Day 15 – Big Decision

What a week! It was a week ago today that Lucas ate for the first time. The doctors started him on 10 ccs every 3 hours and he seemed like he wanted more. The next day it was 20 ccs, and the day after that 30 ccs. We knew his goal was 45 ccs – which he hit on Saturday. On Sunday, Lucas moved to on demand feeding and he started eating 55, 60, even 77 ccs. There is one constant with every nurse, resident, or neonatologist that sees Lucas – amazement. How could a baby that didn’t even have a connected esophagus a few weeks ago eat so vigorously? We’ve learned that usually it takes several weeks or even months to get most babies with an atresia to eat. In Lucas’s case, I’m pretty sure he would have taken a full bottle on the first day.

In fact, somewhat ironically, his vigorous eating is now his biggest issue. Lucas eats so fast in fact that he has difficulty breathing. Over the last few days, he has had a few spells where his heart rate drops dramatically (from 150 to 50-60) and his oxygen saturation drops with it (from 95%+ to 75% or so). Let me just say – looking at a blueish, limpish baby is definitely not a fun experience. There are two possible causes for this. The first is prematurity. Premature babies don’t always coordinate suck, swallow, and breath. Sometimes they only do two out of the three. Sometimes, preemies just “forget” to breath. If this is the case, Lucas will soon get much better with his feeds – after all, he’s only had a handful of days of practice with full feeds. The second possible reason for the heart rate and oxygen drops is that the repair on his esophagus is closing – something we are obviously praying is not the case. If this is the case, Lucas will probably continue getting worse with his feeds.

Now, we have a decision to make. It is a great “problem” to have, but it is very difficult decision. The docs just love how Lucas is doing. His arterial line is out, his chest tube is out, his feeding tube is out, his PICC line is out. He is pooping (a lot), peeing (usually when is diaper is off), and gaining weight (now 5 lbs 11 oz). Throughout the day, Lucas does great. The only time Lucas has any issues is during feeding, when we are watching him. And specifically because Lucas only has issues when we are watching him, the docs are letting us decide. If we want, if we are comfortable, we can take take Lucas home… tomorrow! If we are not comfortable, we can let Lucas stay in the NICU until he stops having drops in his heart rate… maybe that will be Monday or maybe weeks from now. It’s a big decision.

We’ve had a lot of big decisions over the past four months. A lot of things to worry about. A lot of times when the right thing to do wasn’t totally clear. The one thing we’ve learned through this struggle is the power of prayer. For me, asking God to take away my worry and give me peace has been the only thing that worked. And asking God to give us answers to the difficult questions is the only thing that has ever brought us any clarity.

Tonight, we are “rooming in.” St Joes has a special room in the NICU recently remodeled by the Phoenix Suns organization. It’s awesome – from the basketball court flooring to twinkling stars in the ceiling. Tonight, it is just Jill, Lucas, and I in this room – and only us. It’s a practice night. It’s handling our miracle baby by ourselves knowing that the safety of the incredible St Joe’s nurses are just outside the door. It’s our first night as parents. And if God answers our prayers once again, tomorrow will bring some clarity for our big decision. Is it time to go home?


4 thoughts on “Day 15 – Big Decision

  1. This is only the beginning of your parenting journey and already you are pros about letting God help in those decisions. Fortunately for Lucas he has two incredibly intelligent parents. The only advice I think appropriate beyond praying is to trust your instincts. You are his parents and whatever decision you make will be the correct one for you all. Look how far you’ve come already!! Our love and prayers are with you. Jc and Jen

  2. What a gorgeous family!! Enjoy your first night alone! You guys are fantastic parents already, you will make the decision that’s best for you and Lucas. Sending my love and prayers!

  3. Lucas, I had no idea that you had the kind of green that would get you the hard court suite at the Palms. You are a very tiny VIP. Keep it cool.

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