Hazel Says, "Don't Forget Me!"

... and a video of Jude

Adorable Little Jude

Jude has gotten much more interactive and smiley in the last couple weeks. Check him out.

Results...

We got a call from the pulmonologist this morning with the preliminary results of the sleep study. It looks like Jude will be staying on the same setting and Hazel is getting put on oxygen for sleeping. :( She was having some irregular breathing patterns and would do some quick desats as a result. Soooooo, during naps and nighttime she will be on the oxygen. It definitely feels like we're going backwards. And, we're all the more frustrated now that we couldn't get her in for an appointment earlier. She's been home for over 2 months! We do have an appointment on April 8th at UCLA for a second opinion. We are already very impressed with them in terms of scheduling. They are actually moving other patients so that our kids can come in together! What a concept! Their scheduling department is friendly and you can actually talk to a person rather than leaving a message. It's a farther drive, but if we like the doctor, they are way more accessible and we plan to switch. We need to get these kids strong and off the oxygen before we can think about moving anywhere! Please pray for speedy lung development.

Hazel should be starting feeding therapy next week. Please pray for her. She just does not like to eat. It seems to cause her so much discomfort and we now fear she is developing aversions. She's still growing, but much slower than before. Some days she seems to do quite well (like yesterday) and other days, we think she'd prefer to eat nothing at all (like today). It's such a roller coaster. She's still quite smiley and interactive when she's awake, but often times during and after feeding, she just shuts down for long periods of time. We just want her to enjoy eating and have her be healed from any physical and psychological problems that are hindering that from happening. Thank you for your prayers.

Sleep study

Children's Hospital called this afternoon and scheduled both kids for sleep studies tomorrow morning. Nothing like short notice! At least something is happening! We're hoping they might be able to monitor Hazel eating as well since they said we could feed the kids there. So, we rescheduled Jude's scheduled appointment for tomorrow and will be heading to Children's.

Also, if you haven't already seen a few family pictures of us, check out Christen's blog and scroll down a few posts.

Heavy Hearts

Our hearts are heavy today as we heard that one of our NICU friends passed away yesterday. Please pray for that family. This little girl came so far and lived over 4 months. We can not imagine the grief her parents are dealing with now.

As for our crazy house, we continue to pray for the development of our kids. We continue to worry about Hazel's eating and think that there's more than "just" reflux going on. We think she has some sensory issues as well. She qualified for feeding therapy, but it's taking forever to get going. Please pray that that happens SOON! We also think she may need other OT services and are looking into getting that set up.

Jude's becoming quite interactive. He's smiling a lot and cooing as well! Anytime we try to catch a smile on camera though, he turns it to a frown. Silly Jude. He's also losing all of his hair. Noel has always been afraid that any kids we had would inherit the Dykema male patterned baldness. He's quite concerned that Jude's showing signs already. :) I assured him that it's quite normal for babies to lose hair.

Off to the doctor!

Update

It's been a crazy week with doctor visits every day. The pulmonologist we saw did not really ask us any questions about how our kids were doing, what we thought their needs were, or offer any type of helpful information. We thought she'd want to evaluate Hazel feeding since that is the reason Hazel is on oxygen, but that wasn't even mentioned. Instead, she looked at their NICU history, did a chest x-ray, did labs, and said come back in 4-6 weeks. Hazel's already been home for 10 weeks. I'm sure her NICU history is relevant, but she's grown so much since then. So we tried to schedule an appointment for 4-6 weeks, but she (of course) did not have any openings for another 10 weeks!!! That means no changes for 10 weeks, which is just unacceptable. Our kids need to be followed more closely than that to monitor whether their needs increase or decrease. I could go on all day about other aspects of the appointment and our frustration, but I'll leave it at that. We found a private practice pulmonologist in Pasadena who takes preemies, so we made an appointment with him in a couple weeks. Also, I was talking to another NICU mom yesterday who is having scheduling difficulty as well, and she said she's heard great things about UCLA. So, we're also going to check that out. It's a bit farther, but that's not an issue for us if they are more accessible. My friend's pediatrician told her that kids discharged on home oxygen who get followed by Children's Hospital doctors are usually on oxygen for a year due to lack of scheduling. That is just not going to work for us. If our kids need it for a year, that's one thing, but if they don't, they shouldn't be on it due to lack of doctor's availability.

