Jude and Hazel

"Hi, my name is Jude and I reached 5 lbs tonight! Please pray that I stay over 5 lbs from here on out. I don't want to fluctuate anymore. I just want to get big and strong so I can go home. The doctor thinks I won't be able to go home for over 6 weeks yet. I hope she's wrong. I want to be with my mommy, daddy, and sister."

"Hi, my name is Hazel and I weighed over 6 lbs tonight! However, I gained almost 4 ounces and I was only supposed to gain 1. Please pray that I stop retaining fluid and have a big poop to get rid of some of that weight. I really like my new OT and she's even going to help me try a little milk from a bottle tomorrow. I think I can do it!"

Little Jude

Please continue to pray for Jude's weight gain. Although his weight gain was "acceptable" last week, he's still struggling. He should be gaining an average of 30 grams per day (1 ounce). While we don't like to dwell on the day to day numbers too much, he is starting the week at a huge deficit. Two nights ago he gained 7 grams. Last night he gained 6. He's got a lot of making up to do before next Monday! He's getting extra calories and I'm separating the "hind milk" out for him (it's higher in fat and calories), but it hasn't seemed to kick into gear yet. He just keeps burning it all up trying to breathe or pooping it all out.

8 weeks old

I can't believe Hazel and Jude are 8 weeks old! In some ways it feels like it's been much longer. It's hard not to think about the fact that they were supposed to be delivered tomorrow (at 36 weeks) and would probably be coming straight home with us if that were the case. Also, my maternity leave is done today and they aren't even close to coming home. Anyway...

The eye exam reports today were good again. Eyes are still immature, but no signs of ROP (retinopathy of prematurity). Also, instead of having another exam next week, they don't have to have one for 2 weeks. Praise God! This is definitely an answer to prayer.

Jude's respiratory function is "better", but he has not been able to be weaned at all on his settings. His CO2 was high again this morning, which means more medicine and no weaning. Poor guy, he's on a lot of medications right now. :(

His ultrasound report was good as well. The report said "no change", which to us sounded only okay, but the doctor explained (I can't remember all the details) what that meant and that that's a good thing. They are basically only checking to make sure the ventricles aren't any bigger and that there's no additional bleeding. He'll have another ultrasound sometime in the next few weeks to check again for cysts (PVL), but for now the news is "good" as far as brain bleeds go.

The doctor says that right now everything is about optimizing nutrition for both Hazel and Jude. When their nutrition is good, everything else improves (Jude's breathing, Hazel's edema, their billirubin levels, etc.). Over the past week, Jude gained 180 grams. Ideally, he would've gained 210, but the doctor is happy that he seems to be heading in the right direction. Hazel's weight gain can't really be looked at as accurate due to her edema (for example, she gained 170 grams in one day a couple days ago, but obviously most of that is fluid retention).

We'll get there one of these days, but the end isn't really in sight yet. We were hopeful they'd be home by the end of the month, but with the way things are looking we're guessing that Jude will still be in the NICU well into February.

I'm not so sure about this!

We showed up just in time for Hazel's bath today. She made it very clear that she was not a fan at first. However, after a minute, she seemed to LOVE it! She was wide awake and very alert afterwards, which was fun to see since we haven't seen her awake in awhile.

Not much news other than that. Jude's billirubin level was slightly higher again today, but we didn't have a chance to talk to the doctor about it (she was gone for the day when we arrived). He had his head ultrasound, but it hasn't been read yet by the radiologist, so no news there. Hazel's edema is still really bad and seems to cause her a bit of discomfort.

Hazel really seems to like being held lately, which we love. Jude seems to be taking a bit of interest in the pacifier and is doing a little better with being held. These things make our visits a bit better.

Prayers for this week

As Hazel and Jude continue to develop, these are the things we are praying for this week:

For Jude:

• He has a head ultrasound again this week. We are praying that the clot is smaller (it's getting reabsorbed) and that no cysts appear. We pray for complete healing of his brain.
• That he gains weight (it'd be great if he made it to 5 lbs!)
• That his respiratory function continues to get better and that his current settings can be lowered.

For Hazel:

• That she tolerates the condensing of her feeds
• That her edema goes away (she's had edema for weeks and has been on a diuretic for it, but it's still not gone).
• That she tolerates a lower setting of oxygen flow (she's very close to getting off completely!)

For both:

• They both have high direct billirubin levels (in the beginning, their indirect levels were tested) that need to go down. We're hoping it's a result of the extended period of time they were on the TPN and not a sign of liver dysfunction
• They both have eye exams again this week. They have had no "bad" reports yet. We're praying that continues and that their exams can become less frequent since it's a horrible thing to go through.

A New Year

As we reflect on 2010, we are filled with so many emotions. We grieve the child we lost in March. We grieve the ideal, full-term pregnancy we expected and did not get. But, we are THANKFUL for so much as well. We are thankful for each one of you, whether we see you daily, yearly, or haven't seen you in several years, we are so GRATEFUL for your support. We have experienced love from so many people, most of whom we know, but some of whom we don't. Thank you for supporting us in our journey. We are most thankful for your prayers, for lifting us up when we can't lift ourselves up. We are thankful for meals, for notes of encouragement, for help with cleaning, for help with laundry, for help with finances. Thank you to all of you.

As we enter a new year, we know that much will be revealed about our children's abilities and/or disabilities. We are praying for a year of miracles. A year in which God reveals his goodness to us in ways we have never experienced before. We are praying for energy, strength, and patience to provide a loving, nurturting environment for these children. Thank you for traveling this road with us, for praying alongside us, for loving our children, and trusting our God.

Sneak Peak at the Rose Parade

As we were walking out of the hospital tonight, the crews were moving the Rose Parade floats to their starting place on Orange Grove, so we got a sneak peak at some of them. Check it out: