Author: Sarah

I cannot begin to put into words how grateful we are to have so many blessings.  People may look at our life and take such pity or call us brave, but really we have so much to be thankful for.  This is our version of normal so it really isn’t as overwhelming or cumbersome as you may think.  Exhausting at times, emotionally draining at others… busy… but mostly happy, loved, and a work in progress.  Evan has done so well despite his parents (ha) and their first-time-ed-ness.

The absolute truth is though that we wouldn’t be the people we are or in the place we are at if it wasn’t for an amazing network of support.

For my Raw Material Lab family, I am constantly blown away by your earnest care and consideration of my little man.  Your genuine desire for him to do well and for me to keep some level of sanity are saint-worthy attributes.  Your generous donations are more than I could have imagined.  Forgoing your own individual rewards in order to give us gas cards may have been an easy decision for you to come to, but you deserved the reward as well.  How many SQC hours can you log for Acts of Kindness?  I will have to treat you to an off-site “research study” into the various forms of Ethanol.  I owe you.

Karen and Nancy, you allowed me to leave work early the day before Evan’s surgery, which allowed me to have some cuddle time with my baby.  Otherwise I would have gotten here too late and he would have been asleep.  A mommy’s heart is so grateful for your unselfishness.

My other lab families, thank you for helping me find work that I can do while using my last 2 remaining brain cells.  I don’t mind the grunt work.  Thank you for not assigning me assays that require a 4-leaf clover and a lucky horseshoe to complete.  I appreciate your patience.  I won’t take the easy stuff forever.  Thank you for the lunch dates.  Your company is all I truly need.

For Bill’s Tech Transfer, ESTL, RTL, QA, and families, you are all so generous it is bordering on ridiculousness.  You all are crazy.  And thoughtful.  And lovely.   Would you accept a lunch date full of infant handsomeness as a sufficient thank-you?  The best I can offer is for you to see the goodness that you helped to support.

For our bosses, our bosses’ boss, our bosses’ bosses’ boss…. Thank you for the sympathies, understanding, and flexibility.  Everyone should be so fortunate to work with such wonderful people as we do.

Brittney, thank you for being so thoughtful and treating a hungry daddy to his favorite food.

Thank you to the Butcher family for both bringing our U of M Zipper Club shirts to the hospital and for the wonderful wooden puzzles.

Thank you to Scott Newport for the wonderful stool made from reclaimed wood and the redwood “tags,” we’ll put them to good use.

Carie and Jason, thank you for being constantly willing to open your house up to our barking, stinky, rambunctious dogs without complaint.  We know they are well in your care and we know they drive you nuts.  Your patience, friendship, and kindness are remarkable.

Kelly and Andrew, thank you for stepping in and filling in the holes with dog care despite the fact you have itty bitty twin girls and are (probably) slowly losing your sanity.  Hey, maybe that’s why you keep offering…

To our fantastic chefs, homecooked meals do so much for the soul.  Whether it is feeding us in the hospital or making sure we are taken care of once we go home.  Relieving that from our minds was so wonderful:

• McLaren Family Sloppy Joes (delish and lasted several days)
• Erica’s Ravioli Lasagna (great, simple, yummy, easy!)
• Karen’s Homemade Pot Pie and Tofu Lasagna (first time trying parsnips, yum)
• Tracy and Executive Chef Bobby’s Homemade Soup (flavor perfection)
• Spilson Family Tacos (complete with baggies of toppings – so thoughtful) and Lasagna (perfect… and garlic bread to boot)

We aren’t brave or anything remarkable – this was our chosen path with a child we think was perfectly made.  But your helping hands have absolutely made this journey much more manageable.

In todays picture album you will see visits from Bill’s parents and nephew Xander, physical therapy specialist Alaina, Cortney and Ian for a baby playdate, Sarah’s Mom and brother PJ and more cute pictures of Evan than you can handle. 🙂

We are still just hanging out in the hospital, getting more data on how his heart is functioning and how well he is tolerating everything.  Data is good.  We like data.  Evan continues to do pretty well, although he still has his moments. Not sure if he is just over everything or the fact that he is getting his molars or maybe he just is in a little bit of discomfort – he does like his pain meds.  He keeps itching at his chest and the steri strips on his incision.  Poor buddy.  I hate that he has to get cut up again in a couple weeks. 🙁  At least those will be new incisions??  More scars for my baby.  I just really hope that his new pacemaker placement doesn’t impede his development with regards to crawling and pulling himself up.  The thought of it just breaks my heart.

