Eye Follow-up and Hearing Test.

It's another crazy week in the Aprea household.  Definitely doesn't help that the night before I needed to take Ryan to 3 back to back appointments I came down with strep throat.  Worst. Timing. Ever.  So this morning, Dave had to rush to work to make sub plans and take the day off so he could go with the nurse to the appointments and I could go to my doctor for an antibiotic.  Now here I am, sitting all alone in a quiet house for the first time in, well, probably since I was on bed rest before Ryan was born.  Wait, no, I think it was when I had mastitis over the summer and Dave went to the NICU so I could sleep at home.  Yup, pretty sure that was it.  Sure would be nice to have a quiet day at home WITHOUT the medical reason!  Soon enough, and I really can't complain.  I love my full house. ;)

So, time to update.  We'll start with the good news:

Ryan went to follow-up with Dr. Reiser after the eye surgery.  She was very pleased with how things looked.  Dave took him to that appointment, so that's about the extend of the detail I got out of him.  ;)  We will get to stop one of the eye drops after a few more days, and then taper down the last one over the next 4 weeks or so.  We have an appointment with the contact lens guru next Friday in Arcadia, so hopefully she can get him set up with some contacts and it won't be too crazy for us to try to put them in!

Now the other news (never say bad, right?):

Ryan had his second hearing screen today since he failed in both ears the first time they tested him before discharge in the NICU.  Well, unfortunately, he failed in both ears again today.  It kinda breaks my heart a little that he can't hear me when I'm talking to him, reading him books, singing to him, etc.  But, I'm going to focus on the bright side.  He has yet to be awoken by a certain toddler sister who insists on running up to him while he's sleeping and shouting, "WAKE UP!!"  That's a good thing, right?  We're going to continue the prayers for a resolution to this.  He will have another test done in 2 weeks where they will place nodes on his head to test his brain's reaction to sound.  It's a 2.5 hour test and we're supposed to try to get him to sleep through it.  At 9:30am.  Should be interesting. :)

That's all I know so far as Dave is still with him at CHOC doing his developmental (physical) evaluation.  After that, he'll head over to Fountain Valley to meet with his GI doctor and set up a date to get the g-tube switched out for a Mic-key button.  Supposedly that will make feeding him through the tube even easier for us.  I'll let you know how it goes.  Thank you for the continued prayers.  To make it easier, I'm going to end with a list.  I hope you don't mind.

Prayer requests:
- Lord, we are so thankful for all you have done for Ryan's eyes (along with everything else, of course).  We pray that his vision continues to improve and he regains sight so he can see all Your beautiful creations.
- We pray that You help the doctors figure out what's going on with his hearing and find a way to make him hear.
- Please protect everyone else, especially Ryan and Dani, from this nasty strep virus and help me to heal quickly.

Thank you all.

That's WONDERFUL!

My facebook friends will understand the title reference, I'm just so excited to share the good news of today because as Dani would say, it's WONDERFUL!  We had our pulmonary hypertension clinic appointment this morning, and we really couldn't have asked for a better report.  Basically, from what I gather after one visit to this clinic, it's just a time for the cardiologists and the pulmonologists to hang out in the clinic together and see patients at the same time since PPHN deals with both the heart and the lungs.

Dr. Doshi, the cardiologist, came in to meet with us first.  She remembered Ryan from his extended stay in the NICU, and I had actually just spoken to her about 1.5 weeks ago when we ran out of the sildenafil medication and I was worried he was having withdrawals (Yes, call me a paranoid preemie mom.  I'm pretty sure I posted a blog about this, if not, just ask me.  It's a long story.)  Anywho, she knew who we were and was really excited to see Ryan.  She had gone over his most recent echo, and she was pleased with what she saw.  So, she said we could discontinue the sildenafil!!  Now, it was really hard not to get annoyed by the fact that I had called them when he first ran out of the med because insurance wasn't going to cover it for 3 more days and he was on such a small dose with no real evidence of PPHN in his last 3 echocardiograms so did he really need to be on it?  Really?  (Forgive the run-on.  I can't help it.).  But I'm not going to get annoyed.  Nope.  I'm going to be ECSTATIC that he's off one more of his meds and showing signs of getting healthier and stronger.  Because yes, I may have refilled that med only to be used in a tiny ineffective way for 1.5 weeks before they nixed it, but in the grand scheme of things, that just really doesn't matter.  Also, the medical people out there (or those who remember me telling you the brand name of sildenafil) might get this:  Dave was talking about what we should do with all the leftovers and says it should not go to waste.  It's a suspension med for babies, so we'll see how that goes. What's he going to do, drink it? ;)

