Julie made good progress on her bottle feeding this week…
We’ve had good days and bad days this week. (I was originally planning to send this out Tuesday.)
Julie has had three appointments in the past 8 days – heart doctor, feeding therapist, and GI doctor. I talked about the heart doctor in the last update.
The feeding therapist is an SLP (Speech Language Pathologist). When I met Sarah, she was starting the course work for her SLP degree. We agreed that she would not pursue the degree, but she did finish out her course work for that semester. Sarah already has a master’s degree in Spanish. She had considered becoming a bilingual SLP which would place her in very high demand, but she decided on a more challenging career… taking care of me!
This appointment got a rocky start. We arrived a few minutes late and weren’t told that we needed to bring our own formula. After getting everything squared away, Julie impressed the SLPs by bottle feeding well enough to qualify for a reduction in the rice cereal we use to thicken her formula. So, she is back on a liquid diet! The old recipe was pretty thick – like sucking a bowling ball through a straw. Consequently, Julie is feeding more from the bottle and less from the pump.
Since we were in Julie’s hospital, we stopped by the NICU to say hello. The receptionist
recognized us right away as did one of the nurses who was passing by the main doors at the time. Julie acted shy and was rightly admired by all. She has come a long way. We hope to stop again by next week on the 28th after our next appointment and see if we can catch some other nurses and doctors.
Saturday was a surprisingly quiet day. I got a few chores done around the house, Julie passed the day peacefully and Sarah for the first time in months felt like she had nothing to do. A friend, Jerome, came over a couple hours while we got caught up with each other. He was working at the hospital where Julie was, but he never got a chance to see her there.
Sunday was another story. It started with a wardrobe malfunction. Julie’s diaper leaked pretty well, so we had to clean the baby, the crib mattress and get ourselves ready for church. Needless to say, we were very late for the 2nd service. Fortunately, we were that much early for the 3rd service. Afterwards, we made a couple trips with Julie to stores on our first family outing that wasn’t a doctor’s appointment. Julie did well during the trips, but we were late to feed her and we paid for it all afternoon. Eventually, I put her in the crib and let her cry herself to sleep (took about an hour). That reset her rhythm and she
was a very happy camper for the balance of the evening.
We started Monday early again for the appointment with the GI doctor. It was actually with a nurse practitioner rather than a doctor, but it was a great appointment. We learned what we were doing right – formula mixing, feeding amount, gauze around the g-tube, venting the g-tube when Julie fussed – and what we were doing wrong – slow down the rate of feeding. She called in a dietician who confirmed Julie’s diet. Julie was 13 lbs again and 24.5”. That puts her in low the 25% in the world and low 15% in the US. If we account for being two months premature, she is right in the middle. Also, she is right in the middle for height/weight. That confirmed that we’re doing things right and she is making progress (last month she was in the low 5% to 15% to 25% rankings, so she moved up a notch).
The other thing that we learned was to push any excess back into her stomach when we vent her. I’ve done it with small amounts, but I was hesitant to do it when we had a couple really large overflows. I’m still thinking like a parent and not a nurse.
Today started with another malfunction. This time is was an “equipment” malfunction. I blame it on the equipment, but really it was because I forgot the open the valve on the g-tube. Normally, the pump signals an error, but this time, it pushed open the medicine port and I found Julie swimming in formula and the remnants of her multivitamin. Sarah was a good sport to get up and help me clean Julie (who got an early bath). I cleaned the mattress for the 2nd time this week. It looks beautiful now. All the new stains & other earlier stains are also gone. Even one drop of the multivitamin leaves a black stain that penetrates glass, so it’s hard to keep the mattress spotless.
Somewhere along the line this week, the last stitch holding Julie’s g-tube fell out. There was some blood, goop and tears. We held together fairly well, but it’s still tough figuring out what to do with a screaming infant excreting bodily fluids. Each day is a lifetime of emotions.
Continue to pray for Julie’s breathing, feeding and of course, that the g-tube doesn’t fall out. We thank God for her every day and the wonderful testimony she has been given. I’m including some new pictures from this past week.
Andy and Sarah Horn
The g-tube problems continue for another week while we wait for the wound to heal sufficiently for a Mickey button – which is smaller and more secure that the g-tube.