Keeping you in the loop.

Last night Dave was with Ryan at CHOC, but I've called him a few times today for updates, so I just wanted to keep you in the loop with where he's at.  Overnight he didn't sleep as well as last night, probably because he slept so much during the day yesterday.  Plus, they were suctioning him a lot last night, and really who could sleep through that?  The cardiologist came by again this morning and Dave asked about the low heart rate again.  He confirmed that it's nothing concerning and that they are happy that it's low as opposed to high.  His body is doing a good job of fighting off the virus without working too hard, and it's not causing the pulmonary hypertension to flare up, so that's good.  I can't remember if I mentioned this already, but they did an echo the day he was admitted just to make sure the PPHN didn't show up again and need meds, and even with all the wheezing and extra lung pressures, his heart still looked good, so that was really great news.

When I talked to Dave at lunch time, they were just weaning down the flow on the high flow nasal cannula (HFNC).  He was on 15 liters, but I'm not sure what they brought it down to.  He's still at 55% oxygen, but if he does ok with the new flow, they'll wean down his oxygen tonight.  His sats were 98% when I talked to him, so that was really good.  We are on day 5 of the virus, so hopefully this will be the last really hard day for him and we can focus just on weaning down the oxygen and getting him home.

So, I can't remember if I talked about this here yet either, but while he's in the hospital we are going to try to catch him up on his appointments we had to cancel this week and see if we can take care of anything else that needs to be done so we won't have to make more trips out there later on.  I asked if they could do a head ultrasound to check on the "mild hydrocephalus" they saw in the last ultrasound, and the PICU attending said we could do it as soon as he's feeling better.  I also asked if he could order another ABR (the longer hearing test where he's supposed to sleep for 2 hours) because he was supposed to have one on the 27th but we had to cancel.  The hearing place is right across the street from CHOC and they can bring their equipment over to do it in the hospital, and they usually set those up for Mondays, so if we are still in, which seems pretty likely at this point, we might be able to get that taken care of.  We also had the nurse request a physical therapist to come up and work with Ryan while he's there.  When he was in the NICU, he would get PT work every M-F.  We are supposed to start weekly visits at CHOC next week, but we figured he might as well get a head start while he's already there, if he's feeling up for it.  Oh, we had to cancel the mickey button placement procedure on the 26th, so maybe they'll be able to do that while we're there, too.  I'm sure we'll think of a few more things, but this is probably plenty for now. 

I'll be heading over to CHOC to switch off with Dave as soon as Dani wakes up from her nap, so I probably won't get to update the blog again until tomorrow night.  Ryan had some more visitors yesterday...our friend Melissa, who is an NP at CHOC, stopped by to see us, and his 4th primary nurse (Lindsey) was working yesterday so she came by with another nurse friend (Beth) to say hello.  He is so blessed to have so many people who love and care about him.  Thank you all for keeping him in your thoughts and prayers.

RSV Update

We're in a nice little routine right now...Dave and I are taking turns spending the night with Dani/Ryan.  I'm home with Dani tonight, so I finally have a chance to update.  On Wednesday we were worried about his crazy high heart rates.  Yesterday early on, he had some high heart rates, but they were starting to look more like normal.  The doctors were saying that he was stable and they were pleased that he wasn't showing signs of needing any more support, so that was a really good thing.  He lost his 2nd IV yesterday, but it was after they had given the OK to start up his breastmilk feeds again, so when the nurse mentioned doing a PICC line I asked if we could avoid it.  Placing a PICC line would mean sedation and a slight risk of infection, and his veins are so hard to poke, I just really didn't want to put him through that if it wasn't absolutely necessary.  She said she would talk to the docs, and they were ok with waiting.  He started his feeds and tolerated them fine, so they switched the antibiotic to an oral version (rather than IV) so he could get that through his g-tube instead.  So no more IV!!  He was acting feverish, going from hot to cold with lots of sweating, so they gave him a dose of Tylenol in the evening and he really settled down. 

He slept great last night minus the times when they had to suction out the mucous.  The one thing I started to notice before he went to bed was that his heart rate was looking a little low.  He was hanging out in the 90s and even made the alarm go off for a hot second when he dipped below 70.  I had a minor NICU flashback to the days when he would have random bradys, but this was so quick and his sats were fine, so I chalked it up to a bad lead connection.  Then in the early morning, even after he woke and his heart rate would normally rise to the 150s, he was still hanging out in the 90s-100s.   He was also cold to the touch, which is strange for him.  I was holding him, which usually heats us both up, and I still had to cover him in warm blankets to get him to warm up. Then he had one more of those random dips into the 70s, so I had to be a squeaky wheel (thanks to some great advice from some mommy friends of mine).  I asked everyone who would listen if his heart rate and cool temps were a reason for concern.  The pulmonologist said he was ok with it, the PICU attending said he was fine with it, they did a blood gas to check for anything off, and it looked just ok.  His CO2 was 61, which to them seemed high at first, until they found out he was discharged from the NICU in October with a CO2 of 62.  He's got chronic high CO2 because of his lungs.  So, they all assured me that it wasn't sepsis or any other sign of infection, and that they were actually pleased with his progress fighting this virus.

