Author: William

On Saturday we went to GrandRapids in search of some good deals on baby stuff since USA baby is going out of business. With prices like that it’s no wonder that they are closing their doors. We thought we could get a toddler car seat on sale but their “retirement sale” price was no different than what I can buy the same seat for on Amazon. We went to Woodland Mall and daddy bought got some good deals on clothes. Evan spent most of the time awake, taking in all the sights. Any fussiness was short lived. Carrabbas for lunch… we took some pictures while we waited for our food to come. We also went to the Carter’s store, the baby clothes mecca. We were hoping to get some non-onesie clothes since onesies will be a pain once Evan has the g-tube installed. We got a couple things. A little girl came over to me while I was pushing Evan in the stroller, she was probably 6-7. She wanted to know all about Evan, age,  name, why he’s making those noises, and most importantly what that tube on his face was for.  We give people, especially little kids, very generalized information about Evan’s condition.  We love talking about our warrior son and everything he has been through and how awesome he is, so don’t be afraid to ask us or others about their children.

On Sunday we went to Ann Arbor for the open house of the brand new U of M C.S. Mott Women’s and Childrens hospital. We stopped to see little Mia, Wendy, and Bobby Wilson and got to see a couple of Evan’s nurses. Nurse Bethany snatched Evan up as soon as I walked in the room with him. Everyone kept commenting on how good he looks. The new hospital was beautiful and the open house was a success, it was packed. Getting from floor to floor was a waiting game for elevators especially for us with a big stroller. Organized chaos. Unlike the ICU’s in the old hospital, the new hospital has all private rooms and every room has a beautiful view and a nice big flatscreen TV. The nurses have little stations outside each room with a computer and a window so the can see inside each room. In that sense the room isn’t private at all since anyone walking by can see into your room but at least your not sharing a room with a loudmouth anymore.

 Evan did exceptionally well with all of this weekend’s travels.  It was interesting being back in the hospital.  We definitely don’t get as many looks or questions because people just know.  We did hear that he is “definitely a boy” which means mama can’t throw a dress on him and slap a bow in his hair and think that people could be tricked into thinking he was a girl.  We have quite a few pictures in the gallery this time.  Some are  from hanging out with Daddy in his room.  A decent amount are from the hospital and have captions.  The last bit are the result from a busy weekend out and about. 🙂

 

 

I just wanted to let everyone know about our most recent appointments and of Evan’s upcoming surgery. Yes surgery.  😥

On Wednesday morning we met with pediatric surgeon Dr. Downing at Bronson Methodist hospital in Kalamazoo. We were referred to him by our cardiologist Dr. Fountain-Dommer for the installation of a g-tube. I have mixed feelings about him. On one hand he was very knowledgeable, answered all of our questions, spent quite a bit of time with us, and was very nice. On the other hand he clearly didn’t read one shred of Evan’s file as he mentioned running a bunch of tests that Evan had already had. I guess it’s not a big deal; he sees dozens of people a week and can’t possibly read everything nor does he probably need to. I think it’s just one more point of irritation with the hospitals and doctor’s offices. How many times do I have to tell people at these offices the same things over and over? Evan’s medical history, the medications he’s on… Come on, ever heard of a computer? It’s pretty neat, you can share information, buy the latest copy of Dairy Goat Journal, watch live video feeds of bald eagles giving birth to their young high up in their nest, and watch videos of people doing things to themselves that you don’t even want to know is possible. Sorry… rant over, on to what happened at the appointment.

Evan will go in for g-tube surgery on Tuesday November 8th at 7AM. Sarah and I were reluctant when it was first brought to us as a possibility but as the weeks have gone on and we’ve talked to more and more people we feel that it’s the best thing for Evan. There are many drawbacks to the NG tube that Evan currently has and it has become clear that his tolerance for eating orally is not getting any better. If anything it’s getting worse. The last several days his feeds have been almost entirely by tube because he’s refused nearly all attempts at feeding by mouth. I’m afraid he’s already developing an oral aversion because of the tube in his nose/throat. I’ll be happy when it’s gone and I am sure Evan will feel much better as well.

