Super Secret Option "E"

Ah, Children's. and visits to Children's. Today we had 3 appointments. On the way to Children's, I was talking to my friend Meredith about what we expected. We expected to mainly find out about whether or not (really, when!) we could move to a G tube for Kara (straight into stomach through her skin). We knew it was a surgical procedure and was better for long-term feeding tubes. However, I was commenting to Meredith that every single time we've gone in for appointments, we have expected to learn "1 of 2 things" or "whether or not we'd need surgery" and were always given unexpected super secret option E or a barrage of different information than we expected. Today was no different.

Super secret option E today was learning that while a G tube sounds great for our situation, they do not manufacture them small enough for Kara. We'll re-evalute in a month. Ay, Karamba! Well, I have been wrestling with the idea of perseverance (from James) and its meaning in Greek of "remaining under". We are being asked to "remain under" the NG tube. Everything in my sinful, postmodern body wants to wriggle out of where God has me. I am thankful for His Word and the reminder to "remain under".

So now that you know super secret option E for today, I'll chronicle the day. We had an 11 a.m. ECHOcardiogram to check on Kara's pulmonary hypertension. I had a nice chat with the sonographer who is 36 weeks pregnant with her first. Kara just cooed and chatted (she's making Guh sounds and raspberries now) and was just a doll. Actually, I don't think she cried all day. Then Kara and I ate lunch (pretzels, chocolate milk, yummy cafeteria food!) outside in the sunshine.

Appointment #2 was with the dietician. Basically, Kara's growth is right on track. For the "average" baby this would be par for the course. For us, who are still determining her caloric intake, this is huge. We are currently stewards of exactly how much food goes in her body, and we want to do our job well. We also got some questions answered about calorie intake and gram/day weight gain for the future as well as when we start solids. We are being encourage to do spoon feeding (mostly milk) on the earlier side. I am thinking ("Hmm... where will I find time for THAT?")

Appointment #3 was with the general surgeon. He is truly an amazing doctor. He spent over an hour with us, looking at Kara, asking about her development, helping us understand her chest wall abnormalities, and G tube. He also gave us the ECHO results - her pulmonary hypertension is completely resolved, PTL! and her heart and the septum is looking better (b/c the heart was on the wrong side all of gestation, the septum in her chest wall is... shall I say... off-kilter. Probably looking at surgery in adolescence, but we'll worry about that later!) We also understand more about the G tube procedure, and are understanding that it is a pretty big deal. It would be another surgery and a 2 night hospital stay. So, now that we have at least another month on NG, let's be praying Kara starts eating lots and lots (she's eating about 150 out of her 770 mL by mouth).

Please also be praying for us. We are tired. When we look at our life and the support we have, and the children God has blessed us with, all looks good. But the daily logging, calculating, pumping, feeding, is taking its toll. We do want to "remain under" but we also want to be wise and try to have realistic limits for what we can expect of ourselves. Emotionally it has been very hard to try to "not worry" (translate: not care so much) about what Kara is eating orally. To those of you who have checked in on us, thank you. It is so helpful to stop and answer "how are you doing?" Without answering that question, I do not stop and reflect - I do not pause to discern whether or not I am thinking biblically about our situation.

Just for fun - here is what Kara did before church on Sunday. I love how the Lord pushes us toward a decision when Jeremy & I are asking each other "should we change her tube? Or at least her replicare?" Easy enough decision after Kara did this =)



This is Kara bringing something to her mouth to chew on - hooray for these little milestones!!