Will is 12 weeks old

So in love with this little guy. These weeks have flown by, I think partly because the weeks leading up to Christmas always go kind of fast. 

- He weighs over 14 lbs now. He feels really heavy to me. He is super strong, and rolls over every time we do tummy time now.

- He is so chatty!! He loves to make bubbles and babble with us.

- He is pretty much sleeping through the night. Most nights we get a long stretch of sleep from 11-5 or 6, which feels great to me. I feel pretty rested now, which is everything. He sleeps in his little bassinet beside my side of the bed. I'm hoping to get some kind of nap schedule happening during the day pretty soon. It's just lots of tiny catnaps right now.

- After many, many attempts, Will is finally taking a bottle. I'm hoping it's not a fluke. I am working 5 hours a week now, and have been feeding him in the parking lot, but the bottle thing will mean I don't have to do that. He is with my mom when I am working, which I think they are both loving.

- I still find it pretty hard to get much done during the day. I always try to treat myself (haha) to a shower, and I try to have supper made. After hanging out with Cohen, the rest is still hit or miss. The things that have been saving me lately: my Instant Pot, and online grocery shopping. I have been using the Instant Pot pretty much every day to either make soup for lunches or to cook veggies for supper. So easy. And the online grocery shopping is new in our town. I know lots of places have had it for years, and I am so happy we have it now too. I order a bunch of stuff online, then go pick it up, and they put it in my trunk for me. So I don't have to bundle the boys up to schlep them into the store. LOVE. It's $3, but worth at least $10 to me. I now wish all stores had this option.

On the weekend

Sometimes I feel like everyone else is super busy, while our little family is always laying low, relaxing. I love keeping our schedule pretty free so we can be a little spontaneous on the weekends. 

(This seems like maybe a little too much lego for a four-year-old? Is there such thing as too much lego? He loves it so much and plays with these guys all the time) 

(My boys. Cohen has started requesting I go get my phone so I can take a picture sometimes. This was one of those times. I always oblige.) 

(We went to the kids Christmas party at my mom's work. Cohen was in heaven with the cake, treats, crafts, and Santa showing up) 

(These two are twins. Will is getting really strong) 

(We end every night with a nice deep conversation between Will and I. He is super chatty around 10 pm every night) 

Our weekends have started with Saturday morning swimming lessons for Cohen for a while. He had his last one until after Christmas this past weekend. He went down the big slide all by himself, which was pretty awesome for a little guy who refused to go in the pool at all until recently. I got called in to work on Saturday, then I tested out my brand new Instant Pot when we had my parents over for supper. I am in love with the Instant Pot. Can't wait to do beans in it.

We took a super long family walk on Sunday morning, which I feel is the absolute best thing for a Sunday morning. We went to the Christmas party later at a nearby church. Cohen was super shocked when Santa showed up as we were singing Jingle Bells. He is all in on the magic of Christmas.

Will is 2 months old!!!

Our sweet Will is 2 months old. The time absolutely goes super fast the second time around. He weighs 12 lbs 7 ounces, so he's gained almost 5 pounds since birth. He is a really laid back, happy baby. I think I felt this way with Cohen too, but Will is honestly really easy. 

He loves taking baths, driving in the car, eating, smiling at all three of us. He is less into taking a bottle and getting swaddled. He has been tending to sleep in the bassinet beside our bed from 10 PM to 2 AM, then eat, then back into the bassinet for another few hours. By around 5 he is usually in bed with us, sleeping for maybe another hour or two. His naps during the day are all over the place, and I am loving these early months before we put him on a schedule.

I started out working 3 hours a week when he was 2.5 weeks old, and I am up to 9 hours a week at 9 weeks old. I think I'll stay at 9 hours a week for the next few months for sure, before I get into a more normal work routine. Jon or my mom bring him to work so I can feed him right now, which is working pretty good.

I really do love him more every day. I can't wait to learn more about his personality as he gets older. He is so chatty right now! We love it so much.

