Friday, April 29, 2011

Favorite things

Our kids have developed a few favorite things this past week.

Hazel: She LOVES looking/staring at, talking to, and smiling at her burp cloths. It's quite amusing. Many of them have lots of contrast colors on them (fantastically and stylishly made by my sister, Hillary!) and she's nuts about them! Sometimes I think she prefers them to me! Maybe someday I'll be more interesting than a burp cloth. I can only hope!

She is also nuts about chewing on her hands. We know it's too early for teething, but she's also chewing on her hands and drooling. We're not sure what's going on!

We started feeding her rice cereal on spoon and she seems to like it! We also gave her some avocado yesterday and that went quite well too! Jude's not into the avocado at all. That's okay, it's still quite early.

Jude: He has developed a horrible habit of pulling his cannula down and out of his nose and putting it into his mouth. It's so frustrating! No matter how well we tape him, he gets it out. We can't leave him unsupervised for a minute, or we'll most definitely find him with his cannula in his mouth.

On another note, Hazel had been eating great over the past few weeks (we think her new reflux medicine was helping). However, a few days ago, she started to go on eating strike again. It's almost like the medicine suddenly stopped working. Our days are now centered around trying to get her to eat enough and taking long periods of time to finish small amounts of food. This is not nearly as fun as tummy time, playing, and reading and I almost forgot how frustrating it was! Please pray that whatever is causing her discomfort is short-lived and we can get back to good eating and fun times again soon.

Wednesday, April 27, 2011

Hazel rolls!

video

Good growth!

We had an appointment with our GI doctor last week and she was very pleased with both Hazel and Jude's growth. When she measured Hazel, she was shocked and remeasured her twice to confirm that she grew 4 and 1/2 centimeters in 4 weeks. Way to go Hazel! Her weight/height ratio went down, but that's just because she grew so long. She actually made it onto her ACTUAL age growth chart for length! She's at the 5th%. She is just below the actual age growth chart for weight.

After weighing Jude, the doctor asked, "What are you feeding him?!?!" We replied, "Just what you told us to." She couldn't believe how much weight he had gained. He has caught up to Hazel! He's getting close to getting on the growth chart, but hasn't quite made it.

Both kids had labs drawn to check their bilirubin levels (they've been on medication for liver dysfunction/jaundice since they've been home). Both of their levels are now normal. Hazel doesn't need the medication anymore. Yay! Jude still needs it for a little while since one of his liver enzymes was slightly elevated. He'll have labs repeated in 2 months, and should be done with the medication by then.

Jude wants to go to Hope too!

video

Sunday, April 24, 2011

Happy Easter from the Snyders!


"Thanks, Mom and Dad!"













"I'm going to love this book! I just know it!"
"I won't smile at the camera, but I'll smile at myself!"

Thursday, April 21, 2011

Hazel and Her Dog Toy

video

More Cute

Who wants to go to Hope College?

"Now, what should I major in?"

The Snyders

Hazel finally grew into the Ergo baby carrier!

Tuesday, April 19, 2011

Too much joy for one heart to hold ...

"Hi!"

New Tricks

Both Hazel and Jude started doing some new tricks yesterday! During tummy time, Hazel pushed up so far that she rolled over. We put her back on her tummy and she did the same thing in the other direction! Then, later in the evening, she rolled from her back to her side. I think we'll have a roller on our hands very soon! She hasn't done it since, but I'm sure she'll get more consistent soon.

Jude is becoming quite the scooter. He nearly scooted off the play mat yesterday. Then we found him with the top of his head right up against the edge of his crib several times throughout the day yesterday (nap time and night time). Yikes! He's on the move when he's on his back. He still hates tummy time, but we're working on it.

Saturday, April 16, 2011

More Pictures


Feeding at the park. She still hasn't quite grown into her coat yet!

Look at how good she's getting at tummy time!

Play time!

Family photo. Kids wearing their new outfits from Becky.

Father/son matching outfit day!

The Biggest Gainer

Look out, Hazel: Jude is hot on your tail! Due to Hazel's erratic eating patterns and Jude's mad hunger, Jude is making a serious comeback weight-wise. When we brought Jude home, Hazel was a pound and a half heavier than he was. Now she's only got a couple ounces on him. Here are this afternoon's weights:

Jude: 11 lb. 5 oz.
Hazel: 11 lb. 7 oz.

