Monday, December 30, 2013

Keeping My Cool.

I admit it. I've been horrible about updating this blog.  But honestly, this is a true case of "no news is good news."  Ryan has been doing really well, relatively speaking.  It's important to speak relatively here because, well, he still throws up a lot, he has so much congestion he wakes himself up coughing, and developmentally, he's still way behind.  But when you think of where he was on this exact date last year and through the last new year, none of that matters.  Really.  None of it.  He's home with us, he's not being admitted to a hospital with RSV, his immune system is finally kicking in, and he will most likely have his first Cochlear Implant in the next month or so. ::::knocking on the biggest piece of wood ever::::: We definitely can't complain!

So, if life is so great, why do I need to keep my cool?  Well, sit back and relax as I tell you a story that is SO ridiculous, you may not even believe it.  In fact, I hardly believe I actually lived it other than the fact that my head is still throbbing from the exertion of showing so much restraint today. 

Let's begin.  It all started this morning at around 8:45am.  Dave and I were in the car driving Ryan to his 9am pulmonary hypertension clinic appointment.  In his typical "I will never allow you to bring me to an appointment on time" fashion, Ryan threw up all over himself just as we were getting ready to load him into the car, so we had to clean him up and start over.  Don't even feel bad yet, this happens every. single. time.  We really should start planning it into the schedule.  Anyways, now that we are running 15 minutes behind schedule, I call the hospital clinic on the way there to let them know we are late but on our way so they don't cancel our appointment.  After having to "Press 1 to hear this in English" and "Press 2 to make an appointment" at least 13 times, I finally got through to the nice call center man and told him our situation.  He told me our appointment would probably be cancelled if we were late, but he could make a note for us, but then he stopped after he looked up Ryan's name and said, "Oh wait, your appointment was already cancelled on Dec. 3rd."  Ummmm, what??  I won't even get into that part of the crazy.  There's not enough time.

I tell him to transfer me to someone who can get us seen by a doctor today, and he does.  She tells me (after I had to press 1 and then 2, of course) that our appointment was indeed cancelled for some reason, but there is an opening at 10:15 due to another cancellation.  So we hang out around the hospital and wait for the 10:15 appointment.  Finally get seen around 11am by the pulmonary and cardiology specialists.  Things were looking up.  His doctors are great, I have no complaints about them.  They spent a nice chunk of time reviewing our current concerns with Ryan's health and talking with us about everything coming up.  That's when we mentioned the Synagis shot. 

I should explain a little about Synagis.  This is a very expensive shot that is given to kids who are at high risk for contracting RSV.  So preemies, babies with heart/lung conditions or immune disorders, etc. typically get approved for it. It's not a live virus like the flu shot, it's made up of antibodies that don't necessarily make you immune to RSV, but they help fight it so that if you do catch it, hopefully it won't be as severe.  Since it's not a live virus that would build up in your system over time, this one has to be given in 5 different doses that have to be spread out 25-30 days apart.  After 30 days, the dose will wear off and not provide protection.  This is our second year getting the Synagis shot, and last year Ryan did end up hospitalized with RSV the day after Christmas even though he had already had 2 doses.  The positive side to that is that he didn't end up intubated on the ventilator, which very easily could've been the case, and that is likely due to the protection offered by the Synagis shot. 

Back to the appointment.  He had his 2nd Synagis shot on December 2nd and was scheduled for the next one on January 6th.  If you do the math on that, it's 35 days, which means he would have a window of 5 days where he would not be protected from RSV.  They warned us about that on the 2nd because they only do the clinics in Newport Beach on the first Monday of the month, and January happens to have a late Monday.  They said if we were worried about it, we could always go up to Orange to have it done there.  So, we figured, since we were there today, and we were well within the "25-30 days since the previous shot" window, we would get it done today rather than go those 5 days without coverage.  We asked the doctors about it and both agreed that it would be a smart idea to get it done today.  In fact, they went on to explain that the 3rd dose provides the most benefit and if you let it wear off and wait it could make it less effective.  So, they put the order in and said a nurse would come by when we were finished to give it.

After the doctors finished, a nurse did come by.  She said she would be giving the Synagis shot.  Yup, we know.  She left to go get it and came back with some interesting news.  "Actually, it doesn't look like you can get it today because your insurance hasn't approved it."  I'm sorry?  Actually, our insurance HAS approved it.  Five doses through March, two of which we have already received.  Why would they suddenly not have that approval on file?  Then it was, "Oh, actually, it's because it hasn't been long enough since your last dose."  Again I say, I'm sorry??  Our last dose was on December 2nd.  Today is December 30th.  That's 28 days, right?  The window is 25-30.  How are we not in the window?  So she left to talk to the Synagis coordinator again, and this time she came back with this gem.  "OK, you can't get the shot today because it's still December and your insurance says that you can't get the shot twice in the same calendar month.  So since you had one on December 2nd, you have to wait until January to have it again."  I can't even tell you the amount of red I saw.  But, I will say, she was goooood.  Because I believed her for a hot minute.  But, insurance was going to feel my wrath and I'll be darned if we weren't going to get them to make an exception.  I mean, come on.  Would you rather pay for the shot a few days earlier or have my kid end up in the hospital with RSV which I ASSURE you will cost your company quite a bit more.

So we get the insurance company on the phone, they transfer us to the specialty department and we get placed on hold.  I swear, hold music is my own personal torture.  Now you know my weakness, please don't use it against me.  Then, the music pauses and we hear, "Our operators are busy assisting other callers.  If you'd like to leave a message, please press one. Otherwise, please hang on the line for the next available operator."  I have never been more thrilled to NOT have to press 1 after the call earlier.  But then, wouldn't you no fault of my own or indication by my fingers, the music stopped again and sent me to a voice mailbox!  The red I was seeing was turning maroon at this point.  I left the most polite message I could muster, explaining that I did not, in fact, wish to leave a message but their system gave me no other choice, but that we were actually in the hospital that very moment and needed someone to call us right back to assist us." 

We decided to make the best of that time and walk over to the main hospital where we had to visit the Heart Institute so that Ryan could get his echo and EKG done.  This part is actually quite funny.  We get over there and check in and they say, "OK, can you please wait in the lobby and someone will come get you right away."  We waited 30 minutes so that someone could come out and call our name, have us sign TWO papers that we had already signed in the building we had just come from, which, mind you, is directly connected to this building by a parking garage.  I have never seen a woman blow through that paperwork (all TWO pages) as quickly as she did, and I can only assume it had something to do with my tightly pursed lips and extremely annoyed tone as I responded to, "Has your address or insurance information changed?"

