March 29 Update

Weight: 2740 g (6 lbs 🙌)

Feeding: 51 ml over 45 min-every 3 hours (which is 13.7 ounces a day)

We had Matthew’s 60 Day Care Conference today, where his caregivers come together to give a report of his progress and discuss plans for his care moving forward. So today, we had the developmental specialist, a dietician, a doctor, and the one who will coordinate everything for Matthew’s discharge and get us connected with all the providers he will need moving forward all together by his bed to chat. They were all very kind and positive and we so appreciated their time.

The doctor discussed his oxygen needs and said he is doing well on what they are giving him but that he will probably need to go home on oxygen. He still has 2 holes in his heart as of the last echo cardiogram. They probably won’t do another one before he is discharged unless they see a need to, like something changing with the pressure in his lungs (pulmonary hypertension). We will go see a pediatric cardiologist sometime after he is discharged to check up on those openings. She also made sure we had good resources on Down Syndrome and discussed a little of what to expect after he’s discharged as far as his health care is concerned.

The dietician discussed his food. He is still receiving fortified breast milk. He needs the extra protein and calories because he was premature, but they are very happy with his growth. We will meet with a dietician after discharge as well.

The developmental specialist discussed his feeding progress, and this is definitely his biggest challenge. It’s a maturity/developmental issue. He still doesn’t quite have the suck, swallow, breathe pattern down very well. He gets tuckered out easily because of his underdeveloped lungs and low muscle tone and tends to choke and then all his numbers on the monitor drop. So we just need to wait for him to mature a little more. We want him to have good, positive feeding experiences.

The discharge coordinator gave us an idea of what to expect when that time comes and the appointments that will follow. Now it’s just a bit of a waiting game. They said they want to give him more time to develop and get more solid eating by mouth, even up to 4 weeks past his due date. 😞 Then they would consider sending him home with a feeding tube.

So overall he’s doing just fine. He just needs more time for his little body to figure out oral feeding. Barb, the developmental specialist assured us that they were watching over him very closely, and that it was such a pleasure to do so. We are so grateful for the wonderful care he is receiving.❤️