is, like his dad, constant motion. I was reminded today that although this probably contributes to his weight dip, I am THANKFUL that he is such a strong and curious boy.

I am also reminded today that God wants our absolute trust. I want to simply look at my healthy and nourished child and know that he is ultimately in God's perfect care. When I let myself perseverate on pounds and ounces, I am showing my lack of faith. Lord, give me more faith, faith as small as a mustard seed!


  1. You know who else is blessed? Luke is. To have to parents who love him so much and take such exceptional care of him. It's a challenge to have a baby with medical issues, yet you and Roger have risen to the demand, and done so with grace.

    I'm glad you started the blog - even though we live so close, we've lost touch - this will help us keep in contact.

  2. Bubba Luke! Active? He can't be contained!! He's everywhere...

  3. How I love this child! While we were at the park today he told me that he wants a brother or sister to play with. Can you guess who wrote this comment? That would be Grammie Keen