Good morning world!

Ryder has made some more [slow] but steady progress the last couple of days.  His breathing rate on the ventilator has been decreased to 12 now so he otherwise has to take his 25+ breaths a minute on his own.  His creatinine (kidney function) still isn't normal but despite a lot of lasix it is holding steady.  ECHOs have shown his heart function is still doing well and he is now of dopamine and epinephrine! 

He has had some extra heartbeats here and there - so far his blood pressure does fine with this, the EP (electrophys) cardiologist will see him again today to see if they would recommend doing anything more about these extra beats.  The only other big event is another clot was found on his subclavian line -- not really sure why because he has been at a good level on his heparin -- but the IV line was pulled out yesterday and he's on a new anticoagulant today (argatroban).  There may be a small increased bleeding risk on this med (it's a lot newer so less data) but hopefully overall this is a small issue in the grand scheme of things!

This morning, Ryder's milk is being held with hopes he can get his breathing tube out tomorrow.  The ICU team doesn't want us to get too excited about that but WAY too late on that.  I am already giddy.  Once that and his arterial line come out we will get to hold him again.  It has been 24 days since our little guy has been held - that is WAY too long!!!

For now, look at those bright eyes!  One would never know he's still on morphine and versed drips... 

We will be praying of course for that ETT to be gone before his next photo op but more importantly for it to STAY gone after it's removed the first time!  Extra prayers needed if you know how Saturday morning rounds with a new attending on service usually go.... "Let's hold the fort", "Doing well, let's not rock the boat", "Ok, so we'll just keep monitoring".  Sounds familiar, right? :) 

Happy 1 month birthday!

Ryder James, 28 days old today...

Age 24 weeks - fetal cardiac cathterization with attempted stent placement and atrial septoplasty
Age 0 days - entered the world stable despite "highly lethal" HLHS with intact atrial septum
Age 7 days - Norwood surgery with BT shunt
Age 7/1/2 days - shock and placement on ECMO
Age 9 days - intraventricular hemorrhage
Age 9 1/2 days - shock when removed from ECMO
Age 10-12 days - acute renal failure
Age 20 days - right atrial thrombus
Age 27 days - sternal closure

Age 28 days - improved cardiac function, improved tricuspid regurgitation, improved blood pressures, smaller atrial thrombus, NO intraventricular hemorrhage, back on enteral feeds, weaning off drips, hydrocortisone AND the ventilator.  And listening to mommy read Peter Pan.

The hat says it all. 

Happy 1 month birthday little warrier.  So blessed to hold your little hand every day!



GREAT day in the PICU!

After a long wait today (rather - short wait compared to the 20 days of waiting since his Norwood surgery) I am pleased to announce that Ryder's chest is now...finally...CLOSED!  I know, seems like an odd thing to be so excited about but this is the first BIG step toward getting our little warrier OUT of this ICU and soon--HOME!

Now that his chest is closed, he can start weaning off the rest of his drips, work towards getting off the ventilator and then tackle what is supposedly the hardest part (aside from the ventilator, open chest ECMO, hypoxia, etc, etc. I guess) - the feeding and growing.  I have a feeling Mr. Ryder is going to show them though.  He took his pacifier like a champ and has spent most of his wakeful time the last few days chewing on his endotracheal tube and the mouth swabs.  If he received Addy's eating genes we'll have him on steak and potatoes by May.  Right, Ryder? 

So, I got a babycenter email today...you know the ones - it's just too tempting to log in so you can see what kind of produce your fetus is the same size as, right?  "Your 18 week old is the size of a kumquat.!"  Huh? [google kumquat].  Anyway, they kindly reminded us that our 3+ week old will be soothed by a pacifier or sucking on his/her fingers.  Joke's on you babycenter - our baby is soothed tonight by morphine and versed.  Sleep tight little one!!

Thanks to everyone for all the love and support!!  We will be hoping for a good next 24 hrs as his chest pressures re-equilibrate so Ryder can move on to new and exciting goals!

Progress!

