Monday, May 30, 2011

Happy Memorial Day!



Daddy/Kid time


Family Movie Night

Daddy/Daughter reading time

Sunday, May 29, 2011

Jude talks too!

Jude entertained himself for a good 20 minutes like this!

video

Friday, May 27, 2011

Hazel's voice

Hazel is "talking" more and more. She was laughing and blowing bubbles a lot before I started the camera, but stopped doing it once the camera appeared. Anyway, here's a little glimpse of some of her new sounds.
video

Some of Hazel's other favorite new things:
  • Her daddy - she lights up whenever Noel's around
  • Showing her excitement by "flapping" her arms and legs
  • Putting EVERYTHING in her mouth
  • Rolling from her back to tummy

Hazel, Jude, and Dr. Yamaga say, "Don't worry so much!"

We had a great appointment at the GI yesterday. Even though the kids didn't gain any weight in over a week, their overall monthly gain was still very good. Hazel's was better than Jude's and she is even closer to getting on the growth chart. Jude is growing and is following the curve of the growth chart, but not making any progress getting up to the curve (he's just following steadily below the curve). We're still trying to figure out why the kids aren't eating well and what's causing them so much discomfort, so we have lots of new things to try. We started a new reflux medicine this morning, we're switching the formula that gets added to the milk to one that's easier to digest, and we're giving Hazel a medication to help her empty her stomach and intestines a bit faster so she doesn't get so filled up with gas. We are hoping that all of this enables them to not have any more stomach pain, which in turn should help them eat better. And the best news is, we got permission to let them sleep longer at night! Woohoo! We slept for nearly 7 hours straight last night (though we still woke up COMPLETELY exhausted).

Wednesday, May 25, 2011

Tired

We're still baffled and frustrated at both of our kids refusal to eat. It just doesn't make any sense. Are they both having bad reactions to their reflux medicine? Is it something in the milk? It seems like our days are filled with these conversations, trying to make sense of something so that we can help our kids. One of the most frustrating parts of their poor eating is the fact that we can't let them sleep through the night. We let them skip one feed, but usually wake them up at 4 AM or so to eat again. This makes us VERY tired (since we often don't go to bed until midnight) and frustrated (especially when we're waking up to feed babies who don't want to eat!). Even with waking them up in the night to eat, they don't eat enough in a 24 hour period. Neither of them have gained any weight in over a week. This is very concerning to us and we're just praying that things will turn around soon. Thanks for you prayers.

Tuesday, May 24, 2011

Rough Days

We've had a rough couple of days here. Hazel's eating refusal is really bad again and both kids have barfed a number of times in the last 48 hours. We finished feeding them this morning and thought it'd be fun to take them for a walk in our new stroller. But, as soon as we got them buckled in, Jude barfed all over the place (himself, the new stroller, the carpet). Needless to say, we never made it out for the walk.

The kids (especially Hazel) are in need of prayer. Her eating problems have been going on for a long time and we can't seem to find a medication that helps. Therapy has not really helped either. So, we just keep praying that she'll be healed. She has started gagging when spoon feeding now, which she never used to do. It's frustrating to feel like we're going backwards, and hard to see her in so much discomfort. We have an appointment with the GI on Thursday and hope to get some answers.

Sunday, May 22, 2011

Wiping Hazel's Face

It's so hard to capture Hazel's smile on camera, but here's proof that she does smile! She loves getting her face wiped after eating.

video

Saturday, May 21, 2011

NICU Reunion!

Huntington Hospital has a NICU reunion every year and it happened to be today. We were so excited to go and show off the kids. Most of the nurses and doctors recognized us right away and were thrilled to see Hazel and Jude. We were a little nervous being in such a big crowd and are really praying that no one there was sick. Overall, it was a great time connecting with the families we met while in the NICU, chatting with the doctors and nurses, and seeing so many older kids doing so well. Unfortunately, the camera never made it out of my purse. :(

Friday, May 20, 2011

Report from Gramsie

Guest Blogger: Gramsie (Heidi's grandmother)

A great-grandmother's perspective:

What a privilege it has been these past few days to meet and enjoy the babies for whom we have been praying these many months. They are amazing! They have made so much progress. Jude is the little man, very communicative. Hazel is the sweetest little girl. She seems a little quieter than her brother. We have also seen what awesome parents they have. It is definitely a 24 hour job. The babies still have some eating problems and we were able to witness first hand how frustrating it can be when they refuse to eat. They have had more good days than bad since we have been here, but the barfing still transpires at times. Heidi and Noel work together as a team, but the mornings when Noel is at school are extremely busy for Heidi. We have been happy to be a part of those mornings, helping with breathing treatments, washing endless bottles, and just holding and loving them. There is not time for much more than caring for babies. Tonight we took them on their first restaurant outing. They behaved wonderfully and the restaurant was pretty empty, so there were no people to give them germs. We hate to leave tomorrow not knowing when we will see them again. We leave them entrusted to the care of their Heavenly Father and their loving parents. Praise God for answered prayers, thanks to all of you.

