Thursday, July 25, 2013

Our Journey with the Blenderized Diet Begins.

Yes, it may be a bit premature (excuse the pun) as we have another 2 weeks before we meet with the nutritionist, but the more I read about the blenderized diet, the more I couldn't wait.  After our GI appointment where our doctor was on board and hooked us up with a dietician who could help us down this path, I really thought I could wait.  I did.  But if you know me, you know I'm not the most patient person.  So, when the cardiology and pulmonary doctors started harping on his ever-plateauing weight curve, I got the itch to take matters into my own hands.  They were recommending things like adding more powder to his formula to make it more concentrated at 22 calories, or even just switching over to pediasure, which is like formula on steroids.  The first two ingredients in his formula are corn syrup solids and sugar.  The first two ingredients in pediasure are water and sugar.  How in the world is that gaining weight in a healthy way?

So, here's my logic.  These doctors were fine with me gradually switching over all of his feeds to pediasure, which has 30 calories per ounce.  They said the goal was to "gain weight in a healthy way."  Alright then...if I can feed him a diet of blenderized real food that has the same number of calories per ounce as the pediasure, shouldn't that be meeting the goal?  We're all on the same team here, right?  I mean, those were his words..."Gain weight in a health way" he practically told me to do this blenderized diet thing in so many words as far as I'm concerned. ;)  ***DISCLAIMER  Please remember that I am NOT a doctor.  I just think that sometimes mommy's instinct paired with a lot of research and awesome internet friends who are full of advice can trump what a doctor thinks.  But, that's just me.  I'd be happy to answer questions or toss around ideas, but every child is different so what works for us may or may not work for you!

OK, so now that you've heard all my logic, here's what we've done so far.  The night of the appointment where they told us to pack on the pounds, we switched his night time feed from formula to pediasure.  At that point, I was willing to try whatever they said to get the pounds on this kid.  This was on Monday the 22nd, so his feed schedule looked like this:

7:30am - 190ml formula
11:30am - 190ml formula
3:30pm - 190ml formula
8:00pm - 190ml formala
11:00pm - 190ml pediasure

We chose to switch over the night feed first because he tolerates that feed really well since he sleeps right through it, plus we figured it would give him a chance to digest all those calories before waking up and trying to eat some solids by mouth.  I was already cringing at giving it to him because his OT who works on feeding therapy had mentioned that in her experience pediasure really makes kids feel full all the time and they lose the motivation to eat orally because they just don't have the sensation of hunger.  He tolerated the first night pretty well, so the next morning we decided on a whim to just give a little blended food a shot.  We would start out slowly and just mix up some things he's already eating by mouth and then blend it with the formula he'd be getting anyway.  I chose to mix mostly prunes because I really wanted to help him out with his constipation issues, but also added some organic yogurt, banana, and coconut oil.  Wouldn't you know, that day he FINALLY cleared out his bowels.  Of course it was while he was hanging out on the beach with Daddy and his nurse while I was in a common core planning session for my school district, hahaha.  Good timing, buddy!  The rest of his feeds that day were formula and then we did the pediasure again at night.

Yesterday we decided to skip the whole mixing the blend with his formula and used organic whole milk and water to thin it out instead.  So, his afternoon feed was nothing but real food blended up.  I put more prunes, some pureed chicken, whole milk yogurt, apricots, and coconut oil.  It certainly smelled good, and he didn't have any trouble getting it down his g-tube.  When it came time for his next feed, we decided to go for it and made him another blend and skipped the formula.  His overnight feed we continued with the pediasure, mainly because we have a 6 pack to get rid of and it does have a lot of calories in it, but I think once we run out we'll be sticking to real food all the time. 

In just 2 short days, here are the improvements we've noticed:
- He has pooped regularly every day since we started (this is extremely rare for him) and the poop has actually changed from weird super stinky poop to normal baby poop!  In TWO days!!
- His skin feels softer and is less red and irritated around the tape on his cheeks (I think this is from all the coconut oil).
- He seems happier and more alert.
- His reflux is on its way out if not already gone completely.  He did throw up on me this morning, but it was completely due to his gag reflex while he was trying to eat some solids.  He hasn't acted refluxy at all since he started this diet.
- His oxygen sats have been better!