The surgery should only last about 30 minutes but they will keep Evan throughout the day and likely overnight just to make sure that all is well, he’s tolerating his feeds, and to teach us about the tube and pump. Here’s what the surgery consists of:

 

A small incision will be made in the belly button and a camera will be inserted, another small incision will be made where the port will go. The stomach will be pulled up to the abdominal wall, an incision made into the stomach, and the g-tube inserted. A balloon on the inside portion of the tube will be blown up such that the tube and stomach is held securely to the abdomen. Over time the stomach will adhere permanently to the abdominal wall and may be cut away at a later surgery but is not necessary.
On the outside the tube/button will look like this. It will rotate fairly freely and will be rotated on a regular basis to keep it clean and healthy. It comes about 1/4″ off the surface of the skin. When it’s time to feed the cap is opened and a tube is inserted and locked in place. He can either be fed by gravity like we have been doing with the NG tube, via a syringe by pushing food into his stomach, or with a pump that can perform feeds at regular intervals or continuously overnight. How he’s fed will depend on what the nutritionists would like us to do.

Here is another view of the device: 

The most shocking or disconcerting news that we received was the answer to this question. “Do you expect that Evan would have the g-tube through all of his heart surgeries?” To which Dr. Downing answered, yes. This means that Evan will have the tube until he’s 2-3 years old. That was not what we wanted to hear but after hearing the doctor’s explanation it made sense and I am much more comfortable with it. Just because Evan has the tube does not mean that we need to use it if he starts taking all of his feeds on his own. On the other hand if we need the tube for feeding or medication it will be there, especially following his upcoming surgeries when many heart kids have trouble feeding normally.

We’ve heard from many parents and doctors that the g-tube was the best thing they could have done and they’d wished they did it sooner. I hope we have the same experience with Evan.

Following the appointment with ped’s surgery we met Dr. Loker, one of the other pediatric cardiologist’s at Bronson. We met with him because Dr. Fountain-Dommer was not in the office that day. I got a really good impression of Dr. Loker as well. And….. Evan has gained another 5 ounces!! He’s up to 11 lbs 7.7 ozs!! Hooray.

 

Ya don’t hold your breath… but I’m going to try if for no other reason than these loooong posts really suck to write.

It’s been two and a half weeks since the last post. I keep saying that i’ll make one more big post to get caught up and then make smaller posts thereafter because… 1) they take forever to write 2)make writing a post that much more time consuming and easier to put off and 3) people don’t want to spend more than 2 minutes reading a post anyway. So here goes…

Since the last post we’ve had:

2 Pediatrician appointments
Normal, nothing out of the ordinary to note.

2 Cardiologist appointments
We’re still getting ‘the weight talk’ from the cardiologist and for some reason we sometimes get this vibe from her that she’s annoyed with us as though it’s our fault that he’s not gaining weight. <shrug> maybe it is…maybe we’re not putting enough in his tube, maybe we’re moving him around too much after he eats and that doesn’t help his puking problems. I don’t know.

We’re doing much better, we’re pushing him harder than we did before. We’ve increased the amount of formula that we add to the breast milk, increased the amount that we give him per feeding, and we’re still getting up in the middle of the night to give him a sneak feeding while he sleeps. He seems to be puking less than before maybe 1-2 times instead of 2-3 times per day. At the last appointment he had gained 4 ounces from the previous week, an all time high since we’ve been home so that’s definitely a step in the right direction. Since he’s gained a little weight some of his meds were increased a little bit. At the last appointment Dr. Fountain-Dommer also added a new medication, Digoxin. After looking at the echo-cardiogram she added this medication to increase the force or distance that the heart contracts on each pump.  We’ve got an appointment with pediatric surgery next week to discuss and probably schedule G-tube surgery.

Lunch with LIMS people
LIMS stands for Laboratory Information Management System, it was a big project that I worked on implementing at work for over 2 years. Of course everyone hates it as they do all new things…they have good reasons and their old system had all kinds of custom things built in that were lost… anyway, it’s all Karen’s fault 😀 . We met at Angelo’s for an Evan meet and greet. Barb and Karen spent a majority of the lunch holding the little man. I think they are both in need of some grandchildren.  😉 Michelle, Paul, and Will also came to spend some time with us. Thanks all! It was great to see everyone again.

Lunch with the QOTT Quad

Three people in my group at work all had kids in July. Brooke had a girl, Jenny had two boys, and I was blessed with Evan. Our group Quality Operations Technology Transfer (QOTT) refers to the babies as The QOTT Quad. 🙂 The seven of us met at North 11 for a nice meet and greet. Evan was on his best behavior and slept through almost the  whole thing. It was good to see all the babies and talk to the Brooke and Jenny about how life has been over the last few months and express my jealousy for neither of them being back at work yet. From left to right is Cameren, Evan, Garrett, and Cody.

