Thursday, January 31, 2013

PT, FT, and Eye Doctor.

This morning began our new routine of two back to back therapy sessions for Ryan on Thursday mornings.  We've been doing Physical Therapy (PT) for a few weeks now, but today we finally got to start the Thursday Feeding Therapy (FT) appointment that we were supposed to begin last Thursday when we were hanging out in the CVICU.  Here's the update:

PT - The physical therapist we see was at a conference last week and was sick the week before (so we had a sub), so today was the first time she's seen Ryan in 3 weeks.  She was impressed with how much he has changed in that time.  At our last visit, he was just getting over the RSV, so he was still a bit groggy/lethargic, but today he was so excited to be there!  She asked me to catch her up on where he is and what our concerns our.  I told her that he really seems to be getting stronger, he's getting so close to sitting up on his own without support.  Of course, he can't get himself there on his own, but if we sit him up or pull him up by his arms to the sitting position, he'll sort of balance himself there without much support for a few second.  I told her that my biggest concerns are his delay in holding his head up and the way he flails/locks his arms out when I'm holding him.  She did a few exercise with him and watched his arms and said that she was actually really impressed with his range of motion in his arms.  He brings them to his mouth and reaches out to grab and feel my hand, even if she's holding his legs in a certain position.  Apparently, it's important that he can move his upper limbs independently from his lower limbs, and he does. :)  She thinks that the locking of the arms is more of a stability issue.  He's still trying to figure out how to keep himself balanced, and his natural habit (which we are working hard to break) is to arch his back.  When I hold him, I prevent him from arching, so he's basically using his arms as a stability measure since I won't let him use his back.  She said, "He's a smart boy, your son.  If he can't do something the way he wants, he finds another way to get the job done."  I admit, it was a proud mommy moment for me!  He had so much fun exercising, he actually passed out in the therapist's arms about half way through the session.  It was too cute not to take a picture.

FT - Our usual feeding therapist was out sick today, so we had a nice surprise because we got to see Jen who was Ryan's therapist when he was in the NICU!  It's so nice to have him seen by someone who knows him and knows his history.  She was able to get him going with some rice cereal right away, and he did great!  He still isn't having anything to do with the bottle.  It's so funny, he'll suck on his paci all day long, but if you try to put a bottle nipple in his mouth he acts like you're trying to poison him.  When he refused the bottle, she tried putting some of the formula on his pacifier to allow him to practice tasting and swallowing it, and he did fine with that.  She also gave me some tips on how to use pressure on his cheeks and lips with various textures to get him desensitized to feeding and reduce his gagging.  His gagging has actually improved A TON since he was first evaluated in November, but he definitely responded well to the sensory input on his cheeks/mouth before she started the feed, so we'll continue with that at home.  I also roasted up some squash and yams today and blended it into a really thin puree so he can try some new flavors.  So far he's only had rice cereal and apples, so hopefully he'll like this new stuff when we try him with it tomorrow!

Eye Doctor:  After school, Dave took Ryan to see Dr. Sami because he will be the doctor who will regularly follow Ryan, and Dr. Rieser told us that our next follow up should be with him.  So, just as Julie from the Braille Institute had predicted yesterday, Ryan didn't quite demonstrate all of his visual capabilities.  Dr. Sami does want us to go ahead and order another set of contacts to replace the one that's lost, and he doesn't want to patch the eye as we had been told he might.  He said we might reassess later down the road and do it then, but for now he doesn't need it.  He didn't feel like he was tracking very much, but he did see light.  We think he is tracking pretty well, and he's starting to look at and focus on our faces if we get up close to his face.  So, we'll go back in 3 months and this time we'll dilate his eyes for a real exam, and hopefully by then he'll continue to improve by leaps and bounds!

Thank you for all the love and prayers!

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Wednesday, January 30, 2013

Wednesday Update.

Updating mid-week because I have a second.  I worked Monday and Tuesday, and typically we don't do appointments for Ryan on those days, but he needed to get his 4th synagis shot within the 28-30 day window, so I rushed home after work on Tuesday to pick him up and drive him to the clinic in Newport Beach.  It was strange and unnerving to see news vans there due to yet another senseless shooting in the HOAG hospital complex.  When I checked in, they told me they were running 45 minutes to an hour behind, and I think the look on my face when she said that got enough of a reaction that I didn't even need to say anything.  The nurse behind her said she would check and see if the doctor could just pop into our room before giving the shot since it was just a shot visit, and I said that would be great.  So we did our weight check (he's over 16 pounds now!!) and sats check and we waited in the room for the shot.  Except it's not just "the shot" anymore, it's "the shotS"!!  As important as this shot is for him to get those antibodies to fight off RSV, it's SO hard to watch because it's notoriously painful.  And now that he's heavier than 7kg, he has to get a larger dose in 2 shots!  So I had to hold his arms down while another nurse held his legs down and then a third nurse jabbed him with the shots, one in each leg.  My poor, poor boy. :(

Today was nice because I got to get out of the house with Dani for a nice little roller skating outing with our friend Laurie and her boys.  Ryan was a good boy for the home nurse, and when Dani and I got back it was time for the Braille Institute lady (I'm sure there's a better name for her: teacher? worker? Julie?  Julie works...) to work with Ryan.  She brought her big basket of visually stimulating toys, which Dani promptly took out and laid on the floor one by one while Julie and I played with Ryan and tried to get him to look at and grab for objects.  She also showed me some apps she had on her iPad which are great for visual activities, and one of them had a fun little monster that Dani absolutely adored, so before her nap I trained her how to say, "Daddy, will you buy me an iPad?"  I'll keep you updated on that one. ;)

Tomorrow we have physical therapy and feeding therapy back to back in the morning.  Hopefully he doesn't wear himself out in the first appointment before he can get to the eating!  Then he has an eye doctor appointment where we should find out if they are going to have us patch his left eye for a few hours each day to help strengthen his right eye.  Busy day tomorrow!