Better days

We've had a few pretty good days around here. Hazel's eating "better". I use the term very loosely because she's still far from "normal", but at least she's acting hungry and eating more frequently. We're trying to figure out what causes her to "freak out" when she eats, but it's hard. If only she could talk! Talk she does...it's just not understandable. She's been very fun, smiling tons, cooing quietly, and melting our hearts. She also has the biggest pout I've ever seen (though I'm told I could put on quite the pout face when I was young).

Jude seems to be sleeping more (maybe he's growing?) and at times wanting more to eat at a time. I think he may be starting to transition to a larger volume and eating less frequently (which is exactly opposite of Hazel right now....maybe SOMEDAY they'll get on the same schedule!). He's quite the charmer as well.

We LOVE having "Aunt Becky" here and wish she could stay much longer! She bought the kids some great summer outfits for the summer weather we're having right now. We'll try and get pictures later today!

Tuesday, April 12, 2011

Another graduation!

We celebrate another graduation today! Both Hazel and Jude have graduated from the eye doctor! Their eyes are now mature and the risk for ROP is gone. We will have to go back in 6 months since they are still at risk for general eye problems due to prematurity, but we are very excited that the visits are no longer every few weeks and that we can put the worry about ROP behind us!

Monday, April 11, 2011

Daily Life/5 Months Old

Here are a few photos from the past week:
Jude's very serious about his eating. Noel is almost sleeping. This is a very common occurrence.
Trimming nails.
"Hi, I'm 5 months old! "
"This is one of my favorite looks. I really tried hard to be so serious and not smile for the camera."
"Are you kidding me about these pictures, Mom?"
"I prefer my hand to a bottle."
"Hello!"

Sunday, April 10, 2011

This past week

We had a very crazy week with tons of appointments. Luckily, not all the appointments resulted in more appointments! Here's an update:

Hazel: She met with a feeding therapist, but we don't really know what the "plan" is yet. She shut down in the middle of feeding (which is one of her "tricks") and the therapist couldn't get a good look at the inside of her mouth. She does have some mechanical/sucking issues, but we think her main issue is some sort of feeding aversion/sensory issue. The mechanical issues developed after she started refusing to eat, so it seems they are not the main problem. Overall, her energy level and interaction have been better over the past few days in comparison to the prior week, but she still hates eating. She usually starts out just fine and then about halfway through, decides she's had enough and either shuts down or "freaks out". She has finished more of her bottles over the past few days, but it's a minimum of 30 minutes since we take many breaks allowing her to calm down. Sometimes it takes 45 minutes to an hour and she still doesn't finish. At that point, we give up. Please PRAY that this gets resolved soon. Our lives would be much more flexible if she ate consistently and our whole day didn't resolve around her lengthy feeds, and she would be so much happier. Aversions and mechanical issues often take a long time to work through, so we are praying for a miracle of quick healing for her...praying that eating is not scary for her, that she enjoys it, that she doesn't have pain from reflux, that she sucks effectively, and that her weight gain is adequate. She saw the pediatrician twice this past week and will go back next week for a weight check. It's difficult to convey how frustrating this situation is, so we appreciate your prayers.

Pulmonology: We went to UCLA on Friday to see what we thought of their pulmonology department/doctors. It's GREAT! The availability is so much better. The doctor wants us to come back in 1 month, and we actually got an appointment scheduled for 1 month from now! She thinks that Hazel looks great and won't need oxygen much longer. She also said that it's possible we could try Jude without it during the day after our next visit. She wants to repeat the sleep study, but said we could do it at home! The Children's Hospital doctor said she'd repeat the sleep study in many, many months, which means she wasn't planning on making changes for many, many months. So, we're excited that this new doctor is willing to look at making changes in a month. It's quite a bit farther away, but will be so worth the drive if we can get these kids followed more closely, and off the oxygen sooner. We are most looking forward to "graduating" from pulmonology. It impacts our life so much and will be so great to be done with.

That's about it!

Thursday, April 7, 2011

A week of mini-graduations

This week our family has three mini-graduations to celebrate!

On Tuesday, I went before my ordination committee, and they certified me "ready to receive a call," which in the Presbyterian system means that I can now actively search for ordained positions. (Should I receive a call to one such position, I would be ordained at that time, pending Presbytery approval. So I'm not ordained just yet, but I am a lot closer.)

