Help

We are grateful for so much help and support from so many people. Caring for two preemies with lots of needs sure is exhausting and challenging at times! If you missed the information about meal sign-ups, they are being coordinated by our friend, Lauren. If you're interested in bringing a meal, please email Lauren at laurenstrahan@yahoo.com.

Another friend has organized a google calendar for us for other types of help (dishes, cleaning, errands, childcare). If you are interested in viewing that/signing up for anything, please email Lahela at klisaacson@gmail.com.

My mom is here right now, so many of the household things are covered for awhile, but when she leaves it would be so wonderful to have help. We'll be posting our needs as they arise, so check the calendar often if you'd like! :)

Hazel's tired

For some reason, Hazel is really fatigued and struggling to finish her feeds. We called the pediatrician and he's concerned. We just need to watch her closely now. We really hope she's not coming down with something, We do NOT want to end up back in the hospital! We think she just needs a little extra O2 to give her her energy back, so that's what we've given her today and it's definitely helping, We just don't know what caused the fatigue. Please pray for her - that she stays healthy and starts eating better without needing O2 24/7.

One-handed tasks

On another note, I am getting pretty good at doing lots of things with one hand that I would normally do with two, because there's often a baby in one. For instance, this and the previous posts were typed with Jude on my left arm. Like this ...

Are you sleeping?

This is the most common question we get these days. The most common answer we give is ... uh, not really. We still have not managed one night where we can get them both to sleep at the same time for any length of time. Last night we managed 11 pm to 2 am, and we were feeling pretty good about that!

So much of the stuff we read about babies and feeding and sleep is simply not applicable to our situation, given the high level of extra care these babies require, including a highly intentional feeding schedule, added calories and anti-reflux formula, post-feed holding (to prevent spit-ups), highly intentional sensory stimulation, and cocktails of medications.

The good news is that it seems to be paying off for both of them. Hazel weighed in at 9 lb. 1 oz. tonight, and Jude turned in a 7 lb. 13 oz. weigh-in. In addition, they both seem to be steadily progressing in other developmental areas, as far as we can tell. Thank God.

Now to teach them the difference between day and night ...

Jude

Jude didn't get the same photo shoot that Hazel got upon discharge, but we did snap a few shots! Christen will take some pictures of him soon! Yay! We can't wait!

Jude has been eating so much since he's been home. He eats about 1 and 1/2 times what he was being fed in the NICU. Maybe that will help him gain weight! He's only thrown up a few times, which is good. I think he would throw up every feeding if we didn't take precautions, but what we're doing seems to be helping. We also introduced breast milk back into his diet to see how he'd tolerate it. So far so good! The pediatrician said to give it a try since the antibodies in the milk are so good for him. We mix it so that it has the same number of calories as his reflux formula, so he's not losing any calories. He is very difficult at night. He cries a lot and doesn't want to be put in his crib or to sleep. He sleeps great during the day, but seems inconsolable at night. We're working on it, but think he's probably very sensitive to transitioning home. Hopefully he will feel more comfortable soon.

Sleep

Noel, Jude, and Hazel enjoying a few zzzz's this afternoon while I worked on scheduling all of Jude's follow-up appointments.

Pictures

My friend, Christen, took some newborn shots of Hazel recently! We were hoping she would be sleeping a bit, but she was wide awake! We'll get some sleeping ones later. Here's a link to Christen's blog: http://www.christenbphotography.com/blog/ Thanks, Christen for capturing so much of our journey so beautifully! If we have time, we'll post more of them later. But, time is not something that is easy to come by right now.

As for us, it's been a crazy day. We had appointments at the pediatrician and the eye doctor today. Never again will we do 2 appointments in one day! (We didn't plan it that way, but one got rescheduled). We basically had no sleep last night and only managed very short naps today. No shower for me and 2 major vomits from Jude to clean up. Hopefully Jude doesn't turn into a crazy man tonight like he has the last 2 nights. Luckily, my mom will be here again Thursday!

Chaos

It feels very chaotic around here. I'm sure that will continue for quite sometime. Shortly after arriving home yesterday, Jude managed to pee all over his nice going home outfit. He has subsequently peed through 2 or 3 more outfits. I can't even remember. He's been doing great feeding (eating lots) and hasn't thrown up yet. We have to hold him upright for at least 30 minutes post-feed. It's great that this works for him, but it makes for some long feeding times and doesn't allow us to get anything done. Both kids were up nearly the whole night. They've been sleeping a lot today, which is great, but that probably means another long night (and not much playtime with the kids)!

I think all I've done in the past 24 hours is make bottles (different mixes for each of them), feed babies, wash bottles, pump, wash pump parts, hold babies, and change diapers. I did manage to sneak a shower in, but that's as far as getting ready got for me!