So, for the evidence on the oxygen sats:  The past 2 nights when we've put him to bed and put his pulse ox on, he's been satting 99/100.  His normal for the past few months has always been 96-99 and when his prongs come out he desats to 89/90 and his alarm goes off.  Well, this morning when I woke up I walked by his room and checked his monitor since he was still sound asleep and it said 96.  I was a little bummed since he'd been satting so high, but didn't think much of it since 96 can be normal for him.  I went into the kitchen and made some coffee and listened for him to wake up.  No sounds of stirring came from his room, so I walked by and checked the monitor again.  This time it said 95, and I thought, maybe he slid down in his crib and is crunched up in a bad position and that's why his sats are not so great.  (He sleeps on an incline due to his reflux, so this happens sometimes...we'll walk in to find him curled up on the pillows we have at the bottom of his crib for that purpose).  So I go in and turn on his little night light, and he's sleeping fine, but I see that his prongs are actually sitting on top of his nose!!  Do you know what that means?!?!!  For who knows how long, his prongs were out, and he never set off his alarm.  I never even saw him go below 95, which according to pulmonary is an acceptable oxygen saturation level!!  I quickly popped his prongs back in and watched him shoot back up to 99 as I let the relevance of that event sink in.  I don't know if we can attribute all of this to blenderized food, or if he's just finally getting those lungs to heal and grow, but I'm just praying that this is a sign that we are doing all the right things for him to get him off that oxygen and breathing on his own.  In my mind, the blenderized diet is definitely helping, though!

So, we are all stocked up on the best foods for fattening him up the healthy way, and our plan is to continue with the blenderized food as long as he continues to tolerate it, which will hopefully mean for good until he gets off the g-tube and starts eating on his own.  Our appointment with the nutritionist should be interesting...she'll either be really proud of us or really mad at us for not waiting to talk to her first.  We shall see!

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A Few Appointments to Update.

Pulmonary Hypertension Clinic:  Last week we visited the CHOC pulmonary hypertension clinic with Ryan's Cardiologist and Pulmonary Doctor.  The message of the day was WEIGHT GAIN.  So, last month at this clinic it was "Get the reflux under control."  We did that.  We switched to omeprazole and also decreased the volume of formula he was getting, and we actually noticed a HUGE improvement the very next day.  Which to me says that it was more about the volume than the meds, but I guess we'll never know.  As long as he keeps this up and continues to gain weight, we should be able to talk to GI about weaning off the meds at our next appointment.  So, since his reflux appears to be under control, his doctors were really pushing the weight gain.  We had a chest Xray done before this appointment, and you can definitely still see a lot of white haze in his lungs.  There's a noticeable improvement from his previous Xray, but there's still much more white than their should be.  The only thing that can get rid of that white is growth of new lung tissue, which comes from weight gain.  But, there's a fine line.  We don't want to pump him so full of formula and pediasure that he starts throwing up again, so we've started up with something that I'll talk about in another blog post (because it truly deserves its own) called Blenderized Diet.  I'll end this by saying that at the time of this appointment, he was still desatting to 89/90 when he would pull his prongs out at night.  They said that was evidence to show that his lungs just aren't healed yet, and that the number one push now should be for him to gain weight in a HEALTHY way.  That's all you had to say to me, doctor. ;)

General Surgeon:  Today we met with Dr. Lam who is the same general surgeon who performed the penrose drain that helped heal his bowel perforation when he was only 8 days old.  We've been meeting with him and speaking with him over the past few months because Ryan has been battling constipation issues (I should say "had been battling" as you will see in my new post about blenderized diet!) and that has caused a little abscess to develop on his poor little bum.  He's already been on 2 rounds of antibiotics to get rid of it, but now that it came back for a 3rd time, it's time for a quick and easy procedure to drain it and seal it up once and for all.  He said he would schedule us for it soon and it would be a quick outpatient procedure that shouldn't take more than 5 minutes.  It will be nice to have that issue done with so we can have one less thing to constantly worry about!

Coming soon:  We have an appointment for our first hearing aid evaluation next week, which I am super excited about.  I will update you on that one as soon as possible!  Thank you for the continued love and prayers for our little guy!

