Yum ... Feet!

Hazel and Jude have a new trick to show you. Both of them are fond of sticking their feet in their mouths every time they are on the changing table. Good thing they can't walk yet, or this would be a yucky trick.

6 month pictures

These pictures are a bit old now, but we did have their 6 month pictures taken (when they were almost 7 months old). Our talented neighbor, Sara, of www.onelove-photo.com generously agreed to capture our little ones. Unfortunately, they were not very smiley that afternoon. Oh well. They still look cute!

Classic Jude look

Happy Birthday, Grandpa!

Sorry we can't be there to celebrate with you. Maybe next year!

Sleep

It took a week of no therapy for us to realize that our kids really need to nap more. Both of our therapists canceled this past week and it gave us an entire week to create our own schedule. Therapy is only 2 days each week, but it seems that it really affects our overall schedule. We have to revolve our schedule around having the kids ready, fed, and awake for the therapists (or wake them up if they happen to be sleeping). It makes it impossible to keep a consistent daily schedule. But, we found out this past week that our kids do MUCH better when we can have the same schedule each day and not have to be woken up for therapy. They took great naps and were much less fussy this past week. I guess we'll just have to make sure the 5 days they don't have therapy are all pretty consistent because we like happy, sleeping babies!

Good growth? I don't think so.

We had an appointment with the GI doctor yesterday. For the first time, we were not feeling desperate since our kids are eating better than they have been every other time we've gone. However, their weight gain over the past month was not that great. Both of them have fallen farther away from the curve in terms of weight (this is the first time they haven't followed or exceeded the growth curve). However, they both jumped up on the curve (actual age measurements!) for length. Jude is at the 3rd % for length and Hazel is at the 10th % (for 7 month olds...yay!). The doctor said we need to increase their volume and not feed them solids since they are lower in calories. What a bummer. We gave Hazel sweet potatoes the other day for the first time and she loved them! It's a challenge to get them to eat more. Although they are eating better, they would still rather eat less than what we are feeding them. We feel bad for stuffing them so full. But, since yesterday, they have been eating almost everything we've been giving them. So, maybe our new plan will work just fine.
We know their weight gain wasn't great this past month, but they look good. I can't imagine how chubby they'd be if they were actually on the weight growth chart. They'd look ridiculous! We're praying that they bulk up a bit before their next appointment so that we can go back to trying solids and try to decrease the calories we put in their bottles.

Other than that, it's been a pretty quiet week around here.

Happy Father's Day/Go Tigers!

Jude and Hazel got Noel a ticket to the Dodgers/Tigers game tonight for Father's Day (accompanied by some friends). We all dressed for the occasion today. Go Tigers!

No kids!

We did it! We went to the U2 concert on Saturday thanks to a couple of great people who offered to watch our kids. We had a GREAT time and the kids did well! Hurray for dates!

Saturday Morning Jam Session

Happy Saturday morning! Here is a little clip of Jude making some music. He doesn't hold the maracas here as long as he often does, but he does manage to accidentally give himself some accompaniment!

Fussy

Nothing really new going on here. The kids have been SUPER fussy the past couple days. We think they're teething. It's quite early, but they appear to have all the symptoms. 2 teething kids is quite a handful!

Apparently the oxygen company didn't receive the doctor's orders to pick up the equipment until today, so they won't be coming until tomorrow. It'll be great to see it all go! More champagne in order? Or maybe just a trip to 21 Choices? We'll see!

We have our first NICU follow-up appointment tomorrow. All kids who spend time in the NICU get followed periodically for 2 years to check for developmental issues. We think our kids will impress the staff! We are most excited to have the OT evaluate them again. We loved working with her in the NICU and the kids are doing so great now!

It's official: no more oxygen!

The pulmonologist read the results of Jude's sleep study today and confirmed our suspicions: he no longer needs any oxygen! The company will probably come by tomorrow and take away all our tanks and get the oxygen concentrator out of here. Thank God!

"I'd like to propose a toast to no more oxygen."

No more oxygen?

We had an appointment with the pulmonologist yesterday, which went very well (other than the 2 hour car ride home due to traffic, Jude screaming, Jude eating, and Jude barfing). We were able to pick up the equipment for the sleep study for Jude to test whether or not he still needs oxygen for sleeping. We did the study last night and we think it went great! He made it through the whole night without setting off the alarm (which would indicate that he was desatting too much)...unless we slept through the alarm, but we're quite sure we didn't. So, we're very hopeful that once the doctor reviews the test, she will order no more oxygen. We will return the equipment on Monday and are hoping she'll be able to review the results Monday or Tuesday.

