Home for 1 Year!

On April 29, 2023, exactly one year ago today; Mattie spent his first day at home after being in the McKay-Dee Hospital NICU for 89 days and then 2 days on the 3rd floor of Primary Children’s Hospital in SLC for his G-tube surgery. 

I will never forget the night I brought him home. It was around 9:00 p.m. and I informed one of the nurses who walked by that I would be leaving with my child so she needed to get me whatever I needed. We were supposed to have been discharged hours before and I was not spending one more night in that room. (Btw, we have since had very positive experiences with PCH, but those two days were not). The poor nurse who had not even met us yet hurriedly got signatures and whatever we needed (remembering Matt’s oxygen as we were literally walking out the door 😩). I situated his flat car seat bed in the car (he had failed his car seat test 😔 twice) and we started for home. 

I remember being so relieved…after months of driving up to the NICU every night to hold him and feed him and drop off milk for the next day….to finally be bringing our little man home with us where we could love on him all day every day. 

I also remember feeling very nervous and honestly terrified as I drove the 35 minutes to our home. Wondering how I was going to feed him when we got there. Wondering if he was hungry. Wondering if he was getting enough oxygen. Wondering if he was scared being in a new place. 

I was absolutely terrified. How was I going to feed him when we got home? Yes, I had paid attention to the various people who had come by the hospital room that day to drop off the feeding pump and IV pole and the pulse oximter, etc… Yes, I had attended the class that day on how to take care of his G-tube site. Yes, I had probably a half dozen folders of papers and reading material on how to take care of this kiddo. Yes I had had 3 other children (who are all still alive btw 😉). But it was all a blur and I was terrified and completely overwhelmed. 

Luckily when I got home, there was an Intermountain homecare delivery guy already there helping my husband set up the oxygen tank in our home and Matt’s homecare nurse, Fran, arrived shortly after we did to help us get the feeding pump set up and make sure we were all situated and had everything we needed. It brings tears to my eyes to remember their kindness, and I will never forget them. 

The days that followed are a little more a blur as we adjusted to a new baby at home and learned how to take care of our sweet little Matthew. But those were sweet days as well. Lots of love and so much support from people around us. 

And just look at this kid! He’s doing great.

• He is still on oxygen but only when he’s sleeping (due to his obstructive sleep apnea). He does have mild chronic lung disease that will stay with him forever but so far hasn’t caused any extra respiratory challenges.
• He is sitting up on his own with a soft landing spot around him for when he falls over.
• He rolls around all over his bed and on the floor during tummy time.
• He is able to bear weight using his AFOs (ankle foot braces) and has even started moving a little bit in his walker.
• He has transitioned to solid foods by mouth and is doing incredibly well. As of right now he is only fed by tube for hydration and has transitioned to just whole milk and water for that. We don’t even use the pump anymore except for some extra milk at bedtime. Now we just use a syringe to feed him through his G-tube.
• He is babbling and laughing and smiling, and he is a happy kiddo 😊 (unless he’s teething ☹️).

We are so proud of this kid and all he has overcome and he is so so loved!

Note:

• He did fail to pass his hearing tests the other day 😔. He showed some minor hearing loss and abnormal ear drum movement, so we will be seeing an ENT and doing more tests in the near future.