As for the GI appointment, the GI doctor is not concerned. Hazel has made such great progress on the growth chart that there's not much more we can do other than be patient with her long feeds and hope she doesn't throw up. :) Noel has much more patience than I do, so he's been on Hazel duty most of the week. We don't want to put her on any stronger medication since she seems to be doing "okay" and there are risks for adverse side effects.

Oh, the pulmonologist did order a breathing treatment (broncho-dialator) to be done to both kids twice a day. This adds about 30-60 minutes of care to them each day. It's about enough to put me over the edge. Feeding, going to the doctor, calling the doctor, changing diapers, holding, playing, washing, pumping, sleeping is enough. But, we will now try to make time for the breathing treatment....

We've been very blessed with meals this week as well as some cleaning help, and baby holding help. These are all great things and make our lives a bit more manageable. I keep saying, "when's it going to get easier?". The answer is unknown, but it will probably be several months until our kids are on a better road to health. We pray for strength to make it to that point....or a bigger place to live so we can have a live-in nanny/nurse/housekeeper. :)

This coming week looks a bit daunting as well with 4 days in a row of doctor's appointments (all for Jude this week). It seems each appointment just results in more appointments (that was the case this past week), but hopefully those appointments become fewer and farther between.

Busy

As you can probably tell from the lack of posting, it's been a very busy week. We were not happy with our visit to the pulmonologist and are looking for a second opinion. We'll write more when we have time, but I'm going to try and sneak in a nap right now. :)

Hope for tomorrow

It's been a rough day here, especially for Hazel. She has just been refusing to eat. She did eat her last feed, but threw it all up at 3 separate times. I can deal with the vomit, but the refusal to eat is a lot more worrisome. We're praying she feels better through the night and over the next few days so that we don't end up in the hospital before our GI appointment Thursday.

We're very excited for tomorrow though! We have an appointment at the pulmonologist (FINALLY!) and are very hopeful that Hazel will be weaned from her oxygen. She seems to be pacing herself and breathing very regularly while eating, so we think she probably doesn't need the O2 anymore! Let's hope the doctor agrees. :) It will be so nice to get rid of one oxygen machine and a few tanks. Next step, get Jude off! I can't tell you what a celebration it will be when he's off oxygen. We'll be able to carry him around freely (not hooked to a cord), leave the house more easily, and graduate from one of our specialists! We also won't always be fighting with him to tape/untape the cannula on his face, or be worrying about whether or not he's pulled it out (he's quite good at that despite our taping efforts). We're not sure if he's ready for weaning yet or not, but hopefully we'll get a better idea of how long-term this is from the doctor tomorrow.

It's going to be a busy week with 4 appointments for Hazel and 2 or 3 for Jude. Noel's feeling a bit under the weather, which is just about the last thing we need right now! He has lots going on school wise and ordination wise as well as parenting. Please pray for strength for all of us!

Weigh-in

And the weights for March 19, 2011 are . . .

Jude: 9 lb 1 oz

Hazel: 10 lb 1 oz

Good growth, babies!

Reflux, reflux, reflux

Our kids have reflux and it just complicates their care. It seems to have really flared up over the past week. They take longer to eat than normal, they throw up a lot, and they are agitated. Feeding is a battle nearly every time and we hold our breath that we will not get vomited on (or the carpet, furniture, etc.) between feeds. We have an appointment with the GI next week, but that feels like a really long time away! The medicine the pediatrician prescribed for Hazel doesn't seem to be doing anything. Please pray that we have the strength to continue doing these long feeds and that the issue will be resolved quickly after our appointment next week (it's very common for it to take a long time to figure out). Once Hillary leaves on Saturday, we are on our own for a long time. Yikes! Please pray that we will have adequate help and support, especially for the next several weeks. We're hoping things will stabilize a bit after that, but anticipate the next 6 weeks or so to be very challenging,

More Pictures

Noel decided Jude needed some socks and this is what he came up with. I laughed so hard I almost wet my pants.

Jude enjoying his bottle...not sure what the hands are all about.
Family nap time. Hillary took this and I really had no idea. I was totally out. At least I managed a few minutes of sleep this afternoon!