Our Dandy Walker diagnosis: Part 6 (The aftermath)

I am still writing about our whole Dandy Walker situation, mostly because I am hoping it will be therapeutic for me. Jon and I also hope that someone out there might be helped by our story a tiny bit, even if it's just to encourage everyone to get a second opinion when you get a devastating diagnosis.

Part 1
Part 2
Part 3
Part 4
Part 5

The day after our trip to the IWK, Jon and I returned to work, where I told our staff why we had randomly been gone a lot the past few weeks with no notice, and why they kept catching us crying in our office or our car. Minutes after we got to work, the specialist from Fredericton called me. She was shocked, upset, apologizing. I was still riding a huge high, and I was just like, don't even worry about it! It's all good! We are having a baby!!! I felt like I had just found out I was pregnant in a lot of ways. She was like, ok, well, I'd still like to see you soon because this is basically unprecedented. She said the IWK specialist had called her that morning to tell her the news, but she didn't have the chart notes so she didn't have the details. I was so happy, I agreed to everything she said.

Later that day, Jon flew to Toronto for a four-day course. I basically insisted he go, since I figured we were all good, since we were having a baby! I was still super-exhausted and also 5 months pregnant, so I opted for Cohen and I to stay with my parents while Jon was gone. The first night we were there, I couldn't sleep. I kept replaying the events in my head over and over. We almost aborted a perfectly healthy baby!!! How could we have done that? How did this happen? How did three doctors at our local hospital get it wrong? What if we had booked the termination in Moncton instead of at the IWK? Would they have been so thorough? I was a mess. I couldn't stop crying for two days. I called my aunt and talked to her for a long time. I called a dentist friend who is not in my normal circle of friends, just to vent.

I was mad. I started to feel so angry at the doctor who made the initial diagnosis. Her receptionist called me a day or two later to book an ultrasound. I was like, wait. The IWK specialist told us we are done with ultrasounds. The receptionist was like, well we are booking you for whatever time on whatever day. It was a day that I couldn't make it/had to work/couldn't get a babysitter. She was like, well we are fitting you in special at the doctor's request. And I lost it. I told her I deserved some special consideration because the doctor had made such a huge mistake that almost cost me my baby's life. I told her I wanted them to work around my schedule, and anyway, I was done with their ultrasounds. It was not pretty and I am not proud. I told her not to call me, that I would call her when we were ready to see the doctor again.

The next week I showed up at my family doctor's office. I was like, I don't have an appointment, and I don't even know what to do, but I think I need an appointment because I am keeping the baby that was supposed to be terminated. The receptionist told me to sit down, that the doctor would see me right away. I think she could see the crazy in my eyes. I told my doctor how mad I was feeling, and how I couldn't stop crying. He was awesome, and referred me to a therapist who specialized in maternal issues. She was fully booked but got me a few days later.

Talking to a therapist was the best. I had never been to one, and had no idea what to expect, but it was really beneficial for me for sure. I ended up saying the thing that I didn't even realize I felt: what if something terrible is going to happen now to balance out this amazing thing? I know that doesn't make sense, but I was so scared that I was someone destined to have a tragedy in my pregnancy, and even though I dodged one tragedy, another one was coming my way. After that one therapy session, I was able to curb my crying to only a few times daily.

(at a hotel during a work trip)

Meanwhile, the specialist's office was calling me daily and I was ignoring. I couldn't face them. Finally we decided we could handle it, so I answered. The doctor herself called this time, and told me we could come for an ultrasound anytime at all, and she would rearrange her schedule. And she would have another specialist with her because she didn't expect us to trust her now. She said she had some hard nights since our IWK appointment, and she just did not understand how her images could have been so wrong. She said that as far as she is concerned, the baby has Dandy Walker, because all the images she had seen all confirmed that. Hospitals don't share their ultrasound images here, so she never did see the images from the IWK. She wanted us to come in so we could talk and also because she still wanted us to be prepared for a possible Dandy Walker outcome. She said that I would likely need a c-section since the head would be enlarged, and would likely have to have the baby at 37 weeks or earlier due to the enlarged head.