"Do you mean from the last time I checked in about two hours ago?  Nope."

So we entered the hospital and made our way to the Heart Institute where we proceeded to wait.  For the echo, for the EKG, and for the insurance people to call us back.  In the meantime...Ryan is running low on his portable oxygen tanks and we put his last cloth diaper on him, which he promptly pooped in on our way back to the echo.  Obviously when we packed his diaper bag in the morning we never could've imagined we'd still be there well past lunch time.  Thank God we decided to put his blended food on ice in his little pump backpack so he could still get his gtube feeds.

At a bit after 1pm, we walked out of the building after finishing up at the Heart Institute.  Our phones had not had reception in the hospital, so we tried calling insurance again one last time before going home, defeated.  This time we got through to the specialty department and I explained our situation.  She told me there is absolutely nothing in their approval that says anything about not having two doses in the same month.  All it says is that he is approved for 5 shots between November 1st and March 31st and that they should be spaced around 4 weeks apart (same as the recommended 25-30 days).  I had her fax that over to the clinic and I marched back in to the front desk and told them I needed to speak to the "Synagis Coordinator".  The receptionist, bless her heart, finally got this person on the phone and then proceeded to give me the run around about why they couldn't give him the shot today.  All the same reasons as before...and she threw in a few fun ones like, "It's only been 18 days since your last dose." (Fuzzy math much?) and "If you do this one now you won't get a dose in March!" Actually, that was quite funny, too.  I had to explain to at least 3 different people that if we get this shot now, at the END of December, that will bump all of our future shots to the end of the month instead of the beginning.  So we'll get one at the end of January and the end of February...which will last 30 days...which is WELL into MARCH!!  Omg, I get angry all over again just thinking about it.  And wouldn't you know, God was kind enough to make February a short month.  BONUS COVERAGE!!  I am making this sound much calmer than I actually was, but basically, to summarize, what I finally said was, "We are not leaving here today without my son getting that shot. Do what you need to do or tell me who else I need to talk to to make this happen sooner rather than later because he's on oxygen and we are running low." 

While the receptionist was running around behind closed doors trying to quell the beast that had arisen inside me, I went outside and searched for the phone number to the hospital's customer service line.  The very sweet lady who answered could immediately tell I was upset, so she actually walked over to the clinic and listened to all that you've read here, and then, like a medical Mary Poppins, she walked into that clinic and made sh*t happen.  At this point, it was 2:45.  We had been out of the house with Ryan, hanging around probably one of the top 5 germiest places on the planet, for 6 HOURS.  I was livid.  It honest to God felt like they actually WANTED him to get sick. "Here, please wait in this huge waiting room full of REALLY sick kids while we continue to feed you ridiculous nonsense about why your child can't have the shot that he is ENTITLED TO by your insurance simply because we are morons."  (OK.  I'm getting mean. Pretend I didn't say all of that last part.  But I'm not deleting it.) 

So after the customer service rep went in (this was after the receptionist had told us they were working on it and it should just be another 15-20 more minutes), she came out and told us that they were ordering the Synagis shot from the pharmacy right then, and we could go back with her to have it administered.  Two very nice nurses injected the shot and we were out of there in 5 minutes.  I mean, really.  REALLY?!?!?!?! 

I had to put this out in words because I am the type of person who likes to tell people things.  If I think it will help just ONE person to NOT have to deal with this kind of crazy, then it's completely worth it.  I can see the stats on this blog, and I know people are reading even though I'm not posting much.  Probably because a lot of the things we talk about with Ryan are highly searchable.  I know, because I was there.  When he was in the NICU, I spent a ton of time googling things related to prematurity.  I especially loved looking at blogs of former 25 weekers who were a little bit older, just to see what the future had in store.  So, if you are reading this from my shoes almost 2 years ago, please know that some parts of this journey do get easier, but you will never have to stop being an advocate for your child.  And don't ever let anyone make you feel like you don't know better simply because of their job title.  YOU are the parent, and YOU know your child better than anyone.
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Sunday, November 24, 2013

Wow, a whole month!

It appears I went over a whole month without updating about Ryan!  I have no excuse other than it's been so completely busy over here.  But, we're on a week long break from school so I'm making time this fine Sunday morning to post an update.  This is my "church time" since we aren't risking bringing the kids to church during flu season.  Just one of the bummer side effects of preemie flu season lockdown, but we know it's temporary and we need to do what's best to keep Ryan from getting sick.

So, here are some updates.  It's always hard to know where to begin!

Lungs/heart:  I already updated about our last pulmonary hypertension clinic in September.  The cardiologist was pleased that his PPHN seems to be on its way out again, but we're keeping him on the meds through flu season as a safety net.  I didn't get to meet with the pulmonologist because I had to leave after waiting a few hours.  Since then, we have been rescheduled for the next PPHN clinic at the end of December.  We've been in to the pulmonologist's office just to get the first RSV shot of FIVE :( but we didn't meet with the doctor.  A nurse practitioner checked him over and he's been doing pretty well as far as sats on his oxygen.  He does still desat to the low 90s/high 80s if his prongs come out in his sleep, so we know he's still not ready to come off the o2 yet, but part of me wonders if he's just so used to it now that his body doesn't send his lungs the signal to start taking deeper breaths when the prongs come out to compensate.  But, we don't really want to mess with anything during flu season because he needs all the extra support he can get, so we'll readdress this in the spring.  He's currently on 3/4 liters of oxygen 24/7 and he's satting great (97-100).

Hearing:  We're still putting the hearing aids in to have him get used to wearing them, but when the batteries die we don't worry about switching them.  They don't help him hear sound, so wearing them is just practice for when he gets the Cochlear Implants placed.  We are still on track for that to happen in January, but we are currently waiting on a call back from the scheduler at USC who needs to set up a pre-surgery assessment appointment.  The director of education from USC called me and basically did a phone interview to see what I knew about the Cochlear Implant, success/fail rates, follow up procedures, etc.  I think she was pretty impressed with my research.  She started by asking his medical history, and I was able to rattle off every test, MRI, CT scan, indication of hearing/non-hearing, etc from birth to present without skipping a beat.  Then when she asked what I knew about CI, I was able to tell her that I had spoken with people from California Deaf Blind Children's Services, the deaf/hard of hearing specialists in our local school district, our regional center, and even a few different parents who have children with the implants (thanks to all of YOU guys for those connections!) and she was definitely pleased.  I also told her that we had decided on our own to take him to a developmental neurologist to see if SHE thought he'd be a good candidate.  We are aware that the implants will only work as well as the brain will be able to receive the sound input and process it in a way that will translate into sound, and the neurologist was very optimistic.  So, I think we've saved ourselves a lot of time by getting those things taken care of and out of the way before scheduling the surgery.  Now we just need to meet with them and get the exact date in January. :)  The only thing we could foresee hindering this would be if he got sick in the meantime, so we are being extra cautious about exposing him to germs, etc. 