On Wednesday, Jude had an appointment with the neurologist, who said that the ventricles in his brain were on the large end of normal and everything appeared to be draining properly, so he doesn't need to ever come back unless his head swells in the future. Praise God! We are very happy about Jude's "graduation" from the neurologist.

Then this morning, Jude had an appointment with the cardiologist, who said that everything looked fine with his heart, so he doesn't need to come back until four to six months from now. (He still needs to be monitored as long as he's on oxygen, since that can cause strain on the heart.)

So a week of mini-graduations! Cheers!

Monday, April 4, 2011

Feeding therapy to the rescue

We got a call from the OT today who has been assigned to come to our home to provide Hazel feeding therapy. She's coming by tomorrow! We hope that this, combined with managing Hazel's reflux, can help her eat better. She's been taking only about half of her bottle now (if that) before freaking out and refusing to take any more.

Jude earning himself a bath, too

Don't pay attention to this post if you have a weak stomach. Heidi thought you all might also like to see how Jude earned himself a bath the other night. The one time we put him in his sister's bouncy seat, with her nice yellow blanket in it (thanks Susan!), we started to smell something. Sure enough--blowout. Inside AND outside the diaper, and all the way down his leg. Good thing those blankets wash up so well!

Bath-time fun

For your enjoyment, here are a few pics of Hazel having fun in the bath. She's still not eating well, but she sure loves being cleaned up. She earned this bath last night by expelling her entire bottle back onto herself and, of course, her mother's lap.



Sunday, April 3, 2011

Thank you!

We are BEHIND on thank you notes. So, to those of you who have sent us stuff in the past month or so, please know that we are very appreciative. We are just having trouble finding a spare moment in the day to let you know! Your gifts are not taken for granted and we are grateful. Belinda, THANK YOU so much for the delicious cookies!!!!! I ate them all (a bit too promptly!) and am grateful to have the ingredients to make more! Steve and Tiffany, thank you for the book! It's adorable! SMCC family, thank you for so many delicious meals and other support. Neighbors and friends, thank you for baby help and household help. We owe many many more and could not be doing this without all of you.

Good day

Thank you for your continued prayers! Hazel had a really good day yesterday. We're praying that it's the first of many to come. She's still not quite her old self again, but she was less lethargic and ate more than she has in a few days. Thank God! We're also praying that the right specialists see her this week and help us figure out how to help her. Until then (and after then), we're praying for a miracle of complete healing for her little body.

Jude is rockin' and rollin' these days. He is an eating machine and doesn't appear to have reflux anymore. We don't even have to hold him after he eats! It's amazing! He was at the GI this past week, and although his growth velocity is fantastic, he's still very slender (3rd % height/weight ratio) so the GI said we should up his calories. In the past, Jude has always thrown up on higher calorie "diets", but he seems to love his new plan. He has been finishing his bottles in record time, burping like a champ, and then playing or sleeping right away rather than groaning in pain and fighting to keep his food down. It truly is a miracle. We also have transitioned him to ALL breast milk (mixed with rice cereal and formula for calories). He has never tolerated all breast milk, but now he seems to love it! Our freezer is no longer backing up out of control. Thank you, Jude!

Friday, April 1, 2011

Hazel

Our dear little Hazel is in need of much prayer. Over the past few weeks, she has had difficulty eating (as we have posted), but she has also become very lethargic and a bit withdrawn. We thought it was a temporary thing, but she's not getting better (she's not dehydrated, which could cause lethargy...it's something else). We don't know what happened to her, but we're very concerned. We've been concerned for awhile, but became even more concerned this morning when the OT who evaluated her awhile ago was here evaluating Jude and said that she looks like a completely different baby than she did a couple months ago. Her muscle tone is not as good, she's so lethargic, and has not made any strides in social development for quite some time. She was doing so great for awhile. We knew she had plateaued a bit, but it just seemed to really be brought to our attention this morning. Please pray that our Hazel "comes back". We miss her funny personality and seeing her develop.

The OT is recommending Jude for physical therapy as his gross motor skills are very delayed. He's already "catching up" socially, but has a lot of growth to do motor wise. She evaluated his gross motor skills to be at about a 1 month level. Other skills ranged from 2-4 months. She suggested that we get Hazel reevaluated for PT and to suggest to her feeding therapist that she get additional OT each week. Hopefully we'll be able to figure out what's going on with her soon.

Sometimes it feels like we'll never get passed the "fear" stage (more my perspective than Noel's) and it's so exhausting.