Thank goodness for meals, friends coming to our rescue yesterday (thanks Katie, Christen and Tony!), errand runners, and more. We are so appreciative of everyone!

The Twins Reunited

A note on this picture: The quilt they are both staring at so intently has Noah's ark on it. Two by two!

105 Days Later

We all made it home!

Discharged

OK. Apparently Jude doesn't need more time. His discharge orders have been written and all he needs is a ride home according to the doctor. Please pray for us as we transition to caring for 2 babies, one of whom still seems very fragile.

I had the cookies made...

...and ready to take to the hospital for the nurses yesterday. There was supposed to be a note that said, "Thank you for taking care of me and helping me get strong enough to go home! Love, Jude". Instead, it said, "Please help my brother to come home soon! Thank you for taking care of him. Love, Hazel". I can't promise I'll have time to bake something again the day that Jude does come home since it seems so unpredictable. We'll see. We're really hoping that his doctor tomorrow is the one that seems to focus most on nutrition. We LOVE her and she and Jude are a great match. So, please pray that she has Jude, that she can get him on a good nutritional plan again, and that he can come home this week.

On a brighter note, Hazel is getting great at tummy time! It's fun to see her get stronger each day. She lifted her head higher and longer today than we've ever seen before. Go Hazel! She is lots of fun...except from 12-2 am when she seems to want to play and we want to sleep. This whole 4 hours of broken up sleep a night is getting tough.

No Jude today

Hoping for tomorrow, but we'll wait and see. :(

Hoping...

...to have our little buddy, Jude, home tomorrow (Saturday)! As long as nothing crazy happens overnight, our NICU journey will be over tomorrow.

Ready and waiting

We're ready for Jude. We've got his oxygen (thank goodness it's a quieter machine than Hazel's!) and his prescriptions. Now we're just waiting. He won't be coming home Friday. His weight gain for the week was far from adequate. The doctor tried increasing the calories in the breast milk today and he projectile vomited twice. Sooo, that's not an option. Now he's trying the same number of calories in the formula he was getting before (for reflux). The doctor wants to see if he can tolerate the high calories when it's in this formula rather than breast milk. So for now, he's off of mommy's milk. :( If that's what he needs to gain weight, then we're fine with that. They'll watch him Friday and Saturday and if he's doing well, he may go home Saturday or Sunday. If he doesn't tolerate the formula, I'm not sure what the next step is. We'll just wait and see.

Fatigue

From Noel: Have I the reached beyond-tired point of being a new parent? Consider this: Heidi just reminded me that I woke up this morning at 5 am muttering something about how this feeding of Hazel's was being sponsored by Stephen King. Then as Heidi looked at me utterly confused, I tried to further explain that it's quite common for famous people to sponsor feedings. (I had been up until 2:30 am with Hazel.)

From Heidi: I about lost it when Noel told me that when Jude comes home, we'll have the picture perfect tortoise and the hare when it comes to feeding. Hazel being the hare, Jude being the tortoise. I added (laughing hysterically) that Jude looks like a large mouth bass when he eats.

Friday?

The doctor still plans to send Jude home Friday, but it's still not totally certain. He did not pass his car seat test last night. It's a 2 hour test and at 1 hour 57 minutes, he bradied (heart rate drop). Jude!!!! C'mon buddy! The test is being repeated tonight. He gained weight last night, but lost again tonight. His overall weight gain for the past 5 days is nothing, which concerns us. So, we'll wait and see. We're picking up his prescriptions tomorrow, so we'll be ready if he does come home. Life is about to get very interesting! We have 2 VERY different children!

99

I've been singing, "99 days in the NICU for Jude, 99 days in the NICU, take one down...". I know it doesn't make sense, but today is Jude's 99th day in the NICU. A few weeks ago Noel and I placed bets on what day Jude would get out. I said 100 or 101. Looks like I'll be close! I can't remember what Noel said, but I think it was 97 or less. Jude's getting his car seat test tonight. The doctor ordered his home oxygen today, so that should be set up in the next couple of days. He will need to be on it 24/7 for now. He did okay for a little while without it, but started to desat after about 20-30 minutes. We have no idea how long he'll be on it, but hopefully by the time he actually gets an appointment with the pulmonologist, he will be much stronger. (We STILL don't have an appointment for Hazel! They won't schedule the appointment until the doctor reviews the file. Ugh.). He lost weight again last night, which is not good. I talked to the doctor today and explained that we want to be sure that he's on a good nutritional plan before he comes home (gaining weight more than 2 days in a row). He agrees, but explained that Jude's chronic lung disease makes it very hard for him to gain weight and that he's maxed out on the volume of food he's taking and when his calories get increased, he throws up. We just want to know that he'll be growing when he gets home. The last thing we want is to end up back in the hospital! Hopefully we can figure out something soon! I think the doctor still wants to send him home this week (assuming he doesn't lose anymore weight). It does seem that the end is in sight!