Here's what I learned today about RSV, or actually, viruses in general.  So, the virus attacks the body and to fight back, the body becomes inflamed so that more blood can get through the body to fight the virus off.  Thankfully, since Ryan has had two rounds of the synagis shot, he already had some antibodies in him that help fight off RSV.  That's why he's been able to fight this off so much better than most babies with bad lungs, and he hasn't had to be intubated.  But, his body still gets inflamed to help fight, and that's what causes his lungs to have problems.  So they give him steroids to help with the inflammation so that his lungs can breathe easier, but they don't want to overdo it because some inflammation is good to help fight the good fight.  There was a lot more to it than that, and they explained something about the antibiotics and how that plays into it, but I'm too tired to remember right now.

So overall, he's still stable, and he's getting slightly better each day.  The doctors explained that RSV typically reaches its worst point at 3-5 days after the first symptoms, so if that's true, he should be on the downhill road to recovery starting tomorrow.  Once he gets over the worst part of the virus, then it will just be a matter of seeing how his lungs recover before we can figure out when we will be able to bring him home again.  The whole virus usually runs its course over 7-10 days, and then he'll have a lingering cough for a few weeks, so we'll see how it goes and take it day by day.  All the love and prayers you guys are sending every day are so very appreciated.  Ryan has been enjoying visits from all his old NICU nurses, too!  All 4 of his primary nurses have already been able to stop by and see him.  If he has to be stuck at a hospital, I'm glad we're at CHOC where everything is familiar and people remember him as soon as they read his name.  Off to bed...

Quick morning update.

For those not on Facebook, I wanted to give a quick update before I head over to CHOC.  Ryan did really well overnight and seems to be improving this morning.  They had to suction him a lot, and they changed up his nebulizer regiment a little bit, and he's sounding less wheezy this morning.  His heart rate is finally starting to come down, too, which is a good sign that he's not working as hard to breathe.  We are so thankful for all the prayers and we know that God is so good to our little boy.  Dave was a super dad last night and spent the second night in a row with him so that I could spend the night with Dani.  I'll be heading over there to spend today and the rest of the night with him so Dave can get some Dani time, too, and I can get some more Ryan time!  As much as we dislike having him sick and in the hospital, it has been really nice to see the familiar faces at CHOC.  RTs, PTs, and nurses that knew him from the NICU days have been stopping by to say hi and are so pleased to see how big Ryan looks.  Such a strong little boy with so many who love him.

Back to CHOC.

I just reread my post from last night and it's amazing how things change so quickly with Ryan.  Last night when we put him to bed, we thought he was on the mend because he was sleeping comfortably and finally satting 100 again.  Unfortunately, we were wrong.  At a little bit after midnight, he woke up coughing and took a turn for the worse.  His sats dropped into the 80s and even with turning him up to 2 liters flow we couldn't get them back up.  We tried suctioning him, we gave his nebulizer treatments, I was holding him upright to try to get him to drain some of the mucous in his chest, but nothing helped.  He was stuck at around 88-91% oxygen.  This number is actually within the range of "acceptable" for most NICU babies, but not our little guy with his messed up lungs.  He doesn't have the reserves necessary to tough it out at that lower level, so he always needs to be 92 or higher.  After we tried all the tricks we had, I called the on-call pulmonologist.  By the time 3am hit, he was starting to cough and wheeze even more than before, and we still hadn't received a call back from the doctor, so we decided to just take him in.  Thank God we did because as soon as we were getting him into the car seat, he had such a bad coughing spell he started to desat into the 60s, but he popped back up to 90 on his own.  Driving home from the hospital today I couldn't stop thinking about that moment.  God really was watching out for him because if he hadn't come back out of that desat on his own, I don't know what would've happened.  I can't even think about it.

So, he's at CHOC in the PICU now and Dave is spending the night with him tonight while I stay with Dani.  I was able to stay with him a few hours today while my mom watched Dani, and it's so hard to see your baby so sick.  Even after everything we went through in the NICU, I think these past few days have been some of the most difficult.  I think it's because he has been looking so happy and healthy since he's been home, and now to see his poor face looking so sick and to hear him coughing and wheezing, it's just heartbreaking.  Plus, they constantly have to suction his throat out through his nose, and he does not like it at all (who would?).  But, as hard as this is, we are SO, so blessed that it isn't any worse.  The pulmonologist came by to see him today and answer our questions.  We found out a lot of info about RSV.  Apparently, the symptoms typically peak 3-5 days after the first signs of illness, which makes sense since we first noticed him getting sick around Saturday morning.  RSV is not an infection, it's a virus, so the snot that you suction out will still be clear or white.  The worst part of this particular virus is that the mucous is very thick, like glue.  That's why it affects babies so much more because they don't have the strength/know-how to really cough that stuff up, so it gets stuck in their lungs and they can gag/choke on it.  The only real treatment for it is extra oxygen support, nebulizer meds, and fluids/rest.  Ryan was also put on an antibiotic because his lungs were starting to look a little hazy in the x-ray they took this morning.  It could be an infection in addition to the virus, or it could be the mucous plugs showing up.  Either way, he'll be covered just to be safe.

