livingwithevan.com

Author: William

  • University of MI Appointment #3

    Mom and Evan are in the home stretch now, we’ve got just over a week to go! We have worked out most of the logistics for the birth, at least the ones that we can control, the rest is up to Evan and when he decides that he wants to make his debut.

    The appointment today was very routine and barely worth the drive to Ann Arbor, but that’s ok. They asked how Sarah was feeling, asked if she was experiencing any signs of labor such as contractions, fluids, etc. Nothing to report there. Then the doctor says, “ok, we will scheduled your induction for July 18th.” Huh? This is the first we have heard about being induced. We put the brakes on that… We want to let it be as natural as possible, the longer he stays in there the bigger and stronger he’ll be for the surgery. We informed her that we will be moving to Ann Arbor next week to wait it out and don’t want to induce until the following week if nothing has happened. We’ve talked about this with them before but I guess when you talk to a different OB every time the wires can get crossed. She had no issues with our plan.

    We talked about what to do if she does start having contractions before we get ‘moved’ to Ann Arbor and ran through a few scenarios…

    • Call the U of M Birth Center Triage if we have any questions 24/7  (speed dial added).
    • If her water breaks or she starts to have any bleeding then we go directly to the nearest hospital.
    • If she starts having contractions and they’re regular and strong we can go to the nearest hospital, if when we get there and they check her out, she’s not dilated very much then the best bet is to get back in the car and head to Ann Arbor.
    • If contractions get to be about 8 minutes apart, strong, 1 minute in length, and consistent for an hour then we would head to Ann Arbor.

    I don’t suspect that we’ll need to do any of these, but we’ve got to be thinking about them just in case.

    One concern to us is the possibility of Sarah needing a c-section so we talked about that also. In the event of a c-section Evan would need to be moved to Ann Arbor and mom would be stuck in Kalamazoo until she’s been released from ‘major surgery.’ What scenarios would necessitate a c-section?  We talked about a few of them and the doctor did not express any concern that a c-section would be needed. <fingers crossed>

    They listened to Evan’s heartbeat and sent us on our way. Drive time 3.5 hours, time in waiting room/exam room waiting to be seen 1.0 hours, actual appointment 20 minutes. 🙂 <shrug> oh well, lol.

    We will move to Ann Arbor next week, have 2 appointments in Ann Arbor starting the following week and if Evan has not come by July 25th then they will begin the induction process. They prefer to start the induction early in the week with heart patients so that it’s not happening over the weekend when the hospital and especially the pediatric unit is not at full staff. Good call!

  • University Of Michigan Appt #2

    University Of Michigan Appt #2

     

    We had our second appointment at the University of Michigan on June 10th. This appointment put little Evan at 34 weeks and 5 days.

    We started the day off with a fetal echocardiogram with Jane. Evan was awake and ready to play. He was rolling over and just moving a lot in general making it hard for Jane to get all the information she needed. It took a while but eventually she had measured everything she needed. Dr. Owens was looking at the images in another room and came in to talk to us as well as take some images of her own. She said that everything looked great and there were no unexpected surprises. Yay! Evan will not have another echo done until after he’s born at which time they will do a very extensive echo and gather all the details needed to plan his surgeries.

    We were approached about a research study and asked if we would like to take part in it. Connie came up to talk to us about the study and see if we were interested. The study is led by Dr. Mark Russell which if you read the last U of M post was the first doctor we met with at U of M that thoroughly explained Evan’s condition to us and what needed to happen to fix his heart. The study focuses on children born with heart defects and need open heart surgery. Some children have more difficulty recovering from the procedures than others despite all the steps taken to protect the tissues from injury. The purpose of the study is to see if there are any inherited factors that help determine the ability of each child to tolerate the stress of surgery. Our only involvement in the study is to allow them to take a teaspoon of Evan’s blood (which would happen at the first surgery when he is sedated) which they will use to look at his genetic markers compared to other babies. Then we give consent for the research team to get copies of Evan’s follow up appointments so they can track how he’s doing up until 6 years old. The team is make up of several pediatric cardiologists, an anesthesiologist, surgeon, and bio-statistician and they are looking to have 1000+ patients in the study. Participation in this study is a no-brainer for us. I hope that the information that they gather can help other children down the road.

    We talked to the Barb, the social worker about housing in Ann Arbor while we are there. We really need to get on the ball with this. We still have not booked anything and it’s only a month away. Barb is supposed to be getting us some information on corporate apartments. We really don’t want to stay in a hotel type room for that period of time. I’m really going to focus on this next week.

    We met with an OB/GYN for a pretty standard appointment. We didn’t really get anything out of meeting with her but <shrug> that’s ok. She gave us some information about the U of M triage phone, we talked about the group B strep test that every mom has to have before birth, etc. We asked about immunizations for people in contact with Evan and she echoed the need for the pertussis vaccine (whooping cough). This is the Tdap (Tetanus, Diphtheria, Pertussis) vaccine that everyone should have a booster of every 10 years. If you have not had one, get one, it’s deadly, especially to small children. It’s highly contagious and people can transmit the bacteria for 2 weeks after they begin coughing. The illness can last ~6weeks.

    At 3pm we had an ultrasound with Cathy… Measurement! This is what we’ve been waiting for! It was great. Evan was up to 5lb 8 oz. Yay!

    Next appointment at U of M at 38 weeks.

     

     

  • Biophysical US @ 33 weeks

    Biophysical US @ 33 weeks

    Last Friday we had our second biophysical ultrasound and non-stress test. As it turns out Friday afternoon is not a good day for appointments. Wow, was it busy. The nurse came by after about 15 minutes, looked at Evan’s non-stress results, said it looked great but she wanted to get 8 more minutes of data. 25+ minutes later they unhooked Sarah from the machine. We went over to the ultrasound area and waited some more. The ultrasound was pretty standard, it’s always great to see him. They didn’t see any issues.

