Set backs are no fun

Today started bright and early with a visit to the hospital for the 7 am feeding. Both Ethan and Sydney were wide awake and ready to eat. They both did really well and the lactation specialist was their nurse this morning. We were encouraged by the news for our 4:00 pm appointment with the Occupational Therapist, Annie. We knew that if they did well, she would recommend nutritive feedings and we had a chance of the babies coming home next weekend. The pressure was on and I felt it today. I told Doug that I felt like I was preparing for a final exam but there was nothing I could do to prepare. The 7:00 am feeding boosted my confidence that they would do well.

We got a call from the doctor with good news this morning after we were home. They both gained weight last night as well...some big numbers.

Ethan gained nearly 100 grams to 1870 grams--moving up to 4 lbs 2 oz! Above 4 lbs! This also means more milk--he is up to 37 cc per feeding.

Sydney gained nearly 50 grams to 1750 grams--moving up to 3 lbs 14 oz. Also more milk--35 cc per feeding.

We eagerly anticipated our appointment with Annie. With a nutritive feeding, they weigh the baby before and after. Every gram of weight they gain tells them that they got 1 ml of milk. They weighed Sydney and she appeared to be doing well. Annie asked that she be given a little oxygen to help her with her suck, swallow, breathe. That made me discouraged at first, but Annie explained that it was to help them learn how to handle swallowing correctly because it is hard to correct if they learn wrong. She said that if they are out of breath they will swallow and pant a little to bring their oxygen up--which is a bad habit. We were okay with the oxygen after that explanation. After 30 minutes of feeding, we weighed her and she hadn't even gained 1 gram. First bummer.

Ethan was next and was too sleepy to eat, despite our best efforts to wake him up. It's pretty difficult to wake them and keep them awake. He did okay considering. Second bummer.

Annie recommended partial non-nutritive feedings. This means that I empty most of my milk and then try to feed them. She recommended that we didn't weigh them so we wouldn't get disappointed. They will be allowed to have oxygen during feedings and we'll continue to do 2 per day. Third bummer.

Annie said she would be back to meet with us next week and we would re-evaluate to see if they are ready for nutritive feedings. She won't be back until the end of next week, so our appointment is next Friday afternoon. They will be 1 day shy of 36 weeks gestation which is when the babies normally can suck, swallow, breathe and are ready for feedings. That means that they won't be home until the end of February if we're lucky. Fourth bummer.

We held the babies after Annie left and did our best to regroup after being so disappointed. Sydney decided now would be a good time to de-sat (this means her oxygen saturation percentage went down below 89%) and her lips went blue. The nurse tried to rub her a bit and then ended up giving her oxygen--mostly because it was close by and hooked up from their feeding. Fifth bummer...and a little scary for us. We felt pretty helpless watching the nurse help her breathe. Sydney gets pretty wiped out after feedings and normally de-sats a bit. Tonight was the worst though with the blue lips. Not a great end to our visit.

We quickly grabbed our things because it was shift change time and we needed to leave. No good night song tonight...hope they sleep okay. We've been in good spirits most of the time and the nurses have commented on how happy we are and laughing a lot. Tonight, we aren't in the best of spirits. I was feeling pretty confident that they could be home by next Saturday, so we're pretty down tonight. Finding myself wishing I could've done a little better at keeping them in "the oven" for a few more weeks.

Tomorrow is a new day so I think we'll go to bed early and hope the new day is better with the sunrise...