Not much to add to this lengthy update…
(I missed the week 16 update and this will serve as the week 17 update so this will be an
especially long update.)

Julie is truly enjoying being at home although we have had several challenges. We are tired and rather stressed from her normal and special needs, but she is doing so very well that it’s all worthwhile!
We’ve been so busy since Julie got home that I really haven’t had time to write. Julie came home on hospital time (3 hour cycles 24 hours per day). So, first order of business was to get her settled into her new quarters, arrange doctors’ appointments, and begin shifting her to a more civilized schedule; all the while keeping up with her needs both special and normal for an infant. Both Sarah and I have been fighting off various ailments – mostly related to fatigue and stress.
After two showers, lots of individual gifts, and my mother’s credit card we have everything we need. It took several days to unpack things, organize the nursery, collect the instructions, breakdown the boxes and get it out to the trash. It is such a blessing to have a fully supplied nursery and kitchen!
Sarah spent most of this past week getting appointments lined up for Julie. She has about 8 or 9 appointments this month with the: surgeon, heart doctor, lung doctor, pediatrician, oncologist, occupational therapist (swallow test), etc. It will be a full time job just to get everywhere on time.
We figured Julie was old enough to handle sleeping through the night, but we waited until our first appointment with the pediatrician before making any changes. He gave us freedom to experiment, so we began to move from 8 feedings a day to 5-a-day. Julie was doing pretty good at first, but started giving us more and more trouble. Our lung doctor spent about an hour talking with us last Thursday and we agreed that our approach had been too aggressive, so we backed off and Julie is back to her cheerful, patient self.

We do 6 three hour cycles during the day starting at 6 am. Julie is in her crib after the 9 pm
cycle, so we get about 8 hours to rest and take care of other things. In addition to normal things like diapers, bottle feeding and play time, Julie is connected to the pump to supplement her bottle feedings. She also gets two rounds of medicine a day and two sets of respiratory treatments (4 puffs from the inhalers and 10 minutes of “beatings” on her back to loosen any junk in her lungs). We inspect her g-tube once or twice a day. She gets a bath 3 times a week. I do the “cooking” for Julie once a day by mixing her formula, mixing her bottles with rice cereal and the “chemistry” by measuring out her medicines
into syringes which we inject via the g-tube.
She enjoys being held like any normal baby, but occasionally needs some extra attention when her airways clog up. The “nissen” procedure causes her to choke on her own spit. She can almost always work through it herself, but it’s disconcerting to say the least. There have been a couple of times that I’ve applied some of our CPR/choking training to Julie – rule #1: stay calm! It’s OK. She’s not gonna die. She just needs some help. Still, Sarah has a hard time sleeping when Julie is so croupy. It’s not a low- stress environment, but we’re understanding her needs and we’re able to deal with each “crisis” as it comes.
The g-tube has been every bit the trouble I was anticipating. We tape it in place using a complex combination of gauze and tape. Sarah holds a screaming Julie while I perform the operation. It needs to be cleaned daily at which Sarah and I take turns. We’re constantly worried about Julie (or us) pulling it out. Over time, I’ve noticed it gradually coming out from normal wear. Then, this morning, I put Julie down on the soft mat on a table to clean her face from the inhalers. I didn’t check her g-tube when I picked her up and it got caught on the edge of the table and pulled really hard. Julie was bleeding slightly from a pulled stitch. I re-taped every thing back in place and cleaned the wound. Sarah said it looked very good at tonight’s bath. Fortunately, we have an appointment with the surgeon on Tuesday. Hopefully, he will either give us the “mickey button” or reinforce the tube. I will feel so much better when that thing is behind us!

The pediatrician insisted that I get a vaccine shot, so I got the shot and sure enough it worked! About 24 hours later I was completely exhausted, had the chills and was stiff and sore all over. It only lasted for about 12 hours, but Sarah had to do double duty with Julie. So, she was exhausted for the next couple of days. Since then, Sarah has been fighting a bit of a cold and so I’ve been covering several cycles for her.
On the good side of things, Julie has adjusted to living at home without any major problems. She sleeps in the crib at night, she loves her new bouncer during the day and we try to give her some “tummy time” to give her some exercise for 10-30 minutes at a time. She is starting to smile more and more. She smiles when she hears the sound of her mother’s voice, when she sees her bottle or when she is in her new bouncer. Although she cries at times during RT treatments when the “dreaded puffer” is placed over her face; when we need to adjust her g-tube; or at bath time, Julie usually stops quickly when we finish and doesn’t stay mad for long.
The cat has been expectedly curious about this new addition to the family, but has been
surprisingly respectful and keeps her distance. I’ve attached some pictures including one with her and the cat on the bed together. I think you will like them all.

Please continue to pray for us. The lung doctor was a little concerned about Julie’s oxygen levels. He almost sent us home with oxygen equipment, but we all agreed to give it some time and reduce the volume/rate of each of her feedings. Julie’s bottle feedings are hit and miss. And praise God that she is home and she is doing so well after four surgeries and 3 ½ months in the NICU!
Andy and Sarah Horn
Julie’s main problems at this point include bottle feeding and physical strength. I focused on the bottle feeding in the updates. We tried to let Julie exercise as much as we could. She needed a lot of tummy time to increase her neck and arm strength. This also helped her back. Unfortunately, she just didn’t have the strength, endurance and motivation to get started. After four surgeries, she really needed a lot of rest.
We learned that Julie’s developmental progress took its own path compared to other babies. She went through the same stages, but not in the right order. So, she excelled in some areas and lagged behind in other areas.
Julie’s lung issues topped the list of concerns. Having escaped the NICU without any breathing equipment, the last thing we needed was to have our pulmonologist prescribe mask and oxygen tubes again. So, we focused on stabilizing Julie’s environment and schedule.

One of our friends from church, Molly, spent nearly a whole day cleaning the apartment, washing clothes, and organizing things. No job too big; no task too small. She really helped us get caught up with chores and helped our sanity. Julie responded positively to her visit.