Hazel

Hazel LOVES looking at these toys in her bouncy seat. She just stares and stares at them and gets very excited. Yesterday, she started hitting them! It's mostly accidental, but still exciting to see since it's a new development.
Hmmm, do you think Hazel's ready for a Valentine's Day party? I'm not so sure.

She's a little more ready for a party here. At least she's wearing her party clothes!

Too bad Jude couldn't join us for our take-out dinner party. We'll make up for it next year!

Happy Valentine's Day!

Well, I've been trying for awhile to load some pictures, but it's just not working right now. So, I'll try again tomorrow.

Hazel had a nice visit with the OT today. According to the OT, she is doing typical 0-1 month old things in most categories, which is right on track for her adjusted age. She is a little more advanced (1 month level) in her social skills. There was nothing that stood out to the OT as "alarming". Since she's doing so well, she may not qualify for Early Intervention at this time. We'll find out later. She'll be reevaluated in a few months to see how she's progressing. We got some new ideas of things to do with her, which is nice! We want to help her as much as possible!

Jude's doctor thinks he may come home at the end of this week. We're not quite convinced yet since his weight gain is still inconsistent and he threw up again today. He definitely needs oxygen for feeding, but they are evaluating whether or not he needs it all the time. We want him home soon, but want him to be strong enough and healthy enough for us to be able to meet his needs. If that's this week, great. If not, that's okay too.

We're off to get a little Valentine's Day dessert at 21 Choices! Hope you all had a lovely day!

Update

As of this afternoon, Jude was still vomit free! I think it's been over 48 hours since he's had a major episode, which is great! He's most likely going to start trying all feeds from the bottle either today or tomorrow. That means we may be getting close! He remains on home oxygen settings at this time. We are still praying he does not need it at home, but are trying to prepare ourselves for him coming home with it. I'm still trying to picture where a second oxygen machine (and possible home monitor) will fit in our 1 bedroom apartment, but we'll make it work if it has to! Jude is also on a lot of medications (10 to be exact). We're hoping he can be weaned off some of them before coming home, but the doctor does not think that's possible. Please pray for us as we prepare to manage his many needs and home care when he finally does come home!

Hazel's going to get her first visit from the Early Intervention OT tomorrow! We're very excited. She also has an appointment with the GI this week. This is a follow-up for her mild liver dysfunction. We're praying that her liver is better, her jaundice is gone, and that she can be done taking her only home medication!

Maybe next Sunday we'll be sitting here with 2 kids in our apartment...

Post-Feed Snooze

Jude loves to sleep in his bouncy seat after his feeding. It seems to help him keep his food down to be upright. This is a pic from tonight after his 9 o'clock feed.

Meals

We have been so blessed by not having to think about meals over the past several months. Thank you to all of you who have taken the time to bring us food! We can't tell you how VERY helpful it is! Now that my mom is gone, my friend, Lauren, has opened up a meal sign-up calendar for the next few weeks. If you would like to be invited/able to sign up for a day, please email her at laurenstrahan@yahoo.com. We appreciate it so much!

Oops

Hazel has been struggling with her eating the past few days and we couldn't figure out what was going on. We washed her cannula the other day and changed the water in her O2 machine and things have not been as good since. This morning, we decided to call the oxygen company and ask if they could look at the machine. They took us through some trouble shooting and we found out it wasn't working! So, we've been feeding Hazel without oxygen for a few days. No wonder she was tiring out so badly and not finishing her milk. We feel so bad! However, it is very clear to us now that she does MUCH better and is able to eat MUCH more when she does have the oxygen. We are very eager for it to go, but it is definitely best for her at this time.

Jude hasn't thrown up in 24 hours! I hope things are getting under control with that! He's gained weight 3 days in a row now, which is great! Hopefully that trend continues as well.

Hazel the Chatterbox

The nurses told us that these are common preemie noises, so we don't find them quite so alarming any more, but we do still find them amusing. This video is an example of the kind of noises Hazel makes probably 60-70% of her waking hours. Part of these noises are because she's gassy and trying to fill her diaper; part of them are just her being amused. Welcome to the world of Hazel.

Outside!

We took Hazel on a walk the other day and she loved it. We can't go anywhere with lots of people or be out too long, so we just took a short stroll to get an afternoon pastry and headed right back home. Hopefully, as she gets bigger and stronger, we'll be able to venture out a bit more.

