Thursday, February 28, 2013

March for Babies

A few weeks ago, I attended the Orange County March for Babies kick off luncheon, and since then I've been tossing ideas around in my head about how to really write about why this walk has become so important to me.  It seems like every time I have a quiet moment, which is typically either those few moments before I fall asleep or the 5 minutes I get when I'm washing my hair, I start writing this post in my head.  And then editing and revising and rewriting.  Wash, rinse, repeat.  I think of things I don't want to forget to mention, anecdotes I want to be sure to share, and mostly I just meditate on the gratitude that I have for this little boy of ours as I am reminded that the March of Dimes is such a big part of why he is even here with us today.  I guess the reason why I support the March of Dimes is described in this statement copied and pasted from their website:

Funds raised in March for Babies support research and programs that help moms have full-term pregnancies and babies begin healthy lives. And they will be used to bring comfort and information to families with a baby in newborn intensive care.

I found that on the bottom of our Team Ryan Aprea fundraising page when I was updating the information since it was leftover from last year.  I actually had a little pang of guilt deleting what I had written just a few days after he was born, "Ryan was born on March 20, 2012 at 25 weeks gestation.  He's doing extremely well at CHOC's NICU under the excellent care of their doctors and nurses."  Something like that.  Reading that made me flash back to that time right after he was born.  I was in such a daze.  Never in a million years did I think we would be in the NICU another 6-7 months.  At that point, I was living day by day, holding onto ANY preemie success story, hanging off of any word a doctor or nurse would give me about how Ryan was doing, not knowing anything about how much our lives would be changed forever.  Most of all, I was trying to stay positive, as evidenced by the sentence where I described him as doing extremely well.  That was a bit of an exaggeration, but I think you all know that by now.  Our little fighter has done extremely well for what he has been dealt, there's no question about that.  He has fought his hardest and powered through more hurdles in the past year than most people do in their lifetimes.  But let's be honest, he's never been extremely healthy.  I have complete faith that there will be a day when I can say he's doing extremely well (and mean it), and I know that it will not have been possible without so much of the research and support that the March of Dimes gives.

I guess what I'm trying to say, without sounding like a horribly cheesy sales pitch, is that the March of Dimes really does do all that it says it will for pregnant moms and their babies.  I know for a fact that 2 of the treatments Ryan received in his first day of life to help his underdeveloped lungs work (surfactant therapy and nitric oxide therapy) were researched and developed with grants funded by the March of Dimes.  They have also funded research on ROP and how oxygen support can affect the development of the retina leading to vision impairment.  One of the speakers at our luncheon was actually from a sponsoring company called Masimo, who created the pulse oximetry monitor that we use on Ryan at home.  This machine monitors how much oxygen is flowing through his blood so we can prevent him from getting too much oxygen, which can affect his vision.  It was amazing to hear him speak about this technology that I was already so familiar with while so many other luncheon attendees were ohhhing and ahhhing at how fascinating and innovative it seemed.  Don't get me wrong, it is definitely fascinating and innovative, but after almost 11 months of it the novelty of it wears off, I guess.  I just thought it was so fitting that this company was one of the sponsors for Ryan's March for Babies walk.  The March of Dimes also had other NICU experienced moms call me just to check in.  I didn't realize at the time how valuable that resource was, but it seriously contributed to me keeping my cool and sanity during the most difficult of times.  I hope I can provide the same support to other moms who are going through the same trials.

It was also very fitting that the ambassador family this year had so many similarities to my own.  Two proud parents of a 25 weeker went up on the stage and introduced us to their beautiful family.  They had a daughter about 2 years older than their son, so our kids are even similar ages.  Their son is over 2 years old now, and it actually brought tears to my eyes to see him up there being held by his daddy.  He was so happy and vibrant, he loved the applause from the crowd.  All I could see was Ryan standing up there some day looking out into this crowd of people showing nothing but love for him and all he has accomplished.  Having a full term AND a preemie baby, I know the pride a mother feels when your child accomplishes something big, and I know that with a preemie, you glow with pride every morning just knowing your baby has fought so hard and overcome so much just to wake up with you in the morning.  It truly is inspirational and it has made me a better person in so many ways.  I'm truly blessed to be Ryan's mommy.  And I owe so much of that to the March of Dimes. 

We hope to share Ryan's story with anyone who will listen and encourage them to support the March of Dimes as well, so that advancements in medicine can continue to progress and all babies born to soon can have an even better chance of fighting and leading a healthy life.  Whether you sign up to walk and raise awareness, or you choose to donate to help support this worthy cause, or even if you just send a few extra prayers Ryan's way as he continues to grow healthy and strong, we appreciate any and all of it more than you will ever know.

