Within the first month, I emailed update messages to over seventy people at a time. Additional people read my FB postings. Some recipients reposted and forwarded the updates to their friends and family members. I figured a couple hundred people followed Julie’s progress weekly…
Julie had an uneventful weekend. She is still on the ventilator. The settings went up a little Friday, but came down on Sunday.
They took the catheter out of Julie’s scalp from the surgery. She is off IV fluids, pain meds, etc – just formula, momma milk and the occasional shot.
Her weight has stabilized around 5-1/2 lbs and has been slowly climbing. She was 5 lbs 9-1/2 oz yesterday.
She is swaddled most of the time with the baby box open and the heating lamp turned off. She has been sleeping peacefully when we’ve been there. Julie takes advantage of diaper change time to stretch her arms and legs before getting wrapped up in the blanket again. She is sucking just before and during feedings; and was cooing for us several times during our visits.
Unfortunately, the doctor started talking about a third surgery. They are not happy about her breathing progress. I’ll keep y’all updated as I learn more.
We continue to receive support from family and friends. Sarah has had a couple nice visits and shopping trips related to the baby shower(s). We will receive meals tonight and Friday. We are meeting with one of our pastors at the hospital on Thursday night for some prayer. The folks at work signed a card and took up a collection for Julie – it was very generous.
I turned in one assignment on time this weekend and another one a little late. I have a couple quick things to do tonight. I have nine assignments due this weekend (Saturday through Tuesday) so I have a lot to do. Also, I have tons of reading to do. The next big push starts April 30th and continues for a week until the end of the semester.
Please continue to pray for Julie (and us).
Andy and Sarah Horn
The ventilator settings continue to yo-yo up and down driving me nuts since I can’t tell whether things are getting better or worse. The NICU staff kept pushing Julie so they would turn down the settings and then back up when she responded poorly. We couldn’t see the overall progress until she graduated to the next machine.
Julie enjoyed swaddling for this brief period of time. She made sucking motions and noises with her lips when she got hungry. Unfortunately, we couldn’t feed her a bottle because of the tubes and her weak breathing. Her cooing made us feel better. She hadn’t expressed pleasure, satisfaction or comfort very often since birth.
We learned about Julie’s tumor some where around this time. The oncologist called it a teratoma tumor. These masses can contain various parts of the body (like bits of bone and/or internal organs). Julie’s tumor included tissue resembling the pancreas and small intestine along some connecting tissue in between. The mass measured 3 inches long by 1.5 inches (about the size of Julie’s arm) after the surgeon removed it.
While not technically cancer, the teratoma tumor can still threaten life since it displaces internal organs and competes for space and resources.
The oncologist said that teratoma tumors generally form along the center axis of the body (as opposed to favoring one side or the other). These tumors result in death when they occur in adults. When they occur in newborns, they almost never come back. They occur rarely – one in a million or more. They result from a flaw during development rather than genetics
Think of a stem cell that can turn into any cell found in the body. While one group of stem cells turned into Julie’s pericardial sack, one or two cells went into business for themselves and produced the tumor.
The surgeon had never seen one in his 20+ year career. The oncologist had seen several teratomas in his 30 year career, but never one like Julie’s (in the chest). There is no reason to believe that the tumor will occur in any of our future children.