livingwithevan.com

Month: September 2011

  • 2 months old!

    Holy cow!  We have a 2 month old!  And that is something we are so impossibly grateful for.  In one sense it seems like it took forever to get here yet it was just in the blink of an eye, truly.  We love you, Evan.  Thank you for the past 2 months, and especially the past 2 weeks at home.  Life is good… and very busy.

    On Saturday, Evan got to meet his cousins Jacob and Morgan as we hung out with Aunt Kate at the Kalamazoo Air Zoo.  Plenty of rides for the kids to run around like idiots with a really big expansion of wartime memorabilia.  Of course the pricing structure changed so it will cost at least $8 instead of free but still a good deal, especially in the winter or on rainy days.  We later took the kids to a “big fancy restaurant” known as Chili’s and absolutely devoured some chips and salsa. Thanks for making the drive to hang out in the ‘zoo!

    Within a year, our local group of friends all had children.  Our fun group which would get together for karaoke contests and bonfires now all have a little baby friend to contend with.  How great it is that they will all grow up together but how much more rare (at least at this stage) will our get-togethers as a group be. 

    And that’s not even counting Round 2 of babies.  Now THAT will be quite crazy. Evan is the baby of the group and since we round it out, Bill wanted to get everyone together for a big breakfast.  12 adults and 6 babies.   We wanted to walk in with all the carseats and watch the waitstaff freak out.  He went and reserved a section on Wednesday for 11 am Sunday breakfast.  Mental note: even if you are in line by 11, if there is a large group ahead of you who didn’t make a reservation but threatens to walk, the hostess will give your section away – even if you tell her “hey that’s for our group – we are all coming” she will just look at you and say “oh but they are going to leave” and pass it along.  Que?  I had zero sympathy watching them scramble to put a section together for us.  They wanted to split us up but the whole point is to be a ridiculous group.  And we certainly were.

    Back row: Natalie (Dec 2010), Joel (Aug 2010), Kathleen (Oct 2010)
    Front row: Logan (June 2011), Caleb (May 2011), Evan (July 2011)
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    We also had a cardiologist appointment on Monday.  His weight was 10lb 7oz (but with pants and a full diaper on) and his length was measured at 23.5″. Eavy was very cooperative and didn’t barf all over the place unlike last week.  Small victories. 🙂  Evan started having some rather juicy-sounding coughs on Friday and we went to the Pediatrician on Saturday who said his lungs sounded clear so don’t worry.  Well, we mentioned this to Dr. Fountain-Dommer on Monday and she said that Evan could be aspirating some of his food.  This could come from when he is eating or during some reflux episodes.  Not something we wanted to hear.  Does that mean he will need to go back on the tube?  Ugh.  So she scheduled a swallow study for next Thursday, prior to his next cardiologist appointment.  From there, they will be able to determine what exactly is going on.  I also turned in some additonal breastmilk samples so hopefully I am still making some Grade-A quality milks.

    Visiting nurse came by on Wednesday and weighed Evan at 10 lb 5 oz (with only a clean diaper).  I’m a little irritated with the Home HealthCare services.  The past 3 of 4 visits have not been when they said they would be, and it stinks to wait around at home and anticipate the call only to hear nothing.  Last week they said they were coming on Tuesday, but Tuesday came and went with no call, no show.  Wednesday morning they called 1.5 hours before they wanted to show up (it kinda works like Comcast –

    they give a day they are going to show up and then on that day they call 10-90 minutes ahead of time to give you a heads up.)  It’s kinda annoying and I really don’t know what the point is but whatever.  Anyway, after a massive barf Wednesday night, we decided to give Evan a bath.  Evidently it was a truly terrifying experience.  You just have to watch the movie.  He never cried, but his eyes screamed sheer horror.  Clearly it was baby torture time.  Wednesday was also Evan’s 2-month birthday.  Happy day, bud.

    Thursday was our 2-month well baby checkup at the Pediatrician.  This time Evan weighed 10lb 1.5 oz nekkid.  I know the scales are inconsistent so I’m not sweating those numbers but it’s like why collect the data if you can’t properly compare, you know?  With that weight, it puts Evan at the 10th percentile.  Yucky.  His height is in the 75th percentile (y’all know baby boy is going to be tall) and his head circumference is in the 15th percentile.  Which I think is funny because we haev a hard time finding hats to fit his noggin.  We have a long thin baby on our hands.  Come on little guy.  Fatten up like a big ole turkey.  I want triple chins for Thanksgiving!  Dr. Dodson listened to his lungs and agreed that they sound clear (not crackly) but that there was a little bit of wheezing so she gave Evan a nebulizer treatment.  He seemed to take to it very well (after some additional baby torture eyes) and is blood oxygen levels improved from 80% to 89%.  He seemed to be able to cough material out easier as well.  We went home with one and picked up a prescription and have orders to use it when he has a coughing fit or appears to be using more effort to breathe.  We go back on Monday for a follow-up.

