Update

It's been a crazy week with doctor visits every day. The pulmonologist we saw did not really ask us any questions about how our kids were doing, what we thought their needs were, or offer any type of helpful information. We thought she'd want to evaluate Hazel feeding since that is the reason Hazel is on oxygen, but that wasn't even mentioned. Instead, she looked at their NICU history, did a chest x-ray, did labs, and said come back in 4-6 weeks. Hazel's already been home for 10 weeks. I'm sure her NICU history is relevant, but she's grown so much since then. So we tried to schedule an appointment for 4-6 weeks, but she (of course) did not have any openings for another 10 weeks!!! That means no changes for 10 weeks, which is just unacceptable. Our kids need to be followed more closely than that to monitor whether their needs increase or decrease. I could go on all day about other aspects of the appointment and our frustration, but I'll leave it at that. We found a private practice pulmonologist in Pasadena who takes preemies, so we made an appointment with him in a couple weeks. Also, I was talking to another NICU mom yesterday who is having scheduling difficulty as well, and she said she's heard great things about UCLA. So, we're also going to check that out. It's a bit farther, but that's not an issue for us if they are more accessible. My friend's pediatrician told her that kids discharged on home oxygen who get followed by Children's Hospital doctors are usually on oxygen for a year due to lack of scheduling. That is just not going to work for us. If our kids need it for a year, that's one thing, but if they don't, they shouldn't be on it due to lack of doctor's availability.

As for the GI appointment, the GI doctor is not concerned. Hazel has made such great progress on the growth chart that there's not much more we can do other than be patient with her long feeds and hope she doesn't throw up. :) Noel has much more patience than I do, so he's been on Hazel duty most of the week. We don't want to put her on any stronger medication since she seems to be doing "okay" and there are risks for adverse side effects.

Oh, the pulmonologist did order a breathing treatment (broncho-dialator) to be done to both kids twice a day. This adds about 30-60 minutes of care to them each day. It's about enough to put me over the edge. Feeding, going to the doctor, calling the doctor, changing diapers, holding, playing, washing, pumping, sleeping is enough. But, we will now try to make time for the breathing treatment....

We've been very blessed with meals this week as well as some cleaning help, and baby holding help. These are all great things and make our lives a bit more manageable. I keep saying, "when's it going to get easier?". The answer is unknown, but it will probably be several months until our kids are on a better road to health. We pray for strength to make it to that point....or a bigger place to live so we can have a live-in nanny/nurse/housekeeper. :)

This coming week looks a bit daunting as well with 4 days in a row of doctor's appointments (all for Jude this week). It seems each appointment just results in more appointments (that was the case this past week), but hopefully those appointments become fewer and farther between.