One Less Specialist

Another month has flown by. Crew is still trending up overall and we're happy with how well he is doing!

During this past month we visited the cardiologist with Crew and they cleared him to not have to come back again. Lucky Crew. PDA is closed as far as they could see, and his ventricle relaxation isn't an issue anymore. ECG and Echo checked out fine. Nice to have one less specialist to follow up with. Whew.

We took Crew to the HEFT (Home Enteral Feeding Transitions) clinic and were luck enough to add even more opinions to his feeding situation... Sarcasm aside, it's been crazy working with everyone who has an interest in his feeds and weight gain - pediatrician, pediatric surgeon, cardiology, occupational therapy, physical therapy, speech therapy, and now HEFT which added a Dr, resident, nurse practitioner, dietician, and another speech therapist. Everyone has suggestions and opinions. It's been overwhelming. Feeding Crew has by far been the most difficult part of helping him. 

The good thing that came from the HEFT clinic is that the doctor (last one to come in our room at the end of our 2hr appt) overruled all the other opinions we heard that day and said that we can skip fortifying the small (maybe 15-20ml) at the start of each feed that we give him via bottle before running his pump. Lindsay had discovered a few days prior that Crew was refusing bottles because they were disgusting from being fortified with Alimentum and thickened with gel mix - basically ruining Lindsay's breastmilk for Crew! 😅 So we've stuck with that since the appointment and it's been better. That Dr also told us that we can run a continuous feed from Crew's pump through the night as it might help us to get in more ml that are fortified in order to make up for the amounts that aren't fortified during the day. Previously we've been waking up every 3 hrs and running the pump for 45-60 min while we watch it to make sure he didn't aspirate.

It was also suggested to go back to the first formula that they put Crew on in the NICU when they started fortifying (Similac Total Comfort). It seems to have reduced the number of times that Crew has huge vomits (definitely not normal baby spit ups) and make him less fussy. Strange thing there is that it is milk-based, and so we've got more work to do to determine how that's affecting him.

Other than all that fun, we had our first Easter as a family of 5!

And the last thing to share I suppose is that we had Crew measured for a new 'turtle shell' since he hates his original one. The original was always too big since his O shrunk rapidly in the NICU as the fluids were absorbed back in, and it also had bad contact points on him that we could see were super uncomfortable for him. Since his O is tiny now, we thought we'd get a new one that could have better contact points on his torso and hopefully he won't completely lose it every time we put it on him to get in his Jefferson car seat. 🤞🏼We should get it tomorrow morning and then we might not be quite as house bound.