Just sitting with the little guy getting in our last cuddle time before his big day. He’s so amazingly peaceful this morning especially for not having been fed his least two meals. I’ll be posting here as we hear news throughout the day. Please send all your positive thoughts and prayers Evan’s way today.
Sarah and I ‘moved’ to Ann Arbor yesterday to await the arrival of little Evan. We were planning on moving sooner but with zero pre-labor symptoms we decided to wait until yesterday. She has not had anything other than Braxton Hicks contractions so far but if you ask me, he looks like he’s getting lower.
Our hotel… well…it’s not without it’s issues. 1) it could be cleaner, especially the bedding. I understand that typically it’s only the sheets that are washed between patrons but that doesn’t mean I want to see hair from other people when I pull back the blankets. 2) A car alarm kept me awake most of last night and despite calls to the desk, they could not do anything until the morning. Morning came and the issue was not resolved until after 5pm when the owner finally showed his face at the front desk despite the staff going door to door and me calling the police hoping that they would tow it. Other than those two things the hotel is just fine especially considering the deep hospital discount we’re getting. I don’t suspect we’ll be spending much time here once Evan is born anyway.
We went to Trader Joe’s here in Ann Arbor… I didn’t know what to expect other than Birkenstock’s, granola, and Toyota Prius’. It didn’t disappoint. Oh, and I guess there were groceries too. We didn’t end up buying anything although I was pretty impressed by the store. I’ll go back when I have more time to look around. I had no idea they had their own brand. Their meats looked especially good. There’s a Whole Foods here too, have not been there yet, maybe tomorrow. 🙂
Non-stress test appointment was Monday 7/18 at 9AM. This test is very similar to the ones we had at Bronson every week. The difference here was that Sarah did not have to push a button every time she felt him move and they had an ultrasound machine in the area where they also did a quick check of how much fluid is surrounding the baby. Evan was on the low end of the range that they like to see but that’s to be expected considering he’s now two days past his due date and we think, a pretty big boy. As he continues to grow he’s been a lot more quiet, not moving around nearly as much as he has in the past. Hopefully he’s growing tired of being cramped…
After the appointment we went to a really cute baby store called Elephant Ears. I felt like the store had a ton more girl things than boys. Some of it was pretty expensive… I had no idea that such small amounts of cloth could cost so much. There was a $100 sleep sack. <shudder> We each bought a couple small things because you just can’t resist cute baby stuff. I know that Evan doesn’t need a pair of $40 Keen sandals like dads and that he’ll probably only wear them a few times, but one day… mark my words, he’ll have some, just not today. I mean come on, look how cute they are. Click
Our next appointment is on Thursday, another non-stress test and a routine OB appointment. Depending on how things look on Thursday we might decide to take some action to move things along or we might just keep waiting. Either way, the plan right now is to let it happen spontaneously unless nothing has happened by next Sunday (July 24th). At that point they would induce labor if he’s still being stubborn.
Keep us in your thoughts…We will let you know if anything changes.
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…
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!
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.
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.
Continuing since our 30th-week appointment, we are going to have weekly ultrasounds. Usually this wouldn’t happen until week 36, but seeing as we are a special case we get to go more often. Starting at this appointment, we also have weekly fetal non-stress tests. I had no idea what this was but I get to sit in a chair for 20-30 minutes with 2 monitors strapped to my belly. One is for measuring contractions and one measures the fetal heartbeat. I am given a button (think Jeopardy-type buzzer) that I have to press every time I feel Evan move. They are looking for a correlation of Evan moving plus an increase in his heart rate within a set amount of time. Evan passed with flying colors. His heart may be bojangled but dammit it works awesome. Lil fella is going to be alright after all. 🙂
The ultrasounds we have now are called biophysical ultrasounds. It just means they are looking at his overall development. They don’t take any measurements except for amniotic fluid levels. A couple weeks ago it was suspected that the ventricles in his brain were too large so they also measured these. We weren’t worried then and it turns out that he is growing into them just fine. They appear pronounced but measure normally, so there are no other indications of any problems. He was again head-down facing my right side, which explains why I suddenly get shooting pains on my right side and rib area. Of course we couldn’t get a profile pic because both his hands and a foot were in front of his face. Plus it is only getting more and more crowded so the likelihood of getting a nice profile ever again is getting slim. We did notice his little hand holding onto something and it was the umbilical cord. When we zoomed back a little bit we could see that he was not only holding onto it but sucking on it like a paci. We could see his little chin moving and everything. Very cool.
Thanks Mom for coming with me to my appointment. I’m really happy that not only I got to share him with you but also you got to experience your first US. Only a couple weeks left until we meet him in real life. 🙂
Here the tech points out the hand, with the fingers on top and it resting in his palm. Nice fat little arm too. If you squint a little you can see that the dark part in his grip is the cord itself.
