Pulmonary Hypertension Update

On Monday, I brought Ryan to CHOC for the Pulmonary Hypertension clinic.  I like this appointment because we get to meet with the pulmonologist and the cardiologist at the same time.  It's a once a month clinic, and we got lucky this month because both of the doctors working the clinic are ones who know Ryan well.  Dr. Y has been his main pulmonologist since his NICU days, and Dr. Doshi is the cardiologist who has seen him the most, and was the one on duty when he had the abnormal EKG during the Mic-key button procedure while he was sedated.  As soon as they walked in, they were so excited to see Ryan and gushed over how cute and chubby he is. :)

They listened to his lungs and said he was sounding good.  They checked out all his current meds and didn't want to make any changes.  Our echo was originally scheduled for last Friday so we could get the results before this clinic, but their office had to reschedule so Dr. Doshi said she would come see me after his echo this Thursday to see how his PPHN was looking.  The echo looked pretty good, but the pressures are still measurable.  Last time they were in the 40-50 range, and this time they are in the 30 range, so the PPHN is still mild and slowly improving, but not gone.  We are going to keep him on the same dose of the meds and not increase for his weight, and then we'll follow up in June.  If the pressure numbers have improved, we'll keep chugging along until it's gone.  If they go up, we'll increase the meds to adjust for his weight gain.  So, let's keep praying that this PPHN just kindly shows itself out the door and his right heart pressures get back to normal.

While I was at the clinic, I took the opportunity to ask a ton of questions since it was 2 doctors who know him well.  First off, I told them about how he wakes up coughing and congested every morning.  Some mornings are worse than others, but that particular morning had been really bad and he had thrown up twice already.  They felt like we have already maximized his reflux meds, and that it's probably the gunk in his lungs from this lingering flu season and general inflammation coming up and gagging him that's making him throw up.  But, since it has been a lot better and he doesn't throw up most days anymore, we're just going to keep doing what we're doing and hope he just grows out of it.

Speaking of growing out of things, I asked when they thought he might grow out of the oxygen and cannula.  The last pulmonologist I asked said it could be anywhere from 2-5 years.  Dr. Y was more encouraging.  She said when we check him in June, since flu season will be over, we can start talking about trial weaning then.  I'm not personally 100% sure he'll be ready, but at least it feels good to know that she thinks it's a possibility that soon.  I told her how sometimes at night he rubs his face and gets his cannula prongs up over his nose, and even though he doesn't wake up, we get woken up by his pulse ox alarming because he desats to around 89-90 (normal is 95-100, and his alarm beeps if he goes below 92).  Dave and I were talking about it, and wondered if maybe his lungs are just so used to the oxygen that they desat when it stops going in, but if we left the prongs out a while, maybe his lungs would adjust and slowly get his sats back up to normal.  So, I asked her about that, and she said it doesn't work that way.  If he desats without the oxygen, then his lungs definitely need that support still.  But even after hearing about this, she still felt like we could look into weaning in June.  She even said, "I feel pretty confident that by next flu season he's going to be strong and much more ready to handle it." 

They did comment on how even though he got RSV and has had some lingering inflammation that he has handled this flu season extraordinarily well.  They said so many babies like him have ended up hospitalized for longer periods and even ended up back on the ventilators to help them get through it.  Our little fighter just plowed through with some short hospital stays and a little extra support from the high flow nasal cannula, but nothing more than that.  I truly believe this is a testament to his inner strength as well as all of our thoughts and prayers working their power to heal.  He is a daily reminder of the power of prayer and God's ability to heal and give strength.

Other updates: 

PT and Feeding Therapy:  We used up the 20 sessions covered by insurance, so now the Regional Center is arranging for Cornerstone Therapies to send out therapists to our home to work with Ryan 4 hours a week.  They've already started with 1 hour a week so far, and we are so pleased with how great they have been.  We will miss our CHOC therapists, but it's so nice not to have to take him out of the house, especially during flu season.

Vision:  We have not been using the contacts for a few weeks now, and we are noticing a good improvement in his ability to track and reach for objects.  He still doesn't make eye contact or notice our faces very frequently, but he seems more comfortable without the contacts in, and he's definitely seeing things.  We have 2 eye appointments in early April, so we'll be able to find out more about what we should do with the contacts then.

