Well, it happened. A week ago today, they decided Ty could safely come home. I was excited and a tiny bit anxious. Discharge took a while. We had to get all of his paperwork in order, meet with the dietitian to get the "recipe" for his higher calorie milk and directions on when and how to increase feeds, get his medications and a lesson on how to give those, and get a crash course on how to "drop an ng tube." It was a whirlwind of activity and excitement and before I knew it, we were loaded in the car and headed home.
When we got here, my "excited and a tiny bit anxious" quickly turned to "anxious and a tiny bit excited." As soon as we got home we had to set up to do his first feeding. I suddenly felt like we had come home with half the hospital as we put together an IV pole, unloaded tubes and bags and monitors and started hooking our little guy back up to wires and tubes. Freedom was short lived. To add to my anxiety, I failed to warm his food before I put it in the bag and after his first every at home feeding was complete, he proceeded to spit it ALL back up. Spit up is a normal baby thing, but not so safe when you have left vocal cord paralysis - freaked mommy out! Baby Ty didn't seem bothered at all, of course.
(Chicks dig scars... and dimples too!)
We survived our first night at home with very little sleep. I should say, very little sleep for the grown ups. All three kids slept great, of course. I am an eternal optimist, so I have to point out that Ty being on a feeding tube has a silver lining - he gets continuous feeding at night (a constant drip), so he sleeps all night long! Unfortunately, the pulse ox monitor they had us using was going off every few minutes. Enter my first call to the on call cardiologist. He said not to worry - the monitor was going off at 92 (% oxygen saturation is what we are talking) and his goal was actually over 88. Good. As long as we stay out of the 80s, we are okay. Problem: the monitor is VERY loud and obnoxious and sill set to 92. Hence no sleep.
Saturday the sun came up and I was feeling pretty good. We were getting in snuggle time and enjoying having our boy home. He had a little congested sounding cry after his feeding and that had us concerned, but we were being overly observant. As the day wore on his monitor slowly drove us crazy sounding the alarm and got me thinking maybe I should give him a once over for the "warning signs" we'd been told to watch out for. I lifted his onsie and to my horror saw that he was "retracting" (pulling in under his lungs when he breathed). That's a sign of working too hard to breathe. He also head bobs off and on, also a sign. Then I got to thinking of the hours-long stretch he had been sleeping. That's a sign as well, overly tired and sleepy. I got more and more concerned the more I thought and finally put a call in to the on call cardiologist again. He didn't sound overly concerned - not a call 911 kind of thing, but asked me to bring him on in for an evaluation. So, we headed to Vanderbilt Children's ER and they were waiting for us when we got there.
(After his 24 day stay and only one day home, Ty thought the ER felt like home sweet home, lol)
Turns out, Ty was fine. Apparently his base line includes half the darn symptoms of respiratory distress. He is still tachypneic, head bobs off and on, has minor retractions all the time, and well... he's a newborn, so the sleeping all the time is technically normal. So, we were thanked for coming in, encouraged that we did the right thing, and told to pay close attention to how he looked right then and there and to use that as a base line. All the same warning signs, but worse than what he was already doing would be a bad thing. This boy is giving mommy and daddy major gray hairs! I left wishing I had a medical degree - it's a lot of pressure for a parent with little training to make judgement calls on major and potentially life-threatening stuff like this! We have monitors, feeding tubes, heck they even sent us home with a stethoscope, but we still feel like we are winging it. The good news is, they faxed an order to have our monitor changed to alarm at 88, so we could at least get some sleep!
Sunday dawned a new day. I would like the record to show that I made it through the entire day without calling the on call physician. Yay mommy. I also managed to get both Ty and Ava Grace to sleep at the same time. Sweet victory. Sunday was a good day - full of worry, but that seems to be the norm these days.
Monday we went to the pediatrician for his first check up there. Getting ready was a trip! We had to load up baby, bag, and the feeding pump and bag of milk. Oh. My. Word. Traveling with all these tubes, bags, and machines is no easy task. That was an adventure. Ty "ate" in the waiting room while I filled out paperwork. Then we were called back. It was a quick evaluation in which they said he looked good, but wanted to see him again Thursday (today, actually) so they could spend more time going over his records and more time with us. (Shameless plug here - I LOVE our pediatrician. He is awesome. William Johnson at TN Pediatrics in Hendersonville. Take your kids - he's the best.) When we left the pediatrician's office Ty threw up all over himself, me, and the car seat and COMPLETELY freaked me out. Later Monday evening he did it again. Ring, ring - another call to the on call cardiologist. Spitting up is okay, but not great. Watch him for changes, "too much," etc... another one of those judgement calls we have to make.
(This boy seriously LOVES his "fish tank" - thank you Hutchings family!)
Tuesday home health came! This was a pleasant visit, but she observed Ty on his pulse ox monitor and was concerned that he might require oxygen. Great. She called the cardiologist. The alarm was sounding too much. The cardiologist moved our appointment up. Long story short, we stressed, he kept dipping into the 80s too often for comfort. Come to find out much later in the afternoon, it was total user error. The monitor wasn't on tight enough and he was (and has been for the last couple days) keeping his sats between 94-100!! Go baby go! Big sigh of relief.
Wednesday... ah, yesterday. The first day his monitor hasn't gone crazy and we haven't worried ourselves sick. No calls, no nurses or doctors, just a day at home with our sweet baby boy. We did all then normal stuff. Normal (for us) feeds with only 2 very small spit ups, a bath that he didn't seem to hate too much, and home cooked dinner at the table together as a family. Yesterday helped me know that eventually we will adjust to this. Eventually we won't worry every time he takes a deep breath, or shallow breath, or sneezes, or looks too sleepy, too awake... too..... anything. One day we will settle into our new normal. For now, I'm just trying not to be scared of my own kid.
(4 weeks old!!!)
Today Chris is off taking the girls to school and mom's day out while I hang with Ty. When he returns we'll load up our guy and all his gear and head back to the pediatrician for our follow up. After that, we are on our own until home health returns on Tuesday and we follow up with cardiology on Thursday! Hopefully it will go smooth! This is an adventure, for sure. Thank God for his presence in our every moment. We wouldn't survive without him.
This week's prayer is to heal Ty's heart and speed his recovery. We would love to see big improvements and hear great news when we head to cardiology clinic next week! We also ask for prayers for mommy and daddy. We are both supposed to head back to work after next week. Not sure how we'll manage all of this and work too, but we aren't sure we can afford to take more time off. Lord, please guide us in our decisions, prepare us for our days ahead, and provide for our needs. We are so thankful that God has brought us this far and taught us so much. Thank you, Lord, for this miracle little heart warrior and for entrusting him to us. We aren't sure why you chose us, but we love him so much and are doing our very best to take care of him.