One year. Wow.

A year ago today we woke up in Boston.  I checked in at "The Brigham" and was admitted to the OB floor where I had a spinal and went to the OR...


Photo courtesy of Wayne Tworetzky, MD, director, Fetal Imaging and associate in Cardiology, Boston Children's Hospital (professionally texted to Ross via iphone, of course)


 There, Baby Ryder floated around blissfully until he had fentanyl and a paralytic medicine injected into his very small in utero bottom via an amniocentesis needle.  Then for several hours a team including Dr. Tworetzky, 2 other cardiologists, an OB, an obstetric radiologist, 2 anesthesiologists and a pediatric anesthesiologist as well as a nursing team worked on Ryder's heart.  They went in via an amniocentesis-like procedure entering his chest wall and then his heart...on attempt 1 a small hole was made in the atrial septum but the stent couldn't be deployed...on attempt two the stent was deployed but flipped out into the right atrium where it bounced around and lodged in Ryder's tricuspid valve.  Then with some quick thinking before it tore up his valve it was literally poked into the right ventricle with a cardiac cath wire.  There it hung out.  Then a debate ensued about whether to abort the procedure as Ryder's hemopericardium (blood around the heart) was drained out and his heart rate slowed dangerously low....  The very loud and [thankfully] confident interventialist went for round 3 as he said "Come on!  Let's give this baby a chance!"  There was probably a few choice words thrown around but I was laying very still (mostly because I was paralyzed) and quietly breathing, waiting to hear for Ryder's heart rate to pick up...and it did...and they poked another big hole in his atrial wall...and he lived.

I wrote on this blog November 17, 2011 "As with many things in life the procedure didn't go exactly as planned."  Ha!  I had no idea the ride Ryder would take us on for the next year...

Well our little miracle is getting his much needed ventilator rest this weekend...hoping to start cutting back on the support next week so we can see our smiling little guy again soon.  As always, we appreciate all the prayers for our warrior.  Remember...home. for. Christmas.

Sphygmomanometers

Just thought I'd throw a medical word out there for kicks...not as fun to say as epistaxis (nose bleed) but still, why not say blood pressure machine if you are referring to a blood pressure machine.  But I digress...

Ryder is stable today.  That doesn't sound exciting I know, but it is a very good thing.  Last night was not as rough as the night before, but I fell asleep and woke up to the lights on - never good.  Not as bad as when you wake up and realize you missed some text messages, the last of which ends "Aren't you getting my texts?" but still...my reflex is to look first at the monitor and not Ryder...blood pressure 40s/20s.  That is looowww.  He got 2 boluses of albumin and they popped back up; then an hour later same thing.  But, after that he sailed through the rest of his night without any big issues.  He needed a little more oxygen this am but this was transient and now he is barely on any; just still needing the actual breathing work done by the ventilator.  His blood cultures are still negative so it appears that the continued fevers are likely all viral so hopefully all things will continue to improve with time.  He even woke up a little today, though still pretty sedated.  But those pesky blood pressures...he has a normal one now but is on dopamine and a small amount of epinephrine (both keep blood pressure higher).  I think a lot of it is because of his sedation but still, the tower of green lights on his IV pump pole is always scary. 

What I keep looking at, though, is this blue balloon...

the child life department brought it in tied to a rattle for Ryder last Thursday when they heard he was transferring to the floor.  It's mostly deflated now, tied to the back of his crib.  I am thankful it doesn't say anything like good luck or congratulations...but there it is, still afloat, twirling around above the NIRS monitor.  It was tied to the front of his crib until they moved it to intubate him again -I remember it was the first thing I saw walking into his room Tuesday afternoon.  I so wanted to pop it and thow it away...stupid reminder that this wasn't how it was supposed to go this time.  Stupid out-of-place balloon, floating around all day in complete denial that it no longer had anything to celebrate.  But I didn't.  That balloon is Ryder's, and every time he takes another breath there is reason to celebrate.  That balloon isn't perfect, but I'm sure he doesn't care...nothing in this world is perfect.  Although our little warrior IS perfectly amazing.  He will come home, I know it.  Home for Christmas.  So..sphygmomanometer, keep those good blood pressures a comin!

The Common Cold

We were all set for Ryder to move up to the 4th floor on Thursday.  How exciting, and terrifying!! 

Seriously, how handsome is this little butterball?!?

Just waiting to get a bed...then the oxygen sats were lower...and then lower...and back on the nasal canula.  It was such a bummer.  It had been 2 + weeks without oxygen.  So Ryder stayed in the ICU that night, he had a low grade temp, and then the coughing started.   He had an ok day Friday but was a little more cranky Saturday.  We thought it was from his vaccinations which he had just gotten.  He did get to eat some sweet potatoes and green beans (and then tried to eat anything else he could get anywhere near his mouth) which was fun -he has clearly been working on those fine motor skills and can do his own oral care with a mouth swab.  In fact, I have no doubts he could brush his own teeth already if he had any.  Grandma GG gave him some bananas which he loved on Saturday night but his cough got worse and he had to get put back on a lot more oxygen.  The last 2 nights he has been miserable, waking up every hr coughing, feeling yucky, congested and getting puffy.  His viral PCR came back positive for rhinovirus and enterovirus.  And today our little warrior was intubated for...a cold. 