If you would like to walk with or donate to Team Ryan Aprea, there's a quick link on the left side of this blog that will take you to Ryan's March for Babies page.

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Saturday, February 23, 2013

One for the Baby Book

Dear Ryan,

As you surely know by know, we've been putting contact lenses in your eyes for around 2 months now.  So far, we have had to replace your lenses twice because they've popped out and become lost.  You've gotten very good at sticking your fingers in your eyes and dislodging them, much to our dismay.  The second replacement lens showed up in the mail this Thursday.  We were so excited to get your contacts back in because they really do seem to make a difference, especially with the shifty eye thing you do when you aren't wearing them.  So we put them in that night right before dinner.  We hooked up your feed, ate our dinners together, and then daddy went to check your lenses.  The right one, the one we had just received in the mail, was already gone!!  We were in disbelief.  It had only been an hour, and you hadn't even moved locations!

So, we went into contact search mode.  "Nobody move.  Stop where you are and look all around you.  Start with where he was sitting and move outward, it HAS to be somewhere!!"  We searched and searched.  We checked all the typical places, your chubby neck rolls, inside your shirt, the tops and bottoms of your eyelids, the bouncy seat you were sitting in, all the toys you played with, the carpet, we even changed your diaper and searched that in case it somehow fell in there.  It was nowhere to be found.  I actually started to think to myself that maybe it was a sign from God that these contacts are just too ridiculous and we shouldn't be using them.  I prayed and basically said, "If you want us to find it, then please show us where it is.  If not, then this is the last time we'll replace it.  I can take a hint."

After about an hour of searching, it was bedtime for both kids.  I took Dani for a bath and story time, and Dave took you for your bath.  Every night before she goes to sleep, Dani says her prayers and she usually includes you in there.  Tonight I asked if she could pray for your eyes and ask God to help us find your contact, so she said, "Dear God, please help fix Ry Ry's eyes and help him find the lost ton-tat."  I kissed her goodnight and came out of her room to find your daddy doing a happy dance.  "Guess what??  I FOUND IT!!  It was stuck to his BUTT CHEEK!"  God has a pretty good sense of humor.

The next morning, I was playing with you on the mat and I got ready to change your diaper, and I remembered that I should tell Dani that her prayers were answered!  So I told her, "Guess what, Dani!  Your prayers really helped.  God showed us Ryan's contact, and guess where it was!  It was stuck to his chubby little bottom!"  She started laughing so hard.  Then, being the good little helper she is, she ran in to grab me one of your cloth diapers from your room.  When she came out she said:

Dani:  Was the ton-tact in this diaper?
Me: No, not that one. :)
Dani:  Was it in that one?  (Pointing to the diaper I was taking off of him)
Me: No, not this one.  It was in a blue one that's in the laundry basket now.
Dani:  Oh.  Is that ton-tact in it?
Me: No, we washed it and put it back in his eyes.
Dani:  (laughing)  God found it on his bottom?  That's the funniest thing I NEVER heard!!
(I do not know where she picks these things up!! LOL)

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Monday, February 18, 2013

Finally, a fun post!

If you're my Facebook friend, then you already know that Ryan came home from CHOC yesterday. :)  Hooray!!  We've got a new plan for his meds and as you can see from the picture he's feeling good and happy to be home.  It was well worth the few days there to have him looking and feeling this good.  He's still throwing up occasionally, so we may need to continue tweaking the reflux meds and formula, but other than that he looks and sounds great.

Last night, sort of at the spur of the moment, we decided to let him try sleeping in his nursery for the first time ever.  Up until now, since he's been home from the NICU he's been sleeping in a pack 'n' play right by the side of my bed.  This was a pretty difficult decision for me to make because, well, it's just kind of a big deal and it means he's growing up.  We had to rig his crib a little so that he will be able to sleep at an incline, but as you can see from the photo, he loved it.  We did his regular bedtime routine, and he fell right to sleep sucking on his favorite binky and clutching his little lovey.  I have to give credit to Dave for the awesome handywork on the pajamas.  Before he was home from the NICU, we had stocked up on various sizes of play and sleepwear, not realizing that he would have a G-tube.  So when I opened the box of 12 month stuff, the only pajamas he had were zippers, which wouldn't work.  So Dave used the snap pliers we have for Spray Pal and rigged these zipper PJs with snaps so that Ryan's tubes can still come out. Super dad!