Other than all that, Ryan's been doing really well.  He's still on the oxygen, but sounds so much clearer and less gunky/wheezy than before when he had RSV.  He's still working on strengthening his muscles so he can roll over and sit up on his own, and he's getting so close!  We used up the last bag of frozen breastmilk today, so tomorrow he will start on straight formula.  He's been throwing up a bit more than usual over the past week or so, but the pediatrician said to give the formula at least 2 weeks before switching to see if his body adjusts.  So we're praying that his tummy will tolerate this formula and start growing out of the reflux.  It's so hard to watch him throw up every day.

Tonight I'm also asking for some prayers for two twin micropreemie miracles who were born yesterday morning and are fighting for their lives in the NICU right now.  Please keep William and Daniel and their mommy and daddy in your thoughts and prayers.

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Saturday, January 26, 2013

Something I learned about procedures.

In addition to this being a place for me to update family and friends about Ryan's progress, I'm also hoping it will be a resource to other parents going through the preemie (ex-preemie) journey.

*Side note* Some of my friends in a preemie support group I'm in mentioned how odd it is that the doctors always refer to our kids as ex- or former preemies.  Like when they rounded on him this week in the CVICU, they said, "This is Ryan Aprea, ex-25 weeker..." when they were giving his report.  Which I guess makes sense because he's not 25 weeks old anymore, but it does sound odd. 

*Side note #2* As I'm typing this, both kids are sleeping.  Dave goes in to check on Ryan who is sleeping soundly, and comes back and says, "I'm going to test his hearing while he's so sound asleep."  So he grabs Sophie the glorified chew toy and walks back there.  Then I hear "SQUEAK SQUEAK!!!" followed by silence, then the sound of DANI waking up in the other room, followed by Dave walking back out saying, "Yup, he's deaf."  Just a typical morning in the Aprea house!

Back to my original purpose in writing this, I learned something pretty important after our stay in the CVICU this week, and I think it's important to share.  You know how before a procedure, the nurse will call you with your pre-op instructions.  They give you all the directions for when to stop eating, stop drinking clear liquids, etc.  For babies, they try to do the operations as close to the beginning of the day as possible so they don't have to go as long without their food since they can't really understand why they are fasting.  Well, Ryan had to do his procedure a little later in the day since it was a reschedule and we already had our EDAC evaluation in the morning.  Plus they wanted him to be the last one scheduled (he was supposed to go in at noon) so that they could have the room a little longer to get the ABR done. 

Well, each time we were called with pre-op instructions, it seemed that the information was always slightly different.  First we were told no milk after midnight.  Then it was plain breastmilk was fine up until 8:30am.  The last nurse who called the day before said no breastmilk after 5:30am because they changed our procedure time to 11:30am and he shouldn't eat past 6 hours prior.  So I went with that one, since I questioned it and she went and checked with some other nurses while I was on hold.  She also told me that I could give clear liquids like water, pedialyte, or juice up to 3 hours prior.  I told her he's never had juice or pediatlyte, but I could do water, and she went to check for me again to see what would be best.  We decided that since he wasn't used to large amounts of water, we would just wait and see if he got fussy/hungry, and then I could do a few ounces of water, otherwise, he would probably be fine.  So, that's what I did, and he never got fussy, so he had his plain breastmilk at 5:30am and that was it.

After the abnormal EKG and spending the night in the CVICU for monitoring, his cardiologist came to speak to me right before we went home.  I was asking her about the meds they used and what might have caused this to happen so I could be sure to ask them not to use these sedatives next time he has a procedure.  One of the things she mentioned that I found so interesting was that he might have been dehydrated which could've caused the pressures in his heart to drop and cause the abnormality on the EKG.  She asked how much he had been fed, and I told her I gave him his last feed of plain breastmilk at 5:30am and then he had nothing after that.  I had always been under the impression that the reason for withholding food and fluids before a procedure was so that they wouldn't throw up and aspirate while they were sedated.  She told me that the lack of fluids in his system could've been part of the problem.  That the fluids provide fuel for the heart to keep the pressures going.  I never ever would've thought of that.  So next time, we will definitely give water or pedialyte up until the last possible minute to help prevent this from happening again, and of course we'll make the anesthesiologist aware of the meds that were used this time so we can try to avoid them.  Just thought I would share that in case anyone else can avoid this happening by giving the extra fluids. 

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Thursday, January 24, 2013

Lots to Update.

Ryan is taking quite the tour of ICUs.  Last night we spent the night in the CVICU (Cardiovascular Intensive Care Unit), so now he's been in 3 different varieties.  Let's hope 3rd's the charm and we can stop right there!  I'm hoping we'll be discharged very soon, but while I wait, I'll try to update everything from the past 24 hours since I know I'll be busy once I get home. (OK, so right after I wrote that, the nurse came in and told me we were going home!)

EDAC Evaluation:  After an extended stay in the NICU, the hospital will schedule a follow up appointment called EDAC.  Don't ask me what it stands for, I have enough acronyms to remember so I haven't bothered to figure this one out.  I just know it's a follow-up where a nurse, dietitian, a few therapists, a doctor and a social worker come meet with us and see how things are going post-NICU.  Everyone was really nice and totally enamored with Ryan.  He was such a trooper through the whole thing considering he wasn't allowed to eat because of the Mic-key button procedure we were heading to next.  The physical therapist and speech therapist (yes, speech therapists meet with babies, too!) sat with him on a mat on the floor and brought out a bunch of toys for him to play with.  His motor skills have actually been improving a lot lately...he loves grabbing his toys and bringing them to his mouth or passing them back and forth between his hands.  So, for his physical abilities, he scored at the range of a 1 month and 20 day old baby.  He is just over 10 months (so 6.5 months adjusted), so that's a pretty significant delay, but we were expecting that.  It also helps him to receive more early intervention support services from the Regional Center.  The great news was his cognitive development.  I expected this area to be about as delayed as his physical development, especially considering that we don't know how much he can see, and we know he has hearing loss in both ears, but he scored at just above 4 months old!  That puts him only 2 months behind his adjusted age, which is amazing considering his handicaps.  I was so proud of our little smarty pants!  The doctor was very impressed by his chunky rolls and chubby cheeks.  Basically, we are doing everything we can for him right now, and they want us to continue with the feeding and physical therapies and come back for another evaluation in 6 more months to see how much he improves.  I feel like he hasn't really had a chance to really soar since we've been dealing with so many little "fires" since he's been discharged from the NICU, but hopefully things will settle down and we can focus our attention on his development.