Hearing:  I can't tell you the issues we've had dealing with the hearing.  It's probably 2 whole blog posts on its own, and those of you who see me in real life have probably already heard enough about this.  So I'll try to be brief here.  Sometimes the medical system SUCKS.  That pretty much sums it up. ;)  I'll try to elaborate more for those interested when I get the chance, but here are the basics.  First, we found out that the hearing coverage that we thought was going to be provided by CCS is not going to be provided anymore because we are not financially eligible.  Second, we found out that the CT scan we had done, the one where I had all those crazy issues with scheduling, was never actually cleared by anyone medically even though I was told it WAS, and because of his PPHN he really should NOT have had it done.  Thank God nothing went wrong, but I've since spent a lot of time on the phone with the office manager of that particular office because I would hate for any other kids to get scheduled for sedation and/or procedures that they aren't medically ready for.  Our MRI which was scheduled for April 9th will also be postponed until probably after June when we can get his PPHN checked out again. 

I think that's it for now, but I'd hate to end on a negative note, so I'll tell you some stuff Ryan's been doing.  He's getting better at holding his head steady!  He loves when I hold him on my leg facing me with one of his legs on each side, and he can push off the ground while I support him under his arms and help him bounce.  If I clap his hands together, he will laugh the cutest laugh you've ever heard.  It's almost silent, probably because of his little raspy voice, but he just gets this huge grin and does this wheezy/raspy laugh.  It's adorable.  And he's tasting more and more food.  He loves squash and peas, but isn't a fan of mango.  Weird, right?  Alright, that was a much better way to wrap this up.  Thanks for all the love and prayers!

1 Year Update!

Feeling so blessed that I even get to type this update.  It's definitely been a crazy, bumpy road to get here, but we made it.  And things can only get better from here!  I'm already starting to feel like a bit of the burden of the constant doctors' visits is lightening up, and now that we've hit our 20 therapy session limit that's covered by insurance, the Regional Center is going to take over and they send someone out to our home to see him.  So, slowly but surely, life is getting a bit more normal. :) 

Now for some updates on our superman.  He had his 12 month well check today, and his pediatrician was pleased with his growth curve, as was I!  He's actually ON the charts, which is huge!  He's got a pretty steady foothold on the charts for his adjusted age (8.5 months), but he's even starting to creep his way up onto the charts in some areas for his ACTUAL age of 1 year, which is fantastic!  Here's where he's at now:

Weight: 17lbs 7.6oz (20% adjusted/5%actual)
Height: 26.5in (5% adjusted/not on the charts for actual) 

Head Circumference: 44cm (45% adjusted/15% actual)

She said his lungs sounded great, no wheezing at all.  He was so smiley and happy for her, and even showed of his first tooth that's popping in on the bottom.  The singlulair that pulmonary started him on really seems to be helping.  They said it would take a few weeks to kick in, and the last 2 days he's woken up with barely any cough.  On top of that, he hasn't thrown up in 3 days now!  (Please God, don't let me have jinxed that one!)  Overall, he just seems so much more healthy.  Hopefully it's a sign that this flu season is coming to and end and he can finally enjoy getting out of the house and exploring the world a bit more.

Speaking of exploring the world, he's been moving himself around a lot more lately.  If we let him play on his back on the play mat, he will swing his legs side to side and even roll from back to belly now.  He's not doing it completely on his own every time, but he HAS done it, which is huge!  He loves getting a little help from mommy or grandma if he gets stuck. :)  When he's not in the mood for rolling, he'll kick his legs up and down and push off to scoot himself back all the way off the mat, sliding on his back head first.  The other day he slid himself in a circle so he ended up perpendicular to where I had originally laid him down.  It's great to see him feeling good enough to really work those muscles and try to make himself more mobile in any way he can.

As for feeding, he's still experimenting with different tastes and textures.  He tolerates purees ok, most days he seems to like squash and bananas the best.  He's not a huge fan of carrots.  We recently let him try a mum mum rice cracker just for a new type of feel in his mouth, and that was a hit.  He first broke it into pieces so he could hold a chunk in each hand.  Then he brought one of the pieces right to his mouth and started gnawing on it.  He didn't get a lot down, but he definitely played with it for quite some time and all that really matters is that he continues to like doing it. So, hopefully we're heading in the right direction with his food.