Last but not least, a funny Dani story that relates to Ryan.  Yesterday, I needed to run to Target. Dave was home with Ryan, who was sleeping away in his swing, so we planned on him just watching both kids so I could run in and out.  When Dani saw me getting ready to leave, she asked, as she so often does, "Mommy, where you going?"  and I replied, as I so often do, "Oh, I'm just going somewhere really boring." trying to persuade her that she really doesn't want to go.  But she said:

Dani: I want to go bowling with you!
Me: Oh, I'm not going BOWLING. I'm going somewhere BORING.  It won't be any fun.  Are you sure you want to go?
Dani: Yes, I'm sure.
Me: Ok, then, but it's going to be boring!

We get in the car, and she says:

Dani: Are we going to boring now?
Me: Yup, are you excited?
Dani: Yup.  Should we bring Ryan?
Me: Well, no, we can't because he's getting his feed and sleeping right now.
Dani: Oh, but he always has to go with us.
Me:  What do you mean?
Dani:  You always take him to boring!

That's when I realized that whenever I'm taking him to his various appointments or what have you, and she asks me where I'm going and if she can come, I always respond with, "You don't want to come with us, it's really boring." LOL

So we head to Target together (the picture below was her leaving to come along, all excited about her "boring" adventure).  We arrive, we shop, we get back in the car.  Then driving home, she says:

Dani: Are we going to boring now?
Me: Haha, Dani, that WAS boring!  We're all finished now and we get to go home!
Dani: (in the 2 year old tantrum voice) THAT WAS NOT BORING!!

I was both tickled and flattered that she thinks so highly of shopping at Target with me. :)

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Sunday, February 17, 2013

CHOC Stay #5 Day 2 (and day 3)

Ryan is still doing great.  They weaned his flow down on the high flow nasal cannula last night and again today.  They also started his feeds back up last night, and he's tolerating them fine.  I was actually sort of hoping he would have one of his morning coughing spells today so that the nurse could see it and explain it to the doctors, but he only coughed a little bit and I didn't grab my phone in time to video tape it.  I suppose it's a good thing he's not coughing as much, but then I wonder if it's because it's reflux related and he is coughing less because he didn't get as much formula yesterday.  Or is he coughing less because he's on the tail end of whatever cold he has, and it was actually the coughing that was causing him to throw up more rather than actual reflux?  He didn't actually throw up at all yesterday, so who knows.  Dr. Ho from GI came by today and talked to me on Dave's phone since I was home with Dani but of course had lots of questions.  I explained the coughing, and he does think that in the mornings he's waking up congested and the coughing is gagging him and causing him to throw up.  He is having us switch our schedule around a little bit so that he gets his breathing treatments (which help clear the gunk in his lungs and often cause him to cough that up) before we start his first morning feed.  But I also told him that there are times when he will just randomly throw up.  Like I will be sitting with him upright laying in his boppy to change his diaper, and he will open his mouth and I will see the formula come up and pool in the back of his throat.  He will either swallow it back down or start sputtering and spitting it out if it gets to be too much.  He said is definitely reflux related, so we are increasing his meds a bit.  They needed to be adjusted because he's been gaining weight since we first started them, so hopefully that will help. 

Dr. Nickerson from pulmonary also came by and looked at another chest x-ray.  There is still a little bit of haziness in his right lung, but there are areas that look better than yesterday.  He mentioned a possible discharge of early this week, but we are still hoping and praying he'll be able to come home tomorrow.  It seems like the nurses and other doctors are ok with that as long as he can wean down off the high flow nasal cannula, which he's really close to doing.  Pulmonary is always ultra conservative, but if he's back on the regular cannula, then we can handle things at home.

***At this point, I called Dave to see if they had weaned his oxygen any further, then I got sidetracked and fell asleep.***

So, here we are on Sunday morning.  Sorry for not updating last night!  I just talked to Dave, and Ryan is back on the regular cannula at .5 liters and satting great!!  Dr. Ho from GI came by again this morning because Ryan had another morning coughing episode with throwing up.  I'm glad they were able to see it happen, and they all seem to agree that it's just morning congestion from sleeping that he's having trouble clearing out, and the throwing up is from gagging on whatever's in there.  So, we are going to stick with the plan he set yesterday and see if it helps.  He said from his end, he's fine with discharging today, so we just have to get the rounding doctors and pulmonology to sign off on that.

Thank you for the love and prayers.  It almost seems silly that we needed to be admitted for this, but it was reassuring to have all his specialists see him over the course of 48 hours rather than just the snapshot of what is going on at home when I bring him in for an appointment.  I also think the high flow nasal cannula helped give his lungs a much needed break from working so hard, which made it easier for him to recover from whatever respiratory thing was going on.  So, fingers crossed that we can bring him home today and keep him going on this road to recovery!