Ryder has had a great weekend thus far - his dopamine drip was titrated down, he is taking a little more milk and doing well with that and he has gotten a little more fluid off!  So...tentatively...he will get his chest closed tomorrow!  We will have to wait until first thing tomorrow morning to find out if he will go to the OR as the first case or if he will wait until afternoon, so we will keep you updated!

Playing with duckie

In the meantime, we are having a fun time spoiling Addy...she is a princess after all...



The ones with sprinkles look prettier, but glazed is always the way to go.



Headed to see Disney on Ice!



Patience

Good morning from Ryder!

He had a painfully boring day yesterday - in the ICU, I know boring is a good thing but uhhh, still painful.  He did well without his foley catheter but was slightly up on fluid intake, his blood pressure did well without epinephrine all day but some of his labs and NIRS monitor "scores" were lower so a low dose was restarted last night.  Still though nothing bad at all, just slow.  Practicing our patience.  More waiting.

Today he is looking great!!  He had a follow-up head ultrasound (no bleed), had a follow-up ECHO (clot smaller), still has tricuspid regurgitation "mild-moderate" but no other changes.  His labs look good and his NIRS scores look SOOO good today it was likely that the big and expensive monitor on his forehead (that bandaid on his forehead costs $400 I am told - yikes) was not working very well.  He was left on the epi after rounds this morning but good to know that his numbers didn't likely tank without it.  Because we are still trying to get more fluid off he was given an extra dose of lasix a little while ago and had a big wet diaper so we are in the negative fluid range now already - whoo hoo - way to pee Ryder! 

Hoping today he continues to diurese and that all his numbers remain stable.  Thankful today for Ryder's good morning, his awesome nurses & doctors and for those of you who figured out how to send him Children's Mercy ecards!  Also, thankful for cafeteria $$ vouchers (provided by lactation) that, of course I am using to buy Starbucks with, and thankful that we met our medical deductable months ago - bring on the pricey monitor stickers!! and...

VERY thankful to be learning more patience and for the ability to see the painfully boring time with a different perspective - not boring, but peaceful, with time to hope for more slow and steady progress.  It's just like this mugshot of our little warrier I took yesterday afternoon...

take away the chest dressing, NGT, dobhoff tube, NIRS monitor, ETT and tape...

and all you can see is those perfect little blue eyes!!

For in this hope we were saved. Now hope that is seen is not hope. For who hopes for what he sees? But if we hope for what we do not see, we wait for it with patience.

Romans 8:24-25

Wait and hope...

Ryder's day has gone well...

Last night, Ryder's night nurse made him a new March Madness sticker for his feeding tube, so now he is ready again for B-Ball!  After he threw up a couple times yesterday an NGT was placed back in his stomach and once that was in he was able to keep taking a little milk (which is going past his stomach into his intestine) just fine.  He had to get another transfusion this morning but we are hoping for another few days with more fluid off, closer to the goal to get his chest closed soon - maybe the end of the week, but probably more like early next week.  His blood pressure has done really well so his blood pressure drips (dopamine/epi) were titrated down again a couple times today.

Also his foley catheter was taken out this afternoon - in the grand scheme of things it may not seem like much, but he was able to pee without it,so that meant we got to change a few diapers again.  How normal.  How awesome!

Addy is still doing well this week and happy to be back at daycare, though missing the extra attention, head-bonking (and treats) from Grandpa Jim and GG.  She is still talking about her "baby bwother Wyder" all the time and has been setting aside juice, cookies and chocolate milk for him from her kitchen.  Sharing pretend chocolate milk = love!  The timing of baby brother couldn't be more perfect for her, as she seems to have readily accepted that the doctors and nurses are still "fixing" Ryder and he will come home soon.  Though, she did tell me yesterday that she will trade him with her friend Cohen for his baby Finn because "he is fun to pway with"!  Pretty sure baby Finn doesn't want to have Addy change his diapers either :) - good thing he's big enough to walk away!

We are very thankful today that week 3 is going even better than week 2; and in general for all the answered prayers!

