Our Family in a Snapshot: Post-Op Day 5: Can I get some food please?

Chest tube is out! YAY! Watching the NP take the tube out was fascinating. Cut the stitch and pull. Very medical. We love no tube for two reasons: 1) The drainage in his chest has stopped and 2) Only one more wire (the central line) holding us back from snuggling. Actually, we can hold him now if we want but there are just too many things we can pull out that make us nervous. Until the central line comes out JD gets lots of head rubs, hand holding, and parents with bad backs leaning over the crib.

Last night was a rough one for the little man (and Nate given it was his night shift at the hospital). He is standing his ground hating the formula. Gagging, coughing, and spikes in temp lead to taking a step back and going back to IV fluids. Turns out he was dehydrated from lack of food and fluids and the fever. Labs came back fine with no infection, x-ray showed his lungs and insides look good, and Echo showed no fluid build up. All good things. After talking to Dr. D and Dr. Cardiology we feel the spike in temp could be very normal post op as he works on regulating his own body temp.

Dr. D, Dr. Cardiology, Dr. Cardiac Surgeon, and the NP all confessed they absolutely believed JD would still be vented (using a breathing tube) at this point in his recovery. While this feeding dilemma is a set back the doctors have not stopped grinning ear-to-ear with the great news of JD's strong breathing. He spent most of the day with his saturation levels around 97 without oxygen. From a cardiac standpoint, from a respiratory standpoint, and from an overall health standpoint JD is stellar and ready to head home. However, we need to work this feeding piece.

When we say his numbers look good this is what we are looking at: 98 = heart rate, 27 = rate of breathing, 100 = oxygen saturation level

At this point we have backed all the way up and we are starting over. Very slow continuous feeds with Pedialyte (yes I know Pedialyte is just water with chemicals which I hate but this mixture is keeping JD hydrated so we will take it). Then we move to half Pedialyte & half formula, then full formula, then slowly move back to his final volumes. It will take the next few days to ensure we can slowly ramp up but this is the best process for him.

Honestly, I was a bit frustrated and disappointed this morning at the set back but I realized this feeding issue is okay. Being on a floor with cardiac babies is very humbling. Watching doctors run down the hall as the “code” alarm is going off, walking past 5lb babies who just had open heart surgery, and seeing parents quietly have conferences with the doctors makes me realize we are so blessed with JD's "complication." When the doctors round we are their last stop because JD is the least sick. This is a good place to be. I keep telling myself everyday how wonderfully amazing JD is doing and this feeding thing can be fixed. Everyone has a picky eater, right?

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Wanted to give a shout out to JD's big brother Connor who has been handling mom and dad's absence like a champ. It might help that we took him out yesterday for the biggest ice cream cone he has ever seen. He asks about JD, he misses JD, and he wants to Facetime with JD every night. What a great big bro!

Ghirardelli Cookies & Cream

Also, a HUGE shout out to the fantastic nurses who have been crushing on JD. They have spent the last 5 days working with us to find the best balance for JD. If you have ever spent an extended time in the hospital you can appreciate the importance of the nurses. Not only are the nurses amazing on our floor but our very own Nurse Amy from the NICU stopped by to give high fives and kisses to JD.

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The plan for tonight is to keep JD comfy and let him sleep. Continuous Pedialyte throughout the night then in the morning we will start adding formula. Prayers for a smooth transition. Until tomorrow . . .