    Meanwhile, Bill’s family is on their way moving up to Kzoo from Florida in order to help us out with Evan.  Don’t worry Nana!  Pretty soon you will be able to see your little bear as much as you want.  Here’s to a busy weekend of moving!

     

  • Feeding and cardiologist updates

    10 days.  No post in 10 days means good news for Evan.  But no post in 10 days also means a bunch of well-intentioned individuals need their baby Evan fix.  I apologize for that.  The post delay is my fault.  Seems to be that having a baby makes you the busiest you have ever been.  It’s all I can do to keep up with a calendar for all of Evan’s events.  And it’s all we can do to keep up with photos and videos, so they are a little bit more scarce as we aren’t always as camera ready as we were before.

    Since the last post Grandma Nancee (my mom) came down and spent a few days with us.  Unfortunately zero photographic evidence of this exists, but it was a lovely time.  She was very useful in helping us get organized, putting things away, cooking, cleaning, gardening, and of course watching after the little man.  I honestly don’t know how couples manage by themselves (I mean without extended family help).  One fortunate thing throughout all of this is that I am healed, am physically able, and we were able to learn a bit about Evan’s personality and his routine before coming home.  I can’t imagine having other kids at home and/or coming home with a 2 day old baby.

    Dad had to go back to work starting Tuesday the 6th.  It stinks that all of his time was used up in the hospital but we are grateful that he was able to be there and not have to use vacation, which we are both saving for the second surgery.  He does have more of an opportunity to have a flexible work schedule and has been able to be around as much as he can, which is very helpful.  I love being able to be home with baby boy, even if it is tiring and feels unproductive at times.  Just relishing in those itty bitty baby moments makes my heart soar, so I can’t imagine how much Dad must think of coming home to snuggle with Evan.  I mean, who wouldn’t want to snuggle with this cutie pie?  Especially when he is zonked out in a milk coma.

    We are still working on Evan’s feeds, which apparently is the thing you do with your heart baby.  We have ng tube feeding supplies but Evan has other plans and has pulled out his tube.  We decided to leave it out and see how he does on his own because we truly don’t know.  Doctor’s orders are to feed him 75ml (about 2.5 oz) every 3 hours, with a total of 600ml at the end of the day.  He is drinking unfortified breastmilk (mine tested between 24-30 cal/oz) and is doing OK but never really hitting goal.  He is closer to hitting it some days more than others.  We are concerned about his weight gain, or lack of it.  A visiting nurse is also coming to the house 1-2 times a week and he is weighed at this appointment along with cardiologist and pediatrician appointments so maybe because so many scales are being used it is not providing consistent and reliable data.  Maybe it is becoming a bit over-analyzed at this point.  At our cardiologist appointment on the 12th, we voiced our concern about feeding and weight and our doctor wants us to keep the tube out until our appointment next week and see how he does.  She feels the ng tube can do more long-term harm than good and she believes that if Evan truly needs assistance in getting his caloric intake, he should be fitted with a g tube.  I’m not too excited about that idea so hopefully Evan was listening and will kick up his feeding a bit.

    The rest of the cardiologist appointment went just as planned.  The shunt looks great but she wants to keep an eye on it so we will have weekly cardiologist appointments. The echo on his heart showed that everything still looks like it should.  She looked over his meds and agreed at the amounts.  His heart med, captopril, is a compound medicine and there are only 2 pharmacies we can go to to get it refilled, so I’m glad we found that out.  Uneventful is good. 🙂  The next day we had the visiting nurse stop by and of course you think of more questions when you aren’t at the doctor’s office. I asked about his potassium levels because when we were in the hospital they gave him potassium pretty frequently because the diuretic furosemide that he is on can deplete it. She’s going to check with the cardiologist. I am also on the lookout for dehydration since he does not seem to have the same huge pee diapers that he was having after a dose of furosemide. Other than those very minor things, he is just wonderful.

    Evan and I also tested out a moby wrap that a friend is letting us borrow.  I still need lots of practice with it but so far he really likes being in it.  It is a bit warmer than I had thought and the material is pretty stretchy and it is supposed to be that way but after wearing it for a bit it tends to stretch too far so I need to make it tighter.  Evan doesn’t appear to mind too much tho 🙂 We also gave Evan a bath in his new big boy tub.  Previously he had only gotten sponge baths so immersion in warm water was a new adventure for him.  He kept looking at us with a “what the heck are you people doing” expression.  No crying or fussing but plenty of big-eyed expressions.  Afterward, however, he gave us the signal to get him clothed and bundled up as quickly as possible.

