What's on our minds

Praying this week for...

Jude:

• That whatever caused him to take several steps back resolves itself quickly
• That he's able to be weaned again on his oxygen settings and be successful at it this time
• That he continues to bottle feed well
• That his brain continues to heal, that the ventricles return to their appropriate size, and that he does not suffer from any disabilities or other long-term problems
• That his liver dysfunction improves (the GI reviewed his labs and concluded that the dysfunction is from the TPN he was on and will probably work itself out in a few months...we're hoping for sooner!)
• That he does not need to come home on oxygen (whenever that day will be)

Hazel:

• That her home oxygen for feeding is very temporary (we'll see the pulmonologist in a week and a half to 2 weeks for her first appointment, and hopefully her last!)
• That she gets better at breastfeeding and takes full-feeds
• That she continues to gain weight appropriately

For both:

• That their eyes develop "normally" (they both have exams again this week)
• Overall development

For us:

• Good health and rest now that our schedules are even crazier
• Patience and guidance as we raise two preemies

We are grateful for so much. We have been so blessed and surprised by the generosity and encouragement of so many this week. Thank you for journeying alongside us!

Jude's struggling

Jude was doing really well this past week until yesterday afternoon. He looked like he was close to getting off the oxygen yesterday morning, but by last night he was in a completely different state. His oxygen flow was at 1/4 liter (the lowest flow) yesterday afternoon, but had to be turned up to 1 liter last night. His oxygen percentage had been at 21 % to 25%, but also had to be turned way up. So far there is no sign of infection, his chest x-ray looked pretty good (his lungs were a bit under expanded), and his blood gases are good. He's just not feeling well and we don't know why. It's possible that he was working so hard to keep up with the lack of support he was getting when his flow and O2 were weaned this week and he finally just pooped out, but we're just not sure. The doctor has made some changes for the weekend that will hopefully allow him to rest and recover.

He had been doing so well that we were hopeful he'd be home soon, but now we're not sure. Hopefully he recovers soon. C'mon Jude, your sister misses you and we want you home!

Hazel's doing pretty well. The home oxygen is a royal pain and I think we'll have to have celebration when it's out of here!

Hazel had her first bath at home yesterday. She wasn't a big fan, but she sure did smell good afterwards!

We had a little "Welcome Home, Hazel" party last night so she could meet some of our friends.

Hazel's first day home

I think Hazel likes her new home! We're trying to figure out her schedule, which will definitely take some time, but it is so nice to have her here...even if that means less sleep! We took her to the pediatrician today, which went just fine. She'll have many more appointments in the coming weeks (eye doctor, pulmonoloist, GI, more pediatrician, etc.), so I'm glad our first outing was successful.

Our friend, Christen, posted some more pictures from yesterday on her blog. Check it out here!

HOME!

Hazel was discharged today! We brought her home around 3:00 this afternoon. Our friend Christen was there to document the occasion. Here are a few photos from our momentous day.

Heidi and Hazel saying goodbye to Jude. "Hope to see you soon!"

Hospital protocol stipulates a wheelchair ride for discharge.

Home!

Photos by Christen Bordenkircher.

Wednesday?

The plan right now is to discharge Hazel on Wednesday. The home oxygen is being set up tomorrow. Hazel's doctor is trying to get her off the diuretic she's been on before she goes home. He cut the dose in half today and will stop it tomorrow. If she is still doing okay (it may affect her respiratory ability and/or urine output), she'll go home Wednesday. We're hoping she does alright without the diuretic because it would also enable her to get off 3 additional medications that she's on to counteract the side effects of the diuretic. It would make caring for her much easier and hopefully help her finally balance out her electrolytes and strengthen her bones! If she's not doing okay without it, I'm not sure what the plan is. I guess we'll cross that bridge if we come to it.

The doctor is trying to get Jude off his O2 by the end of the week. Noel and I both think that is quite ambitious, especially considering the way Jude was breathing today. But, he's been known to surprise us! We think he will need another week and a half or more though before being successful without it. We actually have thought all along that he'd come home on O2, so the fact that the doctor wants to completely wean him off soon is very exciting to us! He still has a long ways to go with his feeding, so maybe by the time that's all in order, he will be free from his cannula. That would be awesome!

A week of change

It's crazy to think that next week at this time, we will be sitting at home with Hazel (hopefully!). We'll find out more tomorrow about when that will happen. It's dependant upon when the home oxygen company can meet us and set up everything for us. We're hoping it's a very short term thing since she's on the border about really needing it. She'll have to see a pediatric pulmonologist, who will eventually decide when to stop it. Hazel had her car seat test last night and passed, so as soon as we're ready with the O2, she'll be discharged!

Jude is now over 6 lbs! I guess the 30 calorie formula he's getting twice a day is really helping. He is throwing up quite a bit, which could be a combination of him not liking the formula and the many medications he's taking, or maybe even reflux...we're not sure. At least he's still gaining weight. Who knows, he may even catch up to Hazel soon (she's 6 lbs 14 oz)!

Jude was switched from the high-flow nasal cannula to the regular flow today. He is down to 1 liter, which is great! He will be weaned 1/4 liter at a time from here on out. We are really hoping he tolerates it and is able to come home without oxygen. That would be such a miracle! He has had so many complications, but has really made a lot of progress the past couple weeks. Please pray for no oxygen for him! Hopefully he will be coming home soon as well.

We're pretty much set at home and are just trying to do some final organizing and cleaning. Life could get pretty crazy this week! We're praying for good health for us as we enter this next phase, patience as we adjust to being "full-time" parents to Hazel, and maybe even a little bit of sleep...but that may be asking too much. :)

Cookies!

Check out my friend, Christina's, site for this awesome giveaway! I'm even mentioned in the post since I tried the cookies. They were delicious and I followed a link to the recipe (when Christina first sent me the info on them), which brought me to someone's blog in Grand Rapids, Michigan! What are the chances? I would love to make these cookies for myself, but don't really have the time right now. I may try to talk my mom into it. :) First, I'd have to find all the special ingredients, but it'd be worth it! I'm not sure I need an excuse to eat 4 cookies a day right now though. I want to win the $20 gift certificate so I can buy the cookies. Then, neither my mom nor I would have to make them!