Mic-key button procedure:  After the EDAC, I rushed Ryan in his stroller over to CHOC to check in and prep for his procedure.  They knew we had this appointment and would probably be late, but I don't think any of us realized it would make us a whole hour late.  But it all worked out fine.  The doctors and nurses went back and forth on where the procedure would actually be done since we were also having an audiologist come in and do the rest of the ABR hearing test while he was sedated.  It was all supposed to go down in the GI lab, but they ended up using a room in the SSU (Short Stay Unit) instead.  The GI portion of it really only took a few minutes.  They took out his old g-tube and put the mic-key button right in the same hole.  They used an endoscope to see where to place it in the stomach, so before they started I asked if he would check for Ryan's left contact lens while he was in there.  I'm not even joking.  That thing has been lost since this weekend and we cannot find it anywhere.  I literally thought late the night before that he might have swallowed it.  I told Dave, and he didn't think I was nuts, so I figured it couldn't hurt to ask!  It was the first time I'd seen this very serious GI doctor laugh.  He even came to me after and said, "I'm all done with my part.  Oh, and there was NO contact in there!" Hahaha.  But yeah, bummer.  Still don't know where that stupid thing is.

ABR Hearing Test:  This part of the day was a hard pill to swallow.  I think I took this news even harder than when they told me we were getting admitted for the night.  Basically, the director of audiology came to do Ryan's exam because when I was calling everyone on that wild goose chase to get them to do the ABR during the mic-key button procedure, she was the highest up person I could talk to, and she was the one who gave the final OK to make it happen.  But then, since it was scheduled on a day that they don't normally have people doing tests at CHOC, she decided to be super nice and come over and do it herself so it would get done.  Unfortunately, she did not have good news to report.  After around 45 minutes to an hour, she finished the testing and found that Ryan does in fact have profound hearing loss in both ears.  I asked her what that meant, and she said basically most people would label him as deaf.  She tested him up to 95 decibels in both ears, the equivalent of being at a rock concert, and he did not respond.  They have nodes reading his brain waves, and there are supposed to be waves and hills on the monitor, but he had a flat line.  So then I asked if it was definitely his ears, or if it could be related to something in his brain because of the mild hydrocephalus.  She said that was a good question, but didn't have an exact answer.  She said the nerve in his ear doesn't appear to work, and his brain doesn't respond.  So of course I still have a LOT of questions.  Her next step was to refer us for Early Intervention (to which we've already been referred) and to get us in for an appointment to get fitted for hearing aids.  But, we confirmed what we had been told was likely the case, that hearing appointments/hearing aids are not covered by insurance.  There are grants available, and maybe we will be able to get some help from the regional center, but I need to look into this first before we proceed.  She didn't sound very convinced that hearing aids would help him, and she told me to be prepared for him to not be able to speak normally.  We are fine with all of that, really.  I think it will be very fulfilling and rewarding for us to learn how to communicate as a family through sign, and I know that Ryan can still have a very happy life without hearing.  I also know that he will be a candidate for the cochlear implants if the hearing aids don't work out for him, so there is still hope for him to hear.  She just made it sound so final.  I guess I don't know where I'm going with this other than to say we are still at the gathering information stage.  Our next step will be to talk to our pediatrician for a referral to an ENT and then we will go from there. 

The Hiccup:  All of that sounds well and good, so why in the world did we end up in the CVICU, right?  Well, during the time Ryan was sedated, they had him hooked up to an EKG.  I'm not sure if that's standard protocol or if they decided to hook him up based on his monitor readings for his sats/heart rate/blood pressure.  The EKG was abnormal because he had an ST depression (I had a VERY crash course in cardiology today, so please forgive me if this doesn't make sense.  I'm not quite sure I understand it all myself).  Once they saw that, they ordered an echo because he has a history of heart issues with the pulmonary hypertension.  The echo looked completely normal, but being the overly cautious doctors they are, they couldn't just ignore the fact that this EKG was abnormal.  So they did one more and it was still not quite right.  That's when they told me the news that we'd be spending one night at CHOC.  They were hunting for a room for us, and I was really thankful we got to be in the CVICU rather than the PICU where there are sick kids with RSV, but man, it was very humbling to be in that unit.  Actually, I have to say, it's humbling to spend this much time in a hospital at all.  I could write pages about the things I have seen that have made me realize how truly blessed we our to have our two little miracles.  It almost makes me forget that Ryan has so many issues because honestly, I've seen way too many families standing outside of hospital rooms crying onto each others' shoulders.  I see that, and I instantly feel so much gratitude and relief, and it's like all his little issues just disappear because at least he is alive.   Anyways, they checked us into the CVICU, Dave brought Dani to the "hosibal" and we switched off so he could see Ryan and I could take her out to dinner (the hospital is on lock down for flu season and isn't allowing anyone inside besides patients and their parents).  Then I went back to switch again and spend the night.  They did another EKG and it looked better.  I thought for sure we'd be able to make it to our 10:15am feeding therapy appointment the next morning.  Then when we woke up, they did another EKG.  This one showed the same ST depressions that they saw yesterday when he was sedated.  So, that bought us some more hospital time.  They needed to draw blood and run labs to check his troponin levels.  If they were elevated, that would be a sign of something more serious.  If they were mid-range, we'd have to stay longer so they could do another lab the next day to see if they were trending up or down.  If they were low (they are supposed to be 0.3 or lower), then we could go home.  The labs finally came back after lunch and his level was 0.2, so that was great news!!  Of course, then they couldn't let us go until they talked to the cardiologist, and they told me they wanted to get one more EKG to be sure, etc. but thankfully our cardiologist knew how much we wanted to get out of there, so she came by and said we could skip the last EKG and just follow up with her in 2 weeks.  I packed up so quickly, they didn't make me wait for the volunteer, they had a nurse walk us down instead.  Of course, in my haste I forgot to get some of the frozen breast milk we had there plus the disc of the head ultrasound I had walked over to radiology to add to Ryan's records so they'd all be in one place.  But, it's ok.  Dave's bringing him back there tomorrow for our second attempt and his first feeding therapy session.