Dr. Nickerson, the pulmonologist, came to see him next.  He was also very pleased with Ryan's progress.  He said that at our last visit the doctor had noted a crackling sound in Ryan's lungs, but today he sounded totally clear!  He was really impressed with how well he handled the anesthesia for his eye surgery last week.  He told us to discontinue one of the nebulizer meds and just use it as needed if Ryan gets sick. When I mentioned that he coughs like an 80 year old smoker in the mornings, he said we should keep the nebulizer for mornings when he wakes up to help loosen and clear out that phlegm.  I asked about weaning down his oxygen because he's been satting 99-100 constantly on 3/4 liters flow, and he said his style is more to just go from having oxygen to not having oxygen anymore, but with the flu/RSV season starting up and everything, Ryan would be better off with oxygen support to get him through it.  He said that there's not a whole lot of difference between 3/4 liters and the smaller fraction amounts, and I said it does make a difference for us because we're going through the oxygen tanks pretty quickly at our house.  So he said he was fine with weaning him down to 1/2 a liter!  It was so non-chalant like it was no big deal.  Dave was saying weeks ago we should just put him down to 1/2 and no one would know the difference, and I was like, "OMG, you can't just CHANGE his settings like that!"  But, I guess I was wrong! Haha. 

So, lots of positive changes today!  The greatest part was coming home and changing his meds schedule in my binder.  The one on the right is the one we've been using for the last month, and the one on the left shows the new schedule after today's changes.  SOOO much easier!!



We are really feeling so blessed with all this good news.  The power of prayer has been so strong and we appreciate all of your prayers and good thoughts.  In addition to all of this WONDERFUL news, we're also noticing Ryan starting to look at his light up toys more!  We have a follow up eye appointment tomorrow, so hopefully the good news trend will continue!  So proud of our little fighter.

So thankful.

I don't even know where to begin other than to say we are just so thankful.  It's like God gives me these constant reminders that we have a 25 week miracle so I never forget how lucky we really are.  After having a full-term, healthy baby, you really take the statistics for granted.  I still look over preemie books and websites and my jaw drops when I read some of the stats.  We are so, so lucky.  I've always given thanks on this holiday, but really the level of gratitude I have for my family will never be the same.  I'm also thankful for the flu shot, the synagis (RSV) shot, and hand sanitizer!

Every year, my family heads to my Aunt and Uncle's house in Santa Monica for Thanksgiving.  We knew we wanted to bring Ryan this year, so we took lots of precautions and hand sanitizer and made our way out as a family of four.  It was the first time most of my extended family was able to meet him, and we were all so glad we went.  It's so nice to be able to get out of the house and carry on with some of the normal traditions of the holidays.  We also received a gift for Dani and Ryan from some family friends of my aunt who has been following Ryan's story.  To Eric and Kathy Graves, thank you so much for being so thoughtful!

Today we got out for a walk on the beach and Dave got the Christmas decorations out during Dani's nap.  Ryan has been such a good baby, just eating (we do most of his milk through the tube now, he seems to be losing interest in nursing and bottle feeding, but we'll work on it at OT), playing, and sleeping the day away.  Oh, and the best part is that he seems like he's starting to SEE things again!!  Praise God!  We have this little musical light up toy our friend April got for Ryan, and he used to be able to track it with his eyes before all the surgeries.  Today I tried it with him again and he started to follow it!!  I know it's really soon, and we won't really be able to tell what he can see quite yet, but it sure gives me lots of hope to see that!!

Thank you for continuing with the prayers.  He is getting bigger and stronger day by day and things get just a little bit easier for us.  I know it won't be long before he's running around chasing his big sister through the house!

Lens Removal

Thank you all so much for the love and prayers you were sending this week for Ryan.  The support was definitely felt by us all, and God definitely stepped in and helped see us through.  We are so blessed to have such an amazing group of friends and family.

We got up to CHLA bright and early for the first surgery of the day.  I have to tell you, sitting in the pre-op waiting area of a Children's Hospital is THE most humbling thing you could ever do.  So many tiny miracles in one place, and it's just amazing the things that doctors can do to help these children.  It's really eye opening, and it makes me appreciate our little miracle even more than ever.  I know he's got a lot of things to overcome, but we are truly so blessed that he's here with us and he is fighting to overcome these obstacles every day.

The hardest part of the morning (ever harder than waking up at 3:30am) was definitely when we wheeled Ryan's bed to those double doors and gave him one last kiss before he went into the OR.  It's just heart-wrenching not being able to sit with him and hold his hand through everything.  He's so brave.

The procedure only took about an hour and then Dr. Reiser and Dr. Lee called us in to talk to them.  We were in the same room as last time, when Dr. Lee had to tell us that something had sort of possibly gone wrong with his vitrectomy.  This time, they were much more enthusiastic about the results.  They said everything went really well.  They removed the cataract lens in his right eye along with some extra scar tissue.  She also said that while she was in there she noticed that the inside edge of his pupil had a roughness to it that was keeping it from being able to dilate properly.  Apparently there was scar tissue all around that edge, too, forming a hard, stiff ridge.  So she shaved that down so that his pupil could dilate more easily.  That explained a lot because his eye doctors have always commented on how hard it is to get his eyes dilated!  Hopefully that's just one more step in the right direction for him to be able to see.