GI and Blended Diet:  About 2 weeks ago, Ryan's vomiting started to increase again and we couldn't figure out what we were doing wrong.  We'd tried eliminating certain things like dairy, trying different rates and volumes, etc., to no avail.  Finally, we decided, maybe his super high fat/high calorie recipe was just too much for him to handle.  So we decided to change it up and just think like "normal" parents.  What would we normally feed a 20 month old?  Surely not avocado with tomato paste and honey and molasses and coconut oil and almonds and banana and blah blah blah all mixed together!  So, we would take whatever we were eating (or Dani was eating) and just blend it up with some liquids to thin it out.  Think mac and cheese with some banana and apple juice.  We also started doing more feeds throughout the day at smaller volumes, and it's been working great!  He's only thrown up one time in the last 8-10 days, which is miraculous.  So we are going to stick with this for a while and see how it affects his weight.  So far, he has lost a few ounces, but nothing to concerning.  If he gets under 18lbs we'll have to make some adjustments.  I feel like having his stomach not so full all the time is actually helping with his activity level, which means his burning more calories rolling around and, you know, catch 22.

Eyes:  Ryan is still allowing us to put in his contacts, but he sure does rub his eyes a lot when they are in!  I guess it's good that he's noticing and somewhat protesting, but dang those things are hard to find when they pop out.  And he is getting really good at making them pop out.  So we spend a lot of time on all fours crawling around trying to retrieve them :)  

Development:  This might be a big one.  Ryan is still significantly delayed in his development.  At 20 months/17 months adjusted, he's not sitting up on his own, not crawling, etc.  His therapists do a lot of assessments on him, and a few weeks ago they brought up Autism.  The big indicator is that he doesn't make eye contact with us.  We assumed that it had something to do with being deaf, that he didn't know sound was coming out of our mouths so he had no real reason to look at our faces.  But, we came to find out that the opposite is actually true for deaf kids.  If they can't hear, they have MORE motivation to look at you to see your reaction as they are exploring things.  So if they pick up a toy they aren't sure about, they might turn and look back at mommy to see if she gives a face of approval or denial.  Another indicator is the way he focuses on staring at certain things, like his hands for example.  He'll put his hand right in front of his eyes and just stare.  Again, we thought maybe this was part of his visual impairment, but apparently it's an indicator of Autism.  So, while we have definitely noticed all of these issues, we always attributed them to something else that we thought he would just "grow out of" as we worked on improving his hearing and vision.  Since that is not the case, we will be documenting all of his behaviors and the therapists are going to apply for more therapy hours for him that will focus on social development to address this.  As he does improve, this is the type of label they can remove down the road if necessary, but for now, we're going to look at it as a positive to get him more help and more services.  It also gives us a direction and strategies we can use with him to help this improve when the therapists aren't here with him.  And on the bright side, he is making gains, albeit slowly.  That's all we can hope for!

General:  Just over a month ago the full time nurse we had moved out of state, and then we ended up with two nurses who split the week.  I was a bit nervous about this at first, but both of his new nurses are great and they each have their own style, so it's good for Ryan to have a little variety, I think.  He really is such an easy, mellow little guy aside from all the crazy medical issues, so he's probably a nurses dream patient :)  My mom has also been a huge help with him and Dani as always. 

While Ryan's overall medical issues listed above are pretty stable or improving, we have a small issue we're dealing with right now in that he does not do well with changes in the weather.  Since it's been flip flopping between hot and dry and cold and damp, he's been waking up congested and coughing.  We actually called in this morning to see if there was anything over the counter we could give to help with the mucous, and they actually recommended honey for children his age.  They said that in side by side studies with guaifenesin, honey performed just as well without the risk of side effects.  So, we've been giving him honey orally and it really does seem to help. 

I think that's everything...WHEW!  We are really looking forward to this week at home spending time with these guys and seeing family for Thanksgiving.  This will be the first time we'll have to bring him a pack and play or something to contain him since he can roll around pretty much anywhere now!  We hope you all have a lovely and blessed Thanksgiving as well.  So much for which to be thankful!
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Thursday, October 10, 2013

Spray Pal

I just wanted to give a huge shout out to Daniel Tim Tim for making this awesome video for our Round 2 video entry in the Intuit Small Business Big Game contest.  If you watch, you can catch a few glimpses of our little fighter and see how big he's getting!  We didn't invent the Spray Pal to make money, we created it because we saw a problem and wanted to solve it just to make our own lives easier.  We started to realize that others could benefit from the idea, so we moved forward with the patent process and bringing it to market.  We went slowly and carefully, and then Ryan was born.  The crazy thing is, that was the time when things started to really take of with Spray Pal.  Now we continue to move forward with Spray Pal for various reasons.  1) It makes using cloth diapers easier which is good for our earth.  2) The proceeds allow me to teach part time so I can spend the rest of the time home with my kids and take Ryan to doctor's appointments and therapies. 3) It helps pay for the extra medical expenses you don't really think about...prescriptions, blended diet ingredients, hearing aids, contact lenses, etc, etc, LOL.  The expenses with a special needs kiddo can add up, but we are truly blessed that with Spray Pal we are managing it ok and we would definitely not have it any other way!  Voting ends October 13th and we truly appreciate all of your support.  If you'd like to vote, you can click on the link below and vote daily.  No information input is required, just click the yellow voting box.  Thanks so much!

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Wednesday, September 25, 2013

EDAC Appointment

I just wanted to quickly update about Ryan's EDAC follow-up today.  Basically, we bring him in to CHOC to get evaluated by a nurse, dietician, two therapists, a social worker, and finally a physician to see how his overall health and development is going after being discharged from the NICU.  He had his first eval like this back in January, so it was kinda cool to have some stats to compare with and see if he's shown any improvement.

The nurse and dietician were really impressed with his relative overall health, weight gain over the last few months (thank you blenderized diet), and regularity (again, thank you blenderized diet).  They asked questions about flu shot and synagis, which we have all scheduled, so that portion was pretty quick.

