Warming Up to the Paci

Good evening, everybody. This is Brian with a late night post about the cool and interesting things that happened today.

I walked in this morning and saw my baby boy without his PICC for the first time! That was such a great feeling to see my little man without a catheter on his head and know that he was one step closer to being well, even if the light at the end of the tunnel is still some distance away. After I suited up in my gown and gloves to approach Jude's bed, Rose beckoned me over to the side of his crib and showed me that I could now pick him up on my own and hold him while standing beside his bed. Since he doesn't have a bunch of IV lines connected to his head anymore, we can interact with him and move him around much more freely than before. Awesome! I scooped up my little boy held him, bounced him, and even danced a little bit to the lullaby music playing in his corner of the module. (I'm sure any nurses and passersby had to avert their eyes, as I'm the world's worst dancer, but I didn't care! It felt so good to hold him like that!)

Shortly thereafter, Rose and I went to rounds to talk to Jude's docs about how he's doing and what the plan is. Here are just a few highlights that came out of the discussion:

• Jude's had some marginal improvement with his pulmonary hypertension and his heart function. That's good! He still has to show some more improvement before he'll be ready to go home, but he's taken another baby step in the right direction!
  
• Rose and I asked the docs how long they estimate that Jude will need to remain hospitalized, and they said that, at best, it would be another month. We want our little man to be healthy and get the care he needs, as those things are our priority, but certainly want to all be together and to go home, so this bit of news was a little sobering; nonetheless, each day is one step closer to discharge, so all we can do is pray for God to help us endure and be steadfast until we're back in our home with both of our children.
• Jude is picking up the pace with his eating, and he's inching a little bit closer to full feeds every day. Eventually, the doctors will start feeding him through his stomach again and they may start fortifying his milk with a few additional calories in the not-too-distant future. As long as he gains weight and gets the nutrition he needs, then we'll be happy. For the moment, though, Jude is hardly an undernourished kid: At almost 14 pounds, he's a stout little fellow. :)

Shortly after Rose and I finished talking with Jude's doctors, his favorite occupational therapist, Katy, came by to work with him. One of the things she's been working hard to counteract is Jude's oral aversion, and thankfully she has taught us a few tricks and exercises so that we can help, too! Although Rose and I love to be with him when Jude does his physical therapy and occupational therapy, we had to get back to the house a little earlier today, so we left before the OT was finished.

While we were on the road back to Mount Pleasant, Katy called and told us that Jude had sucked on his pacifier after we left! Praise God! He actually sucked on the paci about 5 different times, and during one of those instances he sucked about 10 times before stopping. This may sound pretty unexciting, but it's a big step for Jude on the road to recovery, as conquering his oral aversion is necessary for him to learn how to eat through his mouth later.

Thank you all for continuing to read and pray for baby Jude. If you would, please pray with us that all of the areas in his little body will work correctly and improve in the coming weeks and months. Also, please pray for our family. Life together in the wake of so many changes over the last few months continues to stretch us, but God is good, and we trust that He will give us what we need to endure.

Have a great night!