He's just waking up, so I'll have to cut this short.  Thank you for all the birthday wishes!  I'll try to post some pictures later. :)

CT Scan Results

I've been on pins and needles all day waiting to type up this post, and there's quite a story to go along with this, but I'll put that at the end so I can get the best part out of the way for you.  The doctor said his CT scan looked "pretty normal"!!  I'm not sure what he meant by that "pretty" part, but whatever, I WILL TAKE IT!  He said that the cochlear bone is present and formed, which means that Ryan will be a candidate for the cochlear implant!  I cannot tell you how thrilled we are.  Thank you all so much for praying and sending him positive thoughts.  I know these miracles are not small feats, and your prayers, all of our prayers, are definitely being heard.

So, for those not in a rush, here's the story to go along with this.  I really cannot understand how I ever navigated the health care system before I was forced to learn the ins and outs like this, and even now they STILL manage to let things slip by me!  I only share these stories because my hope is that if anyone else (God forbid) has to deal with doctors offices for whatever reason, they will have a little bit of an edge knowing the things that I'm learning from experience.  So here goes:

Last Friday, as you all know, I called the ENT office to find out when we would get the results of the CT scan.  They told me they would request the images on Monday and then it would take a few days to get to them, so if I didn't hear back from them by Friday I should call them.  OK, fine.  So I waited ever so patiently until Friday (today) and I called them back this morning.  I was told that the computers were down, so she couldn't check his file to see if the images were there, so she would call me back later when the computer system was back up.  OK, fine.  I waited a week, what's another few hours.  Afternoon came, and I thought to myself, if they don't call me back by 3pm I am calling again because these offices typically close early on Friday and then I won't hear from anyone until Monday, and that ain't gonna fly, as they say.  So 3pm rolls around and I call back. 

Me: Hi. I'm sorry to keep calling, I called earlier about my son's CT scan results and the computers were down. I was just checking to see if they were working again.
Receptionist (R): What's your son's name? :::I give the name::: Oh, yes, the system is working again.  Let me check and see if we got his images yet, can I put you on hold?
:::really lame and depressing hold music:::
OK, it doesn't look like they sent the images.  I'm going to have to request them, and it can take a few days for them to get them to us.  Can you call us back, oh, maybe next Wednesday to see if we have them?
Me:  Ummm, actually, this is the same speech I was given last Friday when I called and you guys told me you would request them and Monday and had me call back today if I hadn't heard back from you.  So, here I am.  Is there any way we can expedite this a bit?  We need to get the ball rolling on my son's hearing aids.  Can I call St. Joseph's or CHOC myself?
R:  Can I put you on hold one more time? 
::::more lame music::::
R:  OK, it looks like the images are here.  I'm going to put you on hold and then transfer you to the doctor so he can go over them with you.

Praise the Lord, it was a St. Patrick's Day miracle.  Or, doctors' offices would rather put you off a few more days than actually check and see if the images you are requesting are actually there.  I'll let you decide. ;)  Either way, we are still praising the Lord for the wonderful news that the CT scan showed, and we are even more hopeful that our little guy will be able to hear our voices!!  The next step will be an MRI (there's a WHOLE other long story that goes along with this one, I'll spare you today) so they can get images of the actual nerve.  I'm working on getting that scheduled as I type. :)

One Year Ago Today...

It seems that I'm playing this game a lot in my mind lately.  Starting in December.  One year ago on December 5th I was out with Dave watching Twilight and eating at the Yardhouse for my birthday.  One year on December 6th, I took my 5th graders on a field trip and started to feel really crampy.  I was 10 weeks pregnant, but nobody at school knew yet.  One year ago that same day, we rushed to the ER for major bleeding, worried out of our minds that we were losing another pregnancy.

Every major event (Christmas, New Year's, Valentine's Day) and even lots of random dates in between that stick out in my mind still as days I had appointments or other crazy contraction/bleeding episodes keep popping back into my mind as "One year ago today" memories.

Today is a big one.  One year ago today, I made it to 24 weeks.  After 14 weeks on bed rest at home, my OB wanted me to be admitted into the hospital for closer monitoring.  One year ago today, I thought I was going to be living in the hospital away from my family for 15 more weeks until my scheduled c-section date on June 26th.  I had no idea what was in store only one week later. 