Then the therapists brought him down to a mat and did various assessments on his gross motor, fine motor, and cognitive development.  This was the coolest part of the appointment because he performed SO much better this time than the first time.  He even babbled up a storm, which is especially impressive since they confirmed what we already know that he doesn't respond to sound even with his hearing aids in.  At his last appointment, his cognitive development was rated  at 4 months, and this time they put him at 7 months!  Last time his gross motor was that of a 1 month old, and this time it was around 4 months!  And fine motor wasn't even on their rating chart last time, but this time it was also 4 months!  So overall, though he is severely delayed, he is working on his own curve and it's moving in the right direction!  I can only imagine how amazing his development will grow once he gets Cochlear Implants (God willing) and can hopefully hear our encouraging words and teachings!

Thanks for all the positive thoughts and prayers you sent his way today, it was really nice to have another appointment with GOOD news this week!

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Tuesday, September 24, 2013

Pulmonary Hypertension Clinic

Yesterday morning I took Ryan to his Pulmonary Hypertension clinic appointment.  We first had to have an echo done in the cardiology office across the street, then drive over to CHOC and check in for the PPHN clinic.  It was also our first day without our awesome home nurse (who is moving to Washington and will be dearly missed), so needless to say it was a crazy morning!  We were a few minutes late to the echo by the time I navigated rush our traffic and the parking structure.  Once that was done, Ryan and I booked it over to the clinic structure, and of course even the handicapped spots were full.  So, by the time we parked over there and made our way in, we checked in about 25 minutes late.  Not the best start.

As we waited in the large and crowded waiting area, the sound of children coughing haphazardly into the air made me cringe.  I carefully placed a blanket over Ryan's car seat so to hopefully shield him from the germs.  Just more evidence that the flu season is upon us, and preemie lockdown is in full effect in our house.

When we were called back, the nurse had us waiting in a crowded hallway for one of the weighing station rooms to open up.  He had just been weighed and measured in the cardiology office not even an hour before that, so I asked if we could just use those stats and bypass the crowd of germs (yes, this is how my mind's eye see people now.  Just germ carriers.  Especially kids.  And even more especially kids who are coughing like crazy in a pulmonary office.  I mean, really).  She consented and led us to our room where she took his blood pressure and sats (he was satting 97-98 on .5 liters).

Then, we waited.  And waited.  And finally the cardiologist came in.  At this clinic, we typically get to see the pulmonologist and cardiologist at the same time, which is nice because I feel like we get at least 2 of his specialist on the same page.  Funnily enough, it seems as though most times we meet like that, they blame the other specialty departments for his lack of real improvement.  For example, last time it was, "I'm so surprised he still needs the oxygen, it must be his reflux.  We'll have to talk to GI about this and change up the meds.  Oh, and let's start adding pediasure to get him to gain weight."

This time, the cardiologist came in solo, but we were happy to see her (well, I was because Ryan was fast asleep on my lap by that point) because it was one of the doctors that knows Ryan well.  She went over the results from the echo that morning, and GREAT news, the pressures in his heart are unreadable again!  So, last time they were high enough to read at 30, which was a mild amount of pressure, and now it's so mild that it's not readable.  This happened last year right around this time, and then he got sick with RSV and he had a bad sedation and we went back to square one with the PPHN. So, we are keeping him on the meds through the flu season even though his PPHN seems to be much better, just to give him a little extra protection in case he gets sick again.  We will also get the synagis shot for RSV as soon as it's available, which should be early Nov.

Then she left and we waited some more for the pulmonologist.  Finally, I looked at my phone and realized we had been at appointments for 2.5 hours.  I told myself if he wasn't seen by 10:30, we were leaving.  I know that sounds all rebellious, but honestly, I wasn't trying to be a rebel...I just couldn't take it anymore.  The entire time we were in there I could still hear the sick kids coughing all around us and I didn't want him to be there anymore.  I peeked out the door to let a nurse know we had to leave, and there was no one in the hallway, so then I started to think maybe we had been forgotten!  So, we walked out.  I stopped out front at the checkin desk to let them know I was leaving and I told them I'd make a new appointment when I got home, which I did. I made sure to make it for a date when the synagis shot would be ready for him so we wouldn't have to come back twice, and I made it for the Newport Beach satellite office because it's much smaller and typically less crowded, and it seems like there's less chance of him contracting an illness in that environment.  Call me paranoid, I don't really care :)

Then today at lunch today the nurse who would've checked us out yesterday called me to let me know she had scheduled Ryan for a new PPHN appointment on December 23rd.  I told her, and these were my exact words, "You can set the appointment, but I can't guarantee I'll bring him in.  I was already hearing so many sick kids coughing over there yesterday, and I'll be damned if I'm going to bring him into an appointment just to have him catch something at the hospital!"  She said she understood, lol.  So most likely I'll just keep scheduling the appointments in NB for one month apart where we can meet with the pulmonologist and get his synagis shot within the correct 30 day time frame, and avoid the big hospital altogether.

The only problem is going to be his therapy sessions.  After December 31st, our insurance will cover 20 sessions again, and we have to use those up before the regional center can cover the in home therapy that we are receiving right now.  Which means...right smack dab in the middle of flu season we'll have to bring him back to CHOC 4 times a week for 5 weeks to meet with therapists who haven't seen him in a year before we can go back to having the therapists who know him and his goals so well work with him in our home.  Just one more of those frustrating hoops we have to jump through unless I can figure out a way around it.

We have a new home nurse starting tomorrow, but she can only work 3 days a week, so the nursing company is going to continue the search for someone full time to replace the nurse who is leaving us, and who has been with us since April.  It really is hard to lose a good nurse because she's like a member of the family, spending every day at home with us caring for our son.  Tomorrow we have our EDAC appointment, which they do every 6-8 months or so to check his development after release from the NICU.  Should be interesting to see how much he has grown and developed since his last appointment in January!

Please pray that he continues to grow and thrive as well as he has these last few months.  Every day that goes by as we head into flu season, I say a thankful prayer that he stays healthy and avoids getting sick.  He's been gaining weight well (he weighs 18 pounds 13 oz now thanks to the blenderized diet!) and that will help, but we'd love to avoid any and all illness if possible.  Thank you!!

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Tuesday, September 17, 2013

Trying to Keep Up

I just got finished rocking Ryan to sleep, and I was feeling nostalgic thinking back to the days when he was still in the NICU and I would update his blog every single night.  While I do feel guilty for not keeping up with the blog as much as I did back then, I know it's for good reason.  Now that all four members of our family are home under one roof, there just isn't enough time in the day!!  I was inspired by a conversation with a friend tonight to update, though.  Even though I don't update frequently, I can still see through the blog stats that we get a lot of hits here each day.  My friend reminded me that people who are in a similar situation want to find hope and information, and most times they turn to the internet.  For moms with preemies with special needs, many of their searches lead them here.  Let's face it, Ryan has a lot of searchable tag words associated with him.  Preemie, pulmonary hypertension, chronic lung disease, hard of hearing/deaf, visually impaired, oxygen, gtube, blenderized diet, the list could go on.  So, as much as I feel like I don't have the time, I need to be better about updating because I know there are people out there who have kids with one or more of the same issues and just want to know how Ryan is doing.

