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Happy Birthday to my Daddy, the bestest daddy I could have asked for!  I am so glad you shared your birfy day with me.

Love,
Evan

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)

 

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!

 

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…

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.

 

 

 

 

 

We got to go for our first walk outside with Evan today. We put the two med pumps that he’s still on with us in the bottom of the stroller and went out for a 15-20 minute walk in the huge courtyard. Evan was asleep before we ever even made it outside and never opened his eyes while we were out there. Let’s be honest though, the walk was not for Evan, it was for mom and dad. It felt so amazing to do something ‘normal’ with him, and more than that it gave us a sense that the end of our hospital stay was drawing near. Let’s hope that’s true.

Here are a few pictures before, during, and after our little adventure. Oh, I got him a new outfit for the occasion. 🙂

 

 

Since reloading the phenobarbital and continuing the maintenance dose Evan has not had any more seizures. This afternoon he was removed from the EEG and we gave him a nice bath to get all the wax and adhesive off of him. He was awake and alert for a very long time today, from about 10:30am until 4:00pm. Lots of looking around, making faces, smiling, and best of all zero crying…which was made up for by the two kids on either side of us screaming most of the day. Seeing him alert, moving around, making faces, it’s the most wonderful thing in the world.

Here’s a few pictures from throughout the day.

 

The doctor’s restarted Evan’s feeding yesterday afternoon, and recently increased him to 6 mL/hour. They will keep increasing him every 8 hours until he’s at his goal intake of 22 mL per hour and then they’ll switch to 44 every 2 hours, and then 65 every three. This will take several days to get him there but they want to make sure that he is handling it well.

As far as the seizures go, he’s had 3 non-clinical seizures since yesterday afternoon. One at 9:30pm, one at 4:00am, and one at 9:30am this morning. A non-clinical seizure is a seizure in which there are no outwards signs like twitching, loss of body control, non responsiveness, etc. Sarah was holding him at 9:30pm last night and did not notice anything out of the ordinary, it was only after the neurologists reviewed the information from the EEG that they know he had the 3 seizures. They gave another dose and are continuing the maintenance doses of phenobarbital and will continue monitoring him on the EEG. Since they gave the extra dose at 11:00am he has not had another episode as of this post. Typically seizures only last a little while (days to weeks) after a stroke so they will continue the non-seizure medication and reevaluate him at a later time. Research is on-going in the neurology community to see what length of time is best but right now they just don’t know.

The CT scan is still scheduled for next week to take a look at the other side of his brain to see if there is indeed something there indicating another stroke at a different time.

He’s sleeping a little bit more as the phenobarbital is also a sedative but when he’s awake he’s very active and alert. The neurologists came by to examine him a couple times today and they do not see any  signs of any long term effects. In fact they were very pleased to see how active he was and all of the movement he was making.

That’s all for now. Thanks for being on this journey with us.

 

As you read yesterday things went really crazy really fast. Evan is now stable and relatively happy back in the PCTU. The echo, x-rays, blood gases, and cultures are not pointing to NEC which is great. Because he had some symptoms and because the doctors take NEC very seriously they are treating him with IV antibiotics and putting a hold on any feedings by mouth for at least a week. He will get nutrition through his IV but nothing can go into his stomach so he’ll be pretty irritable for the first 2-3 days. This will give his stomach and intestines time to calm down and heal if there was anything going on with them.

When he was moved to the PCTU he was under a lot of stress so he was sedated and intubated (put back on the ventilator). Additionally, the femoral arterial and central lines that had been removed for us to go to the floor were put back in so they would have access for delivering medications and fluids. His feeding tube (that daddy worked so hard to put in the night before) was replaced with a similar tube for removing gas from his stomach. He went back on Milrinone, was given potassium, and some other things. Through the course of only a couple hours his pH and lactate were brought back into the normal range and he’s been doing well since. His ventilator settings were reduced through the night and by 9AM they did a sprint and removed him from the ventilator. One of his femoral lines and the tube in his stomach for gas was also removed.

Dr. Mackie came by this morning and discussed another possibility with us that they are investigating. It’s called coronary ischemia and essentially means that there was not an adequate amount of blood being supplied by the coronary arteries to the heart. This possibility was brought to light during the echocardiogram done yesterday. Also during this echo they noticed a difference in his ventricular function (the beat of the ventricle) in comparison to the echo done a week ago. This could just be due to the stress he was under yesterday or because of the pacing being supplied by the pacemaker.  They are still investigating whether or not this is an issue and what they might be able to do about it. They are monitoring it by testing the cardiac enzyme troponin. These levels are currently elevated but not at a remarkable level.

Since he’s unable to eat for at least a week and it’s going to take time for him to work back up to feeding once he’s allowed to eat again I suspect we’ll be here at least 2 more weeks. We don’t know what that means for us. We don’t expect them to keep us in the PCTU for that whole time if he’s stable, but I don’t really want to go back to general care unless they learn what happened and do something about it. We could go to moderate care or to the Holden NICU.

We appreciate everyone’s concerns and your thoughts and prayers during this difficult time.

 

 

Just talked to Dr. Devaney and Evan is out of surgery. Everything went great. I was expecting them to put in the dual chamber pacemaker and just use one lead and only pace the ventricle but apparently they put in a single chamber pacemaker. When he has his second surgery in a few months they will put in a 2nd lead and change out the pacemaker from a single to a dual chamber. Sooooo…. that got me thinking, do they re-use pacemkakers? Insurance is going to buy Evan two pacemakers? I want the old one to use as a keychain. Sound good? 😀

Kicker… there’s no bed available in the pediatric cardiac ICU so they’ve got Evan just hanging out in the OR waiting for a bed to become available so we cannot see him yet. 🙁 Knowing he’s ok is enough for me right now but if this takes more than an hour or two then I am going to start going through cute baby withdrawal.

Thanks to everyone for all the kind words, thoughts, and prayers over the course of this whole thing. Your support on Facebook, this website, and over the phone have really helped us get through this. From the bottom of our hearts, thank you.