Sunday, January 30, 2011

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!

Saturday, January 29, 2011

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.




Thursday, January 27, 2011

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!

Wednesday, January 26, 2011

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.

Monday, January 24, 2011

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!

Sunday, January 23, 2011

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. :)

Friday, January 21, 2011

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!

Exciting news

We received good news today, but it means that our lives are going to get even more complicated starting next week. The doctor plans to discharge Hazel the middle of next week. However, she still needs oxygen when she feeds, so she'll be coming home with that. As soon as all of her "home care" is arranged with our insurance company, she will get her car seat test. Assuming the home oxygen is arranged soon and she passes her car seat test, she should be home in less than a week! We're bummed about the oxygen requirement and are hoping that it's only necessary for a very short time (the doctor predicted about a month). Maybe she will miraculously stop needing it over the next few days and come home without it. It doesn't hurt to pray for that! We're trying to figure out how we'll continue to visit Jude with Hazel at home, but I'm sure we'll figure it out when the time comes. It may be a long few weeks!

Jude's cranial ultrasound looked "good" this week. The ventricles are slightly smaller and the blood is continuing to reabsorb. Also, there are no cysts present at this time. That's the best news we could receive given the condition he has. The doctor thinks all of his liver tests are in now and they all came back negative, which is great. The GI doctor still needs to look at everything, but most likely the dysfunction will work out itself out with time. Jude has been doing well with the bottle and even gulped down his entire feeding today (46 mL)! Maybe he'll be able to try it more than once a day sometime soon!

Thursday, January 20, 2011

Thus Saith the Lord

"The days are surely coming," says the Lord, "when you won't have to be at the hospital every day."

We've been at the hospital every day since October 7 (save two or three maybe in my case), so this is the verse I'm always looking for when I open up my Bible nowadays!

Please keep praying to that end. We might be getting close with Hazel!

Wednesday, January 19, 2011

My amazing friend, Christen

My amazingly talented friend, Christen, shared her time and talent with us a couple of nights ago. We are so thankful for her willingness to spend time with us and take some actual photos (the ones we snap with our cell phones hardly count). First is Jude, then Hazel. Hazel was supposed to be eating, but she had a different idea.















Hazel didn't have as good of day today. She didn't finish one of her bottles (she fell asleep) and she needed oxygen when feeding last night. If she gets to a point where she takes all feed by bottle/breast, but is still requiring oxygen while feeding, it's possible she'll get discharged and sent home with O2. Obviously, we will do anything she needs, but we are REALLY praying that she does not need to come home with it. It would just be such a pain. She may just need a little more time to mature and work on her suck/swallow/breathe coordination (she forgets the breathing part). Come on, Hazel! You can do it!
Jude tried a bottle today and did quite well! He required a little more oxygen, but didn't have any major "episodes". He finished 13 mL before getting all tuckered out. Nice work, Jude!





Milk Storage

I really thought that as Hazel and Jude got older and started eating more that we'd have an easier time storing breast milk without it backing up all the time. Unfortunately, the opposite is true! Jude is now receiving a high calorie formula a quarter of the time and Hazel is receiving a quarter of her feeds directly from me. However, I'm still expressing as much or more than before, which is creating a major storage problem. We already have milk stored in 7 different freezers around town (thank you to all of our "storers"!) and I don't know what else to do! I'm thinking about packing it on ice and shipping it to Michigan. :) Anyone have any ideas???

Tuesday, January 18, 2011

Scrambling

Wow! It suddenly feels like we may have a baby home soon...and we're not quite ready! I know, you're probably all thinking that we've had a long time to prepare. But, to be honest, when you have kids in the NICU, the last thing you want is to come home to an empty crib. Hazel's still doing well without oxygen and even took her bottle last night without it. She's getting 2 out of 3 feeds bottle/breast. Her last step is to take all of her feeds bottle/breast and then pass a car seat test. Who knows, she may be home in a week!

Jude is going to try a bottle tomorrow (if he cooperates and wakes up at feeding time). His oxygen flow has been weaned 3 liters over the past 10 days. That's amazing! He was stuck at the same setting for over 2 weeks and we were hoping that he'd be able to be weaned a liter a week. He's done better than that and is going to be weaned another liter over the next 48 hours. Most of his labs that were drawn yesterday for liver dysfunction are "send outs" and won't be back for 1-2 weeks. Some came back right away and showed that his levels are elevated (to be expected with liver dysfunction) and had gone up 20% from his last check. :(

Eye exams were the same this week, which is "immature without ROP". Another exam in 2 weeks...