"All human wisdom is summed up in two words - wait and hope"
- Alexandre Dumas Père

Happy 3 week birthday!

Happy 3 week birthday to our little warrier!

Today, Ryder's dopamine drip was titrated down with no adverse effect on his blood pressures, he is still diuresing well and the arm ultrasound yesterday showed no clot extended past his atrium.  Good news!  He will have another ECHO tomorrow, presumably to see if the clot is still in the same place and there is still "moderate" tricuspid regurgitation.  Not sure that I really want to know if the clot moved or if the tricuspid regurg is worse. Kind of makes you wonder why we always have to look then.  Aren't doctors so ridiculous -who else spends so much time looking for things nobody wants to find and asking questions for which there are no answers!  Hard to believe we have been here for 3 weeks now...

things are moving slower than we had hoped for but still going in the right direction, and for that we are thankful!  Well, unfortunately Ryder's cute basketball tape for his NG tube will have to be replaced since he just threw up on it, but that's ok...I still got a picture of it and now he's back to sleep...and Mr. Ryder would like everyone to know that he celebrated his 3 week birthday by pooping for the first time in 2 weeks.  Seriously - did YOU do anything that monumental today??  :)

Monday, monday

We had a busy day today -

Ryder had a good night, still with more out than in; each day looking more like a baby and less like a linebacker as his nurses say :)  His blood pressures still look great, chest xrays still look stable.  He has been more and more awake so his sedation was actually increased just a bit to this morning to keep him comfortable.  He started "trophic feeds" today which basically means putting just enough milk in his gut to stimulate it.  That is great news!  He also had a brand new chest bandage placed and since his kidney function has been stable his lasix drip was increased so hopefully the fluid will come off a little faster.

Another ECHO was done this morning and unfortunately Ryder now has a clot in his right atrium.  There was a question of it being there Friday but today's study confirmed this.  He has still been on a small amount of heparin since he has been off ECMO and the bleed seen on head ultrasound has been stable in size, and over the weekend the comparison images do not show the clot has increased in size or moved, so those are all good things.  So, his heparin was increased again and now he will need to be monitored closely for any bleeding - mostly at the site of the intraventricular hemorrhage.  Another head ultrasound was done today to get a new baseline, and will be repeated daily for now.  The clot probably started because he has an IV line going in near the atrium (a known risk) but for now the line will stay in and his left arm/neck will also be examined w/ultrasound today to see if the clot extends. That will help decide if the line should be moved in the next couple days or can stay put.

Bummer, for lack of better word, but despite risks and implications of this clot the I was dwelling on the fact that he has to stay on lovenox for a few months at least.  That is an injection.  I know, clearly there are a lot of things in life worse than injections, but still.  I cried for an hour the first time I cut Addy's finger with a nail clipper, and I know I'm not the only mommy that cried for baby's first shots.  So, under a binding verbal agreement witnessed by Ryder's new hematologist I will keep cutting the fingernails despite the blood thinner but Ross has to inject it.  Now it's on the internet too, so no take-backs!!

Just another bump in the road, but please pray Ryder's clot stays put and that he tolerates his heparin well, because otherwise he is having a great Monday :)

Peaceful...

                                                                                                          

At this moment, the ICU is quiet and Ryder is sleeping peacefully...goals for today are more fluid off and working on his ventilation...then we wait for tomorrow and hopefully there will be a decision on when his chest incision can be closed.  He has been a little more awake off and on and will watch us and his nurse move around his bed and look at his toys; he startles with loud noises and can move his arms a little better too - so fun to see him doing "baby" things.  Until tomorrow, thankful for this peaceful day!

Happy St. Patrick's Day

We have had a great morning-- Ryder's numbers today look better than they have all week.  But more importantly, he still looks like the most handsome little guy around!

I think Ryder was disappointed today to be so close to the St. Patrick's day parade and stuck in his warmer and also pretty disappointed that nobody put green food coloring in his TPN, but we are hoping by this time next year he will be enjoying a big sippy cup of green milk! 

