Hazel Says, "Don't Forget Me!"

... and a video of Jude

Adorable Little Jude

Jude has gotten much more interactive and smiley in the last couple weeks. Check him out.

Results...

We got a call from the pulmonologist this morning with the preliminary results of the sleep study. It looks like Jude will be staying on the same setting and Hazel is getting put on oxygen for sleeping. :( She was having some irregular breathing patterns and would do some quick desats as a result. Soooooo, during naps and nighttime she will be on the oxygen. It definitely feels like we're going backwards. And, we're all the more frustrated now that we couldn't get her in for an appointment earlier. She's been home for over 2 months! We do have an appointment on April 8th at UCLA for a second opinion. We are already very impressed with them in terms of scheduling. They are actually moving other patients so that our kids can come in together! What a concept! Their scheduling department is friendly and you can actually talk to a person rather than leaving a message. It's a farther drive, but if we like the doctor, they are way more accessible and we plan to switch. We need to get these kids strong and off the oxygen before we can think about moving anywhere! Please pray for speedy lung development.

Hazel should be starting feeding therapy next week. Please pray for her. She just does not like to eat. It seems to cause her so much discomfort and we now fear she is developing aversions. She's still growing, but much slower than before. Some days she seems to do quite well (like yesterday) and other days, we think she'd prefer to eat nothing at all (like today). It's such a roller coaster. She's still quite smiley and interactive when she's awake, but often times during and after feeding, she just shuts down for long periods of time. We just want her to enjoy eating and have her be healed from any physical and psychological problems that are hindering that from happening. Thank you for your prayers.

Sleep study

Children's Hospital called this afternoon and scheduled both kids for sleep studies tomorrow morning. Nothing like short notice! At least something is happening! We're hoping they might be able to monitor Hazel eating as well since they said we could feed the kids there. So, we rescheduled Jude's scheduled appointment for tomorrow and will be heading to Children's.

Also, if you haven't already seen a few family pictures of us, check out Christen's blog and scroll down a few posts.

Heavy Hearts

Our hearts are heavy today as we heard that one of our NICU friends passed away yesterday. Please pray for that family. This little girl came so far and lived over 4 months. We can not imagine the grief her parents are dealing with now.

As for our crazy house, we continue to pray for the development of our kids. We continue to worry about Hazel's eating and think that there's more than "just" reflux going on. We think she has some sensory issues as well. She qualified for feeding therapy, but it's taking forever to get going. Please pray that that happens SOON! We also think she may need other OT services and are looking into getting that set up.

Jude's becoming quite interactive. He's smiling a lot and cooing as well! Anytime we try to catch a smile on camera though, he turns it to a frown. Silly Jude. He's also losing all of his hair. Noel has always been afraid that any kids we had would inherit the Dykema male patterned baldness. He's quite concerned that Jude's showing signs already. :) I assured him that it's quite normal for babies to lose hair.

Off to the doctor!

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.