Early on Evaluation

In each state there is a program for infants and toddlers that have developmental delays and/or disabilities. In Michigan, this program is called Early On. When we were at the hosptial a social worker suggested that we have an evaluation just to see if Evan had any delays and if the program could do anything to help us. In general, children in the hospital lose a day of development for each day that they are there. On a Friday morning three women came walking up to the door and I thought, “uh…. wow, you have to be kidding me. This is serious business.” As it turns out one of their cars broke down about 5 minutes from our house and the third woman was the person that rescued them. The evaluation was very thorough and we were very impressed by the people that came. They looked at overall health, vision, hearing, fine motor, gross motor, cognitive thinking, communication, social emotional, and self-help. As we would expect due to his long hospital stay Evan showed that he was a little behind. The categories of concern were fine motor, gross motor, and cognitive thinking. This encompasses things like holding his head in symmetrical positions, bringing hands to midline, holding hands open or loosely fisted, playing with hands at midline, and reaching for things. They gave us some information and some things to try including baby massage techniques  which we have done a few times and he really seems to enjoy. We’ve already seen an improvement in his motor function since we’ve started focusing on getting him to bring his hands together and reach for things. They also set us up with an occupational therapist that can give us suggestions and help with getting him to feed. It was a great experience and I am glad that programs like this are available to people.

Trip to Ann Arbor
We went to Ann Arbor for a baby shower, the MI vs MI State football game, and to visit friends at Mott Children’s Hospital. Evan does great in the car, he spends nearly the whole time sleeping. This trip taught me something… don’t leave the house with an infant, especially one with medical needs and feeding problems. By the time we got to the hospital Evan was hungry and mom had to go pump. I fed him in the hallway, but as usual he didn’t take enough by mouth so I had to setup the feeding  tube on his stroller. We saw Mia Wilson for a little while and talked with her dad Bobby. If you’ve kept up with our website you probably remember Mia. Please keep her and her family in your thoughts and prayers. Little Mia has been at Mott since February and was very close to going home last week. Since then she has had a couple setbacks that have kept her in the hospital. She’s doing better but the doctor’s have not been able to trace the cause of the issues. We made it to the baby shower about an hour late, Evan was pretty good to start but got fussy and inconsolable pretty quick, clearly tired from all the action. I put him in an empty room in his bouncy seat, fed him, and he fell asleep. I went outside to play some bocce to be called back in after only a few minutes since baby boy projectile vomited all over the kitchen floor. Then to top it all off, we’re driving home and I realize that we forgot our camera and more importantly his heart medication in the refrigerator. Oh no. Very lucky for us our neighbor had not left yet and after a quick phone call they saved the day. Thanks Jason and Carin.

Milk Scan

This is a test where radioactive material is added to Evan’s milk and he’s continuously scanned for a long period of time (1 hour) to see how much reflux is present. After an hour we leave for an hour and then come back for one more 5-10 minute scan to check for any aspiration into the lungs.  This test was done on the morning of 10/19 and took all morning. Evan did pretty well, slept through most of the scan. After the initial hour we started to put him into the car seat and he threw up all over the floor. Then about 15 minutes later when I was on my way to get some much needed coffee he threw up again. Did I mention that I had given his meds right before he threw up? Ya…. that happened twice. I gave his meds 3 times that morning. They say that if he throws up within 15 minutes of giving the medication then you give it again. Bah…. poor guy. Results of the milk scan? NORMAL?! What the!? <sigh> ok, well I guess that’s good but we we’re hoping for something to point at his throwing up issues. On the great side, this probably means that he will not need the Nissen wrap that was suggested. We’ll find out for sure at the pediatric surgery appointment next week.

Sarah went back to work
Sarah went back on October 17th. That week  we had an appointment on Monday, Wednesday, and Thursday. Logistically, appointments are such a pain. I either have to work from home for a half day, lose an hour driving back and forth, or Sarah has to take time off of work. It doesn’t help that work is 20-25 minutes from work or that the pediatrician is 30 minutes from the house. Sarah is not very happy about being back at work, for obvious reasons. She misses Evan terribly throughout the day, being gone for 12 weeks and coming back is difficult, you feel like you’ve forgotten everything, and pumping at work?! Bleh. My mom is doing a great job and Evan has taken to her just awesome. Most of the time he takes more food by mouth for her than she does for us and he almost never pukes when my mom is taking care of him. Maybe she’s just lucky. Ya, let’s go with that.

3 Months old last Friday
 Yay!!! Oh baby boy, you’re growing up too fast already. What a great feeling it is to know that we’ve spent more time at home with him than we spent at the hospital.

Halloween Party

I know it’s a little early for a Halloween party, but people are busy the next couple weekends so we got some of the babies together for a party/costume contest. I told my friends to prepare themselves for a loss because there’s no way anyone can top Evan’s costume. Much smack talk happened and I refused to tell any of them what he was dressing up as. In the end our little dragon took home the win! Look at how cute he is. The costume is waaay to big for him, to the point that I am sure he’ll still fit into it next year which is good because I’ve never spent so much money on a costume for myself let alone a small baby. The pictures of the party are not very good, we’re going to take more of Evan in his costume and i’ll post them when we do.