While I was sitting here quietly this morning with Ryder listening to his lullaby's, the PICU nurses were organizing a rendition of Happy Birthday for another little guy down the hall who was turning one.  From what I heard he has spent his whole first year of life here at the hospital.  My first thought, of course, was how sad...he missed his entire first year at home & how awful for his family - it feels taxing just having been here 18 days...But then one of the nurses who was trying to get everyone motivated and off their computers said "Come on, you only turn one once."  Not sure that she meant it this way but seriously- how profound!  Despite outwardly how sad it seems to not be at home taking a million pictures of your one year old dunking their hand into a pile of icing and smearing it into their hair, that little guy just turned one!  He has obviously had a rough go but is battling on.  His family has been through a lot, but they are still by his side, celebrating every moment - because it only happens once!

Ryder and brown bear celebrating St. Patty's day in their matching shamrock socks!



Battling on!

Ryder has had a good day so far!!  Another diuretic was added back last night as his blood pressure has been stable; in fact it is so good today one of his pressure medications has been cut in half.  The steroids that were added yesterday seem to have made a big difference...Labs have been stable and he isn't requiring extra oxygen through his ventilator today.  A repeat ECHO today showed his cardiac function still looks good - possibly some tricuspid reguritation but hard to say if this was really different than last week. 

Tonight we are hoping for more urine output to get rid of some more edema - it would be really fantastic if Ryder's surgeon could close up his chest incision site early next week!!

Keep battling on my little warrier - you are doing such a great job!  So thankful for all of the positive progress today.  Thank you to everyone who has been praying for Ryder, we appreciate all of your support so much!!



Sweet boy...

Sweet, sweet, baby boy - can't believe that you are sweet 16 [days] old already!  On one hand it seems like you just arrived - like we just got you settled up in the NICU...that was a great week - after holding our breaths for about 36 hrs - there you still were, just hanging out on your prostaglandins - not needing any of those scary interventions we were anticipating.  Then we got to spend the rest of the week kissing those little fingers and piggie toes and dressing you up in cute 'boy' leggings and hats.  Well, maybe you didn't think that part was great, but we did!

But it also seems like we have been waiting forever.  You are looking so much bigger now...notably most of that is fluid, but you still look taller...and already older.  It is sad to think what would you would be up to if we had gotten to take you home 2 wks ago.  By now you would be eating well and would probably have fattened up well beyond your 7 lbs 2 oz.  We would be torturing you by laying you on your tummy and dangling toys for you to look at - some of it would probably make you cry.  We probably would already have a routine down of who would be getting up at 3am to feed you.  Daddy would want to do it but I probably would still insist it was me.  We would have already gotten bored with counting how many wet diapers you had a day.  By now you would have been cuddled by a lot of visitors, instead of mostly peeks at your picture.  We would already have thousands of pictures of you.  Addy would certainly be a fussy mess!  I am sure she would also be following you around wherever you were carried, with lots of questions and demands to carry you around the house and push you in her stroller.  It would be great to already be exhuasted by all those things...

But here you are and here we are in this ICU room instead.  You are sleeping peacefully still most of your time and that is really comforting, but it's even better when your little blue eyes pop open and you look around for a few minutes.  So far you have only gotten to lay on your back and you are just starting to wiggle your arms and legs again.  Addy hasn't gotten to touch you much yet, but she also loves to look at your picture.  So far you haven't gotten to eat yet, and you are wearing a diaper but just to cover up your catheter.  I didn't take your picture for almost a week, because I didn't want to remember what you looked like when your skin turned dusky grey or when you had the ECMO cathteters in your chest.  We are exhausted but mostly because we are trying to stay awake because that's all we can really do, is be here while your nurses and doctors do everything else.

But, today was a good day.  I would be lying if I said I wasn't disappointed you have had more fluid in than out, but one of your drips was turned down, you spent a little time awake and there were no major catastrophies.  We couldn't really ask for more than that.   And so I will sit here and wait with you, so that I can hope for all the exhausting newborn 'work' to really get started...hopefully very soon.

Night night sweet little peanut!