The biggest blessing to all of this is that they knew he would be high risk for RSV, so he was one of the first patients to get the synagis shot at CHOC.  This gives him antibodies to help fight off RSV, and while it obviously didn't prevent him from getting it, it's definitely helping him to fight through this.  The doctor told us today that if he hadn't had the synagis shots, he most definitely would've been intubated by now.  We are hoping and praying that he will stay stable on the high flow nasal cannula he's on now so that he won't need to be intubated at all.  We are taking it day by day, and they don't have an idea quite yet of when he might be able to come home.  It all depends on him.  They'll let him come home once he gets back down to the same level of oxygen support he was on before, which is .5 liters.  God willing, he will keep fighting with all the strength he has in him and he'll be able to get home sooner rather than later.  Thank you all for checking in and sending thoughts and prayers his way.  We definitely feel them and we know that God is listening and helping him through each day.

Ryan's First Christmas.

 OK, so first off, I have no clue how to move pictures around in here.  We're lucky I can even upload them, so sorry they are all out of order and off center!  Don't ask me. :)

If you are my friend on Facebook, then you already know that we did end up having to take Ryan into the ER yesterday.  We were really trying to avoid it if at all possibly because so many doctors and nurses had warned us that if he ever got sick it was pretty much a guarantee that they would admit him into the hospital to be monitored.  We feel that we are pretty darn good at monitoring him, and we have all the equipment here at home that he would need to get through any illness.  And we REALLY didn't want him to spend his first Christmas in the hospital.  Just thinking about that scenario gave me the shudders.  But, after he was up a lot of the night coughing and wheezing and he had two desaturation spells where he dropped down into the 80s, we knew we needed to take him in just to be safe.

The timing actually turned out to be better than we expected.  We are so thankful we bit the bullet and went in on Christmas Eve because if we had waited, he most likely wouldn't been worse today, and we definitely would've had to take him in.  Plus, it really wasn't crowded when we got there.  We didn't wait more than 5 minutes to be seen.  The took a nasal secretion culture to do a rapid RSV test and they drew some blood to run some labs.  They also did a chest x-ray to check for pneumonia.  The rapid test came back positive for RSV right away, so he was diagnosed with bronchiolitis with RSV.  The ER doctor understood our concerns about admitting him over the holidays when we have all the equipment necessary to take care of him at home, but she still said she needed to call over to CHOC pulmonary to make sure they were ok with it.  I was a bit nervous at that point because they've always been VERY conservative, and they were the ones who used to tell us in the NICU how it was pretty much guaranteed he'd be hospitalized if he ever got sick once he got home.  It was seriously a Christmas miracle when she came in and told us that we were going to give him a dose of decadron (steroid) and give us a prescription for another steroid (prednisone) to take at HOME!  I don't think we've ever packed him up in his carseat as quickly as we did in that moment. 

What we didn't expect was that Ryan would get worse before he got better, even with all the steroids.  Last night he slept ok, but he would keep us awake with his wheezing and coughing.  I am not complaining in the least because I would so much rather lose sleep in the comfort of my own home than in a hospital room, especially on Christmas Eve!  But it was a rough night for us all.  He's been desatting still throughout the day and he needs to be suctioned A LOT.  Poor boy is so gunked up with thick mucous.  By the afternoon, his wheezing started to sound so bad I actually got concerned that maybe they missed something and he had something else going on besides just the RSV, so I called the on-call pulmonologist again.  It was the same doctor I spoke to on Sunday night, so he already knew the back story on Ryan.  I explained that he seemed a bit worse and asked if this was just normal for RSV or if there could be something else going on.  He said it is normal, and it can last up to 2 weeks.  He is hopeful that with Ryan having the synagis shot on board that it might not last as long, but we're prepared for the long haul.  Thank God for the timing again because hopefully he'll be better by the time we have to go back to work in January.  The doctor asked if he was still able to eat, and thanks to the g-tube we've still been able to feed him just fine.  Another major blessing.  So he increased the amount of the prednisone and assured me that he's ok as long as his sats are above 92%.  But if he drops lower than that on 1.5L then we have to bring him in.  After I gave him the extra dose of the prednisone this evening, he was able to relax and fall asleep and he finally started satting in the higher 90s.  Now he's just had his bath and Dave is putting him to bed and he's satting 100.  We're praying he'll stay comfortable and have a better night tonight!  It's so hard to see him so uncomfortable and sound so congested.  :(  Thank you all so much for all the prayers and well wished you've been sending for Ryan.  We know this could've been a lot more difficult for him and us, so we're thankful for the many blessings and answered prayers that are helping make this inevitable sickness a little bit easier to manage.  Merry Christmas from our family to yours.

Ryan playing with his IV that they placed "just in case" when they drew his blood for the blood tests so they wouldn't have to poke him twice if he ended up needing one.

Dave getting Ryan out of dodge!

Ryan pouting because he's sick on his first Christmas.

 Finally sleeping comfortably while daddy and sister play with some of the gifts Santa brought.

 Big sister playing with her new princess castle.

Napping in mommy's arm earlier in the day when he was looking not so hot. :(

Need some positive stuff...

