It is the one constant in our life since the moment Tucker was born. A monitor. Every single moment of Tucker’s almost 9 months has been captured in numbers. In vital signs. His heart rate. His respiratory rate. The oxygen saturation in his blood. The first 3 months of the NICU experience, the parents spend watching, staring, and willing the monitor to go a certain direction. I journal-ed about it one of those first weeks we were in the NICU. When we would visit Tucker, the majority of our time we spent peering intently at the monitor. His vitals were all over the place. All the time. You didn’t want to stare at the darn monitor the whole time. But you couldn’t help it.
We would watch as his heart rate dropped from his normal 160 to 133…112…100…90-this is the moment of the blaring alarm. The brady alarm. The moment the nurses spring to action-opening the isolette doors to “stimulate” Tucker-a light touch on the foot, a little rub on his back to try and get him to remember to breathe. If his heart rate continued to drop (which it did often, especially the first months), more aggressive stimulation. More coaxing from the nurse. More nurses coming over to offer help. More pleading to God from Darrin and I. Please. Please. Please. ‘Come on buddy-pick it back up.’ And then he would pull it back up. We would let out a breath. And then watch the monitor to see if he was going to do it again. It was maddening.
We’ve seen his heart rate drop into the 40’s more times than we can count on our hand. Scary doesn’t begin to describe it. Helplessness and panic wash over your entire body. If a baby doesn’t respond to aggressive stimulation (tapping, rubbing, moving him to try and get him to remember to breathe) and doesn’t pick his heart rate back up-the nurses begin to manually pump 100% oxygen through a bag over his nose and mouth-it’s called “bagging”. It’s as close to resuscitation as you get. Tucker was ‘bagged’ several times during his NICU stay. It is the most terrifying thing to watch. I can’t talk about it still. I will never forget it. Ever. It is why I get panicked when I’m standing in a Wendy’s and the fry machine alarm goes off-it sounds just like a brady alarm. I can’t take it. Tucker’s brady record was 16 in a single day. Over the course of his NICU stay, he must have had over 300 bradys. It was rare for him to go 24 hours without one. Parents eventually learn not to panic when they hear the alarm. We learned how to stimulate him ourselves in case the nurse wasn’t standing right there. We tried to train ourselves not to stare at the monitor. I was worse than Darrin at this game. Our primary nurses had to scold me on more than several occasions. “STOP watching the monitor!”
Eventually, preemies learn to remember to breathe. Their bradys become fewer and farther between. Even when they do brady, they self recover before a nurse even has time to get over to them. Tucker didn’t outgrow them quite as soon as some preemies, he was still having bradys when he was discharged. So, we went home armed with a brady/apnea monitor. We didn’t make it to our exit before he alarmed in the car on the way home. It’s strapped to him all day and night except when he’s taking a bath. We can’t see actual numbers, but we see green lights that flash to correspond with his heart rate and breathing rate. If he drops either of those things to an unacceptable level-it alarms. Loudly. And the offending light turns red to tell us if he dropped his heart rate or if it was his breathing rate.
The last 2 months, the alarms have all been because his leads weren’t picking up. He hasn’t actually had a brady or apnea event in over 60 days. (Wow). Some of you have followed us since the day he was born and almost every day you prayed for a day with no bradys. We’ve had 60 of them! Take a moment to say thank you to God, right now for your (and our) answered prayer! This is a big one. The lung doctor downloaded his data from the monitor this week. He came into the room, said Tucker looked like a Moose (he’s almost 15 lbs!) and he said, “Alright-I’m going to discontinue the monitor! He’s doing great.” Instead of the “Yay!” that should have crossed my lips, out of my mouth immediately came…”Um. Can we keep it for another month…you know for at night when he sleeps?”. The doctor smiled and said, “You know…he has to be off the monitor by the time he’s walking. But, yes-I’ll let you have it for ONE more month, only at night. Then it’s gone.” Man, not only is he a smarty pants but he’s a stickler too. Only 30 more days?
I hated the monitor. I really did. Still do. It is a hassle to sling it over your arm when you take Tucker more than 5 feet. It’s annoying to be startled awake from a sound sleep to a “leads-not-picking-up” alarm. It’s hard to pass up the cute pajamas that zip up because you need button up pj’s so his lead wires have a place to come out the bottom. It’s maddening when the battery alarm goes off on your way home from a doctor’s appointment because the short 3 hour charge is gone. And we’ve just gotten good at the stroller/car seat/monitor transfer (“1-2-3, move”). So, why in the world did I ask to keep it? Tucker is surely thinking, “get over it mom. I got this. I don’t need that stinkin’ monitor.” What is wrong with me? This is what we’ve wanted since day 1. Didn’t I JUST post about this last week-excited about the prospect of no monitor. I even asked you to pray about it. And we got an answer! So. What’s my deal. This is a great thing. Right?
Yes. It is definitely what we want. But I’m going to have to ease into it. When you’ve seen your baby drop vital signs in a matter of seconds, it scars you a bit. Who am I kidding? It scarred me ALOT. When I heard that alarm in the hospital, when I hear it now at home, it stops you mid-sentence, mid-chore, mid-sleep, mid-everything. So while I hate it-the monitor gives me comfort. Me and the monitor? We’ve come to terms. We’ve come to a happy medium. So I’m not quite ready to give it up. Tucker’s been attached to one for almost 9 months. There is solace in waking up in the middle of the night and looking over to see two green lights flashing happily.
The first night we go without it, I will no doubt get out of bed 100 times to check on him. If I sleep at all. The day is coming. In 25 days to be accurate. And I’m sure I won’t be ready. We have trusted God with so much and he has answered in the biggest ways. He’s got this. He has brought Tucker through so much. A silly monitor is nothing. For now, we’re easing into it 🙂 We’ve taken a big step in preemie world. It’s a big step for Tucker. It’s a big answered prayer-thank you Lord. Team Hucks has gone wireless.
We are seeing the pediatric neurologist tomorrow for the first time. I’m nervous but feel like Tucker is doing great with his milestones, specifically his motor skills so far. I have no idea what to expect-I’m guessing she’ll do a series of assessments. Pray for a good report.
We’re excited to spend our first Thanksgiving together. Even though we’re in isolation and we won’t be with family, we’re overwhelmed with thankfulness. The prayer box is open for Darrin as I have decided that our isolation is the perfect time for me to attempt to cook (bake? roast? what do you do with a turkey?) a turkey. I will tell you that our first married Thanksgiving (picture whole family, cute place cards, turkey apron) I set the oven on fire. Twice. But I’ve come a long way. And I’ve temporarily lifted the ban on Paula Deen, so we should be in good shape. I’ll post pictures of our first Team Hucks Thanksgiving meal in my next post. Unless the turkey turns out a-la Clark Griswold in National Lampoons Christmas Vacation. In which case, I won’t mention it at all and won’t ever try and cook/bake/roast/fry a turkey again. Wish me luck.
Here are our prayer requests:
- Peace of mind for mom and dad as we get used to a monitor free world
- Good report from the neurology appointment
- Continued good weight gain
- Developmental milestones (sitting up unassisted specifically)
- That Tucker will stay healthy this winter season
“When I am afraid, I will trust you.” Psalm 56:3
Click here for the homecoming alarm (didn’t make it home without one!): Alarms…Ughh