Slow and steady wins the race...

The last 24 hrs have been good - Ryder is on a little sedation still but seems to be pretty comfortable with this - he opens his eyes for about 15-20 min at a time then drifts back off to sleep.  This is the most fun part of the day!!  He is alert enough at these times to look around a little, move his little arms and legs and squeeze a lightly on your finger.  He also gums the endotracheal tube like he's trying to bite it in half - that's my fighter!!

This morning his milrinone infusion was turned down slightly to see if blood pressures would go a little higher ( had to get a small fluid bolus early yesterday morning for low BP); it didn't make a huge difference and his ins and outs were about equal today (we are going for negative to get the fluid off).  Kind of seems we just went in a circle and are back where we started, but again we are learning to be patient and wait.  Slow and steady with lots of prayers and faith that we will keep making progress.  Tonight the lasix drip was turned up again slightly so hopefully we will have some negative fluid balance in a few more hours. 

In the meantime, I am just trying to stay awake, so Ryder and I made this bracket based on absolutely no basketball insight, but rather using rankings related to his birthdate, weight, etc.  Seems just as good a way as any to make a bracket.  So good luck Ryder to win props for your bracketology at age 16 days.  If you don't win, no worries, you still have super cute socks!  Love you so so so much, forever and ever!!!

ESPN - Tournament Challenge - ESPN's NCAA Men's Bracket Game - jnewman730 1

Learning to sit and wait...

Ryder is having another great day today - he had to get a small fluid bolus early this morning for low blood pressure, but overall his vital signs today have looked very stable...despite the lower dose of lasix his fluid balance is negative (losing more water weight) and his creatinine is down slightly again today.  This then marks 4 days without any borderline catastrophes, an awesome thing!

So, now we wait.

Waiting seems so hard.  It requires you to be patient; to sit quietly.  It allows for you to think too much and to have to refocus those thoughts.  If you aren't careful, waiting can turn to worry; you can easily become panicky that the next moment won't be as good, that something may change for the worse, that if you put down your guard something disasterous will happen...

For those of you who don't work in a hospital, time is always, just "off" -- the day starts at whatever time morning rounds happens--this is when everything seems the most stable, the safest.  It is when everyone is paying the closest attention, when the labs, xrays and vitals have just been reviewed and all the patients just examined.  Rounds are great.  At this very moment in the hospital day everything seems to be under such control.  All good things are possible.  Optimistic plans are made for the day.  But then you just have to wait...

We are not good at waiting.  It is so much easier to be on the other side of the glass doors - you can keep busy ordering things and talking to people and doing.  We are now just sitting and waiting in the corner of our PICU room...with all the electronic devices we can find.  Let's see - 2 laptops, 2 phones, 3 ipods (now Ryder has one too), a nook and of course the breast pump.  There is a lot of cords over here.  So we need to work on the waiting skills, clearly.

I have learned already, though, that waiting CAN be wonderful...with each minute that passes you gain another minute to spend hoping.  Hoping that that minute will be just as great as the one that just happened, the one where everything still looked good, where there was no beeping, buzzing or humming alarms, where nobody ran in to stare at your baby boy's monitor(s).  You can hope that tonight things will be just as quiet, that the catheter will keep filling up, that something will be titrated off or discontinued.  Then, if you wait until tonight you can hope that during morning rounds after a discussion of numbers someone will conclude everything looks good.  That the plan will be to just keep the status quo and wait.  That will be good too.  So, while 14 days of waiting could be the worst 2 weeks of my life, I think it might be the best 2 weeks - never spent so much time getting the chance to hope for something so great...

Happy 2 week birthday Ryder!  We love you so much little warrior!! 
And thank you for squeezing our fingers today, wish we could think of a present that perfect for you...

My blue eyed boy...

Ryder had a quiet night last night and has had a great day thus far!!

A repeat head ultrasound was done this morning and still looks stable without any new concerns.  His ICU team was considering doing a CT scan early this week but since everything still looks good, they may just wait and do an MRI at a later date (standard for all of the hypoplast babies post-Norwood surgery).  His ventilator settings have been turned down some and his blood pressures have looked great all day.  He is stilling diuresing well, too and kidney labs are improved.