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Friday, February 15, 2013

Blessings in Disguise

Let me just start by saying that when I left my house with Ryan at 7:30am this morning heading for our regularly scheduled feeding therapy appointment at CHOC Rehab, I never would've imagined that I'd be sitting here in the CVICU typing an update on my little guy while watching him sleep in a hospital gown with wires stuck all over him.  I think the massive headache I feel trying to push it's way into my brain is partly from trying to process the "what the heck happened" compounded by the fact that I didn't get to finish my dang coffee this morning!  But now that I have a minute to sit down and rehash this (on my laptop, no less...HUGE THANKS to my mom for watching Dani longer than expected and then dropping off my necessities and a few extra comforts from home here at CHOC after she dropped her off at preschool), I'll try to detail what exactly happened this week that led to today, and why this hospital stay is actually a big blessing in disguise.

So a week or so ago, we were putting Ryan to bed and we put his pulse ox monitor on as we always do.  His sats are usually 99/100, but that night they were hanging out in the mid-low 90s.  He wasn't really acting sick other than that, so we turned his oxygen up from .5L to .75L and he started satting higher and slept fine.  The next few days were pretty normal, but he started to show more signs of reflux.  He would cough in the morning when he woke up, and sometimes it would make him gag and he would throw up formula.  It wasn't completely out of the norm for him, but it was slowly getting more frequent.  So I called GI twice this past week to ask about it.  The first time they said to increase his prevacid from 3.0ml to 3.5ml once a day.  So we did.  The next time I called was because I vented him after a feed and a small amount of grainy red stuff that looked like maroon sand came out of his stomach.  They said it was probably blood, it could be from anything, give an extra dose of prevacid that night and bring him in if it happens again.  We did the double dose and the blood never showed up again, so we left it at that.  That was on Tuesday or maybe Wednesday, I can't remember.  Then Thursday morning we had physical therapy and feeding therapy.  I explained the issues that Ryan has been having the the PT and she had him start wearing this support vest called TheraTogs.  He seems to like it, and her hope was that it would kind of pull his organs in his core together and give them some support to work more easily and relieve some pressure build up.  He wore it yesterday whenever he wasn't getting a feed or sleeping, and I brought him to his feeding therapy session in it this morning because his PT was going to stop by and see how it was working out.  I was actually amazed with it because even though he was coughing like he normally does in the morning, he wasn't throwing anything up!  So I get to feeding therapy all excited that he's not throwing up, and I take him out of his car seat and put him in his feeding seat, and he just starts coughing up a storm.  He was turning red and coughing/gagging like he was trying to clear his throat but couldn't bring the gunk up.  I finally held him upright and pounded his back a bit to help him clear it, and then when he settled I put him into the feeding seat and he promptly fell fast asleep.  He was wiped out, and there was no way he was going to eat any squash that morning.  So I was talking to the therapist about what's normal for him and she said, "Does he always sound this bad?"  which is when I realized, geez, he really does sound bad.  I think when you are taking care of a chronically sick kid, sick becomes normal.  You focus on the sats and the monitors and forget that he's not actually supposed to sound like that.  That's when I decided I should probably get him seen right away. 

So, I did what any other crazy mom does and I walked myself and Ryan over the pulmonary clinic to see the pulmonologist.  I mean, we were right there, right?  We got really lucky because Dr. Y was working the clinic today and she knows Ryan from the NICU, so we were able to get in right away.  She got all caught up on his latest hospital visits from the RSV on, and then she asked about his behavior over the last week, etc.  His sats were not great, he was hanging out in the low 90s on the .75L, so they put him on 1L and she gave him an extra nebulizer treatment.  She said she was concerned because his lungs did sound crackly to her, and she didn't know if it was a virus or if he aspirated some formula during one of his reflux/throwing up episodes or if his lungs are just weaker from the RSV he had.  She was also concerned because she knew that his latest echo at the cardiologist showed that the pulmonary hypertension was back and "moderate".  So then she asked, "How do you feel about admitting him?"  Uhhhh, how do you feel about a root canal?  KJSHGKSJD:FJLHSLDJKFHLSKFJDHSKL.