Dr. Lee examined his eyes while he was under anesthesia, and he said things look really good.  The scar tissue is minimal in the left eye, and both retinas are still attached.  So, now we just wait and see (no pun intended).  We followed up with Dr. Reiser today, although she wasn't actually there because she got called into jury duty.  It's kinda crazy that surgeons, especially specialist in their field, don't get an excused absence, but I guess if they do it for one they'd have to do it for all.  I'm just so glad she didn't get called in yesterday!!  But another eye doctor checked Ryan's eye and removed the patch, and we'll follow up again with Dr. Reiser next week.  Then, in a few weeks we'll meet with Dr. Uribe to get some contact lenses.  I know it seems odd to have a baby in contacts, and we asked if we could just do glasses, but they prefer contacts for patients with no lens because his prescription would be so thick it would almost be like a magnifying glass on that side of the glasses, and it could actually distort some of the images he sees.  So a contact is more precise for him to see with.  Guess it makes sense, but it will definitely be interesting take them out and put them in each day!

As far as everything else, Ryan was such a champ.  He was able to come off the breathing tube before he even left the OR.  He didn't have any desats or anything, just went right back to breathing on the cannula.  They still wanted to keep him overnight for monitoring because he was a preemie and he's still under 60 weeks, so I guess that is protocol.  We were pretty excited when he was doing so well and they started talking like we might be able to just take him home, but the head anesthesiologist shot us down.  Oh well, at least it was only one night!  And they were able to get us in for the follow up at the vision center earlier than we expected, so we were home by early afternoon.  Not too bad. :)

It's the Craziest Thing.

Somehow the craziest days seem to work out the best for us!  So much great news to share today. :)

First, we had a well check with the pediatrician to get Ryan weighed and get his flu booster shot.  I was a little nervous because the times I had weighed him at home, he seemed like he wasn't gaining much, but hanging steady at right around 13lbs.  So, I kinda stopped checking his weight about a week ago.  We continued our feeding plan (7 times during the day with just plain breastmilk, no more fortifier), and I hoped for the best.  I mean really, the boy does not look like he's starving.  He's got rolls on his rolls.  I figured if he wasn't gaining it was because he was just evening out from gaining so much while on the fortifier.  Well, Ryan went ahead and proved again what a super chunk he is!  He weighed in at 13lb 12oz!  That's almost one pound higher than his last visit when he was 12lb 14oz.  So amazing to think he started out at under 2 pounds!  He handled his flu shot like a champ and just cried for a few seconds before I could get his binky back in his mouth.  I haven't done the whole thankful thing on Facebook, but today I am thankful for Ryan's binky!  He loves that thing.

After that appointment, we drove straight to CHLA for his pre-op check up.  I was told it was an "anesthesia evaluation" and I tried to get his pulmonologist at CHOC to send a medical clearance so we wouldn't have to drive all the way out to LA and back twice this week, but she felt it was necessary for him to go.  So we went.  And it was basically just a check-up almost identical to the one we had at the pediatrician earlier, and they asked me a bunch of questions they had already asked me over the phone on Friday.  Really don't see the point, but thankfully we made it there and back in time for Dani's preschool Thanksgiving Feast.  Otherwise I might have had some words. ;)

In other news, the new home nurse, Eileen, started today, and so far we really like her!  She is great with kids and totally interacted with both Dani and Ryan, which doesn't seem like much to ask of a pediatric nurse but it was above and beyond what our previous nurse would do.  She rode along with us throughout this crazy day of appointments and was really easy to get along with and knew how to work Ryan's equipment.  Today was kind of like a training day since she'll be off the rest of the week, but I'm so glad we're able to have today and Monday to get to know her before I leave Ryan with her on Tuesday and go back to work.  We're praying she works out well because we really like her and the new company she works with.  If you are looking for a home nurse in Southern California, please send me a message so I can let you know our experience with these two very different companies!

The biggest prayers we need tonight are for his eye surgery tomorrow.  I have such a great feeling about this because I just feel like God is watching over us this week and answering our prayers left an right.  We have the first OR slot in the morning, so we have to check in at 5:30am.  So, we're planning on a 4:30am departure tomorrow.  Dani is spending the night with her grandma and papa tonight and tomorrow so that we can leave early tomorrow and then spend the night up there in the hospital with him.  So thankful this is working out so we can have our little family back together in time for Thanksgiving on Thursday. 

Thank you for all the love and prayers.  We're feeling the power of all those positive thoughts more than ever this week!

Echocardiogram 11/16

Love when I get to post good news!!  And with the eye surgery coming up in three days, I'm hoping this is just the beginning of LOTS of great news.  Yesterday we took Ryan in for his echo at CHOC.  The cardiologist wanted to see if it was ok for him to be off the sildenafil and just follow up since we haven't had an appointment with them since discharge.  Ryan was such a trooper.  They had to do an extra long echo since it was his first time in the new office and they want to get a baseline for his whole heart.  I kept asking the tech questions, but as nice as she was, she was a stickler for the rules that the doctors don't want the techs to share too much info.  Mostly I wanted her to show me the septum because they always tell me that the bowed septum is the reason why they say he has the PPHN even though they can't read the pressures.  She did point it out to me when she caught an image of it, but of course it doesn't mean a whole lot to my untrained eye.  I was able to get a little bit of info out of her, though.  She said it didn't look like anything to raise an eyebrow at, which I took as great news! 

