Lucas Going Home!

 

Hello Family and Friends,

3/27/24

Lucas is going home! Today marks the 2 week mark from when I gave birth to him, it's hard to believe! I've been in a lot of talks with the pediatricians on staff here and he can go home tomorrow! 

He is being discharged with an oxygen tube and a feeding tube. I had a chance to talk with the cardiologist late yesterday and he let me know that the reason Lucas needs the oxygen tube (which is keeping his oxygen saturation up) could be from either his down syndrome or his heart defects. It's hard to know exactly which is having him need the oxygen support, but he is hopeful and thinks it likely that in a few months he will grow big enough that he won't need the oxygen support through the nasal canula any more.

But as always, we'll just take one day, one step at a time and see what this journey looks like with Lucas as he shows us what he can do!

The feeding tube he will definitely grow out of. We've been tracking how much he's eating by mouth versus the total amount he's been given and he jumped up from 19% to 43% yesterday. He's showing off before he gets discharged. I'll be tracking his feeding closely and working with his pediatrician closely and once he is eating 80% of his food by mouth and we see that being sustained over a few days and his weight continues to increase then we can remove the feeding tube!

So today I got trained at the hospital on how to work the pump for the feeding tube and later today I'll be getting trained on the oxygen tube and what that looks like. We also did a car seat test to make sure he can be in it safely.

I'll send out an e-mail when we are actually discharged and going home.

I am also getting prepared to discover what life looks like with Lucas home with the other aspects of his care. Because he has down syndrome AND he stayed in the NICU and is also going home with the oxygen and feeding tube, there are federal programs that are available to us for free.

He'll have:

Pediatrician
Speech Therapist (who also looks at his feeding and quality of mouth motor skills)
Occupational Therapist
Physical Therapist
Cardiologist
Feeding Consultant - until he's off the feeding tube

Here we go!

3/28/24

Discharge Day!

I woke up bright and early this morning, I spent the night in Lucas' room so I could be close! Took a shower and wanted to pop out of the hospital to get the staff some doughnuts. Turns out there is a General Porpoise doughnut place in U Village! OMG, if you guys haven't had these doughnuts you should totally try them. They are amazing!

I am just chilling in Lucas' room. He needs one more hearing test & the physical therapist needs to come by and then I think we can go. So we'll see what time it ends up being. I'm all set up with an oxygen tank that has a nice portable bag that I can keep in the stroller or wear like a back pack.

And we're off! We headed home around 4pm, with traffic we got home at 5:15pm. Shortly after, Fernando picked up his brother at the airport. So we have a nice little family unit in the house helping take care of Lucas. I had a ton of stuff to unpack and put away when I got home and Abuela was all too happy to hold Lucas for me for a while and feed him while I went to work getting everything organized.

And just like that, we're home! What a whirlwind! Thank you all so much for being on this journey with us and keeping us in your prayers. The next goal is to get the feeding and oxygen tubes off! We'll keep you posted!

Love,

The Entire Martincic Family!