After a number of encouraging updates and steady progress I sent out this…
Julie had another set back this weekend. She is back on the ventilator. This means she has another tube down her throat for breathing in addition to her feeding tube. Her CO2 levels were rising Wednesday, Thursday and Friday and even the SiPAP machine (CPAP on steroids) wasn’t enough for her. An X-ray revealed that she doesn’t have as much lung tissue as she needs. This is a result of the tumor they removed two weeks ago. So, she’ll need to be on the ventilator until her lungs are more mature and she is a bit stronger.
In the meantime, she isn’t gaining weight. Her weight fell to 4 lbs 12 oz on Friday. It’s
possible that she is still draining off excess fluid from the tumor and that her real weight at birth was lower than we initially thought. So she might be gaining weight, but we can’t see it because she is losing fluid at the same time.
Taken together, it could be that Julie still had fluid in her lungs which is why she’s had a hard time getting off the breathing machines, etc. We just need to get her time to recover and grow. It’s the worst news possible – wait!
On the bright side, Julie has been better able to regulate her temperature. Although she is still in the “baby box,” the lid is up and the heating lamp is off. At some point, she should be able to graduate to a crib. I wouldn’t be surprised if they leave her where she is until she is off the breathing machines.
Thursday, was a good day. Sarah changed Julie’s diaper, cleaned her mouth and for the first time gave Julie a taste of milk. Sarah placed some milk on a gauze, wrapped it around her finger and let Julie suck on her finger. Sarah just about lost her fingernail! Julie had a hold on my little finger at the same time and literally her knuckles were white because she was squeezing so hard. She’s near four weeks old and the world tastes like plastic, so she was very excited and so were we.
Unfortunately, Julie was exhausted on our trips Friday and Saturday and didn’t respond at all when we were there. Julie was throwing alarms Friday from too little oxygen every few minutes (before the ventilator). She was throwing alarms from too much oxygen on Saturday every few minutes (after the ventilator). It was frustrating, worrisome and disappointing.
Please continue praying for Julie that she will stabilize. Pray for us, too. This week has probably been the worst one yet strangely enough.
Also, remember Michael Allen who is scheduled to be born tomorrow. His MRI indicated possible brain damage, so pray that he will be completely healthy.
Finally, Sarah’s sister-in-law Anca’s sister – Raluca – gave birth earlier this week. Their son was one month early and has kidney problems. We will be talking with them in a few minutes to help encourage them.
Andy & Sarah Horn
Sarah met Michael Allen’s mother in the MRI on the Friday before Julie was born. They were very concerned for some brain development issues that they detected with ultrasound. So, they wanted an MRI to get a better look at the baby’s skull.
Raluca gave birth a month early. They recently immigrated from Romania so the process is a little different for them. We encouraged them as much as we could, but they were doing pretty good on their own. I’m not sure that we helped.
It seems strange that after all the progress Julie made, we should become more discouraged during this week than when she was really, really sick. After all, the surgeon told us that Julie wouldn’t have survived the night if they had delayed the first surgery. Doubts have a way of taking over. Will Julie require permanent breathing support? The doctors had mentioned it from time to time. Maybe they were right and…
Well, doubts can bring you down. The solution to wait doesn’t make things any better.