Lungs/Heart:  Nothing new to report here.  He's still on 3/4 liter of oxygen 24/7.  He's still on nebulizer treatments twice a day, aldactazide diuretics to keep fluid out of his lungs, and sildenafil for his pulmonary hypertension.  We have a pulmonary hypertension clinic coming up next week where he will meet with his pulmonologist and cardiologist and have an echo to check the status of his PPHN.  His sats have been a bit better than usual lately, which is excellent timing as we turn that corner into flu season.  We are hoping and praying so hard that we can keep our home as germ free as possible this winter so he doesn't wind up back in the hospital.  This is quite a feat with a 3 year old in preschool and two elementary school teachers surrounded by kids all day.  We haven't had to go on full on lock down quite yet, so we've been getting out of the house as much as possible on the weekends while we still have the freedom to do so.

GI:  He is still throwing up occasionally.  Not quite daily, but probably 4-5 times a week.  It's totally random and we have no idea when it will happen, but he is still on the omeprazole for that and it seems to be helping more than the prevacid was.  The blenderized diet seems to help, least with the weight gain part.  I think the thickness of his blends does help him keep more of it down, so sometimes when he throws up it's just a tiny amount.  The whole thing is so baffling to me.  We all have our theories...maybe we shouldn't give him blend that is made the day before.  Maybe we moved him too soon after his feed.  Maybe he needs to be vented more, maybe less?  Who knows.  It's so random.  My latest theory is that he is just finally learning how to burp, so when he burps or coughs it triggers his gag reflex and he throws up because he just doesn't realize he doesn't actually HAVE to throw up!  Hopefully he will grow out of it soon, which, on the bright side, he is gaining weight.  It's a slow process, but at least the weight curve is moving in the right direction compared to what it was doing when he was just on the formula.

Eyes/hearing:  His vision is still one of his biggest blessings.  He definitely sees things.  He wears his contact lenses every day, and we still with the occasional lens popping out and panic on all fours as we try to recover it without losing our sanity.  His hearing aids are not quite as successful.  We had our follow up appointment last week, and we basically told her we aren't noticing a lick of difference.  He had them set at a really high amplification, and he didn't react to sound any differently than he did before.  Meaning, he doesn't react to sound at all, period.  It's actually a blessing in disguise because if it seemed like he could hear something, it might make the choice more difficult to go ahead with the cochlear implants.  Now there's no question that this is the way he is destined to hear.  So, I need to call House Institute this week and see if they would consider forgoing the rest of the hearing aid trial since it's pretty evident they aren't doing anything so we can get the ball rolling even sooner on the cochlear implants.  We are still working on adding new signs to our vocabulary as often as possible.  Ryan hasn't seemed to pick up any of our signs yet, but he does love to hit his mouth with his fist, which I'm going to go ahead and say is him just signing "mom" in his rudimentary way :)

Development:  Ryan still gets 4 hours of therapy a week.  He is showing some slow improvement, but he is still very developmentally delayed.  He had his latest IFSP meeting in August, and in most areas he scored at the level of a 4 month old.  With him being 18 months actual, 15 months adjusted, you can see how that is a pretty significant delay.  But, we've set new goals for him based on that information, and he definitely seems to get stronger and stronger every day.

General:  Life has been pretty crazy since we started back up to school this month.  My mom still comes to take care of Dani and help the nurse with Ryan while I'm teaching, and the nurse still comes to help with Ryan 5 days a week, 8 hours a day.  We are so, so sad to be losing the amazing nurse we've had with us since April because she is moving out of state.  She is going to be very difficult to replace.  Other than that, we have been busy with school, Spray Pal, Dani's back to school night and many other activities, in addition to trying to keep up with all of Ryan's home exercises for his therapies, etc.  I'm surviving off less sleep than I ever imagined possible (says the girl who's eyes are half closed while typing who normally needs 8 hours of sleep to function properly).  Coffee has definitely become a staple around these parts.  Thank God for all the blessings (like coffee, for example) that make this crazy, but wonderful, life possible!  And thank you all for keeping Ryan and our family in your prayers.  He's come a long way but still has a long way to go, and I know all of our prayers are being answered daily as we watch Ryan grow!

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Wednesday, August 28, 2013

Hearing Aids

So, Ryan has been wearing his hearing aids for almost a week now, and I figure it's time to update since I'm sure you all are wondering if we are seeing any improvements.  Well, there's good news and bad news.  Bad news first:  they don't really seem to be doing anything.  But, I got that out of the way first because the GOOD news is that it really isn't shocking and it actually makes the choice to move forward with Cochlear Implants even easier!  The audiologist warned us that he probably wouldn't hear anything with them, even though they are turned up to the highest setting.  It means that his ears just don't have the ability to process sound.  So the next question is, will his brain have the ability to process sound?  The Cochlear Implants will basically bypass the ear and bring sound straight to the brain.  This was the whole reason I wanted to see a neurologist before we went down this road, and the fact that she was super optimistic about all of his behaviors while lacking the sense of sound is very encouraging. I told the audiologist how hopeful the neurologist was about the CIs, and she said that's great news.  Of course we won't know for sure what will happen until we actually try them out, but we are very encouraged that he will be a candidate since the hearing aids don't work and his ear anatomy is normal.

I have been reading up a lot of Deaf culture and the Deaf community, and I am very aware that there is a bit of a stigma associated with having a Cochlear Implant.  Some people may question our choice to have Ryan get them, but this is our reasoning.  1) He is a perfect candidate.  If there was anyone telling me that we could go through with this and it might not even help at all, I'd definitely reconsider.  But in doing our research and talking to as many medical professionals as possible, everyone seems to agree that he has a very good chance of hearing with the implants.  2) He is starting out young.  The best success rates for hearing and oral language seem to be with either post lingual adults who lose their hearing later in life after they have already acquired language and children who never had hearing or language and get the implants early on.  Ryan fits into the latter, and that is a huge advantage for him.  So, as long as his overall health permits it, we'll move forward the sooner the better.  But we're definitely keeping his lungs and heart at the forefront of our priorities, so if the doctors don't think he can handle that major of a surgery, we'll wait until he can.