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Saturday, July 13, 2013

Reflux Update

Kids are both still sleeping, so here we go!  I'm on a roll today!  So last time I update on the reflux situation, we were on the fence about trying reglan and decided to persuade our doctor to let us try omeprazole first.  Well, I'm almost afraid to type this out, but :::whispering::::'s working!!!  Shhhhhhh!!!!
It has been about a week since he's thrown up anything significant.  He does have a few moments, especially when he's eating solids or chewing on a toy, where he'll hit his gag reflex and maybe even throw up a tiny bit, but it's been a GOOD, long stretch since he's really thrown up like he used to.  The crazy thing is, we changed 2 things at once, so of course there's really no way to know what made the difference, but whatever.  As long as he's keeping his food down, I'm happy!  The other thing we changed besides the med was his feed volumes.  Again, I'm going to whisper here because this was totally against our GI doctor's advice, but I just felt like he was getting SO full from all the formula he was getting.  I was aware that our GI dr has to recommend the highest volume possible because his main concern for his lungs is weight gain.  But to me, Ryan is chubby.  He's gaining weight well.  So, I cut his volume down slowly but surely.  His orders are to get 33 oz a day, and now he's down to just under 30.  I figured if he's throwing up a few ounces a day anyways, wouldn't you rather him just take fewer ounces overall and NOT throw up and risk aspirating??  Plus, having had Dani full term prior to Ryan has been a huge help.  I know that at Ryan's age, she never took that much breastmilk in a 24 hour period, and she grew and developed just fine.  When I did some research, the typical amount for a 12 month old is anywhere from 24-32 ounces, so he was wa up there at the highest end of normal.  Even now with the decrease, he's still on the high end of normal, and at least now he's not throwing up!  But wait, there's more.  Now that he's not as full on formula, he's been making HUGE gains in his solid food intake!  It's seriously magical to watch him actually open his mouth for food, grab the spoon and just chow down.  Yesterday he ate a good 2 TBSP of oatmeal mixed with apple and strawberry puree.  It was the most he's ever eaten in one sitting, by far. 

I want to put the disclaimer out there for any other preemie moms who might be reading this who are also dealing with feeding's really hard to know when to trust your gut vs. following the doctors orders, and that's something you have to decide for yourself and your child.  This has been months of struggling with food, and we are nowhere near overcoming his feeding issues, but this has been a huge step in the right direction.  I would encourage you to continue to talk to your GI doctors and make them explain exactly WHY they are doing certain things.  Do your research and figure out what you think would work best for your child, then advocate for that.  Your doctors should listen if they are good at their job because you know your child better than they do.  I'd be happy to answer any questions you may have, and there are lots of great resources out there on the internet.  If anything, maybe I can point you in the right direction for a resource that could help.

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Neurology Update

You'd think being on summer vacation, it would be easier to keep up with my updates, but we have been blessed to be "busy" with fun, family activities and relaxation!  I wanted to take advantage of both kids napping right now to update on Ryan's first neurology appointment.  First, I should start by attempting to explain the difference between a neurosurgeon and a neurologist.  Actually, scratch that.  I'm not even going to try, because I really can't say with certainty that I know the difference.  But, I do know that when the head ultrasounds were showing mild hydrocephalus, they wanted us to see a neurosurgeon and not a neurologist.  Now that he has been cleared by a neurosurgeon, but we are still concerned about his significant developmental delays and certain behaviors or movements/habits he has, our pediatrician referred us to a neurosurgeon.  So, I guess I'll go ahead and try to explain the difference after all.  If I were to take a guess, I'd say the neurosurgeon is for acute issues that may require surgery (hence the doctor's title including "-surgeon"), and a neurologist is more of a doctor who will follow his behaviors, habits, and development of his brain (hence the -ist ending.  As we all know in 2nd grade, -ist means "a person who does or studies the base word").  But, I just made all that up out of thin air, so please don't quote me.  Unless I'm right.  Then you can quote me all you want.

Ryan had his neurology appointment with Dr. Lake.  She was very nice and easy to talk to, and she took her time answering every question we had about ANYTHING.  If it was way outside of the realm of neurology, she would honestly tell us she wasn't sure and let us know which specialist would be best to talk to about the issue.  I will be honest, I was a little nervous going into this appointment.  We had to main things we wanted to go over:

1.  Is there any way to know if his profound hearing loss is due to a neurological issue, in which case, would a cochlear implant not even work for him?

