As things began to stabilize, I sent out updates further apart. This update also included a summary as I added new people to the update list…
There was little change over the weekend, so I skipped the day six and seven updates. Julie lost one oz on Friday night, but gained back 6 oz on Saturday. She’s about 5 lbs now. We’re not sure if the increase is due to more fluid, growth, or simply because she is eating more. Her facial features, neck, chest and abdomen gain definition each day. She still has fluid on her back, neck and head but it appears to be diminishing.
Her diet is now mostly from Sarah as each feeding increases by 2 cc every 12 hours. She should be up to 32 cc every 3 hours by midweek. Correspondingly, her IV fluids are decreased. They moved the IV from her navel to her foot Monday. The doctor today said this was an improvement since it is further from her heart. I don’t understand the significance, but the doctor originally told me that they would have to abandon the cord within a week or two anyway. I’m hoping she will completely lose this tube in the next few days.
The staff continued decreasing the settings on her breathing machine over the weekend to the point where they were able to change her to another type of machine Monday which is less aggressive and allows Julie greater movement.
I’ve noticed that Julie was much more stable since Thursday setting off fewer alarms than her first couple days. The staff never lets her stay static. They are always forcing her to improve by reducing supplementation. They use blood gas tests 2-3 times a day to determine whether she is handling the new regimen properly, or whether they need to backup a bit. The staff has been very happy with Julie’s ability to handle these changes. She is one tough little kid!
Julie was lying partially on her side during part of the weekend. Monday – with the new breathing machine and new IV position – she was in a new position completely on her side. Each new position helps her with fluids, comfort, etc.
Sarah is doing much better. She slept for most of the weekend while she concentrated on her three jobs – rest, recover and “cook” for Julie. Sarah had a friend drive her to the hospital Monday while I stayed closer to home. The swelling in her ankles and feet are almost gone despite her hospital visit and a couple hours of shopping. She was suitably exhausted this evening.
We had a flat tire while driving to the hospital for a milk run Sunday night, so I had a couple tires replaced today. Haven’t changed a tire in a while, but was able to figure it out pretty quick. I worked from home and listened to lectures online. I was also able to get some reading done at the tire place.
Praise God for all the progress Julie is making! And continue to pray for her progress this week.
Thanks to all,
Andy and Sarah Horn
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I’ve added several people to this email list, so I’m going to include a summary of Julie’s birth and first week…
I got a chance to do some rat-racing down US-75 to get to the hospital in time after Sarah surprised us both by going into labor. Sarah spent just 10 minutes in the delivery room before Julie arrived. No time for drugs for Sarah. Her water broke as she was lifted to the delivery table. Julie’s head was already crowning. Two nurses help Sarah focus on breathing and pushing. Her OB made it only a couple minutes before Sarah delivered after a dead-run across the hospital complex.
Julie was born on March 7th at 12:04 PM. She was 6 lbs, 1 oz and 18 inches long.
A separate team was ready for Julie immediately after the cord was cut to intubate her since she was not breathing. Julie was diagnosed in mid-February with a cyst in her chest in place of one of the lobes of the right lung. Over the next couple of weeks, she developed multiple areas of fluid build-up in her chest, abdomen and neck. As much as 2 lbs of her birth weight was excess fluid. The cyst (CCAM) was not life threatening, but the fluids (hydrops fetalis) gave her a slim chance of survival. She has about 40% lung capacity on the right side and was two months early at 31.2 weeks.
The first hour was touch and go, but for the balance of the week Julie made steady progress eliminating excess fluid, reducing her dependency on a breathing machine and increasing her food intake. Julie will probably have to stay in ICU for two months. We hope to have her home by Mother’s Day.
Sarah was released from the hospital on Thursday. She can drive now, but is under doctor’s orders for bed rest for the next several weeks.
The prognosis for Julie just keeps getting better and better. Although she gained back a little of the fluid, she had still lost quite a bit in her first week. She had graduated to a less aggressive breathing machine. Other all, we began to feel as ease with the current situation. After a week, Julie had come a long way.
The monitors alarmed each time Julie moved outside of the parameters set for heart rate, blood pressure and blood oxygen. With each passing day, I could gauge her progress by the number of alarms which sounded during my visits. I longed for the time when the annoying alarm wouldn’t sound at all, but just getting a minute of silence became welcome. Then, five minutes without an alarm. etc.
The lack of swelling around Julie’s face, head and neck proved a good indicator of her progress. Within a week, we could now see her facial features clearly, although her neck remained swollen.