We've also been asked if we are going to teach Ryan sign language, and the answer is yes.  Some institutes that provide therapies for CI recipients I've read will discourage their patients from learning ASL because they want them to focus on the oral speaking.  We are not of this mindset.  We taught Dani baby sign language from early on even though she is hearing because it's just another way to communicate your wants and needs.  We want to encourage Ryan to communicate in any way possible, and I don't think that learning ASL will prevent him from speaking orally.  Of course, there is still a ton of research to be done on our parts, but for now the plan is to finish up the 6 months hearing aid trial, start the road to CIs, and continue to teach and learn ASL along the way.

Thank you so much for your prayers and good thoughts as we continue along this journey!

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Wednesday, August 21, 2013

Overdue update!

It's been a while since I've updated, and I love that people are so kind they actually ask questions like "How is the blenderized diet going?" when they ask about Ryan.  You guys are so awesome for still following along over here!  Big thanks to Michelle for inspiring this long overdue update tonight. ;)

GI/dietician:  We had our first meeting with the dietician around 2 weeks ago.  You may recall that this was about a month after we had already switched Ryan over to a blenderized diet, so we weren't sure how the appointment would go.  We were so pleased to find that she was completely on board with him getting real food through his tube, and she was impressed with all the research I had done to get him started.  Huge thanks to and the Blenderized Food for Tubies Facebook page for all the helpful information! 

She went over all the foods I typically put in his blends, and we discovered that I was giving him a bit more protein than he needed in a day.  Well, really, I was giving him WAY too much protein, which probably explained why his stools were a bit on the hard side (sorry, TMI).  He has been completely regular since the day we switched, but he definitely has those days were he's really pushing to get things going.  So, she gave us some suggestions for adjustments to make to cut back on some of the protein and add some extra fiber to make his stools softer.  We're still playing around with his recipes, but for the most part I think we have it down to what is going to work.  The main thing is, we want him to gain weight.  Dave suggested adding sugar (because, well, duh...who doesn't gain weight when eating lots of sugar) and she recommended using maple syrup!  In the two weeks since we met with her, he's already up over a pound!  We weighed him tonight and he's 18lbs 8oz, so he's finally back on an upward slope for his weight gain :)

Something else I found interesting was the number of calories they want him getting each day.  When he was on formula, he was getting just under 900 calories a day, and then when she added up the calories of these blends, they were between 1500-1800 and he still wasn't gaining weight, just maintaining.  She wanted to keep his blends in that calorie range, and just swap out some of the protein for carbs, sugars, and fiber.  So my one year old is eating the same number of calories as many adults!  The reason we came up with is because it's so much work for his body just to breathe, he's actually burning a lot more calories than most babies just working those lungs.  Plus he has all his therapy sessions and he's getting more active rolling around on the floor, so he needs a lot of extra calories just to keep the weight on.  I'm so glad we switched because giving him this many calories a day from just formula or pediasure would've been pretty crazy!

In other news, Ryan is getting so social and funny :)  He loves to be held and he has the cutest belly laugh when he really gets giggling about something.  We have our hearing aid fitting on Friday, so it will be exciting to see how he reacts to those.  He is still desatting to the low 90s/high 80s if his prongs come out, so no new news as far as getting the oxygen off any time soon, but the weight gain should hopefully help a lot! 

I'm sure I'm missing a lot, he amazes and impresses me every day with all he is doing.  Oh, we had his IFSP last week (for all you teachers out there, that's like an IEP for a child who is too young to be in school yet), and the Regional Center is going to continue providing all of his current therapy services at 4 hours per week.  We were hoping for an increase to 5 to have an extra hour with OT to work on oral motor skills, but they felt that we could just play with his schedule and use his Speech Therapist for fewer hours and switch her hours with extra OT hours.  The problem is, we love his ST because she is fluent in ASL and she does a lot of great work with him.  So, we'll probably just stick with what we have now.

Thanks for the constant love and support you send our way.  Even when the blog is quiet for a stretch, we are still constantly feeling blessed by all of you for thinking of our little man.

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Saturday, August 3, 2013

A Minor Procedure

Some of you who are friends with me on Facebook or follow Spray Pal on Instagram may have noticed that I posted a few pictures from a little procedure Ryan had to have yesterday.  I didn't talk too much about it because it wasn't anything crazy, and I didn't want to make a big deal.  Basically, he had a tiny abscess which first appeared around 2 months ago after he first had his constipation troubles.  He had an ultrasound to confirm that it was an abscess, then we saw our peds surgeon, Dr. Lam.  I may have updated about this back then, but he told us to take antibiotics, see if it resolves, and then call him to schedule this procedure to close it up if it comes back.  Well, it did resolve, and then he got constipated again, and then it came back. :(  So he had to go back on antibiotics, wait for it to heal, and then we'd schedule the procedure.  Well, it was back and forth like this for some time before he finally decided to just take care of it without any more antibiotics.  What happened was a little track formed while he was pushing and straining, and the bacteria from the bowels gets trapped in the track and causes it to have a little pocket of hard infected stuff like pus that won't quite heal on its own.  Some get large enough that they make their way to the surface and resolve on their own, but his never did.  So Dr. Lam went in and cauterized the lining of the track so that the walls could close up and heal back together and keep out the bacteria.  It literally took 2 minutes, and they didn't even need to put an IV in him, which I was thrilled about.  They did put him under anesthesia, but just the gas, so he woke up fine and you really couldn't even tell he'd been through anything!  I honestly can't even see the hole where he must have gone in from, he just looks completely healed.

TMI WARNING:  So, speaking of his constipation issues...seriously happy to report that since we have started with 100% blended food diet, he has not missed a day!  This kid is so regular now, he's actually pooping MORE than we ever imagined would be possible!  Our job after this procedure was to just make sure we kept his bum clean and give him a quick back or water rinse after any bowel movements.  They actually gave me this turkey baster tool (mental note: remove from kitchen when finished using) to use to squirt water on his bottom after he poops.  Well, since we've been home, we must have used that thing at least 10 times.  It was getting to the point yesterday where every diaper change had poop in it!  We are so excited that his new diet is really helping out in that department.

Overall, we are completely pleased that we took the plunge and switched over to the blenderized diet.  His sats are still doing relatively well, as I mentioned above, he is well beyond regular now, and his reflux definitely seems to be improving.  He still throws up, so we aren't completely out of the woods, but most of the times he does throw up it seems like it's just due to his gag reflex.  Like tonight I decided to let him try a few tiny bites of some softened cheese, and he didn't quite chew it enough before he let it go down his throat, so he started coughing and gagging and then he threw up and out came the chunk of cheese with the tail end of his last meal.  We can pretty well say that it wasn't reflux related, but rather reflex related.  Hopefully he'll start to get the hang of the whole chew, swallow, don't throw up routine soon so we can get him those calories orally and get him off the gtube, but it's definitely going to be a long road.