Other than that it is the same ole same ole.  His chest tubes were removed and he only still has his PICC line.  Less wires and such to deal with is nice.  Evan hasn’t been needing any O2 support, even blow-by, so that is nice too.  I’m still just as uncomfortable with the thought of going home any time soon.  Don’t even bring it up to me because it isn’t even a consideration I have now.  Oh!  And we learned that Evan actually has 3 strains of Psuedomonas growing inside him.  Of course we won’t be able to know if the infection has ever cleared or anything.  Keeping fingers crossed…

Also, there is an adorable video of Evan demonstrating his newest trick – waving.  Head on over to the Video page to check it out.  I would embed it here but it is too advanced for me to do – maybe someone with mad skillz will have to do it instead – hint hint.

Hint received loud and clear… not easy to do from a cell phone, but here it is. 🙂

Evan Waves from William Wood on Vimeo.

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 [/frame_left]It is kind of like Groundhog’s Day when you are waiting in the hospital.  There really aren’t any outward signs of progression so every day starts to feel the same and they blur together.  Evan is making signs that he is starting to feel better, or at the very least starting to get used to things or not be so irritated by things. He definitely knows who nurses are though because he will make a big stink of things very quickly 9 out of 10 times.  Even if they are doing something simple like hooking up his meds or taking his temperature.  If he knows they are around – he lets them know their presence is not wanted.  “You want to put a stethoscope on my chest?  No thank you I will push it away.  I am done with you now.”

 

He is more cuddly in the hospital than he is out of the hospital so it is nice to be able to sit with him and just hang out like when he was an itty bitty baby.  He does feel well enough to sit in bed for a while.  Sometimes he tries to play with his various wires but for the most part he leaves them alone.  Throw on some Peep of course and he is mesmerized.  [frame_left]

[/frame_left]We will put some toys in his bed and his favorite game is to throw them overboard so we have to lift up the sides of his baby jail all the way if we aren’t going to play with him.  Otherwise I’ll leave a side down and we will play “catch” and he seems to get a big kick out of it.  I’ve gotten quite a few smiles and giggles from that game.  The hard part is that he wants to pull himself up or try to do some crawling and it makes his incision a little leaky.  It’s pretty gross and I would think painful if not just irritating but he doesn’t really seem to notice.  It does seem to be healing nicely but the steri-strips are starting to itch for baby boy.  Sad that he has to be opened up again in a couple days and start from square 1 all over again. 🙁

Evan got his feeding tube button changed out last night so instead of his Mini ONE he now has a MIC G tube and it will reduce some of his g-tube leaking.  And then maybe he can get a different size when we leave.

Evan was moved up to 2.5L Oxygen through his cannula because is Oxygen saturation keeps dipping low.  The thought was that it is related to his feeding – the more full he is the lower his sats will become.  The respiratory therapist came by though and turned it down to 1.5L.  Per him, for children of Evan’s size, anything over 1L doesn’t to too much except irritate the sinuses.  He does seem to be more used to his cannula so not fighting him over that is nice. Either keep it in or out though because once it moves he gets very upset.

Pacemaker people also came by today and turned Evan’s pacemaker down to 50.  They want to try to do a dry run of how Evan’s heart rate will be prior to removing the pacemaker on Wednesday.  Evan’s rhythm has been anywhere from 52 to as high as 65 but you wouldn’t tell his heart is slow because he is still just as active.

They continued to grow his blood samples and another species of Pseudomonas was discovered so they are changing one of his antibiotics from Gentamicin to Tobramycin.  Hey yeah a generic drug that Pfizer makes.  Too bad it is on a shortage list.  Anyone want to work overtime this weekend?  ahahahahaha

I can say that Saturday and so far Sunday have been a huge improvement over Friday.  Friday night was just ghoulish.  It was an insight into how terrible coming back for the Fontan next summer will be with a toddler in tow.  Saturday into Sunday was a much better night of sleep for everyone and that was a huge relief.  Except when they come in and get his vitals at 1 or 2 in the morning and wake him up… that’s always a pain.  So far tonight he doesn’t really want to sleep but daddy thinks he has found the answer to it with a dirty dydee so hopefully that fixes everything.  He should be tired because all he has been doing today was play and move around.  He is so active it isn’t funny.  I think he is starting to figure out this crawling business and is finally not afraid to get on all fours and try to move around.  He has taken a couple crawls so it will be very soon that he is adept at it but it does make it harder to crawl in the hospital with a monitor in tow.  He keeps getting tangled in it.  Saturday we stayed inside more or less and watched a lot of Olympics but went on a couple walks.  Saturday night brought thunderstorms and it was pretty dreary during the day but the afternoon turned out quite nice so we were able to take some pictures outside.