Monday, January 17, 2011

Can you guess what I'm missing?

"I got rid of my nasal cannula today!!! No more oxygen for me! I'm a big girl now. However, the nurses still think I need it when I get fed from the bottle, so they put it back on for feeding time. I don't need it when my mommy feeds me though. Can I please go home soon?"

Sunday, January 16, 2011

Praying this week

We have definitely seen some answers to prayer this past week with respiratory function improving, Hazel tolerating her feedings being condensed, and Jude gaining weight. We are so appreciative of all the support and encouragement from all of you. Here are some things that are on our hearts this week:

Jude:
  • He's having labs drawn in the morning for MANY tests to be run regarding his liver dysfunction. Some results will be back right away, some not for over a week. We are praying that all tests come back negative, that his dysfunction can be attributed to the TPN he was on, and that with medication it will work itself out.
  • For his oxygen flow to continue to be decreased and get low enough for him to try bottle feeding
  • For his brain to continue to heal, be able to be "rewired", and for no long-term complications
  • That his "schedule" will cooperate with the OT's schedule

Hazel:

  • That she's able to start receiving all of her food via bottle or breast (that means no feeding tube!)
  • That she's able to get off the oxygen
  • That she's able to come home by the end of the month (we're hopeful!)

They both have eye exams again this week, which is not pleasant for them and very difficult for me (Heidi). We're praying that they still have no signs of ROP and that their eyes are maturing properly. We're also always praying for their overall development and total healing for both of them since they are at such high risk for so many problems due to their extreme prematurity.

Saturday, January 15, 2011

Hazel Post-Feed

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"What just happened?" -Hazel

Jude's Dream Habitation

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Maybe all he ever needed was a tent!

Yesterday

Both Hazel and Jude had great days again yesterday. Hazel was doing so well that we're starting to think she might come home soon! If she progresses as much in the next 2 weeks as she did in the past 2 weeks, it is possible she could make it home by the end of the month. This is pure speculation on our part (nothing's been said by the doctors). We're praying that she can get her feeds completely condensed (she's down to an hour, but needs to get to 30 minutes) so she can breast or bottle feed every feeding and get rid of her feeding tube. We're also praying that she can get rid of the oxygen SOON. Those are her last 2 steps!

Jude was doing well also, but he's just a few steps behind.

Thursday, January 13, 2011

"A" for the day

Hazel is an "A" student already! We met with a lactation consultant yesterday and today and Hazel scored 20 out of 21 on breastfeeding. It seems funny to me that it's graded, but I guess it's just part of the routine. Yay Hazel! Now she really needs to get her feeds condensed so she can nurse or have a bottle every feeding and get rid of that horrible feeding tube!

No other news worth reporting. Any minor setbacks we saw today or may in the future seem very trivial compared to what some other parents in the NICU are currently dealing with. We are grateful for slow but steady progress and pray for no major setbacks so Hazel and Jude can come home soon.

Wednesday, January 12, 2011

A good day

Both Hazel and Jude had great days today. They were both on lower oxygen settings than we've seen them in a long time (or ever!). Hazel was on "room air" almost all day with the lowest flow possible. Next step, no oxygen which equals no tape on her face! My goal for her is next Tuesday. We'll see what her goal is and what the doctors think.

Jude had his flow lowered again today to 4 and was not requiring anymore oxygen than he was when he was at 4.5 liters. That's great! Usually, as the flow is lowered, the O2 goes up for a bit. Then the O2 gets lowered, the flow gets lowered again, and the cycle continues. Jude's schedule and the OT's schedule don't seem to be matching up. The OT stops by frequently, but Jude is either sleeping or agitated. We'll try again tomorrow. She wants to work on oral stimulation with him as his feeding begins. We gave him a pep talk tonight and told him that he needs to be awake and content at 11:15 tomorrow. I hope he listens!

As for the picture in the previous post, we should really compare Hazel's 5 month picture to my 2 month picture due to her being 3 months premature, but we thought there was already a great resemblance.

Hazel? No, Heidi at Two Months


Notice any resemblance?

Tuesday, January 11, 2011

Hazel Slide Show

Hazel was pretty awake tonight when we were there, so we snapped a bunch of photos. When we were on our way home, Heidi and I both said that Hazel seemed "like a normal baby" tonight, which was really neat for us. Enjoy!





Immunizations already?

Since our babies are technically 2 months old, they are receiving their 2 month immunizations today and tomorrow. They got 2 today and will get 3 tomorrow. Poor babies. They aren't even full-term yet!

