This update is overdue (apologies!) and written in haste as we’ve been treading water the last few weeks just trying to keep our heads up. We have much to give thanks to God for and to ask for your continued prayer. We’ve been living at Texas Children’s for 220 days to date, and Simeon has spent all of his 190 days of life in the NICU.

 

Lungs: At the end of May the doctors weaned Simeon from a high-flow CPAP to a low-flow nasal cannula. With a little ongoing boost of oxygen, Simeon can now maintain safe saturations with more basic support. Simeon will likely need to remain on 24/7 oxygen support for another year.

 

Eating: After moving to a low-flow cannula, we had the green light to trial seeing how Simeon could eat by mouth. Sadly, we haven’t been able to make progress on that front. Simeon can barely swallow a few dribbles of milk without hacking coughing to prevent inhaling it. Why? Well, for the past 6 months, Simeon has been fed entirely via a removal tube placed in his nose/mouth that pumps milk into his tummy. This means he has never had the opportunity to learn to swallow milk himself. Who knew that breathing, sucking, and swallowing milk is a major life skill that has to be learned as a tiny baby. And this skill, when delayed to be learned as a bigger baby, can take much longer to develop, from months to sometimes years. So, we opted to a g-tube for Simeon. This is a semi-permanent g-tube surgically placed into his stomach via a port in his abdomen. This allows him to come home much sooner so that he can safely get all his calories to grow while we work with therapists at home so that he learns to eat by mouth. I was told to prepare for about a year of needing the g-tube.

 

Heart: We just learned that Simeon’s open heart surgery will likely happen 2-3 months from now. This will be for the repair of the big hole in his heart. So we’re not out of the woods yet in terms of significant hospital interventions, but we’re making lots of progress.

 

So … drum roll please … barring developing any new infections or viruses that would prolong his hospital stay … the doctors are planning to DISCHARGE Simeon NEXT WEEK!!! The plan is to go home on 24/7 oxygen and a g-tube and come back for the big heart surgery in a couple months.

 

Honestly, we’ve barely had time to process. We’ve been jolted into a new gear to coordinate with a score of care teams so that we can care for Simeon on 24/7 oxygen and a g-tube at home. As many of you know, our 2 year old has a different rare lung disease that requires home oxygen primarily for sleeping, but this is unrelated to Simeon’s lung disease (instead caused by prematurity) and we’ve only seldom been on 24/7 oxygen at home. Full-time home oxygen is a major step up in what is requires of us as parents for ongoing care, as well as pumping milk into a tummy via a g-tube.

Please pray with us:

On the home front, Gwen, James, and Baby Calvin are very eager for Simeon to come home! Gwen has already reserved the "first hold" of Simeon as soon as we get him out of his car seat.