Sorry that got so long, but there was lots to update.  There's more I still need to share about the neurosurgeon and some other things I learned about cardio, but I need to head to bed.  Thank you all for the prayers you sent Ryan's way the past few days (and always).  Tonight I'm asking for prayers to be sent to the families still at CHOC.  I actually feel guilty when I get to walk my baby out of that unit and go home.  We definitely had our fill of hospital time, but I guess it makes you more sympathetic to those who aren't able to bring their little miracles home yet.  My prayers are with them and their families.
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Tuesday, January 22, 2013

Big Day Tomorrow

Ryan is finally getting his Mic-key button!  He was originally supposed to get it put in on December 26th, but he got admitted to CHOC for RSV instead.  So this day has been a long time coming!  The crazy thing is that we've already had an EDAC appointment scheduled for months for tomorrow, so we have to do that first.  Poor guy can't have any milk after 5:30am and his procedure is at 11:30.  His EDAC appointment is at 9am and they are going to evaluate him for an hour to an hour and a half as a NICU follow-up.  I had no idea the appointment would take that long until they called me today and left a message with that little piece of info.  Then, the Mic-key button part of the procedure should only take 5 minutes and the rest of the time he's sedated the hearing evaluators will be finishing the ABR hearing test he wasn't able to complete in December.  Everyone at CHOC has been awesome about letting us combine the GI procedure with the hearing test so we don't have to sedate him twice.  It definitely took some coordinating, but I'm so thankful that they were willing to accommodate this strange request.  GI even called me today to move him 30 minutes earlier since they had a cancellation so that we would have that much extra time in the room for the hearing test.  And even though I'm supposed to check in 2 hours prior, they know he has his EDAC appointment in the next building and they are ok with us coming straight over after.  I could use some prayers for my sanity so I can keep it together with this crazy schedule because with this crazy flu season the hospital has a policy that only parents can come in with the patient, so I'll be on my own since Dave will be at work.  But the biggest prayer requests are for an easy and painless mic-key button procedure, a successful hearing test (I'd even take a miracle here and ask that he can hear, or at least that they can figure out how to get him to hear), and a positive EDAC evaluation.  I'll let you know how everything turns out!

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Monday, January 21, 2013

The results are in!

I feel really bad because I was the total pushy mom who called the pediatrician's office 3 times today hoping to hear the results of this head ultrasound.  I blame the tech who freaked me out!  When I called for the 3rd time at 3:45pm, I decided I would hit "2" to make an appointment so I could talk to a live person instead of leaving a message for the nurse (one of the many little tricks I've learned).  The receptionist looked into it and told me that they were waiting on the past images from CHOC and then they could compare the images and give me the results.  I asked if she thought I'd get the call back tonight, and she said she wasn't sure, but they were open until 6:30pm, so there was still a chance.  When 6:30 rolled around, I really thought I was going to have to come up with some really good breathing exercises to help me make it through until tomorrow when my phone rang!! 

It was the nurse from the pediatrician's office with the report on the ultrasound.  They had looked at all the previous scans, and she said that things look the same, which is good and bad, but mostly good.  It's not great that he has hydrocephalus, but it is great that it's still mild.  She gave us the name of a neurosurgeon who will begin to follow Ryan.  Hopefully he'll just be able to give us more information and it will be nice to have all of his records in one place so we don't have to go through this waiting again! 

Thank you all for the extra thoughts and prayers.  I know they definitely helped!  So Ryan will have one more specialist to see, hopefully he'll outgrow this one as quickly as he outgrew his cardiologist.  I'm not sure how it works, but from my understanding, mild hydrocephalus is not caused by too much pressure in the brain, but just by excess fluid, which can be caused by slower brain development, which could be caused by the lack of a few of his senses.   We'll just keep on top of it, and keep stimulating him with the senses he can use for now so that he will continue to grow.  On the bright side, from what I could tell just being me (not a doctor) and remembering what I saw on the last head ultrasound in October, it definitely looked like his brain had more of those ripples that mean his brain is growing.  It will be nice to be able to meet with someone who can look at those images with me and explain exactly what I'm seeing!  Anyways, thanks again for the prayers.  Our strong little guy is still working on getting better each and every day!

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Waiting, Waiting, Waiting...

So, there was so much to cover in that last update that I forgot something pretty big.  Actually, I probably didn't mention it because I didn't think it was going to be anything really worth mentioning, but now that I'm in the "waiting for results" phase, I can't stop thinking about it.  I figure it couldn't hurt to update about this and get a few extra positive vibes and prayers heading Ryan's direction today.

When we went to the pediatrician on Wednesday, I mentioned that it often seems like Ryan's fontanelle (the soft spot at the front of his skull) seems like it's bulging and pulsating.  I've brought this up before to ER doctors and the PICU doctors, but none of them were ever concerned because he doesn't have any other symptoms of anything serious.  But, ever since that last head ultrasound before we left the NICU where the radiologist said he saw "mild hydrocephalus", I've always had this nagging feeling that we should be looking more into that.  So I brought it up, and she agreed that it wouldn't hurt to order another head ultrasound. 

The soonest I could get him in was this Saturday, which in hindsight wasn't the greatest idea because there usually aren't as many people working on the weekends, so I should've realized we wouldn't get the read out until at least Monday.  And of course today is a holiday, so who knows if it'll happen today.  The ultrasound tech was really nice and asked lots of questions about Ryan's history.  When she realized he was a micropreemie, she seemed extra sympathetic.  I told her he didn't have any brain bleeds in the NICU, so we were really lucky.  As she was looking at the images of his brain, she started to get more, I don't know what to call it...empathetic?  At the beginning, she mentioned that the radiologist was in Irvine (we were at HOAG in Newport Beach), so he wouldn't be able to read it today.  I said that was fine, but then her attitude started to change.  Let's just say she had the world's worst poker face.  As I could see she was getting more and more concerned, I started asking more and more questions.  To the point where she was finishing up and she said, "I think I'll call the radiologist and see if he can look at these images online and let you know what he sees." 