We were lucky because the same cardiologist who met with me in the NICU a few weeks ago was in the office and said he would come by to read the echo for us right away so we wouldn't have to wait.  He came in after about 30 minutes of images, and after speaking to the tech he said, "It looks good."  I won't put an exclamation mark there even though to ME that seems exclamatory-worthy, but he's a pretty stoic doc, so that was the way he said it.  "Looks good."  More on that later.

We asked about the med and whether or not he needs to be on the sildenafil still, and the doctor felt like he should stick with it a little longer.  Especially with the surgery coming up, it's just a good safety net for him.  So luckily, we were able to walk over to the CHOC pharmacy and pick that up before heading home.  We also ran into some old hospital friends, which is always nice :)  Crazy that when you're in there that long, you can't go back without bumping into at least a handful of familiar faces.

So, back to the doctor's comment.  Once he stepped out, I really needed to know what "It looks good" meant.  I asked the tech if "good" means things look normal, and she said yes.  So I guess it's safe to say that the PPHN is gone, but MAN I wish these people would get as excited as I feel!  I'd think after all this time worrying about this, they'd be SO excited to tell me it's finally GONE!  But all I get is, "It looks good."  Normal.  Whatever, I'll take it!

We're going to try to enjoy this weekend and maybe even get out of the house for a quick outdoor, non-crowded outing, because Monday will start the week of craziness.  Monday Ryan has a pediatrician check-up with flu booster shot at 8:30am, then we drive up to CHLA for an anesthesia consult, then we're hoping to make it back down here in time for Dani's Thanksgiving Feast at her preschool.  Then Tuesday is the eye surgery.  They reserved us the first slot of the day, and it's still unclear as to whether or not they are going to have him spend the night for monitoring.  I guess we'll just see how things go.  We are so thankful for all of your prayers and positive thoughts.  Your support means so much to our family.

Quick Update.

Echo is still on for 3:30pm tomorrow.  Wish us luck for no more pulmonary hypertension!!  (I miss all the comments I used to be able to see on the carepage, by the way.  I think it's more complicated to leave a comment on this blog.  The only downside so far.). 

Also, we're in the process of trying to get his pulmonologist to sign off on a medical clearance for him to go under anesthesia for the eye surgery on Tuesday.  She finally called back tonight and of course my phone was on silent and we were eating dinner, so I didn't pick up.  She said she would call back tomorrow.  If she faxes that letter for us, it will save us an extra trip out to CHLA for an hour long anesthesia evaluation the day before surgery. 

Finally, we met a new home nurse yesterday and so far we really like her.  She will start with us on Monday so she can get a day or two of training with us while we're home from work before starting up again the week after Thanksgiving.  We're really hopeful that she will be the perfect match for Ryan and our family.

Blood work and meds and appointments, oh my!!

Well, it's been a hectic week, but I wanted to take a minute to update everyone on what's been going on.  On Monday we were lucky we had the day off.  We dropped Dani off at preschool and drove with Ryan up to CHOC to pick up some medicine refills.  I waited in the car with Ryan, and Dave went in to discover that one of the meds, the only one we were actually going to run out of that night, was not filled.  Apparently, pulmonology wouldn't sign off on it because it's considered a cardio med (it's for his pulmonary hypertension, or PPHN), and cardio wouldn't sign off on it because he hasn't been to their clinic as an outpatient.  Which is because he doesn't have any other heart issues other than the PPHN, so they scheduled him to come into the PPHN clinic which only meets once a month.  So he's going on November 26th.  In the meantime, he's out of this med.  CHOC pharmacy was finally able to get it approved by a doctor, but then our insurance wouldn't cover it until Friday.  Do not ask me why.  So they gave us the option of paying full price for 3 days worth and then picking up the rest on Friday.  Normally I would just say fine, let's do it, but this isn't a normal med.  It's super expensive.  So I asked for the cardiologist's number because I wanted to be absolutely sure he need to be on this med.  If you remember from previous posts, Ryan's last THREE echos showed such mild PPHN that the pressures were unreadable.  And, he's on such a LOW dose of the med, it just doesn't seem worth it to pay all this money to fill a month's worth of it if they'll probably just tell me he can come off it at the clinic appointment on the 26th.  So, I left a message with the nurse and she assured me he would call back yesterday.  He did not.  By evening yesterday, Ryan had been off the med almost 24 hours, and he was acting a little bit more fussy than usual.  Of course now I'm freaking out that he's having withdrawals or something.  So, I call the on-call cardiologist.  Actually, I lied.  I called the NICU first because that's always where I call when I don't know who to call, and they gave me the number to the on-call cardiologist.  I love those NICU nurses.  Anyways, the cardiologist called me back and it turned out to be the doctor who had read 2 of Ryan's most recent echocardiograms, so she was familiar with his case.  She had been on vacation for a few weeks and came back to find out that he had been discharged!  She didn't seem concerned about him being off the med, and told me things to watch for like blueness in between his eyebrows or around his mouth, as well as low oxygen sats.  He doesn't have any of those symptoms.  She also said she would make sure Dr. Chang called me today to talk about it.  Again, he did not call.  I called at 4pm and the nurse gave me his direct line, so I got a call back pretty quickly after that.  He said he didn't feel comfortable discontinuing the med without seeing a more recent echo first, which is what I figured he'd say.  So now we are scheduled for an echo on Friday afternoon.  Fingers crossed that it shows that the pulmonary hypertension is gone so we can get off that med and Ryan will be one step closer to healthy!