As for the breathing treatments....ugh. The doctor said she usually continues them until the kids are a year old, but never beyond that. We told Jude, "Don't worry, you only need these treatments about 300 more times." Good thing he doesn't know how to count. Too bad we do.

It's possible that our apartment will be machine free and oxygen tank free a few days from now. So, if any of you are having trouble breathing, don't come here for help.

Daddy/Hazel games

Hazel loves to grab at everything these days. She wants to drink from my water glass, talk on my cell phone (don't worry--we don't let her!), and rip our noses and lips off our faces. Here's a clip of her having fun with her daddy, grabbing at his hair.

Scratch

"I won't let my mommy cut my fingernails. That's why I have this scratch on my nose."

Who needs a play mat?

Hazel has been rolling back to front and front to back for a few weeks now, but never in the same direction. We put her in the center of the mat on her back today (2 different times) and found her rolled all the way off. She's getting mobile!

Off to Target we go!

Good News

We got a call this morning from the GI doctor and Jude's liver enzymes are all normal now. Praise God! He's done with another medication. Yay!

Hello

Hazel is getting bored with the playmat, so Noel set her up in her bumbo to change things up a bit. She loves it!

"Hello!"

Concentrating very hard.

"Hello again!"

"And hello one more time!"

"I might be worried...

...or maybe not!"

The Week Ahead

We are grateful for the prayers of so many and continue to ask for you to pray for Hazel and Jude. We have an appointment at the pulmonologist this Friday and will repeat the sleep study for Jude sometime over the weekend (assuming we can get the equipment). We are praying that his lungs have gotten stronger over the past month and that he will be done with the oxygen completely. Wouldn't that be amazing? It would be so freeing! The doctor called us with his electrolyte results already and decided that even though things look good, she doesn't want to wean him off the meds until after he's done with the oxygen. Boo. Oh well. Hopefully it will all be done within a couple of months. (As a side note: Lung strength often correlates with growth, and since Jude's growth hasn't been outstanding over the past month, we're not sure how much stronger his lungs got.) We are also praying that both of their lungs are strong enough to not need breathing treatments anymore (they are very time consuming and Jude hates them).

Also, the kids still don't eat great and yesterday was a VERY challenging day. This may sound trite, but we have tickets to a U2 concert in less than 2 weeks that we've been looking forward to going to for a year and a half. If the kids aren't eating like halfway normal babies, 1 of us won't be able to go. We would REALLY like to go together, but the kids can't be left with anyone with the way they are right now. It seems like the medicine worked for 2 days and then stopped working as well. I don't think that's possible, but that's what it seems like. Maybe we still haven't found the right medicine. Who knows at this point. It's beyond frustrating. We pray everyday for a miracle of healing, that all acid, pain, gas, discomfort, and fear will be removed so that they can be comfortable, eating will be pleasurable, and we can have more freedom.

Last labs?

Jude is getting labs drawn this afternoon to check his liver enzyme that was elevated last month as well as his electrolytes. If the results come back normal (which we think they will), he will stop 3 of his medications. This would be so great! It would mean his liver is now functioning properly and his lungs are much stronger than they were. Plus, it would mean we wouldn't be washing medical syringes in addition to bottles all day long. :) But, that's beside the point.

We love Prevacid!

I am happy to report that the kids are doing MUCH better on their new reflux medication, Prevacid. They are still not eating great, but it's better. Hazel has actually been crying because she's hungry the last few days, which has not happened in weeks. We still have to do a song and dance (literally) during most feeds to get them to finish, but it's more manageable than a week or 2 ago. We are still praying that things continue to improve and that they start to eat well enough that we could actually leave them with a babysitter and head out on the town! Okay, not really, but we are praying that they start to eat well enough that I (Heidi) can care for them on my own without wanting to pull my hair out every second of the day. There will come a day (maybe someday soon!) that Noel will no longer be around for the majority of most days and I will have to be able to do it alone. So, we're praying that things are well under control before that time.

The kids are developing "normally" in other areas. Yesterday, the physical therapist said she didnt' think they'd need therapy long term because their movements are normal and they are progressing normally. It's still too early to tell for sure that there will be no problems, but thank God there are no warning signs yet (especially for Jude)!

Jude is now rolling front to back and tolerating more tummy time. Hazel is getting very close to sitting on her own. She can sit for several minutes while leaning on a toy in front of her, but isn't quite balancing on her own yet.