I originally sent this update out at the end of September…
Julie had a quiet month after her trip to STL and enjoyed a good trip to Roswell, NM.
Somewhere along the line, Julie surpassed the 15 lb and 25 inch marks. We estimate that Julie was really 4 lbs and 18 inches at birth.
Without any doctor’s appointments, it was a noticeably quiet month. I spent most of the month working on the notes for my 2nd book. I had hoped to finish in a week, but it took quite a while longer. I still have several changes to make, but it’s much clearer, readable and biblical than before.
Sarah and I spent the month working on Julie’s schedule. We were finally able to get her down to 5 feedings a day: 7 am, 11 am, 3 pm, 7 pm and 11 pm. It’s still a job keeping Julie on schedule, but we now have some time in between feedings to accomplish other tasks. This has really helped Sarah and I’ve now exchanged the 6 am feeding for 7 am.
The Mic-key button (that’s how it’s officially spelled, but I’ll write Mickey from now on) is much easier to use than the g-tube. First, it has a one-way valve built into the device, so it won’t leak when disconnected. It sticks out about ½ inch from her tummy, so it’s much easier to hold Julie and she can roll over on her stomach without as much discomfort. The button comes with a balloon filled with water on the inside of the stomach. The nurse explained how to check the water so we can be confident that it is holding itself in place anytime we care to check. That has reduced our stress level immensely.
The Mickey button comes with a detachable tube that links the pump to the button. The tube needs to be primed with water before each feeding and cleansed afterwards. We use a syringe to fill the tube with water (and the liquid vitamins once a day). We also use the syringe to push the last couple ml of formula into Julie’s stomach before removing the tube. Keeping the tube clean has been an interesting exercise. I’ve include pictures of the g-tube and Mickey button.
Another neat feature of the Mickey button has been the lack of gas in Julie’s stomach. She had problems after one meal, but it was fairly minor compared to what we dealt with for the g-tube. Of course, with the nissen, Julie can’t really burp, so gas is a real problem. That’s why we prime the tube with water – to reduce air in the stomach.
Julie has been REALLY reluctant to drink from her bottle all month. She used to drink anywhere from 2-3 oz each feeding. We thought that she was on the mend when she got up to 4 ozs. But now she will barely drink a full oz from us. There were a couple weeks this past month when it was a battle of the wills just to have Julie hold still. I was very proud of Sarah for standing her ground and not giving in. We were supposed to have a swallow test in August to determine if Julie was making any progress, but nobody has called us. Sarah made a couple of inquiries, but had no luck.
Sarah and I took Julie to visit Sarah’s parents, Ken and Shirley Thompson, over the Labor Day holiday. Unlike the STL trip, we had an extra day to work with, so it was much less stressful and about 100 miles closer. Also, it seems that the speed limit must have increased on that road since we last took it. We made it there much faster then I recalled. We got a nice room in a new hotel and had the Thompson’s come over and visit us. Their house is undergoing renovations, so it was easier for them and much easier on Julie to have all her equipment in one place.
They were very happy to see Julie and overall it was a great visit. We have some pictures
attached. Unfortunately, we were up late each night of the trip, so we were both exhausted when we got back.
I started the fall semester again. I’m taking Greek, Old Testament, Angelology, Research and a Spiritual Formation (small group) class. I’m only worried about the Greek. I tried this class over the summer, but had to give it up when it became clear that I couldn’t keep up with the aggressive schedule. I’m still wondering if the memorization will be too much while balancing work and a kid with special issues.
Otherwise, I’m very much looking forward to the material.
Sarah is starting to work on some writing for her book and will start tutoring sign language soon. Julie is making great progress in all areas except bottle feeding. Thank God for all His blessings!
Andy & Sarah Horn
PS I’ve added a lot of people to this list recently, so I’ll include a quick summary of Julie’s
progress:
- We learned of the problem with Julie on February 15th.
- Julie was diagnosed/confirmed with fetalis hydrops (multiple areas of fluids building in her body) on March 4th after an MRI. Julie had a 30% chance of surviving birth. Sarah was measuring 10 months (from fluids also building in her body) while only 7 months pregnant.
- Sarah gave birth on March 7th within 10 minutes of arriving to the delivery room. Julie was born 6 lbs 1 oz with over 2 lbs of excess fluids. She was two months early and was not breathing when she was born. Upon surviving birth, her chances climbed to 50/50.
- Julie’s situation was critical, but she began to lose excess fluids and gain strength.
Eventually, she began to have more problems breathing. A teratoma tumor was removed from Julie’s chest via open heart surgery on March 18th. The benign tumor was 3 inches long and 1.5 inches in diameter. - Julie continued to make progress for a couple weeks, but began to regress again, leading to a 2nd surgery on April 6th to close off a duct near her heart (PDA).
- Julie’s progress was good, but her right lung was not inflating properly. Her 3rd surgery on April 20th moved the right side diaphragm down so that she had much more room in her chest.
- The week of April 25th was a good week for Julie – she was back to her birth weight, but without all the excess fluids. She graduated to a CPAP machine (from ventilators).
- On May 5 , X-rays indicated that Julie’s right lung was fully inflated for the first time.
She moved to a high-flow nasal cannula the next day. - Julie progressed to a low-flow nasal cannula on May 10th. Her first bottle feeding was May 12th for just 4cc.
- May 16th, Julie was reduced to the “go home” settings on the cannula. Her bottle feeding is erratic.
- May 30th, Julie is bottle feeding an entire meal at a time but isn’t regular. She is showing signs of acid reflux and her breathing is not improving.
- June 2nd, Julie failed a swallow test.
- June 7th, g-tube and nissen surgery were completed (about 5 hours late). Julie didn’t need a Ladd procedure.
- June 13th, Julie is back on the “go home” settings in less than a week after surgery.
- June 14th, Julie is off all breathing support!
- June 17th, Sarah and I spend the night in the hospital to demonstrate that we can take care of Julie.
- June 18th, Julie is released from the hospital the day before Father’s Day after 102 days in the NICU. She doesn’t require any external breathing support and is supplemented by a g-tube for feeding!
Very few people expected Julie to survive, to say nothing of leaving the NICU without mechanical support. She is a miracle baby! We are very grateful to the hospital staff for all their skills and concern for Julie during her stay with them. They did amazing work!
Julie left the hospital in the bottom 5% of babies by weight and height for her actual birth date. One month later, she rose to the lower 25%. Two months later, she ranks as average by weight, height and size of head.
I added another dozen or more people to the distribution list. Several hundred people read the updates.
We had a three week period without doctors or therapists. The last feeding therapy session seemed to go backwards in terms of formula thickness and nipple size.
About the same time, we noticed that Julie began resisting feeding more and more.