My amazing family and friends helped me through this trying time.  My mom took Dani every day while Dave was working.  Then he would pick her up after school and bring her to the hospital to eat dinner and hang out with me before bringing her back home and doing her bath and bedtime single dad style.  And while they only had to do it for a week as things turned out, they went into it knowing full well that this could be the routine for the next 3.5 months.  And they didn't even hesitate.  My amazing friends called, texted, kept me entertained and busy on the computer, brought me books and magazines to read, etc.  I don't think I ever got a chance to properly thank everyone for helping me (and Ryan) through that time in our lives, so I'm doing it now.  I'm eternally thankful for all that you did to encourage and support us.

One year ago today, I was feeling depressed that I wasn't going to get to see my daughter grow up for 3.5 months of her young life.  I feel so selfish now.  I never should've complained about being "stuck in the hospital" because I'd give anything to have been stuck there even just one more week if it meant Ryan could grow a little bit more inside me.  I probably have a bit of PTSD, and I know we did EVERYTHING we could to keep him in as long as possible.  I guess I'm just putting this out there in case there are others reading who are in the same boat. 

I was constantly researching, wondering if bed rest really was the answer.  So many people with complicated pregnancies said, "My OB doesn't even think I need to be on bed rest.  S/he just told me to take it easy and rest if I start to feel tired."  I'm here to tell anyone willing to listen that there are times when you really need to trust your own body and take the signs seriously.  Bed rest is hard, but it's one of those things you hate while you're doing it, but then when you don't have the chance to do it anymore, you wish you could have it back.  And coming from me, who was on bed rest for 15 weeks and still ended up delivering way too early, it probably seems contradictory for me to encourage bed rest.  I imagine the skeptics saying, "Well, you were on bed rest so long and it didn't even work for you!"  I truly don't think we would've made it that far if we hadn't been so strict about it for the 15 weeks I got to do it.  So, if anyone asked me if bed rest works, I would respond with a resounding yes.

Thanks for letting me get this out there.  These milestones leading up to his birthday, all these "One year ago todays", have been harder on me than I expected.  But, I'm so incredibly thankful that they are memories of trials that Ryan was able to overcome and not memories of loss and mourning.  It could've been so, so much worse, and I know that.  We are truly blessed.

In other news, we're still waiting on the results of Ryan's CT scan.  He's getting better and better at tummy time and tasting purees.  Day light savings time was pretty good to us (I'm typing this now as I'm waiting for both kids to wake up). ;)  And we are so amazed at all of your awesome generosity to Ryan's March for Babies team.  He's made it to the top 10 family teams for our region, and he's not far from making it to the top 5!!  All of your prayers, support, and generosity are such an amazing blessing in our lives, so thank you.

Weekend Update

I wish I had more to update about the CT scan, but I called the ENT office after we got home to see when we would get the results, and they said they would contact CHOC to get the pictures on Monday and should get them by later in the week.  Then they'll call us to set up an appointment.  If they don't call by Friday, I'm supposed to call them back.  Does this seem super inefficient to anyone else?  I mean, I get that this isn't life threatening, but we'd really like to know what's going on and get the ball rolling with hearing aids if they'll help him.  Wouldn't you think they'd just set an appointment for next week and work to get the pictures before then?  Or better yet, just tell us over the phone as soon as they get the pictures?  Obviously they aren't used to this impatient mommy.  I might have to call them on Tuesday just to check how things are coming along. ;)

But, I can say that Ryan did REALLY well with the sedation.  We talked about his history and I told the anesthesiologist that he had a bad reaction to Propofol last time, so they didn't even do an IV, they just used gas to put him under.  I actually got to walk all the way in with him and hold his hand while they gave him the gas and rub his fingers as he fell asleep.  It's not exactly fun to watch, but I was glad I got to hold his hand through it so he would know I was there.  I only had to wait in the waiting room for like 20 minutes, then they brought me to the recovery room.  He was already awake and looking around happily like nothing had even happened.  The nurse commented on what a happy baby he is.  The anesthesiologist came by and said that they were keeping an eye on his ST waves the whole time, and he never even had a dip, so that was good news.  After a few minutes in recovery, his sats were back to normal so they brought us back to the Short Stay Unit, where they took his stats one last time and said he was ready to go home!  It was such a great feeling to have everything go so smoothly, thank you all for the prayers and positive thoughts that helped us through the day!  I will let you know as soon as we get the results of the CT scan.  Keep praying for that miracle!!