We don’t have any new information as far as his care is concerned – we are still waiting to hear from the team on Monday.  My gut feeling is that they will be sending us home with additional monitoring and not do any surgical intervention at this time.  The last time they adjusted his pacemaker was Friday night at around 7ish and it took a while for it to stick.  It wasn’t until 1ish in the morning that his rate finally stabilized around 90.  I don’t know why that is and that is the only thing that bothers me.  Why was there a 5 hour delay from setting his pacemaker to when it worked consistently?  Since then his heart rate has stayed in the 90s and I’m sure that is the reason they will be sending us home.  The only other new issue is with the last 2 sets of vitals his blood pressure has been high.  I don’t know if it is related to him just being active and therefore not getting a good result or what.  It will be interesting to see what his value is during his nighttime vitals – although since they will be waking him up and irritating him I’m sure it will be a skewed value.

In any case, indulge in this cuteness…

This day last year we drove to Ann Arbor to begin waiting out for Evan’s arrival (it was his due date) and had no clue if we would return home as two or three.  Today we drove to Ann Arbor for follow-up development and neurology appointments.  What an evolution of a year.  Can’t imagine having one more eventful and don’t think I would want another one like it either!  The fog is lifting… a day at a time…

The developmental follow up is for the TECS study.  We signed Evan up for a number of studies when he was born.  Apparently now tho a developmental evaluation at 1 year is standard of care at UofM and that  is great.  He proved to be pretty much where we thought he was – delayed in gross motor, delayed in “self care” (being able to feed himself etc.), and delayed a bit in speech.  The speech part was new, hadn’t been mentioned to us before, but I think the feeding has a correlation to speech since it uses the same muscles.  Once he figures out how to eat I bet his speech improves a lot more.  They said for us to watch it and if by 18 mo he isn’t saying things to consider speech therapy.  Meh I’m not too worried again considering I think it is connected to feeding.  He’ll get there.  We go back for the TECS study re-evaluation when he is 3.

We also had a follow-up with his neurologist Dr. Leiber because Evan had at least 1 stroke and seizures last August.  He didn’t find anything remarkable and agreed with our earlier findings but we will visit him again in a year.  Evan had his head measured and it was basically at the 100th percentile.  The growth curve for his head is crazy steep.  We of course know he has a big noggin considering it is difficult getting 2T shirts over it.  The Dr. checked our heads just for good measure and turns out that dad’s head is larger than the average.  (ok mom’s is too but not as much as dad).  So buddy will be stuck with a big head – full of big brains too.

Fortunately and unfortunately we were able to see our friends the Wilson family.  Mia was recently admitted as she just isn’t feeling like herself lately.  Prayers that they either figure it out or that she gets better and gets out of the hospital and home soon!  And funny timing that another friend Aly was there for her 3 yr assessment the day before.  If we could only coordinate better next time.  Well… it does look like Mia and Evan will both have their Fontans next summer, so who knows.  It is nice to have familiar faces in the hospital.  Oh and we saw a sign for the Evan Newport Hope Award and it made us smile.  Scott met and talked with us a while after Evan’s birth and there is no doubt he is  passionate.

After all the hospital bidness we went to Toys R Us and returned what I had originally bought for Evan (the Tek Nek pony – his legs are too fat! and the 1 song was lame-o) and got something else instead.   Mama has some hope it will inspire to keep working on his PT!  We also bought some extra receiving blankets seeing as he had 2 spitups, 4 pukes, and 3 outfit changes during the day.  We were all out of our extra supplies and needed some backup just in case.  We also ran to the party store to get the remaining party supplies for Saturday.  The VanSolkema family bought out all of the design in Kalamazoo so we had to drive to Ann Arbor just to get anything. 😉  We’ll need to plan better next year.  (Momma VanSolkema works at Pfizer too and had twin boys on the 17th, so with birthdays only 4 days apart there will always be a lot of the same for us too.  Actually, there were a lot of boys born last year so we get ideas from everyone else and make our party that much more awesome 😎 There are perks for being last!)

Evan slept all the way home and then some.  Poor guy was pooped.  Hopefully uninterrupted sleep tonight.  Whoo hoo!  We rounded out the day watching some Dark Night, going for a walk with the present  Dadda bought, and watering the flowers.  A truly lovely day.

BTW I think this is the fastest we have ever done something and posted it.  I’m pretty proud of us for that. 🙂  I do have lots more photos to share tho and hopefully I can make another post soon.

How some things change… and some things stay the same??

 

 

 

Yeah… we love the pool.  Yesterday Grandma Nan and Uncle PJ came over to play.  Evan showed them his dancing moves, jumping moves, and throwing moves.  But most of all, he showed them his splashing moves.  I think we will need to get him some swimming lessons for sure.