The many faces of Hazel and Jude

Busy

As you can probably tell from our less frequent posting, we are very busy and very tired. We would really appreciate prayers for strength, energy, and good health for all of us. Both Hazel and Jude (more Hazel than Jude) have been very slow and inconsistent with their eating. When they take 45 minutes to an hour to eat, it makes the time between feedings shorter and very small possibility for rest for us. Plus, it means they are not feeling great because they're struggling to finish their food. Hazel has just started on a reflux medicine and has an appointment with the GI next week (that makes appointment number 13 for the month). We're really hoping she can continue to eat enough until that point and not struggle so much. Hopefully we'll figure out what's going on with her at that time. Anytime we call the doctor or nurse and say she's not eating well, they say she may have to be readmitted. She's far from that in our minds, but it's definitely worrisome (as if we don't have enough other things to worry about).

Their care requires so much attention to detail and when we're so fatigued, we're more apt to make mistakes. So, please pray that our minds are able to think clearly.

We had an appointment at the eye doctor this morning and both of their eyes are almost mature. We go back in a month. At that time the eyes should be mature, which (I think) means less frequent trips to the eye doctor. Yay!

We took some cute pictures the other night that we'll try to post soon.

Playtime

Hazel and Jude don't have much interest in each other yet, but we're trying to get them to notice each other more. They seem to enjoy being on the playmat!

Feeding Frustrations

Our kids have both decided that they don't want to eat and it's so frustrating! They are both taking nearly an hour to eat and often not finishing their bottles. They are on completely opposite schedules due to them demanding at different times, which makes for feeding just about 'round the clock. Since they need to grow so much, we get worried when they don't eat well. It's exhausting and it's hard not to lose patience. Please pray that they get over whatever's bothering them soon and that they continue to grow lots!

Jude Gets His Groove On

March Madness

And I'm not referring to basketball. It's going to be a crazy month for the Snyder household. So far, we have 12 scheduled doctor's appointments this month for Hazel and Jude (more for Jude than Hazel). That's a lot! Let's hope we don't forget any or end up having to schedule more due to illness. Thankfully, we finally have appointments for both of them at the pulmonologist. Hopefully this will give us a better idea of how long we'll still need oxygen around the house. We will definitely be throwing a party when it's gone! Please pray that that day comes sooner rather than later! It will be so nice when their lungs are strong enough to be off oxygen. It will make getting out (to doctors and for short walks) much easier as well.

Just a glimpse into our feeding life: Jude is on a rotation of 3 different "formulas" to meet his calorie and reflux needs. He's also on a rotation of 4 different meds (1 he gets every feeding, the others are dispersed 2x every 24 hours). Being sleep deprived sometimes makes it very difficult to figure out which formula goes with which meds. We have it written down, but it takes every ounce of brainpower to actually execute what's written on the schedule. And then there are those times when Jude wants to eat more often than what our schedule says, so we have to recalculate when to give what meds and what formula so that the 24 hour total is correct. Exhausting. But, he's growing and rarely throwing up. That's what matters.

Hazel's much easier: 2 meds twice a day and only one fortified breast milk concoction (though we may end up going to 2 with her as well, but the details of that are hardly necessary).

We're tired. But, we haven't collapsed yet!

Out for a stroll

We've had beautiful weather the last few days, so we took Jude and Hazel out for a little stroll. We all needed the fresh air!



They've been sleeping a bit better at night, but we still have to wake them every 3 hours to feed. By the time we get the bottles ready, feed them, burp them, hold them for a little while, and go back to bed, we only get about 1.5 hours of sleep at a time. Surprisingly, we're functioning alright.

Jude has been an eating maniac today. We think that means a growth spurt! At the rate he's going, he'll catch up to Hazel in no time (especially since she doesn't feel like eating much lately).

Not much else going on around here!

Weight Check

Hazel: 9 lbs 4 oz
Jude: 8 lbs!!!!!!!!! Yay Jude!

Not feeling great

We know there are ups and downs to parenting and that all babies have good and bad days. But, when our babies have "bad" days, it feels very scary due to what they've been through. Hazel's still tired. She's finishing her feeds better but has been throwing up a fair amount. The doctor thinks she may have a small bug that she's having a tough time fighting. So, we're increasing her time on oxygen to give her plenty of energy and giving her pedialyte alternating with her milk. We're praying she's back to her old self soon and does not need more oxygen for very long.

Jude had his second shot to help prevent RSV today (it's very important they don't get this) and is not feeling great (to be expected).

Please pray our kids feel better soon! It may be a long few days (and nights).