(beach time)

Jon and I finally booked the appointment with her for Friday, June 16th. Jon's dad came over from PEI to watch Cohen so we could go to this appointment. When we got there, Jon told her he did not want an ultrasound. She really pushed it, because she really felt that we should be prepared for a baby with Dandy Walker. She was appropriately emotional and really kind. All three of us cried. She laid out our entire chart (it was big), and left us alone so we could read through it. I didn't look at a single thing. Jon read every page. The doctor returned, and encouraged us to go to Mount Sinai in Toronto for a second opinion. She said she could get us in quickly, and they would do their own diagnosis, and they could complete any treatment we decided on (aka termination). I told her we were done with considering termination, and anyway, we were past the 24 week mark. She said that actually we could terminate all the way up to the delivery for a medical reason. Shocking. I felt so incredibly different about the baby at 25 weeks compared to 22 weeks when we had decided to terminate. Now, I felt more pregnant. And also, I believed that if four doctors from IWK had said the baby's brain was normal, than the abnormality must be on the more mild end of the spectrum. We could handle a mild Dandy Walker case. We ended this appointment with us telling her we would call her if we decided we wanted to go to Toronto or if we wanted another ultrasound. She felt strongly that I should have another ultrasound, if only for my own health, because it would be risky to go into natural labour if the baby had Dandy Walker.

We spent the next month and a half in a kind of limbo. We honestly preferred to be in this limbo than know for sure that our baby had Dandy Walker. We figured that if the baby had it, we would deal with it when he was born. We were for sure done with considering terminating. We figured that if the baby had Dandy Walker, he wouldn't start to need all the things he would need right away when he was born. I started reading about mild Dandy Walker cases. Many kids need multiple surgeries to have shunts placed. Many had extremely poor eyesight and hearing so needed aids and special glasses. Many needed walkers. Special classes, tutors. Physiotherapy. Speech therapy. Medications. All that stuff was totally doable in our minds. There were still so many unknowns.

(summertime bath time best time)

On Friday, July 28th, we finally went back to the hospital for another ultrasound. I was sick about this appointment. Again, I was dreading the moment that the doctor starts scanning the brain. She started her scan, and told us the baby was growing properly. She got to the brain, and said it was really iffy. She could see something cystic, but it looked better this time. So she got the other, more experienced specialist in to have a look with her. The other specialist took some time to scan the cerebellum. She said she would consider this cerebellum completely normal. Jon was like, so how would this happen? Is your ultrasound machine different than the one at IWK? She said, no, they are the same, but ultrasounds are very user-sensitive. And any discrepancies or errors are completely due to the experience of the user. She said that in her opinion, we were having a totally normal pregnancy. The first specialist said she would like to keep following the pregnancy, doing an ultrasound every week or two to monitor the baby. We said no. We were done.

We finally felt like the nightmare was over. I was 32 weeks pregnant, and I once again felt like I had just found out I was pregnant. That afternoon I met with my beloved ex-coworkers for my first of three (three!!) baby showers. I was ready to celebrate this baby. I was also sooo done with appointments. I still went to the normal OBGYN a few more times, but I refused a few routine appointments. I felt so distrustful of doctors and the whole system. I still do in a lot of ways.

Note: The few pictures in this post are from that month and a half we spent in limbo. We didn't know if we would be having a healthy baby or not, or even what healthy means. I felt happy to be pregnant, but I also didn't want to shout it from the rooftops. There are no deliberate bump photos from this time, just pictures that happened to show me pregnant. I feel like I was robbed of an entire trimester of my pregnancy. It sounds crazy to say that since I ended up with a healthy happy baby. But I swear, I lost years off my life from this whole thing. It was horrible, stressful, the worst. I still think about it every day, and Jon and I acknowledge it to each other all the time when we look at our precious, precious Will. My sister and my parents are still a little shook up. And we are so grateful for our sweet precious little guy. 