Ryder's paralytic was turned off yesterday morning so we have been waiting a day to see if he would twitch his fingers or toes...the amazing thing that happened, though, is our little warrier (just to show us what he is capable of) went right to opening his eyes & looking around!  The fingers and toes did eventually twitch too but there couldn't be anything so wonderful to see as those beautiful baby blues staring back at us!!!  It's been 6 days since his surgery with a lot of ups and downs and can't explain how great it is to know that our little boy is still in there!!!  He was awake for about 20-30 minutes the first time and woke up again late this afternoon, that time moving his little tongue around too.  He will stay on some fentanyl and versed until he is off the ventilator so he will continue to be a little sedated and very comfortable until he is extubated, but even a little peek at those perfect blue eyes goes a long way!!!  So thankful for that!!!


Ryder James, 13 days old & making open heart surgery look utterly adorable.
And probably wondering why some crazy lady is taking his picture...again.



Post-op day 5

It may be raining here in Kansas City but it has been a beautiful day!

Ryder is on 2 diuretics now and tolerating them well without needing any extra blood pressure support.  His urine output is great - if you were wondering how to best count your blessings...the answer is in milliliters!

Since the head ultrasound looked stable yesterday, the plan is to wait and do a head CT scan in the next few days just to check up on things.  His kidney labs are looking better, so no plans for dialysis.  The next few days will be working on getting rid of some more swelling, and if that goes well, closing his chest and working on going down on his blood pressure medications (now he is still on dopamine, epi and milrinone). 
So thankful for this great last 24 hours.  Ryder is such a strong little guy...he is showing no signs of slowing down this afternoon!  Thank you so much for the thoughts and prayers!  This message is from Ryder:

"Your eyes are brilliant, deep sky blue

Their quiet wisdom is an evening song

And the angels must be breathless at your beauty

Like the world catches its breath before the dawn



Ryder, Pre-op in fighting stance


God is near, little one
God is here, little one"
--Little Light

http://www.youtube.com/watch?v=bKOMMgVj6jI

Ryder, Post-op day 5...still puffy but peeing like a champ!

Post-op day 4...

Our sweet baby Ryder had his follow up head ultrasound today and...STABLE!  The radiologist felt today that the area in question was a subtle finding at best...great news.  He still will get a CT scan of the brain at some point to clarify but as of now very reassuring that the ultrasound was essentially unchanged!!!  We started the morning with very little muddy brown pee (probably ATN for the medical among you) but SOOOOO thankful to report that his nurse just emptied 5 ml from his catheter that looked very yellow!  Yes, we are excited about pee...kidneys are awesome.  Ryder is also getting a renal ultrasound right now to make sure there is nothing that appears obstructed.  The kidney team saw him today as along with the decrease in urine his creatinine is up (indication he is not clearing waste products as well) but they are going to wait probably until morning to see how he does on a lasix drip to try to get him to pee off a little more fluid before they will decide if he needs a dialysis cathter in the belly to drain off some fluid that way.  It doesn't seem like he will actually need the dialysis at this point but the catheter then will be able to do that too if needed.  Scary, but much less so that the giant chest cathters circulating his blood--so if it must be, it must be.   If you are in a praying mood tonight, we are hoping for more pee and good blood pressures tonight!

We have kept Addy away from Ryder since his surgery on Tuesday as clearly the machinery was very intimidating, but she was relentless today about seeing her bwother Wyder (trouble with the Rs, sorry but still pretty cute) so Ross covered his chest tubes and some IVs with a blankie and she came back to kiss his feet again.  She was very pleased!  Have only been seeing a little less of her for 11 days now but it never ceases to amaze me what she comes up with --
"Mommy, I would give you a hug, but I can't get out of my car seat" 
On plastic cell phone: "Doctors, hello, this is Addy.  How is my bwother Wyder, is he ok?"
"I kissed him mommy, now he is all better"
"I read this book to Wyder and give him this snack [plastic hot dog bun from playroom] because he likes snacks and is hungry"

Thank you all for the messages, texts, calls, visits and the prayers!!