Another Big Day Tomorrow.

It's amazing how some days you really notice the power of prayer and how God has His hands in all of this.  I know we've been asking for prayers a long time now, almost a year, but I just wanted to share with you the evidence we are seeing that the prayers are working. 

This morning, as we were getting Ryan ready for his physical therapy and feeding therapy appointments, I handed him his pacifier.  Actually, I didn't hand it to him, I put it a few inches from his face, and he reached out and grabbed it from me and popped it right into his mouth.  It's the little things that get us going around here, but honestly, this wasn't very little for a few reasons.  First of all, it was some serious hand/eye coordination.  And second of all, I just said "eye" coordination.  My man, WITHOUT his contacts in, reached out and grabbed his binky from my hand.  So yeah, he saw it.  Without the contacts. 

So, we decided to conduct a little "medical" experiment.  Don't worry, no babies were harmed in the process.  We decided to leave his contacts out and see if he acted any differently.  It's funny because we've lost his contacts before, so he's had these periods where he wasn't wearing them, and we did notice during those times that he still acted like he could see certain things, especially light.  But today was nuts.  I took him to his therapy appointments and I let both therapists know what we were doing, and they were intrigued as well.  Our PT, Noelle, started to notice little signs that he could see without his contacts as well.  Then, she held out the little binky with the Paci-Plushies monkey on it, and he locked his eyes right on it and grabbed it to pull it into his mouth.  She was amazed as we were that morning.  To further the intrigue, his ST/FT, Kerri, held out some green mardi gras beads a few inches in front of him when she found out he was sans contacts, and he reached out and grabbed for those, too!  Now, I've always believed in miracles.  Even more so after Ryan was born.  But I have been praying so hard for a miracle for our little guy's eyes and ears, and I'm REALLY hoping that this is just the beginning stage of an answer to all those prayers.  The human body is so perfectly made, and it's capable of so much.  God willing, Ryan is finally starting to figure out how those eyes of his work, and things continue to improve!

Since we are seeing so much progress in the eye department as far as miracles go, we're sending out this prayer request for tonight to help out in the hearing department.  Tomorrow Ryan will be sedated for his CT scan of his temporal lobe.  This scan will tell us what the anatomy of his ears looks like and will let us know what kind of damage (if any) we are looking at.  I've been doing lots of research on this, and I'm still holding onto hope for a miracle that maybe the hearing loss is just trapped fluid plus bad test results since he has oxygen flowing through his sinuses 24/7.  Obviously, I can rationalize away anything, but there's always hope, right?!  So, please pray if you are so inclined or send Ryan some good thoughts tomorrow that he tolerates being sedated, and that they get some really great images of some healthy miracle ears.  Or at least ears that can be helped with hearing aids or a cochlear implant.  It's been a while since I've been on pins and needles for a test, but this one is a pretty big deal. 

Thank you for the love and support, always.  And here's praying for more miracles!

The Latest.

First of all, I just need to start by saying I'm in serious denial that Ryan's birthday is this month.  It really just can't have been a year since everything in our world changed so much.  We won't be doing anything big for his actual birthday with it being flu season still (plus, he can't eat cake yet, so really, what's the point of a big party without cake?!).  But, I'm sure we'll throw down for his adjusted birthday in July...so, watch out!

Here's the latest on our little man:


Pulmonary:  He had an appointment on Friday to get what was supposed to be his last synagis shot to protect him from RSV.  Luckily, or unfortunately if you ask him, they are going to ask our insurance to cover one more shot since this has been such a brutal flu season and he's still at such a high risk for RSV.  So we'll have one more dose in a month.  Our little guy rarely cries, but man, this shot (actually, I should say shotS since he has to get 2 now, one in each thigh, because he's over a certain weight) really brings on the screams and tears.  It's such a necessary evil. 