Hearing:  We had an appointment this week with Providence Hearing Center so we could purchase Ryan's hearing aids and get started on the 6 month trial.  Basically, she told us that based on his hearing tests, it's pretty unlikely that the hearing aids will work for him.  There's a chance he could pick up some really loud noises with them, but it wouldn't likely be enough to help him hear or speak normally.  I know it seems strange to even bother with them with that being the case, but it's part of the process before you get a CI (Cochlear Implant).  The reasoning is that the CI procedure it permanent, so it destroys any chance you'd have of hearing naturally.  So, if the testing happened to be wrong (which is pretty rare) or by some miracle he can actually hear ok with the hearing aids, it's better to find out sooner rather than later.  If he doesn't show a big enough improvement with the hearing aids, then we can move forward with CIs at that time.  Ryan got fitted for his cool new zebra print hearing aid, and we will pick them up and get them started on August 23rd. :)

Thanks for continuing to check in on our little guy.  Here's hoping we have even more encouraging things to update in the coming weeks.  Prayers for strength, good eating, good weight gain, and good hearing are greatly appreciated!

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Thursday, July 25, 2013

Our Journey with the Blenderized Diet Begins.

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

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

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

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

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

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

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

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

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

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A Few Appointments to Update.

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

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

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

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Saturday, July 13, 2013

Reflux Update

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

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

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Neurology Update

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

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

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

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

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

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

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

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

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

Walking around Fashion Island:

Backyard campfire:

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

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Tuesday, July 2, 2013

Ryan's First Unbirthday!

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

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

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

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

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

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

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

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

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

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Thursday, June 20, 2013


Today marks the official beginning of summer for us!  I know the actual season doesn't begin until tomorrow or the next day, but it's summer in this house full of teachers!  We celebrated tonight by grilling steaks and eating dinner in the living room so we could watch a movie and stay up a little later than usual.  Dani has figured out with my part time schedule, she can ask me at night before bath and bed, "Are you working tomorrow?" and if I say yes, she resigns to her regular bathtime schedule.  But if I say no, she says, "Can I just take a shower with you in the morning?"  So we have around 2 months of easy nights and showers in the morning.

Ryan had some visitors from the local school district today.  The deaf/hard of hearing teacher and district coordinator came by to meet him and see if they could provide any services for him.  We are really lucky to live in a district that has these services available.  I really like that she is pro-ASL and will incorporate sign language into her sessions if the parents request it.  We talked about where we are in the process for CIs for Ryan, and they were really glad that we are going to try out the hearing aids first.  It's hard to have any hope for them helping him since he is profoundly deaf in both ears, but if there's a chance they can work, you definitely want to know that before you pursue cochlear implants.  We also discussed the neurological portion of it, and they basically said we are doing everything right by seeking the opinion of a neurologist while still moving forward with all of his hearing issues.  It's really unsettling for me not to know what's going on.  I know we may never know what CAUSED his hearing loss specifically if it is sensorineural, and I'm fine with that.  I just want to be sure it IS sensorineural and not auditory neuropathy. 

I actually called the neurologist last week to get us on a list to be seen sooner if there's a cancellation.  Otherwise, we will be visiting her on July 9th.  After a well-visit a week ago where our pediatrician gave me a copy of the MRI report of his brain, I spent a lot of time googling words like brachycephaly (this one just means he has a flat head.  Wish they could've just written that!), ventriculomegaly (this is excess fluid in the ventricles, which the ENT had told me over the phone, and which we already know about because it corresponds with his mild hydrocephalus), thinning of the corpus callosum (not good, do not google), and hypomyelination (also not good, again, do not google).  Now you can see why I am a bit anxious for his neurology appointment.  Obviously I have lots of questions.  More prayers in this direction would be greatly appreciated.

Despite all of these new and slightly terrifying findings, Ryan has been interacting with us more and more!  He is finally starting to look at our faces, he's smiling more readily and laughing heartily.  He's getting better at holding his weight up and not arching every second.  He reaches his arms and legs out excitedly when he knows he's about to get picked up, and when I pick him up and lift him to my shoulder, he reaches both arms around my neck and squeezes me.  He will then trace down my arms until he grabs hold of my elbows and then he'll just hold tight for a while.  It's the sweetest thing. 

Tomorrow he has an echo to check his heart for pulmonary hypertension, and then we'll have a visit with his cardiologist and pulmonologist on Monday to go over everything.  At our last appointment, they had mentioned possibly starting to wean him of oxygen by this appointment.  I'm not quite sure he's ready yet because he still drops his sats if he gets his cannula prongs worked out of his nose while he's sleeping.  They typically don't go lower than 89/90, but it's still low enough to show he needs that extra support still.  Hopefully the echo will at least show that his pulmonary hypertension is improving if not resolved, and we can wean down on some of his meds.  Any other great news on top of that would just be icing on the cake, but of course we'll take it! 

Thank you for continuing to keep Ryan in your prayers.  His constant drive to fight is such a blessing and I know all of your prayers are holding him up and pushing him to improve.
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Saturday, June 15, 2013

Big Sister Update

Dani had a pretty big milestone today, and Dave and I were just talking about how cute it was, so I wanted to get it down in writing so we can remind her of this day someday when she's older.  She remembered her first dream!  If you've seen this girl's bed head, you know she must have lots of dreams when she sleeps, but whenever I asked her about them, she didn't seem to really understand the concept of dream vs. reality.

This morning she woke up in a particularly cheerful mood.  When I walked into her room, we had our normal good mornings and discussed what she'd like for breakfast.  As she was climbing out of her bed she said, "Mommy, do you want to see my special dollhouse?!"  She was so excited, so of course I joined in her enthusiasm and said, "Sure!" thinking she was going to take me out and show me one of her regular dollhouses in the living room.  Instead, she brought me to our sliding door that leads to the backyard and said, "It's outside!  It has lots of slides.  Hey, where is it?"  She put her face to the glass and searched the yard, bewildered.  I asked her if it was just a dream and she said, "Oh.  Yeah." and walked into the kitchen for breakfast.

I don't know why this struck me as so adorable, probably her face when it lit up as she remembered the special dollhouse she had dreamed up.  In a way, I was glad she didn't get upset or hurt when she realized it WAS just a dream.  She just went along with it and carried on with her day.  Hopefully her happy dreams and special dollhouses will visit her again tonight. :)

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Wednesday, June 12, 2013

House Institute

Today we had our first visit with Dr. Luxford at the House Institute.  I was really pleased with the outcome, and I'll try to summarize as best I can.  Sometimes I feel like I should bring a tape recorder to these big appointments so I can remember everything!