After quite a wait, she came back and said that the radiologist looked at them, and definitely sees hydrocephalus, but he can't tell us about the severity of it because he would need to compare these images to the last ultrasound to see if it has gotten better or worse.  Which made sense, but really irked me because I HATE WAITING.  So I asked if I could somehow get a copy of these images to take to CHOC and have someone there compare.  I was on a mission, and if I had to drive the disc out there and hunt down a radiologist that had access to Ryan's previous images, I would do it, lol.  Luckily, common sense made it's way back into my head as I was waiting for them to make my CD of the scan, and I texted one of Ryan's former primary nurses from CHOC.  She let me know that there wasn't anyone at CHOC to look at it that day, and told me to be sure to have a pediatric radiologist who has experience with ex-preemie cases to look at it.  Then a friend who's also a pediatrician told me that they wouldn't have let us go home if there was something emergent or serious going on, so that was reassuring. 

My hope is that this tech was just really bad at overreacting, and the radiologist just saw mild hydrocephalus because we already know they've seen that in the past.  I've already called and left a message at Ryan's pediatrician's office this morning to see what we need to do to follow up and get the read out.  So as I'm waiting for that call back, I'll be asking for lots of prayers that our little boy's brain is on the road to growing normally and that whatever they saw in the scan was very mild and improved from the last scan.  I'll keep you all posted as we find out more.  Thanks!

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Friday, January 18, 2013

Feeling Like a Rebel.

We met with Ryan's pediatrician on Wednesday as a follow-up to his stint with RSV.  She actually turned it into his well baby visit and gave him a hepatitis shot he needed so he won't have to go back in until after his birthday in March.  She said his lungs sound great, and he's gaining weight like a champ.  He's up to 15 pounds 7oz on their scale.  He was such a good boy and only cried after the shot. 

Here's why I feel like a rebel:  I asked her about starting solids since we hadn't been able to get an appointment to meet with a feeding therapist yet, and she said since he had the swallow study done at the NICU before he was discharged, we could give him a little bit of rice cereal to see how he does.  Like a spoonful a day.  I swear I did the whole solids thing with Dani, but somehow everything I did with Dani has left my brain.  Plus, of course things will be different this time around.  Part of me feels like I'm breaking the rules by not waiting for a feeding therapist, but the other part of me remembers that he's a baby and I'm his mom and if he's showing us that he's ready to start with solids, I shouldn't hold him back just because there isn't an opening on a schedule somewhere.  So, we started that day.  I gave him one tiny spoonful of the thinnest rice cereal you've ever seen.  It was actually probably just breastmilk with a few flakes of dissolved rice on a spoon, to be honest.  He did exactly what he was supposed to and pulled it back into his mouth and swallowed it.  I cannot tell you how encouraging that was!  On Thursday, I tried it again, and this time I thickened it and made it more like cereal and less like rice milk.  He still did great!  I only gave him one spoonful because I didn't want to push him.  Today I made it thick-ish (I still wouldn't call it THICK), but this time I let him take as much as he wanted until he started to act like he was over it.  He took 3 spoonfuls today!  I think tomorrow I'm going to be REALLY brave and try some pureed sweet potatoes.  He's always had a love of eating, he just doesn't have the jaw/tongue strength to suck and transfer milk from a bottle.  That doesn't mean he can't EAT, though, right?!  I am really praying that this will be one area he can really have success with. 

Also on Wednesday, Julie from the Braille Institute came back to work with Ryan on his visual development.  He was doing great looking at her toys and playing.  She had lots of great things to say about how he's showing signs of good brain development since he can grab things and bring his hands to mid-line, and he can pass toys back and forth from one hand to the other.  He also loves to kick his legs while he's lying on his back and she said the fact that he can bring both legs up and down together simultaneously is a good sign as well.  We love good news, so we were thrilled to hear all of that!

Other than that, we had a physical therapy appointment yesterday and Ryan discovered his toes!  He did such a great job after she moved his hands to find his feet a few times, he would just grab on and feel all over his feet.  Then she was holding him cradle style and he decided he wanted to grab them again so he went for it all on his own!  She was really impressed.  He is still pretty delayed as far as lifting and holding his head up when he does tummy time, but we're working on it and he's definitely improving slowly but surely.

Today I took Ryan out to Arcadia to see his contact lens doctor.  She was very pleased with the improvement in his vision.  The contacts do seem to be helping him a lot.  He is looking at toys and tracking them side to side.  He reaches out and grabs things that are close to his face.  And his eyes are definitely less "shifty" which means that he's able to focus better on what he's looking at.  So we'll go back to see her in 12 weeks to make sure the prescription of the lenses is still good for what he needs.  In the meantime, we'll be following up with Dr. Sami here in Orange, and we may be starting him with patching one eye since he seems to prefer the left eye and they want to strengthen the right eye.

I met with someone from the Regional Center today to talk about Early Intervention services for Ryan.  They usually wait until after the NICU follow up evaluation which we have next week, but he is qualifying early based on his hearing loss.  For all the teachers out there, he'll have something similar to an IEP called an IFSP every 6 months until he turns 3.  This is such a great resource because we only qualify for 20 therapy sessions (physical/feeding/speech/etc) per year through our insurance, so once we use those up (which for Ryan will happen in a few weeks), the Regional Center will take over and cover those services for him.  So thankful this service exists because I when I first found out we only got 20 a year I had a minor panic attack and called our insurance case manager right away, lol.  And what a blessing she is because she helps calm my crazy when I have these minor freak outs. :)

So, it sort of feels like we're moving into a new phase for Ryan where we aren't concerned as much about his health as we are his development.  I suppose that's a good thing because he's showing us how strong he is, and he's growing every day, but now we could use some good thoughts and prayers for him to strengthen those muscles and start reaching those milestones.  Poor guy is getting so chunky and his head is SO big now, I can only imagine it's getting harder and harder to try to lift that thing up!  But we believe in the power of prayer!  You've got this, Ry-Ry!