Normally, if I didn't think he really needed it, you all know me and you know I would fight like heck to make sure we weren't admitted for no reason.  But, once I let the words sink in, I realized it actually made sense.  He's obviously not doing great this week since he's on higher oxygen and his sats aren't as high as usual.  He's coughing more, even if it is only in the mornings, and he's throwing up more.  Since we don't have Dr. House and his team conferencing in a room with a white board trying to figure everything out, getting admitted really is the next best thing.  We need all the specialist to have access to him in one place so they can get this sorted out and he can feel better.  So, I didn't put up a fight.  I asked a lot of questions about what it would entail and how long we would be in, etc. and hopefully it won't be long.  Of course she couldn't give me a definite answer, but she said she'd want everyone to check him out and tweak any meds that they think need tweaking, and then we'd need to see some improvement.  The reason she thinks this is the best option is because it's not something acute that she can just treat and follow up in a few days or weeks, this is a chronic problem with his lungs and heart that is slowly getting worse.  They don't know exactly what will help, so they need to monitor him until he gets better so we don't just keep trying things that don't work and extend his discomfort.  Totally makes sense.

So, here's the blessing in disguise part.  First of all, the prayers you guys are sending are definitely working.  I've been praying so hard for just answers, and we've already got some!  Once we got checked in to the CVICU (Cardiovascular Intensive Care Unit), I talked to a very knowledgeable NP who got his whole history.  I also explained how we aren't sure what's causing this, whether it's a respiratory thing or a GI/reflux issue, etc.  She was on it.  She ordered a chest x-ray, EKG, echo, and then when I also mentioned that we REALLY wanted to see the neurosurgeon because he's out of network for us if we go to his office, but he's in network if we are inpatient and he sees us at CHOC, she also ordered a head ultrasound and said she would have him paged, too!  I felt like things were really happening for a reason, and this will all be worth it.

Time for the GOOD NEWS!!!  First, and this is all going to be out of order, but bear with me.  The tech who did the echo remembered Ryan, so he was willing to talk to me about what he saw, which always makes me happy. :)  He was the bearer of good news when he said he didn't see the pulmonary hypertension.  Like at all.  So, that makes Dr. Jen (disclaimer: I am not actually a real doctor) think that Ryan probably did/does have a virus, which probably started when we first had to turn up his oxygen about a week ago, and was peaking when he had the echo on Monday that showed the pulmonary hypertension, and now that his cough is getting worse, he's probably at the tail end of it.  The chest x-ray does show that his right lung is more gunky than usual, so that also points to virus, and he doesn't have a fever or anything else, so it's probably not anything bacterial.  They drew blood to do a panel to check for viruses and we should get that back tonight.  More good news, we got to see the neurosurgeon!!  Dr. Muhonnen, who works in Dr. Louden's office where we were referred, already stopped by and went over Ryan's head ulstrasounds with me. 

**A little back story on this, skip if you're tired of reading.  We were worried in December/January because Ryan's fontanelle seemed to bulge a bit and we knew that his last head ultrasound showed mild hydrocephalus.  So we got the head ulstrasound in January that showed it again, and we got referred to Dr. Louden.  We made an appointment but had to cancel when we found out he was out of our insurance network.  The receptionist was really nice and even said if we couldn't find anyone else to see him, we could come in and pay a discounted cash rate for the visit.  So, we looked into a few other places, and it turned out the nearest pediatric neurosurgeon that was in our network was in LA.  So we decided we would just do the cash visit with Dr. Louden.  But then, Dave took Ryan to the ENT and they ordered an MRI and CT scan on his temporal lobe which would require sedation.  I figured that the neurosurgeon might also want and MRI and CT scan of his brain, so I called their office to see if they could add that to the order so we could get it all done at once and not have to sedate him twice.  They agreed it would be good to have those images done first, but they couldn't put the order in without seeing him in the office first.  So I called our pediatrician to see if she could put the order in, and the nurse there just called me back yesterday still working on that.  It was another one of those things like the ABR hearing test during the Mic-key button procedure that makes total sense to do together so you don't have to sedate a fragile baby twice, but just isn't easy to get accomplished because of all the medical red tape craziness. turns out it doesn't matter because....