Zoomed out, to the right you can see the highlighted region of his forehead and start of nose. The flicker of white in the middle of the image was his little chin moving. Too bad he was being a little stinker and wouldn’t give us a better shot.
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.
Last Thursday we had our all-day appointment at U of M. We weren’t sure what to expect but hoped to come away with a better understanding of the process we are going through and the facility that will become our second home. It didn’t take too long to get there – about 1.5 hours – but I can easily see how construction, traffic, or an accident could significantly change that timeframe. I-94 is not fun or commuter friendly.
The hospital was easy enough to find, and you have to pay for parking which I think stinks considering we’ll be spending how much money for services there?? I mean it is cheap (if you don’t lose your ticket…) Unfortunately we will not be in the new women and children’s hospital, but we should be over there for his other surgeries. Too bad, because it looks and sounds lovely. The old hospital… well… let’s just say the conditions don’t exactly match the caliber of care provided there.
8:00 am – Cardiologist appointment
Our first appointment was to receive our second echocardiogram at the Pediatric Cardiology center in Mott Children’s Hospital. We got to meet with Kathy, one of the nurses and the one who would help guide us through our day. I was especially looking forward to this appointment as previously there was a slight discrepancy in what his condition might actually be, and this was an opportunity to have another expert provide their opinion. The tech was very thorough, albeit a bit fidgity and fussy at times, probably due to a lack of angle cooperation by baby tricky. We met with Dr. Russell who confirmed the diagnosis of Dr. Fountain-Dommer. He actually gave her some kudos and spoke very well of her for catching this different condition and not going along with the suspected condition of HLHS. We asked him to point out some structures on the echo and he happily answered all of our questions.
What we learned:
9:30 – OB/GYN appointment
We shuffled off to the Taubmann center for our next appointment. I had no idea really what this appointment was for, other than to load my information into the database. We did come prepared with questions, particularly because we felt that these were the individuals who would be able to give us the best birthing information. We met with Dr. Mozurkewich and again she answered all of our questions. We also talked with a nurse who gave us information on the 3rd trimester as well as a pretty nice birthing book. most of our time in this appointment was spent waiting, but that was ok because we could go over the info received at the cardio appointment.
What we learned:
11:00 – Social Worker appointment
We were supposed to meet with our surgeon next, but since we were meeting her between surgeries, we needed to be a bit flexible with our time. We went back to the Pediatric Cardiology center, paged Kathy the nurse, and she got a hold of Barb, a social worker with the department of pediatric cardiology. She has worked there for 22 years and holds a wealth of information
What we learned:
11:45 – Meeting with the surgeon
This occurred during our conversation with Barb as the doctor became available. Her name is Dr. Jennifer Hirsch and she looks way young (we guestimate she should be ~42ish but easily looks 10 yrs younger), is very beautiful (her official doctor pic does not do her justice), very smart (she went to Harvard people), and was extremely kind and open to talk to. She was the first person at U of M to ask if our son had a name and referred to him as Evan when talking about him. Evan will die without any surgical intervention so it was surreal to meet the person who is going to save his life. We cried after she left. It is a bit overwhelming.
Things we learned:
After this we hauled ass to go get something to eat. It’s like they didn’t schedule a time for this or something… very weird…
1:30 – Genetic Counseling appointment
We had to have this appointment even though we received genetic counseling at Bronson. It’s just part of the packaged deal. This was at the Perinatal Assessment Center also in Mott. It was nice to be able to talk to someone again if we did have questions. They offered an amnio again and we declined. Given that no other health issues have come up on ultrasounds we feel the likelihood of him having any genetic condition to be low.
2:30 – Ultrasound appointment
Yay more pictures of baby boy! The tech was lovely and from Kzoo. She said everything was looking good except he was being a little uncooperative and tricky. Afterward, we met with Dr. Treadwell and she confirmed that she did not have any concerns for any other conditions to be present. A nurse, Liz, gave us a tour after the US and showed us the birthing areas and NICU on the 4th floor. It was very nice of her to take the time to help us get a sense of things, although I think we will want a more general tour too in the future.
What we learned:
We are going to go back June 10th for another cardio, OB, and ultrasound appointment. Until then, we have our regular appointment at Bronson in a couple weeks. We will probably go to U of M 1 more time after that prior to delivery, but otherwise we’ll just do some co-care with Bronson.
Here is a profile. I guess that is some brain development, so that looks cool. The smudge by his face is a foot I think.
This is the foot that kept getting in the way!
They tried to do a 3-D image but of course it looks all crazy. I only share because I love those toes! The other smudge by his face must be an arm or something.
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. 🙂
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.
