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.