Dr. M showed me the head ultrasound and said that he didn't even need an MRI or CT scan because he was very comfortable looking at those images and telling me that he didn't feel like his hydrocephalus was of any concern, and he doesn't even think he needs to be followed in the office!  He explained everything to me, answered my questions, and put my mind at ease.  Turns out, Ryan just has a big head like his sister and his daddy.  There are some pockets of fluid in there that are borderline hydro, but he's not concerned at all.  He said he was willing to bet if we had done an ultrasound of Dani at the same age, they'd probably have similar ventricles.  He also showed me some white spots in his brain that might have been tiny brain bleeds that were too small to pick up in the NICU when he was little.  It's so rare for a micropreemie to not have a brain bleed at all, but we are very lucky that his were so small they weren't even detected (if that's what that was).  He said that sometimes if there is blood mixed in with the cerebral fluid it can make it more thick and viscous, which can cause a widening of the ventricles.  The bottom line is, we're really lucky that his brain seems to be doing as well as it can be for everything he has going on!  Oh, and the icing on the cake, as he was leaving, the ultrasound tech walked in and was ready to do a head ultrasound, so Dr. M said we might as well take another free look at his brain, so I got to see an expert explanation of everything I was seeing on the screen, which was so relieving.  This moment alone made this whole hospital stay worth it!

Ryan is resting comfortably now, he's on high flow nasal cannula, but he's satting great and they're already slowly weaning him down.  They gave him a dose of lasix to try to clear out some of that fluid they see in the right lung.  We'll meet with GI tomorrow to figure out the reflux issues, and hopefully we won't have to stay much longer than that.  Thank you for continuing to pray for Ryan.  I was having such a rough time with everything this morning because it all came as such a shock that we were even getting admitted, but thank God we did because it all really was a blessing in disguise.

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Monday, February 11, 2013

Bumps in the Road.

Today has just been one of those days.  I know we are going to have them, and I know I just need to stay focused and remember how blessed we are just to have our little family of four all together and HOME, but man, the stress just takes a toll sometimes.  Thank goodness I have my little online support groups to vent, cry, share, and just release all the negativity.  There are constant reminders of how lucky we are to have Ryan here with us, and I try not to take them for granted.  So I will try to keep this update positive and upbeat, because the bottom line is, we are truly blessed.
So, all that said, today we had a follow up visit with the cardiologist.  Dr. Doshi wanted to see him a couple weeks after his little overnight stay in the CVICU to get another EKG and make sure that abnormality had worked itself out.  Well, the appointment starts out with them getting all his stats and vitals.  Let's start with the good news.  Ryan weighed in at 17 pounds!!  So proud of him for all that weight gain!  After we weighed and measured him, she hooked him up to a pulse ox to see his sats.  And they were 85.  On 1 liter of flow.  This is not good.  She asked me if that was normal for him, and I said no.  Of course, right before she hooked him up, he had a coughing fit which caused him to reflux, which caused him to cough more, and just rightfully pissed him off.  So it could've been that.  She waited a little while for him to regain his composure, and when he did, he was still satting 90.  I think she could tell I was determined to make it go higher before I would let her write down such a low number, so she said she would just leave the pulse ox on him when we went into our room.  As soon as we sat down, he fell asleep in my lap and his sats when up to around 96, which still isn't great for him, especially considering he's on 1 liter, but they were ok with it.  I'm going to include the picture Dave took, only because I think it's cute that Ryan promptly passed out on me as soon as we sat down, but you have to promise to ignore the bags under my eyes, ok?  I know, now that I mentioned it, that's all you'll look at.  But just look at Ryan!! Isn't he adorable?!

Anyways, the EKG results were not as great as we had hoped.  The abnormality was improved, but it was still slightly there.  She showed me the read out, and the heart rhythms are printed on paper covered with square grids.  She explained that one of the dips in the heart rate line was significantly depressed when we got admitted (the line dipped down 4 or 5 squares on the grid), and today it was only slightly depressed (dropping just one square on the grid).  So, based on that, she ordered an echo to see if they would find extra pressure pushing into the right side of the heart.  When his lungs are working harder, some of that air pressure from the lungs can push back into the right side of the heart through the valve that connects the two organs, and this is called pulmonary hypertension (PPHN).  If you've been keeping track, Ryan had PPHN throughout his 7 months in the NICU, but was finally cleared of it in November.  Unfortunately, the echo confirmed that the PPHN has returned.  The last 4 or 5 echoes he's had showed either no pressure or pressures that were so slight, they were unreadable.  Today they could read the pressures at 40 or 50.  I don't even know what unit it's measured with, I just know she said 40 or 50.  So, he's going back on the medicine (sildenafil) that he was on before to treat this.  We aren't sure what caused it to come back.  It could be that his right heart is just sensitive to sedation, it could be that he's fighting this cold and his lungs are working harder which is making his heart work harder, or it could just be a mystery.  Either way we are praying that both his lungs and heart will continue to heal and grow and become healthy and strong.