Chilling with baby bitty in the fun hospital swivel chair

Crusing in a Children's Mercy swaggin' wagon

A very long day for Ryder...

After a restful night Ryder was found to have a small brain bleed on his morning head ultrasound...the significance of this we don't know yet...

With this consequence his heparin needed to be turned off so he had to get off the ECMO as quick as possible (you have to be on heparin with this).  Ryder did really well on lower flows of the ECMO so his surgeon came in and removed the ECMO tubes.  We had a couple really bad hours shortly thereafter with dropping O2 sats and blood pressures.  Miraculously (in my opinion) with a little more volume he perked up.  Probably more related to all of your prayers than anything!! 

We are still holding our breaths tonight...hoping for stable vital signs, better urine output and an encouraging CT scan which can't be done until he is stable for a road trip out of the ICU.  At this moment though, aside from being a bit puffy Ryder couldn't look more handsome...my little love is a fighter and I have faith he will keep getting stronger!!

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A peaceful night...

We had a peaceful night in the PICU!  Ryder's blood pressures, oxygen sats and labwork are stable since yesterday afternoon.  His kidneys appear to be working well now with good urine output.  We are awaiting results of todays head ultrasound but otherwise plans to keep the ECMO on until Saturday morning and then will try to wean and see how his heart pumps and lungs ventilate without the help. 

To our little warrier, sleeping so peacefully-

We love you!!  Be strong and courageous...know that when we are not holding your tiny hands you are being held by God and he will never ever leave you...

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time & prayers

Ryder had a rocky night...he was initially stable but his doctors had trouble ventilating him (getting the carbon dioxide off)...labs looked better then not so good.  He started ECMO around 7 am.  Basically it does the work of the heart & lungs for you - will give his body some time to rest.  This will be on likely a few days before they try him off again while he is fast asleep in the meantime...  Please pray that he stays strong and that his lungs will recover with a few days of rest.  We miss his squirming & kicking already...

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Waiting...

Know a lot of you have been waiting.Ryder had a rough day.  After ups, downs, & some more downs in surgery he is now stable in the ICU for the moment.  The five hr surgery turned to a 9 &1/2 hrs surgery requiring some extra time on bypass.  He is now settled in the ICU with plans for at least a few days on the ventilator before any other big changes.  We are so thankful for a GREAT surgeon and all of your love & support.  Ryder is our little warrier -please keep praying he receives the strength to keep on fighting!

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Ryder's big day...

Tomorrow is Ryder's Norwood surgery, one of three open heart surgeries he will need to redirect blood flow; the 2nd is usually done at age 4-6 months and the final one at a few years.  In tomorrow's surgery he will go on heart-lung bypass while the surgeon creates a new aorta using a patch and his pulmonary artery (that normally goes to the lung).  Then the atrial septum is removed completely and the Blalock Taussig shut is placed (a piece of tubing allowing blood flow to the lungs).  The stent may be removed but it just depends on how well it is embedded; they might have to leave it for now.

Ryder will get taken to the operating room tomorrow at 7 am and the surgery is scheduled to last about 5 hours.  Thankfully [thus far] we had another quiet day!  Ryder got a blood transfusion and some pre-op labs; we are headed back to the hospital soon so we can spend some time with him, give him some loving and hopefully hold him for a little while...he will be on the ventilator and sedated for the next few days-week so this is our best chance to get cuddles in for a bit...

Obviously this surgery carries a lot of risk, but Ryder's course so far has been nothing short of amazing.  He has surprised all of his doctors and nurses with how well he has done and how peaceful his first week of life has been.  We are praying and hoping that he will keep doing this well.  He has a great surgeon and care team and I am very confident they will do everything they can to keep supporting him.  Ryder's life is such a precious gift and in his short time as a part of our family he has taught us so much - I hope you will pray with us that he makes it through this surgery with flying colors and that he will keep making progress and get to come home with us in a few weeks.  Thank you so much for all of the well-wishes and prayers so far!!! 