On Tuesday, I was back at CHOC with Ryan for his first OT (Occupational Therapy) feeding evaluation.  A therapist met with us and talked about our concerns and goals, and did an eval on Ryan.  She found out about his weak suck, which we already knew, and she told me that he has a hypersensitive gag reflex (which we sort of suspected).  This is due to the fact that he was intubated for so long, the large tube caused him to have a very high arch in the roof of his mouth which make it harder for him to fill that space with whatever he's trying to suck on, so he can't get a good seal to draw out milk.  She watched him nurse, and while he does do better with that than a bottle, she could hear the sound he made when he would lose the seal on his latch.  The good news is, even with all he's been through, he still has his suck reflex.  When babies are born, they have a reflex that tells them to suck when you put something in their mouth and it typically goes away by around 6 months.  Even though he's almost 8 months old, he's only 4 months adjusted, so he's still got that reflex.  She wants to work with him twice a week to take advantage of that before he grows out of it, and to hopefully strengthen his suck but weaken his gag reflex.  Hopefully it will help prepare him for starting solid foods in a few more months. 

She also referred us to the Blind Children's Center in Tustin.  They have mommy and me classes for babies with visual impairments, but unfortunately it meets on Tuesday mornings.  But that will be something fun we can do over the summer when I'm not working. 

Other than all that, we're just gearing up for the eye surgery next Tuesday and continuing to meet home nurses until we can find someone who is a good match for our family.  We met one today who will hopefully fit the bill.  I'll update more on the home nursing situation when I have a bit more time.  Thank you all for checking in and keeping Ryan in your prayers. 

Lockdown

We've been home just over 3 weeks now, and I think we're getting a little bit of cabin fever.  Being on lockdown for flu season really does take its toll on preemie families.  We've always been a very active family, getting out of the house on the weekends as often as possible.  It's crazy to think it's been about a year since we've gone camping (My bedrest started on December 6, 2011, so it was sometime before that).  We took Dani on her first camping trip when she was only 2 months old.  I know that there will be a time when we'll finally be able to break out and go places, it's just not that easy right now.  We actually tried to take the kids out for a walk on the beach this morning, but trying to figure out the right time between Ryan's feeding schedule and Dani's nap became too much of a logistical nightmare.  So, I took Dani for a nice, long walk around the neighborhood while Dave mstayed home with Ryan and watched some "guy TV".  It is difficult having to split up and take turns to get out of the house, but we just have to remember it's only temporary.  If any other preemie parents are reading this and have some advice for how you made it through the winter months, please leave a comment!  We'd love ideas.

One thing that helps is letting her help out with dinner.  On Friday we made a bubble up pizza casserole recipe I found on pinterest, and she had a blast! I don't know why we didn't start this sooner. 

Here's Ryan checking out his adorable new puppy toy,  Thanks for all the goodies Kristina, Charles, and Mila!

We're looking forward to having some visitors stop by tomorrow.  Should help get us through one more day of lockdown. :)

Thanks for checking in on us and for the continued prayers for strength, healing and growth.

3rd eye surgery

We had our appointment at CHLA this afternoon, and I'm so beat.  Driving up there and back on a weekday with LA traffic is not fun, but on the bright side, we got some really promising news.  They are going to go ahead with the lens removal surgery on the right eye to get rid of the cataract.  The best part is, they are going to try to get us in for surgery on November 20th, which is perfect timing because Dave and I have the week off for Thanksgiving.  They normally do this surgery in the outpatient center, but with Ryan's history, they are going to use Dr. Lee's first morning slot in the main OR at CHLA, and Ryan will most likely spend one night there in the hospital.  They are going to request a spot at the Ronald McDonald House, but if he stays in the PICU instead of the NICU, there's a good chance he'd have his own room and I could just stay with him in there instead. 

Dr. Reiser will be performing the lens removal surgery and will also do a small vitrectomy while she's in there to remove any other scar tissue that may be behind the lens.  Then Dr. Lee will come in and examine both eyes while Ryan is still under anesthesia.  He explained how he can use a special light to look inside the eyes and figure out how nearsighted Ryan is so he can get a prescription.  Preemies have the tendency to become nearsighted, and he said that the fact that Ryan isn't tracking or focusing on much right now is a sign that he may be VERY nearsighted.  Once he can determine the level of his nearsightedness, he can set up a prescription for a contact lens.  Normally, a baby Ryan's age would just get glasses, but since he his having his right lens removed, and will need a contact to act as a temporary lens in that eye anyways, they said they might as well put a corrective contact in the other eye as well.  I'm so glad they are willing to do this sooner rather than later because I know that vision will make a big difference in Ryan's learning and development.  Once Ryan is is old enough and his eye is closer to full grown size, they will talk to us about putting in the permanent prosthetic lens in the right eye.