 

My parents have lived in Florida for the last 12 years. For some reason I can’t begin to understand they prefer the warmth, beautiful weather, and year-round beaches to the ever changing weather, overcast skies, and snow of Michigan. Well all of that is behind them now as they made the 1200+ mile drive with a 26 ft truck, 12 ft trailer, a pickup, cats, and my nephew to Kalamazoo at the end of September. We are very grateful that my parents are willing and able to make such a life change to help with Evan. Instead of a daycare, my parents will watch Evan during the day while mom and dad are at work. Thanks Nana and Papa! Thanks to all my wonderful friends that helped get them settled into their new apartment just a few miles down the road. And if any of those people are reading this…. there’s plenty of work left to do in my garage and basement with the things that wouldn’t fit in their apartment. I’ll supply food and beer.

We transmitted our first set of pacemaker data to U of M with our fancy little gizmo. How fancy? Well when it dials its circa 1995 AOL beeping and clicking let’s you know it’s working. It worked just fine and the response we got back the next day from U of M was that everything looks good.

 

 

 

Let’s talk about eating, or lack thereof. Evan has gained…. nothing since we left the hospital? Shocked? We were too. Feeding continues to be something that we battle. Between Evan not taking enough food, being visibly uncomfortable when he does, and throwing up afterwards it’s been an uphill battle that we’re not making any progress on. Evan had a swallow study and an upper GI study to make sure that his anatomy is correct and to check for reflux. Both tests showed that his anatomy is normal and he’s not swallowing into his lungs.  

The GI study was inconclusive about reflux, but we didn’t need a study to tell us whether or not he has it, it’s pretty obvious if you spend some time feeding him. Both studies involve Evan drinking a bottle of a barium mixture and then watching him swallow on a live x-ray. The barium looks like liquid chalk and doesn’t  make for easy diaper cleanup. When Evan eats it’s a roll of the dice whether or not it will stay down… sometimes he’ll take a huge bottle and not throw up, sometimes he’ll take 1 ounce and throw up, sometimes he’ll even throw up 2 hours after he ate. He’s on Zantac to reduce the acidity of anything he refluxes so it does not irritate his throat and he’s on Reglan to help promote digestion. Baby boy… you’ve got to eat and you’ve got to keep it down.

Other than feeding he’s really good. We’re still going to the doctor constantly, generally 2-3 times per week. This week we were at the cardiologist and they are doing the normal routine, EKG, listen to his heart, check his sats… in the 60s! Oh S!@%. They should be in the 80s. What’s going on? She listens to his heart and then we go to another room for an ultrasound, everything looks good. They check his sats again, and they’re back in the 80s. What changed? Well the room where the ultrasound machine is… 15° warmer. That’s right folks, he was cold. Cold makes the veins constrict and less blood gets to the extremities.Another cause of low sats? Dehydration…BAH! It all revolves around feeding.

 Last week we started fortifying Sarah’s breast milk with formula to raise it from 23 cal per ounce to 27 cal per ounce. That didn’t help… Evan just will not take enough milk. So we  had to do it… we had to put the feeding tube back in. We didn’t want to do it and we’re concerned about Evan developing an oral aversion because of the irritation but we don’t have a choice, we’ve been home for 5 weeks and he has not gained 1 single ounce.  😥 We’ll get there it’s just going to take more time. The cardiologist mentioned the G-tube again… I’m beginning to think that it might be the best option. Not yet… I want to give it some more time, but maybe it is the right thing for him. The success of the second surgery and his recovery is more important than him having a tube coming out of his stomach for a little while and the risks that come with it. We’ll see how things go….

I love to sit and watch him watch things. He absolutely loves the television, the bright light and the moving pictures. It has become more frequent now, so it’s got to be more than a coincidence but when he doesn’t want to eat and you put the bottle in his mouth he’ll actually swat it away with his hand. If he’s swaddled he’ll push it out with his tongue or keep his mouth open wide until the milk drips into his throat, he starts to choke, and you remove the bottle, then he’ll close his mouth. He’s no dummy, and boy does he have our number. He also likes to look at himself in the mirror, there is one in his crib and another in his swing that he just stares at. He’s holding his  neck up really well, kicks his feet  out and stretches his whole body out when he’s mad.

He’s absolutely the most amazing thing that’s ever happened to me and my life is forever better because I am Evan’s dad.