We continue to have frustration with the OT and feeding therapy…
Julie continues to make mostly slow, steady improvements in her breathing and feeding. The steady is good, the slow is driving Sarah and I silly which is mostly frustrating.
Julie is still on the low-flow nasal cannula. Her Co2 levels have been high, but within tolerance and gradually dropping, steady. The doctors agree that she is doing better than when she started this level about 10 days ago. She is still dependent on the oxygen, but getting stronger…slow and steady.
Her feedings are also moving in the right direction, mostly. She started the week by refusing to bottle feed (which I mentioned in the last update), but got up to 15 cc by Friday. The OT didn’t try on Tuesday (slow), but surprised us by getting Julie to feed 5 cc on Wednesday (steady). It took Julie 12 mins to down 15 cc on Thursday and only 6 mins on Friday (steady). So, we thought we were really making progress!
Then somebody in government pulled our thickening agent off the market over the weekend and Julie didn’t have an opportunity on Monday to bottle feed…slow. On Tuesday, Julie was switched over to another agent, but wouldn’t take the bottle…slow. Today, we heard the OT was able to get Julie to feed her 15 cc today…steady?
To add to our frustration, Sarah came into the hospital Monday only to find out that OT sessions were cancelled, then missed the session on Tuesday because no one told us about the new plan, and we missed the session today because the OT did it at 8 am instead of 11 am. Fortunately, Sarah ran into the OT and we now have a plan – she will try to wean Julie off the thickening agents first, then go for more volume and frequency… slow and steady, but mostly frustrating.
One of the doctors called last week and mentioned a strange word that we haven’t heard since we first started this journey almost three months ago…discharge! We still have a ways to go, but we’re getting there…slow and steady. Julie will need to feed by bottle (she is now feeding 73 cc every 3 hours) or have a 4th major surgery to insert a feeding tube (g-tube).
This past week, we also had several prayer sessions for Julie with different church leaders – two from our church, the chaplain from DTS, the hospital chaplain, and a missionary to Haiti (who hosts the fund-raiser we attended last week). We are very blessed to have these men of God take time to visit Julie and pray with us.
It appears that the tracheostomy (for breathing) is off the table, but the g-tube (for feeding) is still a possibility. Pray that Julie will begin feeding by bottle and soon before her parents go mostly crazy!
I’m including some (overdue) pictures. The first is an unhappy child, but for the very 1st
time…she has nothing on her face! No breathing or feeding tubes. Another picture is of me holding Julie’s head. The rest are self-explanatory.
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 5th, 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.
- Last week, Julie was reduced to the “go home” settings on the cannula. Her bottle feeding increased to 15 cc, but was erratic.
My update list now exceeds one hundred via email and more on Facebook. Some of these forward all or part of the updates to their email lists including DTS which includes thousands on their lists.
The problems with the bottle feeding have knocked out the prospect of release by the end of the month, but we still hope for a discharge early in June. The doctors want to go ahead with the g-tube, but I argued for another stay of execution. After all, the OT wanted to do a swallow test anyway.
The OT seemed too cautious and unreliable. Meanwhile the NICU nurses encouraged us to proceed on our own (under their supervision) and push Julie. Like us, they had seen how she responded to challenges and how she responds to positive feedback. The OT just didn’t seem to click with Julie.
Sarah arranged with our new music friend (from the Haitian fund raiser) to stay with us for a week and tutor Sarah. Sarah composes and plays piano music, but hasn’t had much practice or training for the past several years. It seemed like a huge opportunity, so we scheduled him to come after (when we hoped) Julie came home.