Love you so much sweet baby boy!!

Now faith is being sure of what we hope for and certain of what we do not see.  Hebrews 11:1

A surgery date...

Ryder had a big day yesterday with a lot of new visitors!  Despite all the activity he had a relatively quiet evening and quiet day today so far.  This morning daddy got to hold Ryder for the first time...I brought Addy in while he was still in daddy's lap and Addy about fainted - I've never seen her run or talk so fast...I think she may have said:  "you hold baby Ryder...I hold baby Ryder? I kiss his feet? I give him hug!  Look at this horse!  Daddy - you hold him! I touch his hand?  I will give him hugs!".  Phew!

Ryder's first open heart surgery has been scheduled for Tuesday - we haven't got a time yet.  We should be meeting with his surgeon tomorrow to review details.

In addition to routine vitals, we have been watching blood gas #s closely - for the first time late this afternoon Ryder is slightly acidotic; this was expected at some point and pretty amazing he made it 5 days on room air but we are expecting some changes when we get back tonight - not sure what they will do yet...

Despite the numerous attempts to swaddle his little hands he always manages to get out - the right hand goes for the scalp IV and the left for the NG tube.  He wants to make sure we know that he is the boss :)

We will all be very sad to see nanny Cody leave tomorrow...Addy in particular!!

March 3rd

Mr. Ryder is doing well this morning.  Here are the updates:

Yesterday we had a good day, Ryder was moved to another POD as he was needing a little less nursing attention (a good thing!); he is cozy in his new spot and was keeping a good temperature so he only got to wear his leg warmers for a bit before spending the rest of the day chilling in his diaper!  His umbilical vein line was taken out and switched for a PICC line put in in radiology - it is a special IV line that is fairly secure - can be used for blood draws and for his medicines and fluids.  This IV is in his leg so last night I got to hold him again for almost an hour and a half! 

His oxygen levels are still on the high side, these are being watched very carefully.  His other labwork looks good though.  He had another ECHO yesterday too and the blood is still moving across the atrial septal hole so we are hoping nothing will need to be done with that before his surgery.

I was discharged  home yesterday afternoon...bittersweet.  Anyone who's ever had their baby in the NICU knows this feeling but it is unbelievably sad no matter how baby is doing to leave the hospital without him/her.  He is being well cared for though and it is so nice to see more of my little princess!!  Addy is loving her little "bwother" and was very excited to give him more kisses on the feet yesterday :)  She will be busy this morning though at soccer with her uncle Cody.  Just don't tell him that "soccer" is not so much soccer as practicing listening and trips to the potty...

Ready for combat...or deer-hunting maybe??

Mommy snapped a quick shot without the forehead monitor on

Addy offering her baby bwother the chocolate milk she brought in a medicine bottle

Thank you for all of your prayers thus far! 

It is of course very hard for our toddler to comprehend what is going on with a new baby...Addy has seemed to be fine with us telling her that baby Ryder's heart is broken and he has to stay at the hospital until it gets fixed.  Yesterday she kissed him and said "baby Ryder's all better now, I fixed his owie!".    Seriously, break MY heart.  Please keep praying for a quiet weekend for Ryder heading into his big surgery next week and we will keep you updated on his progress.  We are so thankful for each of these precious moments we have had with him so far!! 

A good day in the NICU!

Mr. Ryder had another good day!  Oxygen sats, blood gasses, respiratory rate are all stable.  So far haven't had to plan for the heart cath or placing him "under the hood" due to too high o2 sats.  There was a couple of trials for a PICC line (special IV) today without success but on trial #2 he got to suck on a pacifier covered in sugar water.  A HUGE hit!  He will go to radiology tomorrow to get the IV placed instead.  He also had a repeat ECHO today without much change.  His surgery plan will be discussed at the cardiology conference tomorrow morning and hopefully we will get a date then.

He is looking forward to some more visitors this weekend and some more footsie kisses from his big sister!