We are so blessed that we live in a place where some of the leading eye specialists in the world are within driving distance and available to help Ryan retain his vision, and we are so thankful for these answered prayers that there is still hope for a positive outcome with Ryan's vision.  Thank you for all the prayers and well wishes.  We'll keep you posted!

 

First day done. (Grab a cup of tea, this got LONG).

Well, that was rough.  But honestly, I only thought about it at recess, lunch, and right after school.  That's the thing about teaching, your brain is focused on so many things going on in the classroom, you don't have a spare brain cell to think about anything else.  And I will say, it was nice to see my current and former students again.  They always make me feel like I'm loved and missed.  One of my former 6th graders came up after school and asked about Ryan, so I showed him a picture in my phone.  The reaction was much better than when I showed my 2nd graders a picture before I went out on leave for these three weeks, who all responded with a resounding "EWWWWW!" when they saw his breathing tube.  I think 2nd graders pretty much respond with EWWW to anything they are unfamiliar with, so I wasn't offended...it was a nice little teaching opportunity to explain about accepting others, even those who look a little different.   Of course, once I explained what the tube was and what it was for, they all thought he was "soooo cute". :)

So, now that we are back into the swing of things, we're asking for some big prayers and positive thoughts for our eye appointment tomorrow.  Dave and I will be taking him back up to CHLA in the afternoon to meet with Dr. Reiser and Dr. Lee and find out what we are going to do about the cataract in his right eye.  I'm really hopeful that they will have some options that will help him regain vision in that eye again.  I'll update tomorrow night with what we find out.

On the same note, a developmental center called me this week because Ryan will most likely qualify for some services, and she asked if I had any questions before we find out what he qualifies for in January. I asked for advice on how to help him develop his brain even though we aren't exactly sure how much he can see or hear at this point.  She called back today with some great news about a Braille Institute that will actually send someone out to see Ryan at home for FREE.  Love when I get good news like this.  I want him to have every opportunity to develop his brain now while he's still in such a formative state. 

(WARNING, this part will be long.  And I'm over-sharing.  You have been warned.)

I hadn't shared this here yet, because I was told not to worry about it, but of course since I've found out it's been on my mind and I figure there's no reason not to share and get some extra prayers going for a good outcome.  A few days before we were discharged, they decided to do one last head ultrasound, just as a formality because he hadn't had one since June.  We were incredibly lucky that he didn't have a brain bleed at all after he was born.  It really is a miracle because it's just so common in micropreemies to have some level of a bleed.  So, when they decided to do this ultrasound (his 4th), I didn't feel a reason to worry after 3 clear reports.  Well, on the day of discharge, the neonatologist reminded me of it and went over the results.  I had actually forgotten he'd had it done with all the excitement of going home.  He told us that there's still no bleeding, but (I hate that word) the doctor who read the images put a note in there that he saw mild hydrocephalus.  I actually had heard of this term through an awesome preemie support group I'm fortunate enough to be a part of.  One of the moms has a blog with lots of information about this condition because her twin miracles, also born at 25 weeks, are diagnosed with hydrocephalus (http://hydrobabies.blogspot.com/).  Basically, the reason for the diagnosis was that the ventricles in Ryan's brain looked slightly enlarged as if there could be extra cerebral fluid in there.  Dr. Soliman was very insistent that he didn't think it was accurate to call it hydrocephalus (which means that there is extra pressure pushing excess fluid into the brain), he said, if anything, it could be hydrocephalus ex vacuo, which of course I googled the heck out of as soon as I got a moment alone with my laptop after he came home.  This concerned me even more because it meant that the gray/white matter in his brain wasn't growing enough, and the cerebral fluid was just filling in the empty spaces making the ventricles increase in size.  So, good news, the hydrocephalus isn't caused by too much pressure in his brain, but bad news, his brain isn't growing like it should.  Now before you all freak out like I did, I'll save you some time and worry by going over my list of reassuring facts.

Fact #1 - Dani has a big head.  (Sorry if you're reading this later on, honey!)  Throughout Ryan's NICU stay, as his head was growing and looking nice and round, people would comment on how round and perfect it was for a preemie and I would tell them that he has the exact same head as his sister.  So I never thought anything of it.  Dave has a big head, too.  He'll tell you that himself.  He HATES shopping for hats.

Fact #2 - Dr. Soliman truly did not seem concerned about this.  And he has ALWAYS been super blunt about everything that's happened with Ryan, to the point where I was starting to think that doctors just give you the worst case scenario every time they give you news so you can be pleasantly surprised when everything doesn't go as badly as expected.  So, yeah.

Fact #3 - After we came home, I read through ALL of Ryan's discharge papers.  Even the ones that were written for other doctors.  Did you know they write the parent version of the discharge papers at an 8th grade level?  That's what I was told, anyways.  The doctor version is much more medical, but it's amazing the terms and acronyms you figure out being in the NICU for 7 months.  Anyways, as I was reading I came across the reports on his previous head ultrasounds and I discovered that the one in June, which was the one that they showed me to compare the size of his ventricles with this current ultrasound, had a note that said it looked like his ventricles had shrunk.  That made me think that maybe this ultrasound just made it look like his ventricles were too big, when in fact they were just catching up from the previous ultrasound, and when you use the two images to compare it makes them look abnormally large.  This is what I am hoping at least. 