In other news (I wish it was good news), we lost another contact lens again tonight.  I cannot even tell you how frustrating it is.  We just bought a new one to replace the left lens that we lost, and then the right one goes missing.  We are starting to think that it might not be worth it to replace it.  We really don't notice a huge difference in his vision between when he's wearing them versus not wearing them, and to be honest, the amount of time and energy we spend searching every nook and cranny in every possible place when they fall out just isn't worth it.  It's so hard to know what's best for him.  We don't want him to miss out on developmental things if he can't see, especially since we know he can't hear, but honestly he plays with his toys and appears to look at things even when he doesn't have the contacts in.  I just don't know.  Maybe God will let me know what's best by either letting the contact turn up so we can keep using it, or by keeping it missing to signify that we are better off without it.  We shall see. 

So, lots of prayers for our Ry-guy tonight.  I just can't wait until he feels better and "normal" again.

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Saturday, February 9, 2013


I saw this article on a preemie resource page on Facebook this morning, and I felt it was definitely worth sharing.

I know I, like so many others, had never heard of RSV until Ryan was getting closer to discharge from the NICU and everyone was buzzing about how careful we would need to be, especially during flu season.  With Dave and I being teachers, and a two year old big sister in preschool and other classes where she is constantly exposed to other kids, I feel like my anxiety over him getting sick is really peaking these days.  My students have already become used to me being the crazy teacher who uses hand sanitizer 435986938567 times a day.  I even wore a mask while teaching one day during a week when it seemed like there were more and more kids going home sick.  Whenever we come home, we "scrub in" and change our clothes before we go near Ryan.  Even with all that, he still got RSV in December. 

His poor lungs just aren't ready to handle this virus.  If Dani gets it (which we think she did in November), she's down for the count for about a week, but she'll recover.  Ryan needs hospitalization to get through it if it gets really bad.  Hence the anxiety.  Right now he's waking up congested in the mornings.  He doesn't have the strength to cough up whatever he brings up out of his lungs, so he gags on it.  Right now, we are maintaining things by keeping his oxygen turned up a little, sleeping with a humidifier, giving him extra nebulizers, and lots of saline with a little bit of suctioning to help him clear it out.  We are also so blessed that he's been able to get the synagis shot this year.  This is not a fun shot for the babies, it's thick and painful going in, but it's necessary.  The serum is full of the antibodies that fight off RSV.  As the article mentions, babies born too early don't get the full benefit of all the antibodies that are normally transferred from mother to baby.  This shot helps compensate for that and specifically targets the RSV.

When he was hospitalized for RSV, they told me that the worst usually comes 3-5 days after the first signs of symptoms.  So, if this it is RSV that he's dealing with right now, we should be getting past the worst of it today or tomorrow.  In which case, he's handling it like a champ.  He's up to 1 liter of oxygen, and I probably could've weaned it down a little yesterday, but I figured it wouldn't hurt to give him a little more time to rest and recover and help him through this.

Thank you for continuing to pray for our little guy.  He's such a trooper, you'd hardly even notice he was sick other than the random coughing fits and the nasal-y/congested sounding breathing that probably only Dave and I notice.  And please, take precautions this flu season.  It's been a rough year for these viruses, and the season isn't over yet.

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Thursday, February 7, 2013

This week's update.

It's Thursday again, finally getting some time to update the week!  First of all, some HUGE news.  Ryan rolled over from his tummy to his back for the first time last Friday!  He did it 3 times in a row, and I was able to get the phone out in time to video the last one. :)  We were all so excited!  He hasn't done it since then, but hey, it was great progress and he is definitely getting stronger each day.  Today we had PT and FT at CHOC, and he did great.  Well actually, he slept through the PT again, but he did great with feeding therapy!  I brought some of the squash and his bottle, and he definitely liked eating off the spoon better than trying the bottle.  And by "eating" off the spoon, I mean that she would dab some squash on his hand and then his cheek to get him used to it, then use the back of the spoon to wipe a little bit on his bottom lip, and he would lick it off.  I think he really likes it!  We're going to increase the amounts of times we try giving him tastes of food throughout the day so he can get more used to that new sensory input.  Throughout this week he's been trying out the squash and bananas, and he seems to be getting used to both.  He definitely relies on his "binky" to calm him down if it all becomes too overwhelming for him, but we're lucky he has this method of soothing himself. 