The dreaded day has arrived where Ryan is actually acting sick.  He started with a little extra coughing yesterday, but it seemed to clear up.  Then it acted up again this morning and didn't go away with his nebulizers like it normally does.  He's been a little off today, and tonight he was desatting more than I've seen since he's been home.  Actually, the only time I've seen him desat at all is when he manages to pull his prongs out of his nose.  This time, his prongs were fully in and the pulse-ox monitor was getting a good, solid readout, but those numbers just kept dropping.  We ended up turning up his oxygen this morning, and then again tonight when he was desatting, so he's up to 1.5L right now.  His normal is .5L.  I called the on-call pulmonologist, and he told us to bring him into the ER, but I know that's what they tell everyone so I asked if he could talk it out with me first because it's not exactly easy for us to just hop over to CHOC late at night with a 2 year old at home.  I told him that he was satting 100 on the higher flow and asked if we could just keep him on that until tomorrow and see how he does.  He agreed, but said if his sats drop below 92 tonight while he's on 1.5L we need to bring him in right away, which is totally understandable.  As I type, he's laying here next to me satting 99, so I'm hopeful he'll maintain that level throughout the night.  He also said we should give the alburterol nebulizer treatment every 4 hours through the night and tomorrow, until he starts to feel better, which is also fine.  So, right now, aside from an occasional coughing fit, he seems to be doing ok.  We could really use a lot of positive thoughts and prayers that he can pull through this little cold without it turning into something nasty.  We REALLY don't want to have to bring him into the hospital for his first Christmas.  Please help us pray for a little Christmas miracle.  The power of prayer really can work miracles.  Thank you.

Update plus more #26actsofkindness

I'll start by updating on Ryan.  He's still doing great, gaining weight, trying to stay healthy in the midst of flu season.  The past few days he has woken up sounding just a little bit more congested than usual, so we are being extra careful to keep him healthy.  Right now he is sleeping away in one of those glorious moments when both of our kids are napping at the same time!  We are starting to get the hang of the contacts.  We try to get them in first thing in the morning while he's still sleeping so we can take advantage of the element of surprise.  Once he figures out what's going on, which doesn't take but a few seconds after we yank his eyelid open, he definitely fights them.  You have never seen a child clamp and eye shut SO tightly as Ryan does, no joke.  Once they are in, though, he is totally fine.  We started him at 4 hours and built him up one extra hour each day, and now he can have them in from morning until bedtime.  A day or two ago when he had them in around 10 hours and had to get them out a few hours before bedtime, he actually got a little fussy when he realized they were gone.  I definitely think that he notices when they are in and that they are making a difference!  He is focusing more on toys and things we hold in front of him, so that's a great sign!

We've been working on our #26acts of kindness over the last few days.  In honor of one of the teachers who lost her life, my class made snowflakes and wrote letters to the student survivors for when they go back to Sandy Hook.  I read that there is an address to send these so that they can decorate the school when it reopens, so we will send these out to CT.  I didn't go into detail about what happened other than to say that there was some damage to a school and they would need to fix/rebuild it.  A few of my students knew what had happened from older siblings, but we were able to talk about it very respectfully and in a way that wouldn't upset anyone who didn't really know all the details.  I'm not sure if you can read the letters in the picture, but they were all very sweet.  If you are interested in having your own kids or students do this, I will include the address at the end of this post.

Snowflakes for Sandy Hook in memory of Lauren Rousseau

LAUREN GABRIELLE ROUSSEAU, 30, teacher
Lauren Rousseau had spent years working as a substitute teacher and doing other jobs. So she was thrilled when she finally realized her goal this fall to become a full-time teacher at Sandy Hook.
Her mother, Teresa Rousseau, a copy editor at the Danbury News-Times, released a statement Saturday that said state police told them just after midnight that she was among the victims.
"Lauren wanted to be a teacher from before she even went to kindergarten," she said. "We will miss her terribly and will take comfort knowing that she had achieved that dream."
Her mother said she was thrilled to get the job.
"It was the best year of her life," she told the newspaper.

Here is the information on the snowflake project:
There is a grass-roots project under way to decorate their new school with homemade snowflakes to create a winter wonderland. If you and your little one would like to contribute, please send your snowflakes by 1/12/13 to Connecticut PTSA, 60 Connolly Parkway, Building 12, Suite 130, Hamden, CT 06514.

#26acts

The Newtown tragedy hasn't really left my mind since it happened on Friday.  I actually had a long blog post typed out about it, but I think it's better to just leave it in my drafts because it was very raw and emotional.  Instead of that over-share, I'll share this blog that I came across today.  I think it is the perfect response to a situation where you just really don't know how to respond or what you can do to help.  These 26 acts of kindness will never bring those children and educators back, but at the very least their tragic loss will hopefully lead to a more positive and loving society.  I always hold my kids tightly because I have always known just how fragile their beautiful lives are, so that part can't change for me.  This is something tangible that I feel like I can do to honor the Sandy Hook children and families.