    I am really excited for our next U of M appointment this Friday. They are going to look at his heart again and see how it’s doing but what I am most interested in are his measurements. It has been several weeks now since we have heard anything about his size and we’re anxious to hear.

    The surgeon says, the bigger the better. I think this will play a large role in the delivery. We’ve got some logistics to figure out still. Do we “move” to Ann Arbor early and wait it out? Do we schedule it and induce? Do we wait for labor and drive the 1.5 hours to Ann Arbor (OB’s suggestion)? I think the exams and ultrasounds the last 2-3 weeks will help us make that decision. We would prefer to let it happen naturally but if he’s already a really good size (which at last look was looking good) then maybe it would make more sense to induce for logistical proposes.

  • Baby Shower

     

    Some friends threw us a baby shower today and it was great. Karen Jackson prepared the food and as always, it was fantastic. Thanks Karen!

    Evan got lots of great things today. Lots of clothes, some nursery items, books, blankets, and best of all… The bedding set that we were hoping for! Thanks Miriam, Carie, Karen, and Heather! Thanks mom for the blanket that you made, it’s beautiful and soft… it will surely keep Evan warm when you’re not around to hold him.

    What a great feeling it is to have such wonderful friends. Here are a few pictures from the day… I took some video too but I need to do some editing before I post it.

  • Keep growing baby boy!

    Keep growing baby boy!

     

    Yesterday afternoon we had another doctor’s appointment, just a routine one here in Kalamazoo. As always we had an ultrasound and Evan is growing just like he should be. In fact, in the last week and a half he’s gained 15 ounces! I’ve searched and searched online and I cannot find any decent charts or calculators that would help us predict his birth weight. They say he’s in the 60th percentile, you would think that it would be pretty easy to find a chart that plots that information…maybe you guys will have better luck than me. Obviously the weight can vary quite a bit, but I am still curious. After all, the heart surgeon said “the bigger the better.” We’re hoping for a big ‘ol turkey. 🙂

    From here on out we’ll be having an appointment every week to check on his progress. We’ll be able to fill an entire album with pictures before he even gets here. Yay! Maybe one of these days we’ll be able to get a decent 3D picture of him. I thought yesterday was going to be the day, he was head down and face up. When I asked for a 3D picture… the tech said “this is not a 3D room, and the cord is lying over his face anyway.” C’mon baby boy, don’t be shy.

  • Goodbye Toes.

    Goodbye Toes.

    We took these pictures at 25 weeks but I forgot to post them. Tomorrow starts week 28, I will take some more and post them soon.

  • Appointments, Appointments, Appointments…

    Appointments, Appointments, Appointments…

    I am so very thankful that our medical professionals caught this when they did. I feel a sense of calm that we have the opportunity to be prepared for what is going to come. I have been doing a lot of reading and I have seen many stories where the family had no idea, even with the current technologies, that their child was suffering from a heart defect. After seeing an ultrasound of a normal heart and the one of Evan’s, I don’t know how this is possible, the differences are dramatic, but apparently it happens. A family takes their baby home with no idea that anything is wrong, the baby starts to exhibit symptoms like feeding problems, blue lips, lethargic, etc. What a terrible thing to go through. Not having all this worry would be nice, but I’ll take the worry gladly with the ability to plan.


    We’ve had about 4 ultrasounds, a fetal echocardiogram, appointments with doctor’s, cardiologists, high-risk OB’s, etc. The biggest appointment yet is coming up in a couple weeks. We’re meeting with the doctor’s at the University of Michigan for the first time. This is more than likely where Sarah will give birth and where Evan will have all of his surgeries. I am really looking forward to hearing what they have to say and to see the facility. They are the #4 hospital in the US for pediatric heart care so I know we will be in good hands. It’s going to be a loooong day though. 830AM until 4PM with back to back appointments. Cardiologist, pediatrician, genetic counselor, pediatric cardiothoracic surgeon, high risk OB, ultrasound…. It’s going to be a great day, honest. I think we both need someone to help put our minds at ease about this whole thing and I think they are just the people to do it. Don’t get me wrong, the people at Bronson hospital have been great, but they have not seen nearly as many of these things as U of M. Our cardiologist at Bronson has only ever had one other patient with exactly what Evan has (and he’s doing great and has completed all his surgeries). I really want to hear it from the experts in the field that see these all the time.

    Well, I should be getting to bed….Daddy boot camp in the morning. I can’t imagine that I am going to learn much, but that’s ok. 🙂

  • Normal Heart vs. Evan’s Heart

    Normal Heart vs. Evan’s Heart

    I created a new page to describe the differences between a normal heart and one like Evan’s… you can see it under the menu item Evan’s Condition or by clicking here.

     

  • Finished the accent wall in Evan’s room

    Finished the accent wall in Evan’s room

     

    You don’t want to know how long this took…. but I love it.


     

     

     

  • Fetal Echocardiogram today…

    Fetal Echocardiogram today…

    We went to the cardiologist today and were officially diagnosed (previous was best guess by radiologist, OB, etc) Evan does indeed have a congenital heart defect but it’s not hypoplastic left heart syndrome. He has a much more rare (1 in 25,000) defect called Tricuspid Atresia with Left Transposition. It’s two parts, 1) There is no tricuspid valve and 2) His left and right ventricle are transposed, meaning on opposite sides.

    I’ll be updating the website with new information but it’s going to take a little while as this is much more rare and hard to find information about.

    Important to note… this still means lots of open heart surgery for our young one, but it sounds like although it’s more rare, it has a little less risk. Stay tuned.