We went to House because they came highly recommended, and when we made the appointment we asked for the doctor with the most experience with children.  They recommended Dr. Luxford, and so far he seems great.  Today was just the initial consultation in their Orange County clinic.  Everything else will have to be done up at their main office in LA.  They have a children's center up there, and our next appointment will be there.  In the meantime, all of Ryan's testing up until this point will be sent to him there for review.

Here's what I gathered from our meeting.  They highly recommend trying out hearing aids first to see if they help at all.  Once you do a cochlear implant, there's no going back.  Any chance of hearing will be destroyed by the surgery, and there's always the chance that the ABR that showed him to be profoundly deaf could've had a false read.  With older patients, they'll do behavioral tests to see if they respond to any sound at all, but at Ryan's age, he wouldn't be able to do them.  So, from what I understand, we'll likely get him fitted for some hearing aids to use on a trial basis and see if they make any difference.  If they don't work, then we will move on to cochlear implants.  We will start with one ear, and monitor for up to a year to see if it's helping.  He was one of the doctors who likes to give you the worst possible outcome and then if something better happens, we can celebrate instead of giving us hope and then having to disappoint us if it doesn't work out.  I'm used to that from the NICU days, so I'm still very hopeful that the implants will help, but I understand why he doesn't want to get our hope up yet.  We will just have to wait and see and continue to pray our hearts out that Ryan can have some hearing.

Dr. Luxford asked us a lot of questions about Ryan's history, and was very good about acknowledging the need to hold off and make sure his overall health is stable enough before such a long surgery.  He would need to be sedated for over 2 hours, so he would want to make sure everything was cleared by cardiology and pulmonary.  I will definitely ask about it next week when we have our Pulmonary Hypertension Clinic appointment.  He made it sound like as long as everything checked out, we could be looking at possible surgery within the next 6 months, so we'll see.

I know this shouldn't be the most exciting part...but, it sort of is pretty darn exciting.  We were under the impression that since anything related to hearing was part of an exclusion on our insurance, we would have to pay for everything out of pocket.  This was pretty crazy considering a cochlear implant can cost upwards of $30K from my understanding.  Well, we found out today that insurance typically DOES cover CI surgery!!  I was very clear in questioning that because I really thought it was excluded because it's related to hearing, and he said, "No, because it's a surgical procedure, it should be covered.  And if they denied you for some reason, it would be a very easy appeal.  The only thing they don't cover typically is hearing aids."  So, the hearing aids will be loaned to us (I think) on a trial basis so we can see if they even work before we invest in those.  What an amazing blessing and stress-reliever it was to hear that news!  Of course, part of me is still worried that the bill will just show up in the mail because we've dealt with our share of insurance snafus, but he was pretty convincing that it should be covered!

Thank you all for the kind words, happy thoughts, and prayers you sent Ryan today.  We will continue to update as we learn more about all of this.  In the meantime, we have his 15 month well visit tomorrow, and we're hoping he has gained some weight so we can cut back a bit on the formula.  Prayers in that direction would be greatly appreciated!

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Monday, June 10, 2013

California Deaf-Blind Services

So last week we had a lovely visit from two very nice lady's from the California Deaf Blind Services.  They met Ryan and stayed to watch and learn about him, in addition to talking with a few of the therapists who work with Ryan.  They try to come up with recommendations for everyone to help Ryan understand his world and adapt to living with fewer senses available to him.  They stayed for 2 hours and gave us some really great ideas that I'll try to summarize here in case anyone else is looking for ideas for their own kids:

1. Introduce toys or objects made from different materials so he has a more diverse tactile experience, for example, wood, metal (e.g., mixing metal bowl), or a soft brush.

2. Include activities that encourage face-to-face interaction in every work session. Following is an article, “Early Interactions with Children Who are Deaf-Blind,” that expands on this recommendation. It also includes other strategies that may be useful for Ryan:
3. Include “infant massage” in Ryan’s routine. This may help with his need for proprioceptive stimulation and may encourage a deeper connection between his parents and him. CDBS published an article on this topic, “Infant Massage for Babies with Sensory Impairments,” which can be found at

4. Redirect Ryan’s attention to another activity when he is softly hitting his chin or his head. If this action increases when he needs to sit for a long time, such as at feeding time, have an exercise session with him beforehand so he can release any extra energy and be a little more relaxed when he is sitting down.

There were a few other suggestions that were more specific to Ryan, but I felt like these 4 could be helpful to anyone else out there looking for more information on working with deaf/blind children.  I will proudly add that they were very impressed with how well he was reaching out for objects, grabbing things with both hand, and bringing them to mid-line.  They also commented on how active he is, always rolling around, grabbing his feet, even doing his bridges (he loves to arch his back and get up on his head and tippy toes in the bridge position).  The best part was when I picked him up and put him in my lap, he turned right away and looked up at me like he knew exactly who I was.  They noticed that right away and said, "Oh look, he recognizes his mommy!"  I know that seems strange to be excited about.  With a full term baby, that sort of behavior would be a given by now.  But with Ryan, it was a huge milestone.  I really feel like the past week or so he's been started to look more at my face and realize that I'm someone different than everyone else.  He is also getting really good at snuggling and cuddling.  He'll reach his hands out when he knows he's about to get picked up, and then when I get him up on my shoulder he will put both his arms around me and rub my arm.  Such a huge improvement from when he used to just arch his back and try to wriggle away from anyone who tried to hold him. 

We discussed how hard it was for the first few months after he was home.  We really felt like we were walking on eggshells with Ryan.  He spent so much time in his chair getting his feeds, and his reflux was so bad we had to leave him sitting upright for another 30 minutes after the feed was over.  Then it seemed like any time we moved him he would throw up from the reflux.  So, unfortunately, he spent a lot of time in his various seats or on his back.  I know looking back, we really couldn't have done it any differently because he was so medically fragile back then.  Now that flu season is over and his reflux has improved, we are able to do so much more with him.  We've been taking him out every day of every weekend and are really looking forward to summer when we can do it daily.  You can tell that getting out of the house and being more active has helped him improve immensely.  We still have a long road of development to go down, but we are very hopeful for our little man. 

We also have the House Institute appointment set for this week on Wednesday.  This will be the initial consultation with the doctor who will hopefully do the procedure for the Cochlear Implant.  I had a great conversation over the phone with a really kind and helpful friend of a friend who also has a son who wears CIs.  She gave me some really great advice and helped me create a list of questions to bring in to the first appointment.  I'm really looking forward to finding out more, and I'll update as soon as I can.  Any prayers for a good appointment would be greatly appreciated!

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