I'm very hopeful this sentiment will spread like wildfire, and I'm sure it will with the wonders of social media.  I found out about it here:  http://paddedtushstats.com/2012/12/16/26-acts-of-kindness-for-the-victims-of-the-connecticut-school-shooting/, but I'm not sure where it originated.  We were already planning to bring cookies to the NICU nurses at CHOC tonight, but now it will be in memory of Noah Pozner, who's mother was also a nurse.  Here's a little bit about him from the Huffington Post:

NOAH POZNER, 6
Noah was "smart as a whip," gentle but with a rambunctious streak, said his uncle, Alexis Haller of Woodinville, Wash. Noah's twin sister Arielle, assigned to a different classroom, survived the shooting. He called her his best friend, and with their 8-year-old sister, Sophia, they were inseparable.
"They were always playing together, they loved to do things together," Haller said. When his mother, a nurse, would tell him she loved him, he would answer, "Not as much as I love you, Mom."
Haller said Noah loved to read and liked to figure out how things worked mechanically. For his birthday two weeks ago, he got a new Wii.
"He was just a really lively, smart kid," Haller said. "He would have become a great man, I think. He would have grown up to be a great dad."

Contacts.

They suck.  That is all.

OK, just kidding, that's not all.  Today they were not so bad.  I actually got them in for the first time since he got them on Friday.  Dave was putting them in all weekend because he was the one who went to the appointment and saw the demonstration on how to use them, so today I had to step it up.  I did my first attempt at around 9am, and that was a big, huge fail.  Then at around 11:30, Ryan was napping so I tried to sneak them in there.  Well, I got them in, but there was really nothing sneaky about the home nurse holding his head down and me yanking his eyelids open.  And the little lenses are so tiny, it's nearly impossible to keep them in your fingers when you are trying to get them in.  But, putting them in when he is just waking up is a lot easier because he's still sort of tired and out of it, so he doesn't fight you off as effectively.  So I did get them in that time, thank God.  Today he was supposed to keep them in for 6 hours, and he did!  He also didn't let any pop out or slide into the bottom of his eye like he had been doing, so that was really good, too.  I think he's starting to get used to them!  It's still hard to tell if he can actually see even with them in, but we are very hopeful.  We've been doing a lot of visual stimulation with him while he's wearing them to help him get used to seeing things.  We're very optimistic that all this hard work will pay off for him in the long run.  Now that is all. ;)

ABR Hearing Test and Echo.

Time for another update while both kids are napping.  Sorry I didn't update about the hearing exam sooner, but, you know, it's been crazy.  So yesterday nurse Eileen and I took Ryan in for an ABR hearing exam.  It's supposed to take 2 1/2 hours and you are supposed to get your baby to sleep through it.  Yeah, I laughed, too.  We did our best!  We woke him up super early and didn't let him nap, it was perfectly timed so he was due for his feed when we got there, etc.  And Ryan did his best, as always.  He fell asleep pretty much right away after they put the electrodes on him, but he didn't quite sleep as long as they needed.  He slept probably 30-40 minutes, which was pretty good for him!  He's turned into quite the cat-napper lately.  During that time, they were able to get 2 signals on his right ear and half a signal on his left ear.  While that doesn't sound like much, it was enough for the doctor to let me know that he has profound and/or severe hearing loss in both ears.  Of course this was always in the back of our minds as a possibility, but we were so hopeful that they first two failed tests were just a fluke.  Unfortunately, that doesn't seem to be the case. 

The good news is that once they finish with the testing, we should know more about what options he will have for hearing aids.  Then later down the road, he could be a candidate for the cochlear implant.  The doctor didn't make it seem like this was an end-all diagnosis, but he did say that he was going to refer us to early intervention because they offer programs for parents to learn sign language.  He also indicated that his inability to hear most sounds would severely delay his speech, but with the early intervention referral we will hopefully get him some help with speech therapy as well.  I'm trying really hard not to be sad about this for so many reasons.  The first being that I know we are lucky Ryan is even alive.  This is just one more hurdle he will overcome with our help.  The second reason is that I know there are so many medical advancements in audiology, that hope is still alive for him to hear.  So, I'm trying to focus on that.  But, I will say here, so that I can just get it out and not dwell on it, that this is the first time in a long time I've come close to tears when someone asked me about the test results.  It's just so heartbreaking to know that your baby is going to have SO many challenges to overcome.  But, I know He can do great things so we will overcome.  (I originally typed that He with a lowercase h meaning Ryan, but I thought better of it). 

This morning we went in for an echo to make sure Ryan's pulmonary hypertension is still gone after stopping the sildenafil, and so far so good!  We will meet with the cardiologist on Tuesday, but the tech didn't see anything concerning, so that was good news. 

A lot of friends and family have been asking about Dani, and she is doing much better.  She's been fever free for over 48 hours now, she's just dealing with a little lingering cough/runny nose.  It's really nice to have our happy girl back!  Thanks for all the extra prayers you sent her way.  I'll end this with a few of my favorite pictures from the last week or two.

Playing with one of his favorite toys:

 Pensive Ryan at his first contact lens appointment:

 Making silly faces and funny noises.  One day I'll figure out how to get a video on here because the video I took right after this face is priceless:

 Poor, sicky Dani trying to make the best out of dinner:

 Ryan's giving one of the audiologists the side-eye after she put all those electrodes on him:

 Getting ready to doze off for the ABR test:

Another Eye Follow-Up.