This week we're having another little brush with this nasty flu season.  We're not exactly sure what's going on, and it's definitely not severe enough to warrant bringing him in, but he's just ever so slightly under the weather.  We have his oxygen turned up just to 3/4 liters as he works through this because he sats were hanging out around 94-96 a couple nights ago on 1/2 a liter.  We've got teams of people sending him warm thoughts and lots of prayers, and I definitely think they are working.  Right now as I type he's sleeping comfortably, but the mornings are rough for him.  He wakes up congested, which leads to coughing, which leads to him gagging and throwing up because he hasn't quite figured out how to clear his throat yet.  Yesterday it was so bad right before we were leaving for work, Dave ended up having to take the day off.  We've been giving him extra nebulizer treatments and last night we added the humidifier back into our room, and it seems to have helped loosen him up a bit.  He still managed to throw up 3 times this morning, so I called GI to see if it might be related to his formula.  The nurse I spoke to said she had a feeling he might have a little virus and the coughing is triggering the vomiting, so we are just going to watch him and keep a close eye on things and the GI doctor is going to call me to follow up when he comes in on Monday.  Any healthy thoughts and prayers you can send his way during this time (and the rest of this nasty flu season) are greatly appreciated! 

Since Dave was home with him yesterday, he ended up taking him to his ENT appointment yesterday afternoon.  So, I'll relay the information he told me, but just realize this is all secondhand for me.  The ENT doctor reviewed the ABR (hearing test) Ryan had that confirmed bilateral profound hearing loss.  He asked Dave a lot of questions about his medical history, prior surgeries requiring anesthesia, and all the medicines he's been on, especially antibiotics.  There was a lot of discussion (this part isn't secondhand actually since Dave called me and put me on speaker to answer a lot of these questions) about the eye surgery he had at CHLA in August that resulted in a trach infection (steno) and required major antibiotics.  I have a very strong feeling that his hearing loss may have occurred around that time.  I'm not sure if I've mentioned this here before, so I apologize for repeating myself if I have, but I distinctly remember a physical therapist coming to see Ryan at CHLA a few days before his surgery and giving him a basic assessment.  He clearly responded to the toys she had that made sounds.  And recently, as if that wasn't enough evidence he could hear at one point, I had the recollection of all the times at CHOC that they would test the fire alarms, and he would FREAK.  It's true that the strobe lights go off, too, but he would always be covered up with a thick blanket in his isolette, and he would still react as if the sound was bothering him.  And all of these that I remember took place BEFORE the surgery at CHLA, including one time where they were testing all their systems in preparation of the new tower opening, and they ran the fire alarm for an hour straight.  He definitely heard it, I have no question in my mind.  Anyways, back to the appointment.  Dave was really hopeful and optimistic based on what this doctor had to say, so I'm praying that rubs off on me some.  He said that the doctor explained that there are a lot of factors that will tell us if hearing aids or the cochlear implant will help him hear.  They are going to do an MRI (which means he needs to be sedated again) to get some images of the anatomy of his ear.  The best case scenario is that the only damage is to the hairs on the nerve of the ear.  This is typically what happens when ototoxic drugs affect the hearing.  They can damage thousands of those little hairs and cause hearing loss.  If this is the case, then there is a good chance he'll be able to hear with hearing aids or implants.  The second option is that there is actual nerve damage.  Then the third option is that the cochlear bone is missing or not developed.  Based on my feelings that he *could* hear at one point, I'm thinking it won't be option C.  But we'll have to wait and see.  Once he gets that MRI, they'll know a little bit more about what options he has for hearing aids.  Thankfully, since the ENT is a medical doctor, all of this testing is covered by insurance.  We are still working with CCS to see if we can get some assistance for the hearing aids if they decide that they could work for him.  In the meantime, we've been working on learning a few signs each day.  After we teach them to ourselves, I teach them to Dani.  She remembered a few we used with her when she was a baby, like milk, please, more, all done, and now she's learned a few more including a few animals we've been reading about in one of her books.  We are really praying that he'll be able to have some sort of hearing, but we are also completely prepared for any scenario. 

Ryan's missing left contact was never found, so we ordered him a replacement and it arrived yesterday.  So he's back to seeing out of both eyes :)  So far it doesn't seem like it's making a huge difference.  I think the biggest improvement comes with the right contact, but I'm sure the left contact can't hurt.  Hopefully as he adjusts and gets used to having it in again, he will start focusing on even more.  He is definitely seeing things even without the left contact.  Yesterday Dave held a toy ball in front of him, and he said he locked his eyes right on it right away and reached out to grab it.  We are so encouraged by everything he's going each and every day!

I think that's it for now.  I'll try to upload some more pictures off my phone to post here.  Thank you for all of the constant love and prayers for our little guy.  He's definitely growing stronger and healthier every day, thanks in large part to all of you who are supporting us through this and praying for his healing.  We truly appreciate it.

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