     

    Pretty Cute from William Wood on Vimeo.

    Evan was sitting with mom and was a very happy little boy, until he got hiccups.

  • Enjoying being at home

    Sorry that it’s been several days without an update… I know you won’t believe it but we’ve been pretty busy. This having a kid thing is pretty time consuming. Who knew?

    Let’s see… Evan sleeps really well. So far the nights have been pretty good, he’s been sleeping for 6+ hours at night but we have to feed him in between so we’ve been putting it down his NG tube while he sleeps (2AM feeding). The tube is actually pretty handy. I mean, of course I want it off of his face, but it has it’s advantages. 1) he always takes his entire feed whether he’s awake or not 2) having a problem getting him to burp? nope, you can syringe excess gas right out of his stomach, 3)wonder how well he’s digesting his food, you can pull up what’s left, if anything before a feed to see what’s left from the prior feed, 4) doesn’t like the taste or doesn’t want to take oral medicine? (see video), just put it down the tube.

    Follow up care for Evan will be handled by doctors here in Kalamazoo. Evan’s first appointment with the pediatrician was Saturday morning. It was very basic, they just did the normal measurements, weight, listen to lungs, and heart and we filled out a ton of paperwork. The doctor admitted that she was late because she was reading all of the doctor’s notes from U of M. Uh ya…lot’s to read. We have another appointment in a couple weeks. Additionally, we have a cardiologist here in Kalamazoo and U of M set us up with several visits with a home care nurse as well. Her first visit was Sunday morning. The home care nurse comes every couple weeks to check on Evan’s progress. I’m looking forward to seeing the cardiologist, it was her that correctly diagnosed Evan and got the ball rolling way back in March. Look at him now.

    Evan got his first real bath tonight. We’ve still got to get a countertop tub for him, but tonight we put him in the bathtub with a baby bath sponge thing. Turning the shower down to a trickle he really seemed to like the whole thing. He’s such a good baby.

    We have two small dogs, Molly and Maggie. While we were in Ann Arbor various friends watched them for us and we’re very grateful. The dogs came back to the house Friday afternoon and have been great around Evan. They leave him alone and surprisingly do not seem to be interested in him at all. We’ve managed to coax them into smelling him but they really don’t seem to care.

    Here are a couple videos from the past couple days and also some photos.

     

    Evan finds his thumb from William Wood on Vimeo.

    This is the first time that Evan really found his thumb and latched onto it. We put him on his belly for tummy time and he was not real happy about it but once he found his thumb it was just fine.

     

    Yucky medicine from William Wood on Vimeo.

    Evan likes most of his medicines, apparently not this one. Poor guy.

  • Ohh noooo!!

    The house is a mess!

    Oh you didn’t think that something bad happened did you? 😛 Dirty trick, sorry. Guess what?!?! As I am sure you gathered from the messy house. WE’RE HOME!!!

    Since Evan’s Broviac removal, echo, EKG, and boy surgery went so well and were done so early yesterday they decided to let us go home on Thursday instead of Friday! We’re very happy to be home but we’re exhausted from the long day of packing, moving, unpacking, and getting in our last minute visits with as many people as we could find. I can’t even explain the emotions we were feeling today, it was insane. Very excited and happy to finally be going home. Sad that we were leaving our heart families and caretakers. Nervous about what the next several months is going to bring. And more powerful than any of those… shear elation that everything went well and we were able to go home with our hands full and not empty. Too many parents are not as fortunate as we have been. We finally got home at about 8PM, enjoyed some delicious Pizza King, and started getting settled in. Mr. Evan started to get cranky and we realized that we didn’t get any baby tylenol from the hospital for pain, so I had to take a trip to Meijer at 10pm. What? Well yes, of course I took Evan, are you kidding me? And look what he spotted…

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    Milks!

    We wanted to get pictures of Evan with as many people that took care of him or were directly involved in his care as we could, too bad we thought of it the day before we left. We missed several people, 🙁 . You’ll see many faces in the gallery below. I can’t say enough good things about the people at Mott Children’s Hospital. I couldn’t even thank them without turning into a blubbering mess of emotion. Not that there’s any way to adequately thank someone for saving the life of your child. Everyone there just loves our little guy and you should have seen them light up when they heard he was going home. Wonderful, wonderful people. We’ll be seeing them again in 4-6 months for surgery #2, the hemi-Fontan.

    Going home outfit provided by Barb VanEseltine all the way from Thailand. Thanks Barb!

    Enjoy the pictures! Be sure to look at page 2 and 3 of the pictures as well.