This afternoon I took Ryan to see Dr. Rieser, the eye surgeon who removed his lens.  She was pleased with the way his eye looked, especially the part where she put the light to the side of his eye and he actually LOOKED toward it!  Then she moved it to the other side of his head, and he just went ahead and tracked his eyes right over to the other side.  So proud of our little guy and so thankful for these doctors who really do help work miracles.  She had already spoken with Dr. Uribe and knew he was getting his contacts this Friday, and she is really optimistic that they would make a big difference for him.  She gave it to me straight that the contacts would be a challenge to put in and take out daily, but she said she could tell we would do a good job with it.  I hope we don't disappoint, because I admit, I'm a little nervous!  Dave is going to have to take him to the appointment to pick them up, so he's already promised he'll take a video of the doctor when she demonstrates the tricks to getting them in and out.  Who ever would've imagined, a baby with contacts?!  My eyes are watering again just thinking about it...

Tomorrow we have Ryan's ABR test.  This is the more extensive hearing test where he needs to sleep for an hour or an hour and a half so they can put electrodes on his head to read his brainwaves and see what sort of brain activity there is responding to sound.  This should be interesting considering the past few days have been his most awake and alert yet!  The boy just doesn't want to nap anymore!  We're going to get him up early and keep him awake until we get there, but please wish us luck that we can successfully complete this test.  If not, they need to sedate him on another date and try again.  If that becomes the case, I'm going to try to work it so they can do the test while he's already sedated for his Mic-key button placement procedure on the 26th, but I'd rather not have to put him through the test twice if we can avoid it.  So lots of sleep baby prayers for tomorrow morning are greatly appreciated!  I'll update as soon as I can. Thank you.

First ER Scare.

I have to say, I think we've done pretty well about not freaking out and rushing him to the ER at the drop of a hat.  But really, Ryan gets all the credit because he's been so amazingly strong, so we really haven't had a reason to freak out.  This week was a little different because Dani got sick, so we had an extra watchful eye on him because, well, it's pretty impossible to quarantine a sick two year old.  And my poor girl is really sick.  I'm REALLY hoping the antibiotics she started Friday night are going to kick in tonight.  It's so hard to sit across from her at the dinner table with her sad, red, watery eyes and her runny nose.  She so rarely gets sick, it just breaks my hear to see her this way.  She's been spending lots of the day with grandma to keep her germs out of the house, and then we cuddle and watch movies on the couch before bedtime.  I will miss all the extra cuddles, but I can't wait for her to be her old, happy self again.

So, back to the ER scare.  In this paragraph I will attempt to justify the lack of sleep and $100 ER copay we dealt with overnight.  Last night when Dave and I got home from our date night, Dani was asleep and Ryan was in the mama-roo (side note:  this thing ROCKS, well, literally.  But figuratively, too.  Huge thanks to my sorority sister Elisa for lending it to us.  Ryan loves it!).  We got Ryan bathed and dressed for bed, and I noticed that the top of his head looked like the soft spot was bulging just a tiny bit.  Dani's was always concave, and Ryan's has always just been pretty flat, but when I gently rubbed my hand across his head you could feel just a tiny bit of puffiness there.  So, of course, I went straight to google.  That search engine is such a blessing, but such a curse.  I want to say to new moms, especially moms of preemies, "Don't let your typing finger lead you anywhere near that place if you are worried about your baby."  But, I can't...because then I'd be a big, fat hypocrite.  So, moms, continue to use google like we all know we must, but please be careful with the information out there and when you read something awful, REMAIN CALM.  :::Making a mental note to take my own advice:::  Anyways, I don't know if you're like me, but when I search for something on google, I'm always so hopeful that it will just give me some sort of reassurance.  Like 4 out of the 5 sites I read will say, yeah, that's pretty normal, don't worry about it.  Well, when I googled bulging frontal soft spot, it was not reassuring as I hoped it would be.  It was more of the, "If it's concave, you're probably fine and your baby is probably dehydrated.  If it's bulging, that's serious.  Call the doctor.  It's probably an infection, meningitis, hydrocephalus, AHHHHHH."  Maybe not exactly like that, but of course that's how I read it.  (I hadn't made my mental note yet, you see).  But wait, it gets worse.  Just as I was reading all the scary things it could possible be, Ryan starts screaming.  And let me tell you, the boy hardly ever cries, so when he does, you run.  So I ran back there, and in the 2 seconds it took me to get there he was already calming down, so it was probably just a gas bubble, but of course my google-infested mind looked right past the obvious.  I felt him to check for fever (because I've been checking him for it all day since Dani has one), and he felt cold and clammy.  I remember in the NICU they told me that sometimes with preemies a fever can present itself with a lower than normal temp instead of a high temp.  So I took his temperature and it was 96.8.  So now we're at the full fledged, something is definitely not right stage, so I call the pediatrician on call and explain the situation.  And of course, she says he needs to be seen at the ER. So, Dave had to take him in at around 11pm because I needed to stay with sicky Dani who would be beside herself if she woke up in the middle of the night (as she did 3 more times while he was at CHOC) and found out that mommy wasn't there.  So Dave really stepped up and took charge with Ryan and off they went to CHOC.