Hazel is a bit congested now, but is thankfully not sick. Between that and her edema, she has not been able to make much progress on her breathing. The doctor thought she'd be able to be completely weaned this week, but it's not looking like that now since she is taking much shallower breaths than before. On a good note, she may be able to try breastfeeding sometime this week! Oh, another good note, the weekend doctor increased her diuretic and gave her an additional medication for her edema and she lost almost 5 ounces 2 nights ago. Too bad she can't give it to her brother!

Here's Jude enjoying sucking on my finger. He tends to like that better than the pacifier and we like to give him all the practice he can get! The doctor thought his weight gain this past week was much better, but I don't know what the exact total was. He was able to be weaned from a 5 liter flow on his oxygen to 4.5 liters. It's a very small difference, but a move in the right direction. We're praying he can get weaned a liter a week. It's asking a lot, but we think he can do it! His billirubin is still high, which is a sign of liver dysfunction. The doctor is quite sure it's just a result of the extended time he was on the IV and will work itself out, but she's consulting a GI doctor anyway just to make sure there's nothing else going on. The GI will see Jude later this week.

We continue to pray for progress in their breathing, their suck/swallow/breathe ability, Hazel's edema, Jude's brain bleed, both of their livers, protection from infection, overall development, and good health, patience and hope for ourselves.

Sunday, January 9, 2011

Pace yourself, Hazel

Hazel loves the bottle too much and is not remembering to breathe. She's got a very strong suck, but that's not good if she's not breathing! Last night, she gulped way too much way too fast, choked, bradied, and turned almost blue. I know this is common with preemies, but it sure doesn't make it easy to see! Today, the nurse just turned up her oxygen when she fed her. That went well, but it doesn't teach Hazel how to pace. It may be a long few weeks to see this get worked out. Oh, and her edema is REALLY bad now. :(

Jude had some major apnea today that resulted in some huge desaturations. His caffiene dose was increased, so hopefully that helps. He got moved to the back corner of Nursery B, which should be a quieter place than he was in earlier. We're hoping this helps him since he's so sensative to sound.

On a brighter note, my friend Amanda came and visited today! She lives in Toronto where her husband John is a student, but she's working in LA for awhile. She cleaned and grocery shopped for us, which was SO helpful. We're so grateful for great friends and great support from so many people. And it's always fun to introduce our kids to our friends!

Saturday, January 8, 2011

We knew it would happen

Well, we knew it was coming, but it doesn't make it easy. More babies were admitted a couple days ago, Nursery C was opened up, and Hazel got moved. There's a good chance she'll go home before Jude even makes it there, which means we might not be together again as a family for a couple of months. I know it's a good thing for Hazel, but it's SO much nicer to have them next to each other!

Hazel is still doing well with the bottle with the small amount. We're eager for her to be ready to take more at a time! We're very thankful that she has got the suck, swallow, breathe thing down decently well.

Jude is having a really tough time with gagging. The combination of his feeding tube and the high flow of oxygen he's receiving is suddenly causing him to gag a lot. If we pick him up, or he gets turned over, he gags and then bradys (heart rate drops low) and majorly desaturates (oxygen level drops low). Hazel's feeding tube is in her nose, which helps the gagging issue, but Jude's oxygen requirement is still too high for that to be an option for him. It's very frustrating because we haven't held him in a couple of days (we've tried, but this keeps happening and we have to put him back right away) and he just seems really uncomfortable. I would also if I had a tube down my throat and lots of air being blown into my nose (with a few occasional water drops, which don't help anything)! I wish his oxygen requirement could go down significantly, but it's a very slow process. If he required less air flow, he could get his tube moved and/or try a bottle. We're just waiting, but it sure is hard.

Friday, January 7, 2011

Hazel loved the bottle!

Hazel got to try a little milk from a bottle today and did great! She didn't cough, choke, gag, or spit up. She took 13 ccs and then the OT decided to stop since that was a great start. We don't want to push her too much due to her history of vomiting and she isn't used to getting a lot of milk all at once. The doctor wrote an order for her to try a bottle twice a day with up to 20 ccs. She'll then receive the rest of her food (she gets 65 ccs total) through her tube over 2 hours. Yay Hazel!

Jude told the OT, "I don't want to play today", which was a bit disappointing. He was really up and down today with his breathing. Hopefully he's a bit more stable next time we visit (and the next time the OT visits him).

Thursday, January 6, 2011

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!"

Wednesday, January 5, 2011

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.

Tuesday, January 4, 2011

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.

Monday, January 3, 2011

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.

Sunday, January 2, 2011

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.

Saturday, January 1, 2011

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:

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