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Sunday, January 13, 2013

Fun-Filled Weekend!

It's been a fun but busy weekend for us.  On Saturday, I took Dani to our friend's daughter's 1st birthday party which was a block away from my aunt and uncle's house, so Dave dropped us off and took Ryan over there for a visit since he couldn't be around all the crowds at the party.  I think it was really good for us all to get out of the house for a little bit. 

Then today my family came over to celebrate my brother's birthday.  My mom made dinner and cheesecake, and Dani enjoyed her 2nd and 3rd cupcake for the weekend.  Don't worry, she pretty much only eats the frosting. ;)  She has continued to boycott her naps, but she's going to bed an hour earlier and sleeping in more in the morning, so I suppose she's getting enough sleep.  Just seems crazy to be giving up the nap already!

Ryan loved spending time with family this weekend, and since everyone was healthy he even got to be held by his uncle Glenn for the first time!  We had to get a picture because he wore his little Polo shirt just for his uncle, who also happened to be wearing one today. 

Ryan is continuing to challenge his strength during tummy time.  He's lifting his head up more and moving his legs like he's thinking about what crawling might be like at some point.  I'm really not worried about reaching any of those movement milestones anytime soon since Dani didn't crawl until she was 11 months old, and didn't walk until 16.5 months.  And she didn't have an excuse!  He is definitely working hard and trying his best, and he'll get there with time and lots of practice.  It is really exciting to see him working hard and making good progress, though. 

Oh, we had another little miracle I have to share.  Yesterday when we got home from my Aunt and Uncle's, we realized one of Ryan's contacts wasn't in his eye.  They pop out pretty frequently, but since we never really take him outside of the living room we can usually find it pretty quickly.  Well, we searched everywhere: the floor, his car seat, the car, all the clothes he was wearing, all of his swings/bouncy seats, blankets, EVERYTHING.  We once thought it was lost and found it stuck to the back of his head, so we checked his bath water after he got out of the tub.  We texted my aunt to have her check her house, even though I checked his eyes before we left knowing we'd be bummed if they weren't both in his eyes and we left one there.  Nothing.  So we went to bed hoping we'd find it with a fresh look in the morning.  Morning came and we researched everything to no avail.  We were talking about calling the eye doctor on Monday and how we should get a backup set and why can't they just give us glasses, etc.  Then, after I changed his diaper, I went to put him in his seat to set up his feed, and right there in the bottom of the seat, in completely plain view, was his contact.  I had actually just posted for some positive thoughts and prayers in my preemie support group to help find it, when out of nowhere it appeared in plain sight on a seat I must've checked at least five times.  It was truly bizarre and a nice little miracle to start out our Sunday morning.

Thank you all again for keeping our little guy in your prayers.  I know that all the love and support is helping him so much.  I get a nice email from my grandparents with a little prayer for Ryan every night, and it's a constant reminder of how many people are out there praying for him.  And it just makes me appreciate every little milestone and mark of progress he makes because I know he has this village helping him get there one day at a time.

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Saturday, January 12, 2013

Past week's appointments

After our first full week back in the routine of work and appointments, I'm finally getting a chance to update.  Here's what went on this week:

Tuesday afternoon we had an appointment with Ryan's eye surgeon, Dr. Reiser.  She was just checking him as his 3rd follow-up post surgery, and now we will start going to Dr. Sami for our follow ups instead.  She was pleased with how things looked in his eyes.  She had a spinning toy she used to see if he would track and follow with his eyes, and she said he was definitely showing improvement, which is what we are noticing at home as well.  She said he's definitely "directional" meaning he can move his eyes in the general direction of the toy, but he doesn't quite focus in on it yet.  We are noticing at home that he's noticing more of his toys and our faces, so we are thrilled and hopeful that with time and practice his eyes will continue to improve. 

On Friday we had a visit scheduled with a lady from the Braille Institute, but she had to postpone.  She's going to meet with him once every other week to work on visual exercises.  She's met with him once before, and we are looking forward to having him start up with that again.

Physical Therapy:
Ryan had both Feeding and Physical Therapy evaluations back in November, but CHOC hasn't had any openings for either until just recently.  He is qualified for 2 times a week for each therapy, but so far we are only able to get physical therapy once a week.  But we'll take what we can get!  He missed his first appointment with PT because he was still in the PICU last week with RSV, so this Thursday was his first visit.  She wasn't able to do a lot with him because she needed a clearance letter from his pediatrician after his RSV stay, which I was not aware of.  But the visit wasn't a waste.  She still got a lot of information about Ryan and even showed me ways to help support his lower back/hips to help him sit up without arching his back, which is his natural tendency.  She was impressed with how well he is holding his head up and steady once I got him sitting up on my lap.  He's definitely getting stronger!

I also spent a lot of time on the phone with our insurance case manager and some local therapy places.  I'm hoping that one of them will be covered and have some openings for us, especially for feeding therapy.  It doesn't seem that CHOC's feeding therapists will have any openings any time soon, and I don't want him to miss out on anything.  Hopefully one of them can get us in sooner!

Ryan has been doing great and growing on his feeds.  I've been talking to Dr. Ho quite a bit this week with trying to reschedule his Mic-key button placement surgery and adjusting his diet to accommodate my dwindling freezer stash of breastmilk.  I finally stopped pumping over the break because it was just getting to be too much with everything that was going on.  We've been blowing through the supply in our deep freezer pretty quickly, so now we are giving him 4 or 5oz of breastmilk with 1oz of neosure each feed.  In a few days we'll switch it to 3 or 4oz milk/2oz neosure and so on.  That should stretch out my supply of milk for a few more weeks, and help his stomach slowly adjust to the formula before we switch him over completely. 

In general, we are so impressed with how well he bounced back from the RSV.  He seems healthier than ever, and he's getting so expressive!  It's wonderful to see his smiling face light up every day now.  He really is a funny little character, and we just feel so blessed to have him home with us every day.