So you see, we weren't THAT crazy to take him in because there were some little symptoms there, and the pediatrician told us to.  I even called the small baby unit at CHOC to see if any of Ryan's old primary nurses were working, and I got to talk to Natalie who promised she would go visit him if he ended up getting admitted.  Well, when they got there, Ryan's temperature was still low (97.0) so they put him under a warmer and gave him some blankets.  Then the ran a bunch of tests to make sure it wasn't any sort of infection.  Praise God, every single one of those tests came back clean.  They did a chest x-ray and said his lungs looked clear.  They tested for RSV and said he didn't have it.  Then I get a call from Dave at 4am saying they are going to keep him overnight.  What the what?!  I couldn't understand.  He said it was something about him having the low temp plus they saw slightly elevated white blood cell levels.  So, I asked him to let me talk to the doctor who just happened to walk in the room.  I asked if the elevated levels could've been because of the RSV antibody shot they just gave him on the 4th, and did we really need to keep him there overnight if he wasn't showing signs of being actually sick, etc. and he agreed that we could bring him home and just keep an eye on him here.  That was definitely an answer to a prayer.

Oh, and as for the soft spot bulging, they didn't even think it was a big deal.  They said if it was something concerning, there would be other symptoms and you would know.  Well, actually doctor, YOU would know.  I would not.  That's why I read google.

So, the best part of this whole thing?  We knew the day would come when we would have to take him into the ER, and we knew there was always a chance of him getting readmitted, but we survived this first scare.  Ryan passed this little test with flying colors.  And the part that actually made me chuckle was the discharge paperwork that said on the front:  Patient was treated for - Hypothermia.  Yup, we are officially those parents who took their kid to the ER because he was a little cold, and all we had to do was give him an extra blankey.  Embarrassing.  But we are so, so thankful that it turned out this way.  Now we just need to keep praying that Dani gets better and we all continue to keep this nasty bug at bay.

Crazy.

Once again...CRAZY times in the Aprea household.  I'm sure that will be a running theme for the next year or two, but we're really becoming very competent in dealing with the crazy.  If any of you ever have any crazy you need help dealing with, please, feel free to call us.  We've got plenty of experience!

So, crazy day part 1.  Morning edition.  Eileen (the home nurse) and I drove Ryan out to Arcadia to meet with the baby contact lens guru, and let me tell you, she really was amazing.  We spent a few hours with her examining his eyes and figuring out the perfect prescription for his eyes.  I really still didn't believe she was going to have me put in and take out contact lenses from a 8.5 month old baby's eyes every morning and night, but she assured me that parents just find a way.  And, well, we've become the king and queen of "finding a way" so I'm sure we'll be fine.  But OMG did my eyes water every time she took them in and out.  In fact, my eyes are watering now just typing about it!  The lens that is going on the right eye to replace the lens is super thick, it almost looks like she took a crescent off a marble and stuck it on his eye.  But once he had it in, Ryan didn't seem to mind as much as I did.  The other contact lens in the left eye is correcting myopia, which is extreme nearsightedness.  The lens for that eye looks much thinner and more like what you'd normally expect a contact to look like.  She popped them in the first time and then used a yellow dye that looked like highlighter ink to see how they fit.  She would shine the dye with a blacklight and it would light up purple.  It was interesting to watch, but we're still wiping highlighter-yellow eye boogers out of his eyes.  The best part of the whole day was once he had the contacts in, the shiftiness of his eyes dramatically decreased.  We all noticed it.  The lenses he tried today were more for sizing purposes, but they were close to what his prescription will be.  He was definitely trying to steady his gaze and LOOK at things when he had them in.  It was quite an emotional moment for me.  We'll be going in next week to pick Ryan's contacts up and get some more instruction on how to put them in and get them out, so wish us luck with that! 

Crazy day part 2, afternoon edition.  When we got home from the appoitment, Dani was still napping with my mom watching her at my house.  Poor thing woke up twice in a sweat.  She's been running a low grade fever since Wed when she got sent home from school, but today she seemed worse.  So when she woke up from her nap completely soaked and crying that her throat hurt, off to the doctor we went.  She's always so healthy, it was strange going to the doctor with her instead of Ryan.  They did a rapid strep test since I just had strep, but it came back negative.  They still want to start her on the antibiotics because there is a chance of a false negative on those tests.  We'll get the regular test results tomorrow. In the meantime, she is feeling awful and asked me to put her to bed at 5:45.  She's got Tylenol and Amoxicillin on board and she's sleeping comfortably, so we're praying she'll wake up much improved in the morning.  I hate seeing the poor girl so sick!  When I put her to bed early, she skipped the usual two books we read, but she did ask to pray.  So I prayed for her strength and healing and I told her God would be watching over her tonight and Jesus would be sitting with her with His arms around her, and she was very pleased with that.  Then she said, "And Santa will be here kissing me, too."  That little girl has so much love in her, we love her so much!

So tonight we're praying that the men of the house can stay strong and healthy and not catch this nasty bug we have going around.  Thanks for always supporting our crazy. ;)

Lungs, Stomach and Eyes Update.