I asked Dr. Pornchai about his morning coughing fits.  He sleeps fine all night but then wakes up in the morning and starts coughing like crazy.  It's been quite a few weeks now, and this is part of what got him admitted about 2 weeks ago when they couldn't figure out why his sats were low.  We've adjusted his reflux meds, in case it was reflux related, but it hasn't helped.  Dr. Pornchai wants us to add Singulair to his list of medicines.  I was so desperate to find him some relief from this cough, I agreed to try it, but (of course), when we called CVS to find out about picking it up that night, they didn't have the proper authorization from our insurance, and it would have to wait until Monday.  Thank God this wasn't a life threatening medication, right?  I can't tell you how many times we've had to deal with this nonsense...but I digress.  Since we were going to have to wait anyways, I decided to do a little research on Singulair, and I wasn't too thrilled about some of the side effects parents were seeing in their kids when they put them on this.  So now, instead of filling the prescription on Monday, I'll be calling pulmonary back to talk to one of the doctors who knows Ryan a little better to see if they agree that he should be on this.

In the meantime, we've been trying some more "natural" ways to help his cough in the morning.  We make little adjustments in his feeding/meds routine and see if it makes a difference.  Today has been the best morning yet, so we're hopeful that what we are doing is working and we won't need to add the med at all. 

GI:  Ryan's still doing ok on Similac Sensitive, and like I mentioned, we are tweaking his feeding schedule a little bit to see if it helps with the coughing in the morning and the throwing up throughout the day.  He gets 6 feeds a day of just over 5 ounces, and we space them out every three hours from when he wakes up until he goes to sleep.  Today, one of the changes we made is that we are increasing the rate of his feeding pump, so he's getting his feed a little bit faster.  We are hoping it will help with his reflux and gassiness, and if it works, it has the added benefit of allowing us to pull him out of his seat to play with him and get him some exercise since he won't be hooked up to his feed as long.  So, fingers crossed it works! 

He's also been experimenting with various purees.  So far he has tried: squash, sweet potatoes, bananas, blueberries, cherries, yogurt, apples and carrots.  His feeding therapists have been really impressed with his willingness to try new foods and even grab the spoon and play with it in his mouth.  He doesn't have much of an oral aversion, he still just has a really hard time figuring out what to do with the food once he gets it in his mouth.  A lot of times, if it's a little more than he can handle, he just holds his tongue frozen with the food sitting on it and looks at me like, "OK...what do you want me to do with this now, mom?!"  We're still working on it, but we are very encouraged by how much he seems to enjoy food and is willing to work with it without getting upset.

Physical Therapy:  Physically, Ryan is definitely getting stronger.  His stomach doesn't quite feel like a big ball of jelly anymore, he's actually getting a little bit more core strength there, which is great!  He loves to lay on his play mat and grab at the hanging toys.  Today he even scooted himself backwards on his back about a foot while we were watching him!  He rolls from side to side, but hasn't quite mastered getting himself all the way over yet.  He loves using his feet to kick at things.  Right now as I type, he's in his bouncy seat getting his feed and he's kicking away at a shiny pinwheel Julie from the Braille Institute brought for him.  I just took a picture to put on this post, and he yawned at me and fell asleep.  Good timing, buddy! 

Hearing and Eyes:  Ryan will be getting a CT scan Friday, March 8th.  We could use some extra prayers for him that day.  We are praying for some good news, that his hearing loss will be treatable with hearing aids or a cochlear implant.  We also pray that if they do end up sedating him, which it sounds like they are planning on, but I'm still waiting on confirmation, that things go smoothly and we don't have any issues like last time.  I will definitely make sure that they don't use propofol, but if there's any way to avoid sedation, we'll be looking into it.

Ryan has been enjoying having both contacts back in his eyes.  We're on a nice, long streak of them not popping out, thanks be to God!!  We are extra vigilant about checking to make sure they are still in his eyes anytime we move him so that if they do pop out, we know where to search.  I wish we could say that he's seeing better with them in, but oddly enough, it's hard to tell.  It's like some days he will see any toy we hold out in front of him for him to grab, and other days I can put my finger right in front of his eye and even touch right next to his eye and he won't even flinch or notice it's there.  Today has been a good day with him reaching for objects and noticing things, so we are continuing to pray for his eyes to work and heal and grow. 

And finally, another fun first...big sister Dani wore her first pigtails!  It only took her 2 years to start growing hair, and there's finally enough to pull it up!  She kept them in for about 3.7 seconds, but it was just long enough for me to snap some picture while she proudly admired herself in the mirror. :)