This combined with the fact that we apparently make kids with big heads, I'm hopeful that he'll just grow into his ventricles and it won't become a concern.  I'd be so interested to see what Dani's head would have shown in an ultrasound at the same age adjusted, but of course they don't just routinely give babies head ultrasounds.  So, we're keeping this on our list of prayers and trying our best to stimulate Ryan and get his brain to grow if that's what is causing the ex vacuo part of it.  I think being at home is already making a notable difference, and hopefully getting some developmental help early on if he's diagnosed with hearing loss/vision loss will help with that as well. 

If you read all of that, you rock.  Thanks for checking in on our little guy.  No matter what, we know he's going to be just fine. :)

The time has come...

I have to go back to work tomorrow.  This might just be the hardest part of this whole journey.  I'm sure it will be good for me to have something to focus on and get me out of the house, but I know I'm going to be missing him so badly.  On the positive side, it's one more step in the direction of normal.  I actually feel like he's ok to be at home while I'm at work.  He's getting stronger every day, and after almost 3 weeks at home, he just seems less fragile.  Sometimes during the day while I'm here, I think to myself, "If only time could just move faster".  I know that's not the typical wish of a mom.  (Well, maybe it is depending on how well your kids sleep as babies).  Most people want their babies to stay babies.  Not me.  I'm ready for him to grow up and get well so we can take him places and get him out of the house.  I know that as time passes, he'll need less help, fewer meds, and he'll be able to live his life to its fullest.  To be honest, I just can't wait for the day he can play outside with his big sister.  She's excited about it, too, she just doesn't know it yet. 

So, wish me luck as we make one more change and get used to this new routine.  It's been one routine change after the other, but this should be the last big shift before we can just settle in for the long haul.  And I just have to thank God one more time for figuring out a way to get me a job share at my school this year.  It seriously could not be more appreciated. 

I'll leave you with a picture I took of Ryan last night right before his bath.  This boy LOVES to sleep (praise the Lord), so much so that he typically sleeps through his bath.  It's the funniest thing.  Last night while I was getting him undressed, his arms were extended and his blanket flowed behind him in such a way that I just had to take this.  Our little Superman.  (And in case any of you were wondering what his g-tube feeding tube looked like, there it is).

4 Months Adjusted.

So during Ryan's NICU stay I would take a weekly picture of him with his little sign to show how many weeks old he was.  Now that he's home, I'm switching over to the monthly pictures like we did with Dani.  It's interesting to be able to compare them side by side.  I'm not falling into the trap of comparing them as far as milestones and everything else, I just personally find it encouraging to see that he's not TOO far behind as far as his size for adjusted age.  I'm doing his adjusted age because if I tried to compare him to an 8 month photo of Dani who was born 3 days past her due date, they would obviously not really match up.   I never really thought I'd be relieved that she took longer to crawl and walk than most babies (she crawled at 11 months and walked at 16 months), but I think it was just all part of God's plan to help prepare me for Ryan.  I won't be as concerned about him taking longer to reach his milestones knowing that even full term babies do things on their own schedules.

Also, to explain why Ryan looks half asleep, I almost forgot to take this picture until just after I had swaddled him up and put him to bed for the night.  So I had to turn the lights back on to take a quick photo, and he was a bit confused about it all ;)

 

Side note:  A few people asked me to let them know when I post on here because it doesn't notify you like the carepage did.  But, with the help of a friend, I was able to figure out how to add a gadget that will allow you to get an email notification when I post.  If you are interested, just look on the top left of this page and add your email address where it says "Follow by email".  Hope that helps! 

First visit to Grandma and Grandpa's house.

Today we went to spend a few hours at my parents house, and Ryan was all smiles.  It was the cutest thing.  Unfortunately, the pictures are a bit fuzzy because he was swinging in his swing while I was snapping these, but I still had to share this little sequence of events.  First, he was all:

"Hey grandma and grandpa!  I love this rockin' swing!"

Then he was all:

"Wow, this swing and binky combo is intoxicating...but I don't dare close my eyes and miss out on some sort of excitement."

And then:

"Zzzzzzzzzzzzz." - Ryan Aprea.

By the way, our little guy is 4 months adjusted today.  So even though he's technically almost 8 months old, he's should be a 4 month old.  Just a little fun fact for the day.  Happy 4 months/almost 8 months, buddy!

Latest happenings.