2.  What are all these long and scary looking words on his brain MRI report, which I may or may not have googled thoroughly?

I'll try to recap 45 minutes worth of information to the best of my ability.  If you have any questions, please feel free to ask me or leave a comment and I will clarify.  So, for question number 1, Dr. Lake was VERY optimistic about Ryan getting Cochlear Implants.  She examined him and did a few behavioral assessments with him, and she was really pleased with what she saw.  Yes, he is delayed.  He is definitely not where he should be for an almost 16 month old, and he's really not even close to where he should be for his adjusted age of 1 year.  She placed him around the 4-6 months stage just based on her quick assessments.  I know to many that may sound disappointing, but I can't tell you how proud I was.  Just a few months ago at his NICU follow-up evaluation, he was still testing out at the 1 month level, so this was a HUGE improvement!  Plus, when you take into account that so much of our development comes to us through our sense of sight and hearing, both of which are impaired or non-existent in Ryan, it truly is amazing how much he has accomplished.  Which is a big reason why she was so optimistic about the CIs.  She said she couldn't wait to see how he responded to them.  She did warn us, just as Dr. Luxford from House Institute mentioned, that they can take time to start showing results.  It's not like a magic switch that turns on and he suddenly hears.  Sound will begin to enter his brain, but his brain won't know what to do with it right away.  It can take up to a year for him to really process what the sounds are and what they mean, but that's why it's so important for us to start this process sooner rather than later.  The very next day I made his appointment for the hearing aid evaluation and trial.  We will be doing that through Providence since it is here in Orange County and will require lots of driving to appointments, but after the 6 month trial period, if we don't see any results from the hearing aids, and as long as his pulmonologist and cardiologist clear him for surgery, we'll be heading back to House Institute for the Cochlear Implant.

For our second concern, we had Dr. Lake go over the recent MRI findings with us.  This MRI was the one Ryan had done in May to check his auditory nerves and inner ear anatomy.  The tech also took some extra slides of his brain because I had mentioned concerns about possible neurological issues.  The report came back with a paragraph written about the radiologist's findings.  Only one sentence was about the auditory nerve/inner ear, and it just said everything there looked normal.  The rest was talking about his brain.  It mentioned things like ventriculomegaly, thinning of the corpus callosum, hypomyelination, etc.  Yeah.  Not pretty, and do not google any of that like I did!!  Here's the good news.  She said that all of these findings are VERY common with preemies.  She could've handed that report to any other doctor worth his salt, and he/she would've looked at it and said, "Oh, was this patient a preemie?"  There's no way to tell right now what this will all mean for his future development, but there are lots of preemies out there who have overcome issues like these and even worse.  Basically it means his brain hasn't fully developed to where it should be quite yet, but we already know that just based on his behavior.  And who knows how much he will develop and improve once we can get some sound input into his brain. 

So, this is all just part of the journey and Ryan is moving right along at his own pace.  This was a very nice bump in the road because I was honestly scared she was going to be yet another gloom and doom doctor.  Her hopefulness and optimism was definitely contagious, and we can't wait to see how much Ryan continues to improve.  We feel blessed to be his parents, and he amazes us with his strength every day!

I'll end with a few pictures from our summer so far:

Ryan enjoying the 4th of July - his little hands are so big, and look how long his legs are getting!

Walking around Fashion Island:

Backyard campfire:

Taking a nap on daddy while visiting Uncle Glenn and Monica:

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Tuesday, July 2, 2013

Ryan's First Unbirthday!

Since Ryan's actual birthday fell in the middle of flu season while we were still on preemie-no-germs lockdown, we decided that we would hold off on having people over to celebrate until his adjusted first birthday.  It just so happened that June 29th was the perfect Saturday for his party, and it was also the date my c-section was scheduled for Ryan if we made it that far (he was actually due on July 3rd).  God had other plans for our little man, so he came into our lives on March 20th instead.  We still felt that he deserved to be celebrated for his amazing accomplishments over the past year and 3 months, so here are a few pictures from his "should've been" birthday party!

 We did a turtle theme..."slow and steady wins the race!"
 The birthday boy!

