It has been an eventful time since we last posted. Paul got through the NEC scare with flying colors and was able to resume eating again last Monday. He was taking a lot by bottle and we started to think that perhaps he would not need the feeding tube. However, his heart works twice as hard to eat as a typical baby’s and the tube had to be put back in on Wednesday to ensure he was getting the volume he needs to keep his shunt wet. On Thursday morning, while his tube feeds were going, his saturations went down to 60, it was just for a second but it was very scary and as a result the team decided to hold his feeds for 24 hours yet again. Thursday evening Paul was inconsolable and was so hungry and so upset. His heart rate was up to 215 and he was turning purple. He was gagging from the tube being in his throat so around 9pm Dan and I officially lost our marbles. We pulled the tube and fed him 25 ml by mouth against doctor’s orders. He fussed the rest of the night and at 3am he was again inconsolable with a heart rate that would not go down, so we fed him again. We hate the tube because it makes him uncomfortable, it hurts his throat and he refluxes with tube feeds. We really thought he might not need it. It is an important balance between getting the calories and volume in these babies to get them fat for their next surgery and dealing with reflux, discomfort, and the trial and error that comes with tube feeding.
Friday morning the attending doctor who made the call to hold the feeds was NOT happy with us. Dr. Exil is actually one of the nicest pediatricians I have ever met. He loves Paul and cares about him and has his best interest at heart. I was sad to disappoint him but we were also at the end of our rope. I thought for sure we were not the first parents to do something like this but evidently we are in an elite club of rebels. We spent Friday morning in meetings about feeding, family-centered care, goals, and trust in relationships. In the end, Dr. Exil allowed us to see what Paul would take by bottle without the tube in for 48 hours. By hour 20, it was clear that Dr. Exil and the rest of the team were right- Paul needs to be fed by mouth AND by tube. We put the tube back at 3am Saturday morning and in the last 36 hours or so Paul has been taking some food by mouth and some by tube. Today, we are going to see if he tolerates a higher calorie fortified breast milk and formula.
I heard from so many moms and doctors that feeding was the hardest hurdle to overcome and they were right. I really had no idea how challenging feeding would be but we are staying strong, hanging in there, and getting better at it all together. In order to go home, we need to be on 65ml of 30 calorie formula/fortified milk every 3 hours. We are close and are hoping that the next few days will be days of progress. To say that I am humbled by the grace and patience that the team (particularly Dr. Exil, Kayla the Dietician, and Denise the world’s greatest speech therapist) has shown to us in the last few days would be an understatement. It is important to collaborate with them but also back down when you are wrong and fight when you think they are. We are lucky that Vanderbilt is a family-centered place. I am not sure they know what to do with us half the time because we are so involved but our relationships will continue to evolve overtime.
As always, Dan and I feel blessed to have each other and our little family. Your prayers of hope, health, and love are SO appreciated. Paul is still fighting the good fight and so are we. Thank you for keeping up with our journey and supporting us even when we lose our marbles!