Lots to update, where to begin.  We'll start with the lungs.  On Tuesday I took Ryan to get his 2nd synagis shot to help prevent RSV, and he had a check-up with his pulmonologist.  She said that his lungs still sound clear, which is great.  There was a note in his file from the PPHN clinic that suggested maybe we could wean down his oxygen a little at this appointment, but she didn't want to do that quite yet since we just weaned down to .5L and he's not gaining weight as well as they'd like.  Weight gain seems to be quite the topic, which I understand.   She mentioned that weaning the oxygen can contribute to a plateau in the weight gain because if he's working harder to breathe then he's burning more calories even while resting.  So I'm glad they aren't going to wean his oxygen any further until we start to see more weight gain. 

Not much to update on the stomach other than increasing his feeds and we scheduled his Mic-key button placement surgery.  We have added the 22 calorie fortifier to his breastmilk, and he's tolerating that fine.  We've also increased the volume of his feeds, and he's doing ok with that, too.  He even slept all the way until 5:15am this morning!  He'll go in the day after Christmas to have the peg g-tube switched out for a Mic-key button.  This button is hard to explain, and I'm a visual learner, so I'll just include a link in case you want to see for yourself.  Basically, he's going to get the more low profile/skin level tube so that as he starts getting more mobile the tube won't get in the way.  You can check it out here:  http://www.mic-key.com/products.aspx

Now for his eyes.  This morning a very nice lady from the Braille Institute came to our house to meet Ryan and start working with him to improve his vision and visual brain development.  This was such a great meeting for ME because she was able to show me that he really IS able to see things!  She had all these great toys and lights she was able to use to get his eyes to look at objects.  She left me with a cool colorful flashlight to work with him at each diaper change, and the Institute is going to send him a little care package of other great things to use with him for visual play.  She said there were so many things he was doing that she was really impressed with.  For example, he sucks on his pacifier really well, he brings his hand to mid-line to grab his little stuffed paci holder along with some other toys we have, and he really did look at her face and seem to see her and interact with her (complete with his gummy little grin!).  She said those were all really good signs for his brain development.  I told her about the mild hydrocephalus they had seen in the last head ultrasound, and about his hearing issues, and she was very positive about everything.  She said that sometimes after being born so early and going through so much in the hospital, some preemies just sort of shut down their development as a sort of survival mechanism.  Now that he's home, he's already showing improvement in leaps and bounds.  She also said that the extra fluid in his brain, whether it's true hydrocephalus or not, could be contributing to the hearing issues, and it could be something he will grow out of.  I'm really optimistic for Ryan after meeting with her, and SO glad she will be coming to work with Ryan every other week.  Such a blessing for him.

That's it for now!  Our family has been busy decking the halls and trimming the tree in anticipation of the Christmas holiday, and we had a wonderful day of family and rest yesterday for my birthday.  My facebook friends already saw the video of Dani singing happy birthday to me, and I'll post the 2nd awesome gift I got that day when Ryan started squeaking his Sophie toy for the first time.  Those two kiddos made this year's birthday just so much more amazing.  It's crazy to think that one year ago today I first found out about the complications with Ryan's pregnancy and started bed rest.  Now here we are celebrating the season as a family of four.  God is good.

Where have we been, you ask?

 Well, it's been a busy set of days for sure.  Thursday you already know was full of appointments.  Luckily on Friday, Ryan got to rest at home, I got to rest at home, and Dave had to take the day off to take care of us. All I have to say about the whole thing is, thank God for antibiotics. I finally felt human again after about 36 hours on the meds, and :::knock on wood::: it appears that we escaped anyone else in the house catching it! Those are some definite answered prayers right there!
So, as for what we've been up to, here's a brief snapshot. Warning, this post is super picture-heavy. :)    

My brother's girlfriend, Monica, signed my parents, Dani and me into Disneyland on Saturday.

If Dani had a favorite princess, it would definitely be Cinderella. Or Rapunzel. Or Ariel. :)

They made me wear a button so that all of the cast members would have to wish me a happy birthday!

First time on the teacups. I'd say she liked it. :)

2012 will henceforth be known as the year that Dani finally liked Santa.

As if Disneyland wasn't enough fun for one day, my family came over and brought me a birthday dinner complete with candle-lit cheesecake!

No update would be complete without some pics of Ryan! For some reason I have a sleep theme going here, but he is staying awake and so alert for longer and longer each day.

I just think it's so cute how he falls asleep holding onto his little stuffed paci holder (Paci Plushies). This was from last night.

And this one was from tonight. lately after I read his book, he actually gets upset if I don't give him my finger to hold onto. Then he closes his eyes and starts to fall asleep while I sit with him and let him hold my finger. It's the sweetest thing, and such a great feeling now that he's getting more aware of us being there with him.

He's been doing really well. Still sats 97-100 when we hook him up to the pulse-ox at night, even on .5 liters. He's eating more and more, but mostly through the tube. The GI doctor wants to keep working on his weight gain, so we are adding fortifier back into his milk, but only 22 calories, and we increased his feed amounts. We've been working on stretches and tummy time at home to help his physical development. He's getting slightly better at trying to lift his head up and look around. He'll get there. :) We still love his new nurse, and we're looking into getting another nurse trained with him for back-up/possible weekends. Thank you for the continued prayers, love and support. We appreciate all of you!


Wawwdddfs

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.