I know it's been a while since I've updated on Ryan, so I'll try to summarize what's been going on!  I'll actually have to refer back to my last post on the carepage to see where I left off.  OK, I'm back.  I think I'll sort this post into the same categories I have as tabs on my Ryan Binder. :)

General/Gastrointestinal:

We met with his GI doctor, Dr. Ho, on Oct. 30th.  He was pleased with the g-tube site and thought it was healing nicely.  We talked about his reflux, diet, and overall gassiness, and he gave us some suggestions.  We're still working out a feeding schedule that works for us.  We need to find a good balance between Ryan getting enough calories each day to continue with his good weight gain without causing him to get so full he gets bloated and refluxy (not an actual medical term, in case you were wondering).  He felt that we should cut out the continuous overnight feeds because that seems to be when he gets the most uncomfortable (the poor guy really wants to be a good sleeper, but he grunts from 4-6am pretty much every morning.  He's actually sleeping as he does it, but mommy and daddy sure aren't!).  So we had to gradually get him up to 7 daytime feeds and allow him to just sleep through the night.  Yesterday was the first day we got all the volume in during the day, and after his last feed at 6pm he passed out and didn't wake up until 1:30.  I decided rather than using the feeding pump at nigh I'd just let him nurse if he woke up hungry, and that worked fine.  He went back to sleep and then woke up and nursed again at 3:30, then slept through around 7am.  And guess what...he DIDN'T GRUNT!  I will wake up twice to nurse any day over having to listen to the poor guy grunt for 2 hours every morning in discomfort.  So, we'll keep this up and see how it goes.  We also took out the neosure powder because it was stopping him up.  Since we took it out, his poops have become a lot more regular (you're welcome).

Lungs: 

We were blessed to be one of the first patients to get the synagis shot for RSV at CHOC Clinic yesterday.  After yet another extremely frustrating insurance ordeal (mistake was made on CHOC's end this time, not Blue Cross'), he got the shot and he did NOT appreciate it as much as I did.  I'm relieved he'll have some protection from RSV, even though it's still really important that he not be out in crowds, and he not be around people with symptoms.  It actually turned out to be a nice visit because I had to go pick up some frozen milk that got left behind in the NICU, so we got to go visit Ryan's old home away from home.  His primary nurse, Julie, was there along with the NP, Tiffany, who gave us her cell number because she also works at CHLA NICU and knew we would be up there again for eye surgery.  She said she would come over to the PICU for a visit. :)  One of his neonatologists, Dr. Cleary, came over to see how he was doing, too.  They all commented on how chunky he is and how chubby his cheeks are. :)  Later that day, Dr Y., his pulmonologist, called to let us know his blood work results came back.  She was about to STOP 2 of his meds!!  So we are down to around 7 meds now.  Slowly but surely we'll just keep shedding those bad boys!

Eyes/Ears:

Still no update on this other than we have an appointment set for Thursday afternoon to head up to CHLA to consult with both Dr. Reiser and Dr. Lee.  Please keep Ryan in your thoughts and prayers that this appointment comes with good news.  I really feel like he's trying to search out his vision with his left eye, but with the cloudiness in his right eye he just can't get his eyes to focus on anything.  He definitely loves to try to look around, though.  As for his hearing, we have our 2nd hearing test on 11/29.  I'm very curious to see what comes up at this exam.  Right now, I'm 75% sure he can't hear.  It's hard to say if it's actual hearing loss, or if he's just developmentally not ready to respond to sounds.  I just don't know.  But we'll be praying hard that as he continues to grow, these senses will grow with him and the doctors will be able to help him with anything that may be lacking.  No matter what, this boy will be loved.  That part is just a given.  As we were going to bed yesterday, Dave said in his ever-tactful way, "So what if he's deaf or blind.  He'll be the most badass blind/deaf kid there ever was and he'll have a happy life."  Brought a tear of joy to this mama's eye. :)

Other than all that, he's been doing fantastically.  We take him for walks and he even slept in his stroller in his Captain Hook costume as we watched Dani and her buddy, Nathan, trick or treat on Halloween.  He's been giving out big, gummy smiles more than ever lately.  Today we had an impromptu outing to the farmer's market along with an extended visit to my parents house because we needed to have our house exterminated (anyone else loathing this horrible flea season??), and he was such a trooper!  I'm sorry for trying to cram so much information in one post.  Now that this blog is set up, it should be easier for me to post more often, and I can include more about his everyday milestones rather than just all his medical stuff.  I can't wait for the day when the everyday stuff is more normal than the health issues.  Strangely enough, it's only been about 2 weeks, but I'm already starting to notice a shift in the right direction.  Thank you for the continued love and support.

Welcome to the new blog.

I feel like now that we are home and out of the NICU, it's time to leave the carepages site behind. We've graduated! I think this will be a more user friendly way for us to keep everyone updated about Ryan's amazing progress. I most likely won't post quite as often as I did while he was in the NICU because, well, let's be honest. That was pretty crazy. It was very therapeutic for me, though, so I appreciate you all sticking with me and checking in during those 7 (holy cow, SEVEN!!) months. I was in such a daze, I'm sure I put way more out there than I should have, but you all made me feel like it was ok to over-share, vent, cry, and just get my thoughts out and for that I'm eternally grateful. I will continue to over-share here, I'm sure. Just bear with me. I'm a chronic over-sharer. This is sort of just a welcome/trial post to see how this all works, I'll update more about Ryan once I get all of this sorted out.

Thanks so much for being here!