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Tuesday, January 8, 2013

A Christmas Miracle

Something pretty amazing happened today.  I was teaching my 2nd graders writing and the genre we have been studying is "Friendly Letters".  Yesterday we started working on a thank you letter to thank someone for their favorite gift or just for being a nice person.  I read them a cute book called "Thank You, Santa" and they picked who they were going to write to.  Today we started on the prewriting, and I always model my own sample first so they can see how to do it, then they get to write theirs.  I put my thinking map under the elmo (I realize I'm using some teacher lingo here, just bear with me) and started to think on my toes about who I would write to and what I would say.  I decided to write to Santa to go along with the letter I had written him as a sample before the winter break.  In that letter, I had asked him for two things:  for Ryan to continue to grow healthier and stronger and coffee. (I know, random.  But they're 2nd graders and they often help me come up with ideas, so the coffee part was partly them because they see me with it every morning). 

So I start formulating this letter to Santa.  I get as far as this:

Dear Santa,

when one of my students asks, "Did you get the coffee?"  which is when I remember that I had asked for coffee in the first letter to Santa.  Then it dawns on me that I had also asked for Ryan to get healthier and stronger for Christmas.  Which is when my face lit up and I told the class, "Yes!  I DID get some coffee!  And you know what?  I got another Christmas Miracle!  Remember how I asked Santa to make Ryan better for Christmas?  Well, he got a little bit sick when the break started.  And then it slowly started to get a little worse.  So we took him into the hospital to get checked on Christmas Eve, and we were sad because we really thought they might make him stay in the hospital for Christmas.  But you know what?  They didn't make him stay!  They let him come home with us, and he was really happy to have his very first Christmas at home.  In fact, he waited until Christmas was all the way over, just after midnight, before he got sick again.  So we took him back to the hospital, and this time he had to stay for a little bit."

I could see some of their faces were a little bit saddened by that, so I continued.  You should know that the easiest way to get me to go on a tangent is to talk about my kids.  Anyways, so I said,  "But you know what?  There was another Christmas Miracle, even though he had to go stay in the hospital, we were so lucky because they told us that if he got sick and went back in the hospital he might be in there a REALLY long time, like weeks or months.  And you know what?  Somehow, someway, he only had to stay in there 8 days!"

It was actually the first time I counted, and I must have been very convincing with my delivery because their faces lit up with how miraculous it was.  Even little B, who is very bright and my biggest Santa skeptic (excerpt from his letter to Santa:  "Dear Santa, Please bring me *insert impossible gift here*, a ferrari, and $1,000,000.  If you bring me those things, I will believe in you.  If you don't, I won't believe in you.  If you bring me something else, I won't believe in you."  No joke.  This is a SECOND grader! LOL) looked at me with a huge grin on his face and said, "WOW!"

So then, of course, I had to continue.  "Yup, he got to stay home with us for Christmas, then he just popped over to the hospital for a measly 8 days, got completely better, and came back home with us!  And guess what?  Now that he's back home, he's healthier and stronger than ever!  He's starting to hold his head up more and sit up more and we can really tell he's growing bigger and stronger every day!"  They were so impressed that Santa really had delivered on his Christmas gift to me.  And as happy and blessed as I felt about Ryan over the break, it really didn't dawn on me how truly miraculous it all was until I talked it over with my 2nd graders.  I really did get everything I wished for this Christmas.

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Sunday, January 6, 2013

Speedy Recovery

I don't want to jinx anything, but things have been so great with Ryan since we got home.  Once he turned the RSV corner and got back on his low flow cannula, he was just as good as new!  Well, as good as *his* new, but that's all we ask!  One step at a time :)

We were really lucky to have these last few days at home to relax and readjust before heading back to work tomorrow.  It's been so fun to play with Ryan and see how much stronger he is getting each day.  I feel like I'm watching him through the lens of my iPhone video camera 90% of the time because I keep hoping to catch him in the act of a milestone.  He's SO close to rolling over, it's funny to put him on his play mat and watch him swing his legs back and forth with all his might as if he's trying to gain momentum to get his chunky little self all the way onto his belly.  It'll be any day now, I can feel it!  He's also getting better at holding his neck up, especially when we hold him in the sitting position.  I'm excited for his physical therapy appointment on Thursday so we can see how far he's come since his evaluation and see how close he is to doing other fun things like starting solids.

Thank you all for checking in on him and keeping him in your prayers.  We're feeling so blessed to be home and healthy for the new year!  Now we just need to keep those prayers going through the rest of the flu season!  I think we can, I think we can!

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Friday, January 4, 2013

We're HOME!

Wow, what a difference a day makes.  I got to CHOC around lunch time on the 2nd to switch kids with Dave, and Ryan was still on the high flow machine at 3 liters and 35% oxygen.  It was definitely the lowest he'd been on there, but I never imagined at that point we'd be close to going home yet.  Dave took Dani home and I settled in with Ryan.  The RT came in and said he's been tolerating some pretty aggressive weaning, so he was going to try turning the flow down to 1 liter.  I found that a little odd because once he gets to 2 liters or lower, they can put him off the wall so he'll get 100% oxygen with the lower flow.  They explained back in the NICU days how even though it's 100%, there's not a seal around his nostrils so it doesn't all go in, and it works out to the 35-40% he's getting on the higher flow machines.  So anyways, he tried him on 1 liter with 35% oxygen, and his sats slowly dropped and stayed right under 90, which isn't good.  So he went to change him back to 3 liters and I asked, "Can we just try him at 2 liters off the wall and see if he does better with that?"  He said we could try, so he switched him off the high flow cannula and put on the low flow cannula and sure enough he started satting 99/100 which is higher than he had been satting on the high flow machine all week! 

Once that happened, things really started moving.  A team of doctors from the 2nd floor came up to examine Ryan and said they'd be moving us down there by that night.  They sent up a new nurse and we got packed up and moved by dinner time.  Before we moved, we had a nice visit from 2 of his favorite NICU nurses:  his primary nurse, Lindsey, and the very first nurse I ever met with Ryan when I was finally discharged from HOAG and got to go visit him, Yen.  If you've been following our journey from the beginning, you probably remember those names. :)  It was really nice to see them again, and I could tell that Ryan could sense they were there with him.  He just loves seeing his former nurses! 