Thursday, May 19, 2011

Mr. Social

Gramsie and Grampie are here visiting for the week and Jude is having a blast! He loves "talking" with them and charming them. He even giggled tonight. So cute!



Tuesday, May 17, 2011

Stomach issues

Both kids continue to have stomach issues. It's hard to tell if it's just reflux and we haven't found the right medicine or if they've developed food sensitivities or something else. Bottom line is that it's frustrating. We try to keep them on a similar schedule, but when they refuse to eat or barf, it's impossible since eating is the main piece of a good schedule. Please pray that their digestive systems are healed and brought to full maturity quickly. We hate feeling like we're force feeding, but they just don't want to eat. We feel a lot of pressure from the doctors to keep them growing rapidly, so this has become a very stressful issue for us. Thank you for your prayers!

Hazel found her thumb

Tummy time together

Now that Jude's getting a little better at tummy time, we are trying to get the kids to play together more. It's not working great yet. :) Jude is much more interested in Hazel than Hazel is in Jude.


Sunday, May 15, 2011

Goodbye oxygen machine!


On Friday, the guy from the oxygen company came and took away this noisy, heat-emitting monster, since Hazel doesn't need it at all anymore! Goodbye machine. We won't miss you.

Friday, May 13, 2011

Sleep study results

Hmmmm, I'm not sure what's up with blogger. It was down all day yesterday and now our most recent post has disappeared. Anyway...

Noel dropped off the sleep study equipment yesterday morning and 3 hours later the doctor called with the results. She's amazing! I can't believe how attentive she is to us. Hazel is now completely done with oxygen. Woohoo! We had to put Jude's on oxygen during the night since he started "desatting" after about an hour and a half. So, we already knew he was still going to need it for sleeping. The doctor thinks he's borderline and will just need another month. Yay! Our house is so much quieter without the oxygen running all the time and we no longer feel like we're sucking all the energy from the City of Pasadena. We are so excited about the progress made this week and look forward to going back to the doctor in a month. Hopefully Jude will be ready at that time to be oxygen free! Thank you for your prayers.

Wednesday, May 11, 2011

Sleep study tonight!

We're gearing up for a sleep study tonight. Noel was able to pick up the equipment from UCLA today, so we're going to try the study tonight. Hopefully the doctor will read it soon and the results are good. We hope the kids are done with oxygen, but as the doctor said, "If they fail, no big deal. We'll just try again later." It is no big deal, but it would be SO nice to get these machines and tanks out of our house! Plus, it would be great to not have to worry about whether or not they've pulled their cannulas out in the middle of the night. Not to mention our lives being a million times less complicated! The kids are both still on their breathing treatments, which are time consuming, but appear to be helping (especially Jude!). Anyway, the kids are supposed to be sleeping right now, but they have other things in mind as you can see below.

Tuesday, May 10, 2011

Notice Anything Different?

"Hey world, notice anything different about me?"

"What is it, Jude? Did you get contact lenses?"

"No."

"Did you shave your mustache?"

"No.

"Did you get a haircut?"

"No.

"What is it? Tell us!"

"No more oxygen!"

"Woot woot!"

That's right, folks. Jude went to the pulmonologist this afternoon with his sister Hazel, and the doctor determined that he doesn't have to wear his oxygen anymore! He'll still wear it at night and during naps, but during waking hours Jude is now cordless. Thank you all for your prayers. God has granted our petitions.

The next step is for us to run a home sleep study with a pulse-0x to determine if Jude and/or Hazel still needs to wear the oxygen during sleep. But just getting rid of the oxygen during the day is a huge step for Jude and a big relief for us all.

Cheers!

Monday, May 9, 2011

6 months old...





...and looking oh so happy!

Hazel plays the maracas


video

Hazel's showing off her new Cinco de Mayo toys from Grandma and Grandpa and I think she's celebrating Mother's Day as well. Jude's squawking in the background. :)

I had a great first Mother's Day! I took Hazel to church for the first time while Grandma and Grandpa Snyder stayed home with Jude. Hazel found her voice yesterday and chatted with me for a long time. She even giggled! We had a nice take out lunch with Mom and Dad Snyder and then had some great family time in the evening, which included skyping with Mom and Dad Dykema. Noel got me some great gifts and I felt very honored.

Thursday, May 5, 2011

Jude and Hazel taking an interest in each other

video

Hazel likes applesauce!

video

Hoping!

We have an appointment with the pulmonologist next week and we're really hoping that each of our kids will be ready to move to the next step with their oxygen requirements. For Hazel, that would mean NO oxygen. For Jude, it would mean oxygen for sleeping only. He's become a master at pulling out his cannula and eating it, so at least he thinks he's ready to live without it! This is the one area that impacts our life more than any other, so please pray that they have both grown enough lung tissue to make these transitions!

Tuesday, May 3, 2011

Phone Pics from this Week

Jude doing great at tummy time!

Hazel and her play fruit

Mommy/daughter nap time