Ryder, fighting the mean viruses

Despite our scrupulous hand-washing and the every-other-night alcohol-wiping down of his room he couldn't avoid the worst infection risk...US.  It can always be worse I know, he could have something irreversible, could have had respiratory failure after he was transferred out of the ICU or at home, but nothing breaks your heart like watching your sweet little angel suffer and get tubed after you couldn't stop loving on him and gave him a cold.  Because I live in a state of perpetual denial I just came to terms about an hour ago that he wasn't coming home for Thanksgiving.  I really believed it was going to happen this time.  But there is still 42 days until Christmas...so if you have the time for a prayer tonight and/or a letter to Santa, all we want for Christmas is our baby boy under the Christmas tree.  Wouldn't that just be perfect?  It wouldn't be the first miracle for sure.  And to my Ryder, I am so sorry peanut.  I am sorry beyond words.

Lellow

What an amazing week it has been so far...and our little warrior may just be moving to the floor tomorrow!   Ryder had a good visit w/grandma and grandpa this weekend and I took Christmas pictures of he and Addy on Sunday - not going to lie, can't stop looking at them.  He is wearing a little Santa hat and looks like a chubby elf.  I could just eat him up. 

The other fun part of our week was Addy's very first parent-teacher conference for preschool.  She is such a big girl!  Of course Addy has been "a delight" in school - she is so funny I don't know how it would be possible to not be entertained by her.  She spends most of her day with "practical life" montessori activities - i.e. washing windows, polishing metals, sorting things.  No surprise there.  She is apparently very "busy".  Maybe that is why she can't sleep at night...still thinking of all she has to do.  She writes "lists" at home, an activity she of course picked up from me (and with help from the Frog and Toad story - if you haven't read it it's a good one - Toad starts his list after waking up with "wake up" just so he can cross it out).  The lists are great, since she obviously can't write, but she makes perfect little squiggles on each line of a notepad.  I can't even keep track of all the funny thinks she says.  The other day she was talking about Ross -she still is processing the fact that he works at Children's and Ryder lives here but one has nothing to do with the other.  She said I am going to see daddy in Ryder's room, but he won't be at work there because he doesn't do work.  Funny. 

It is so easy to look at our Ryder and see how far he has come; to see how much he has overcome, developed and grown.  If you don't believe in miracles, then you probably haven't see any of my photos.  Though no photo could compare to remembering how he looked after his first surgery or worse, how he looked when he had to be pulled of ECMO post-op day 3.  Frail, blue, cold, battered.  On full life support, surrounded by IV poles with so many pumps we lost count.  So sad I couldn't even take his picture yet.  Compare that to now.  He is so perfect.

What I sometimes lose sight of is how much Addy has grown since Ryder has been here.  Almost 9 months for a 2 (now three) year-old is an eternity.  In the last 8 1/2 months she became a big sister.  She moved daycare rooms and then stayed at home with our nanny (who we were hoping would be at home with Ryder), and she is now in preschool.  She started dance class.  She LISTENS in dance class.  She has a new BFF neighbor who she actually will shrare toys with.  She has learned all her letters, can [sort of] write her name and is doing great with numbers.  She stopped wearing pullups for naps.  She is awesome.  We are so lucky to have her - can you believe a toddler who has been carted back and forth to a hosptial a million times, missed time with mommy and/or daddy, is forced to try and figure out why other kids have baby brothers or sisters at home and hers is still at the hospital and she never complains.  She only cries about it when she can't come visit him.  She is such a good big sister.  She is getting soooo big.  Sometimes, I forget that.  And then the other day she said yellow.  Not lellow.  I asked her again what color her sun was - "yellow".  Seriously?!? My baby girl can make a "Y" sound?  What are we going to do.  Wait until she says Ryder instead of Wyder.  I will be a mess. 

Addy, big sis tattoo!



Addy, taking being a big sis seriously!!



Giving thanks...

Since November is a good month for giving thanks, a good place to start is to be so thankful for how great our little warrier is doing!!  Late on Sunday (after I managed to stretch Ryder's monitor wires/IV pole etc. over to the couch so we could see a little daylight) Ryder was told he might get to go to the FLOOR on Wednesday.  Yep, out of the ICU.  Of course he must have heard this so he spent a good 36 hours after that throwing up, screaming, low oxygen, etc. which effectively pushed that transfer back with fear something horrible was wrong.  As it turns out, so far nothing bad, he just needed a little slower increase on his feeds and some ativan.  Ativan, in case you didn't know is good stuff.  Ryder now has the stitches out of his Gtube so it seems to not bother him much, he is back off the oxygen again and doing great and so we just have some work to do with getting his diuretics IV to oral, and his feeds up to goal calories...

Dr. Ryder, ready for rounds!!



Purple fairy princess Addy and her friend Taryn, practicing being graceful fairies!

Ryder had a great 1st Halloween.  He was a giraffe in the morning, but he apparently was not fond of that costume since he pooped all over it.  Next he was Dr. Ryder with custom scrubs and his own real stethescope, courtesy of the PICU.  He even went on trick-or-treating rounds.  Addy was a very excited purple fairy princess and has decided her favorite candy is "all the candy that I got". 

And so I am holding my breath, very hopeful for a little more progress, and then...H.O.M.E.  Yes...I think this really may happen...we might bring a baby home with us.  I don't even know what to think...so what do you think?  Will we get our Butterball home in time for Thanksgiving?  That is my hope!