We were lucky when they moved us they gave us a private room on the 2nd floor PICU because they knew I was spending the night.  I got a nice little wheeled bed and everything!  It was surreal being on the 2nd floor again because that's the same floor as the NICU and we were on the same side as the Small Babies Unit where Ryan spent most of his days.  In fact, when we were there, this area was not being used because it's more for overflow (another sign that this RSV season is brutal because this floor, which is usually closed, was full of sick kids).  I remember a few days before we were discharged from the NICU, the Apria Home Health representative used this nurses station to demonstrate some of the monitors we would be taking home to use on Ryan because they were going to beep and she didn't want to be in a room with other babies.  It was strange to see it transformed from that deserted room to a bustling PICU.

The nice part about being on the same floor as the NICU was that we got to see a few of our friends before we left.  On our last day there, word must have spread fast that we were going home because people were stopping by to say goodbye to Ryan.  We got to see his primary nurse, Julie, one more time, our former social worker, Candice, his former physical therapist, Jen, and his former NP, Mindy.  He also had one of his former RT's that day.  It's weird that it's only been 2 and 1/2 months since we brought him home, but seeing all those familiar faces it almost felt like we never left.  The nurse we had that day was so amazed at how many people at CHOC know Ryan.  I can't wait until the day he's all grown up and he can give back something to that other "family" by volunteering somehow. 

Overall, we are really blessed that this whole thing went down the way it did.  Ryan continues to amaze us with his strength and determination.  He really did better than anyone ever expected getting through that virus.  I'm sure a big part of is was the 2 rounds of synagis shots he had prior, but a lot of it was the answered prayers we were all sending up.  I think it also helped to have so many wonderful doctors and nurses looking after him at CHOC.  It was like being with family, they took such good care of him.  And the fact that he was in and out in just over a week is truly amazing, with the added blessing that Dave and I were on winter break so we were able to juggle staying in the hospital and watching Dani without much of a strain.  Thank you all for keeping Ryan in your thoughts and prayers!
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Wednesday, January 2, 2013

Some great news!

I just got off the phone with Dave, and I had to update the great news before I head over there to switch off.  Ryan is weaning down on the oxygen and doing great! He's down to a flow of 5 and keeping his sats up at 35% oxygen.  So, we're getting closer to low flow!  Keep those prayers coming, we want to get him home before this break is over so we can have those last few days of family time! 

In other news, Ryan is really seeming like he's starting to come online with his development.  I know he will be delayed, and it could be a few years before he fully catches up, but it really gets exciting to see him starting to do those "normal" baby things.  When I talked to Dave, he asked me to bring some teething toys because Ryan is trying to chew on everything.  I actually noticed when I was there that he was getting a little bit fussy, and if I put my finger in his mouth he would bite down on it and calm down, but of course I didn't even think of teething because when he has so many other things going on you almost forget that there are normal baby milestones he's going to have going on as well!  It's crazy to think that I'm actually EXCITED about my baby teething, but I am!  He's also getting better at holding his neck up when we support him in a sitting position.  This one is HUGE because he's been pretty behind physically, but he's acting like he's starting to get it now.  He actually really likes sitting up with us supporting him, and even though we don't know exactly how much he is seeing, he sure does look around the room like he's taking everything in. 

I just had to share all this great news before heading up to see him.  Thank you for continuing the positive thoughts and prayers for him.  He has such an amazing support team in you all!

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Tuesday, January 1, 2013

Happy New Year!

Sorry I haven't been updating as much as I should, not a whole lot has changed so I didn't feel like there was a lot to share.  Ryan is doing well, and he seems to be over the worst part of the virus.  He's much happier and more playful, really back to his old self.  The feverish symptoms seem to be gone.  He does still have that pesky lingering cough and wheeze, but he's getting better at coughing the gunk up himself so he doesn't have to get suctioned as often.  He's back to his regular feeding routine, but they still have him on plain, unfortified breastmilk.  I keep asking if they want to add the fortifier back in, and they keep saying he doesn't need it.  I swear if I get in trouble from any of the specialist docs, I'm going to have them call the PICU!  But he is tolerating the feeds really well and doesn't seem to be affected by his reflux as much lately.  In fact, I haven't seen him spit up once since he's been there!  It could be that we aren't moving him around as much, so maybe that helps, but honestly if he's going to be less gassy and refluxy without the fortifier, I might have to talk to them about keeping him off it for now.  All the nurses comment on how he's the chunkiest ex-25 weeker they've seen, so it's not like he's not a healthy, sturdy size.  But we shall see.

They've been slowly trying to wean down his oxygen, but it seems like anytime they get anywhere he ends up needing to get bumped back up.  Yesterday they had him down to 6 liters of flow all day, then last night he was hanging out with sats in the high 80s (he's supposed to be over 94), so they had to bump his flow back up to 9 liters.  Then today they slowly weaned him down again and he made it back down to 7 liters.  So, it's the old game we're so used to...a few steps forward, a few steps back.  We are just thankful that he's doing better overall, but we're getting a bit anxious about going back to work in a week.  I don't know what we are going to do about that one, but we will cross that bridge when we come to it.

We started the new year off right with a nice visit from our good friend, Christina.  It was good to see a friendly face, especially since we were both able to commiserate about having to miss our good friend's wedding last night.  Congrats to Bev and Brian, so sorry I couldn't be there to celebrate your big day!  The pictures look amazing.  Other than that, people keep asking how WE are holding up, and honestly, we are just in a routine.  The switching off spending a night here at home and then a night at the hospital is working out well, but it's rough not getting to spend any time together on our winter break.  The good news is, Ryan has one of us there with him full time, and Dani is adapting to it all really well.  In fact, it's been a good bonding time for Dani and her daddy on the nights he stays with her.  We're thankful for all we have been blessed with in 2012, and we are really excited for the hope and potential of 2013.  We wish all of you a very happy and healthy 2013!

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