So far, Jude is doing well with his new formula. The doctor hopes to increase the volume of his feedings, get him to stop throwing up, and get him to gain weight consistently before trying to increase the number of times he bottle feeds each day. Sooooooooo, who knows how long all that will take. Hopefully not too long! Once he's taking all of his feeds from a bottle, they'll reevaluate his oxygen needs. But for now, he remains on home oxygen settings and he's doing well with that. We're still praying that over the next week or 2, he'll be able to get off the O2 and maybe only need it for feeds. C'mon Jude! Life is much better without a cannula!

We're just trying to be patient, but it is very hard.

13 weeks old...or 6 days

Jude and Hazel are officially 13 weeks old, but developmentally 6 days old. Hazel had an appointment at the pediatrician today and he thought she looked great. She weighed 8 lbs 3 oz! She doesn't have to go back for a month, which is great since she has several other appointments in the next few weeks.

Jude is still having a rough go at it. He's not gaining much weight again and has pretty bad reflux. The doctor is trying him on some special formula every other feed and see how he does with that. They're still watching his heart rate and blood pressure closely as well as many other things. Hopefully he's home in a couple of weeks.

Mr. T?

Hmmmm, is this Mr. T or Jude with his crazy after bath hair?

Tired

We are tired! Obviously parenting of any type is tiring, but parenting one baby at home and one in the hospital is quite difficult. Thank goodness my mom is still here to cook, clean, do laundry, and run errands for us!

Jude is still struggling. His oxygen settings have been changed to reflect "home oxygen" settings, which means the doctors and nurses are pretty set on him coming home on O2. He still has to work on taking all of his feeds by a bottle, but once he does that, he'll probably be coming home. He currently bottles every other feed. We're still praying that by the time he gets his feeding worked out, he won't need O2 all the time, but it's not looking great at this time. His resting heart rate has dropped quite a bit over the past few days. It could be due to him getting bigger, but the doctors are watching him closely. They did another EKG yesterday, but that didn't reveal much other than some irregular beats.

Hazel has her day and night mixed up, but she'll get it right one of these days! :) She eats and sleeps all day and then eats and wants to play all night.

Hazel

Hazel loves her sleep sack and her crib. :) We'll try and get some better pictures of her when she's awake sometime soon.

Hello Jude's chin

Jude is getting quite the distinct chin these days. First, he's getting a double chin (yay! he's getting bigger!). Second, he has inherited his mommy and grandpa's dimple. But, his is suddenly VERY distinct.

Jude seemed more stable today and his oxygen settings were able to be lowered a little bit. He's still not where he was last week, but he's much better than he was a couple of days ago, which is encouraging. His heart echo did not show any heart failure, which is what the doctor was looking for. However, it did show a small PDA. A what?!?!?!? Yes, a PDA! This is what he had ligated when he was less than a week old. If you remember, he had 3 clamps put on to close it when it usually only requires 1. The opening is so small that no murmur can be heard, it's not causing any problems, and the cardiologist isn't concerned. However, he will have to follow up with the cardiologist in about a month. We're hoping that his improvement today continues over the coming days.

Since Jude was feeling better today, he was able to try breastfeeding for the first time. He did GREAT! Many babies with chronic lung disease (which Jude has) aren't able to breastfeed. But, he latched, didn't require much extra oxygen, and took a full feed. This is very encouraging!

Hazel has decided to go on an eating rampage. Over the past 7 hours, she has eaten more than she normally does in 12-18 hours. Maybe she's growing!

Happy Due Date

Well, Hazel and Jude are officially term today. They are now at an adjusted age of 0. We'll be dealing with adjusted ages and actual ages probably for at least a couple of years until they are caught up.

Not much news today. Jude's still doing about the same, which is not as good last week. They did an ultrasound of his heart today, which we'll get the results of tomorrow. We're not exactly sure what they're checking for. They may just be trying to rule things out that could explain his respiratory distress.

Hazel's doing pretty well and is getting spoiled rotten by Grandma holding her all the time. Hopefully she remembers how to sleep in her crib tonight!

12 weeks old

Jude still seems to be struggling a bit. His oxygen settings remain higher than what they were last week. The doctor thinks he had an inflammatory response to a medication he received on Friday and that's what's caused the setback. We were hoping he would've started to improve again by now, but he hasn't. The doctor tried to lower his flow today, but he didn't tolerate it. We were so hopeful last week that he'd be home in a few weeks without oxygen, but it's not looking like that will happen with the way things look now. He may be home in a couple of weeks, but it'd most likely be on continuous oxygen support. Very disappointing. He still has time to rebound though and that's what we're hoping for!

Hazel's cute as can be and is doing well. We had our first outing to the eye doctor today, which went fine other than finding a parking spot. Thank goodness my dad was here to drop us off and go park!

Were grateful to have my parents here helping this week. Noel actually did schoolwork today and I took a nap!