Ryan especially loved seeing one of his primary nurses, Julie, and one of his NICU developmental therapists, Jenn. 

Thank you so much to everyone who came and made this such a special day for Ryan and our family.  And everyone else who was there in spirit, please know that you were missed, but we totally understand. :)  There will be many more opportunities to celebrate Ryan's amazing accomplishments in the future!

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Ok, so I keep telling myself I need to sit down and type up an update because every time I fall asleep I review everything and work out what I will say, and then the next day something changes.  So, I need to just get this all out and catch everyone up before it all changes again!

Last week on Monday, Ryan had his pulmonary hypertension clinic appointment where we get to meet with the cardiologist and the pulmonologist in one sitting.  This would be the perfect scenario if we could just get his GI doctor in there as well.  The cardiologist went over the echo from the previous Friday, and said that his numbers looked better and more normal (YAY!), but didn't give me much information other than that.  So I asked him, "Did you guys get a number, because in March the number was 30."  And he goes, "Oh, yeah.  It was 24 this time."  Apparently this is more in the normal range, which is good news, but I liked it a lot better when they used to tell him his pressure numbers were "unreadable".  So there won't be any change in those meds and we will follow up again this month.

The pulmonologist was Dr. Y who has known Ryan forever.  She had mentioned at the last clinic in March that this would likely be the appointment where we could start talking about weaning him off oxygen.  Unfortunately, that wasn't the case.  I told her how he still desats at night if he gets his cannula prongs out of his nose, and she asked how low he dropped, and I told her 89/90.  Dropping that low still means that he's not ready to be without it.  She said that since his weight gain has been good, that and time should've done the trick by now to help heal is lungs, so she's surprised he is still desatting.  Her theory is that his reflux isn't under control yet.  I told her how he wakes up in the mornings very congested and mucusy, and she said it's likely from refluxing overnight.  To me it seems more like a respiratory thing, maybe allergies? But I'm not a doctor. ;)  So, she said to talk to our GI doctor about trying a medicine called Reglan, otherwise, if that didn't work, we might have to talk about a fundoplication which is a surgical procedure where they sort of flip the stomach upside down so that the esophagus is facing down instead of up and it makes it physically impossible to reflux/vomit anymore.  I'm really hesitant to do that one because I've heard a lot of parents say from personal experience to try to avoid it if at all possible. 

As I was walking out with Ryan, I just happened to run into our GI doctor in the hallway!  So, I told him about their concerns with the reflux, and he said he agreed and would call in the reglan right away.  I told him not to rush because we were heading out to our Palm Springs mini getaway straight from that appointment.  While on vacation, I did a lot of research on the side effects of reglan.  I remember they've mentioned it in the past, but didn't want to give it unless it was absolutely necessary because it can have some pretty nasty neurological side effects.  I asked people in my preemie mom group, I asked on the Mommies of Miracles Facebook wall, etc.  The majority of people said that they would avoid reglan if at all possible.  Many of them also mentioned omeprazole as a great alternative to try.  Wednesday morning, while we were eating breakfast at the hotel, our GI doctor called me to let me know he had sent in the prescription for reglan.  I told him my concerns and asked if we could try omeprazole, and he said it would be the same as the med he is currently on, lansoprazole.  The -prazole ending means they are in the same class of medicines and they do the same thing, they are both acid blockers.  So I said ok, go ahead and send in the reglan, and then of course I did more research.  I really have to thank my preemie mom support groups because I don't know what I would do without them.  Finally, we decided that the neurological risks were too great to try reglan without at least trying the omeprazole first.  Yes it may be the same class of medicine as lansoprazole, but who knows if his body has become immune to this med and the slight difference could make a change in his reflux.  It's worth a shot.  So, I called the GI doctor back (he seriously must hate me by now) and had him change the reglan to omeprazole.  So, please cross your fingers and say a little prayer that this medicine helps his reflux so his lungs can finish their healing!

In the meantime, as we wait to see that improvement, we made an appointment with the NP and head GI doctor at CHOC for next Monday, just to get another set of eyes and brains on Ryan in case there's anything we are missing.  Then we have the long awaited neurology appointment on Tuesday.  Should be lots of interesting things to report next week!  Thank you for continuing to keep Ryan in your thoughts and prayers.

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