Our Dandy Walker diagnosis: Part 5 (The termination)

So the appointment with IWK was made for 1 pm on Tuesday May 30th. This is the appointment where they inject the baby with something to stop their heart instantly. Then the next day you go back to your community hospital to deliver the stillborn. We dropped Cohen off at my parent's in the morning and made the drive to IWK. We had lots of podcasts downloaded to try to keep ourselves distracted. We were both exhausted from not sleeping lately. We cried and cried listening to podcasts on the 4 hour drive.

We got to the waiting room maybe 30 minutes early, where we took a number and waited with a few other ladies who were super pregnant. It was clear we were the only ones there for a termination. We were just crying and looking at pictures of Cohen. After a while, we got called in to an ultrasound room where a 3rd year ultrasound student told us she was going to do the full scan. She was like, do you know why you are here? We were like, yes. She was like, ok why? And we told her we were here because our baby had Dandy Walker and we were terminating. She asked me if I took any drugs during the pregnancy, when my last period was, etc. I was ready to lose it. It felt like she hadn't even peeked at our chart. Asking a mom who is about to terminate if she ever did drugs in the pregnancy seems completely insane and insensitive to me. Right before she started the ultrasound Jon asked her if it was necessary for us to have the full ultrasound since we were terminating. She was like, I can ask. So we waited for a bit, then an administrator type of person came in and told is there had been a mistake and we were in the wrong area. Jon and I were feeling really raw and upset, so the hospital mistaking us for people who weren't about to do the worst thing ever was not really cool with is.

The admin person took us to a private waiting room with a big couch and a few chairs. It felt so much more appropriate for us to be on our own, away from the happy pregnant couples. We waited there for an hour, and then a doctor came in to talk to us. She said that she had just been pulled in on this case, but she had looked through our file. She said they would be confirming the other fetal maternal specialist's diagnosis, then she explained a little more about the procedure, and how they were going to try to put the medicine in at the insertion of the placenta so that the baby would never feel a poke. She said it was a more difficult technique, but nicer for the baby. It would take longer because they would have to wait for the baby to move in the right way for them to be able to access the right insertion point. She told us to expect lots of emotions. She asked us how we were feeling about this all today. I told her that I kept imagining that the doctors here would say that actually the baby is fine and we didn't have to do this. She said of course that would not happen, but it is so normal to feel like that.

Then the other doctor, who was super experienced and much older, came in and reiterated what she said, and then they took us to another procedure room. The older doctor told us that the medicine they use is a toxin, and though the amount is not enough to stop my heart, it is possible that they will accidentally inject it into the vein instead of the artery, and I will get the toxin in my system. If that happened I would have an IV, so they could quickly fix it, but I should warn them if I get a bad taste in my mouth, because that would be a sign that I received the toxin. The nurse in this new larger, darker room introduced herself and told us she would be with us the whole time and we could ask her anything. She was so kind and warm and I felt a tiny bit better and more taken care of.

The first, younger doctor started by doing a full scan. She was sure to ask us if we wanted the screens pointed away from us so we wouldn't have to look at our sweet baby while she did the ultrasound. While she was doing the ultrasound, she tried to make small talk. She was an OBGYN but was about to be completing her training for fetal maternal medicine. She talked about how the older more experienced doctor was really good, and she talked about how it's nice that Jon and I just bought a practice together. She was really nice. I was dreading the moment when she got to the brain, because I knew she would spend a lot of time looking at the problem, and it just made my heart break to think about our baby's cyst where the cerebellum should be. Just as I suspected, she grew quiet and started really taking a lot of pictures when she got to the brain. She was doing it for a long time, and the baby was moving around like crazy. Eventually she started scanning the area where they would do the injection.

After what felt like a long time, but was probably only 20 minutes of her scanning, the other doctor came in. She kind of quietly talked to him by the computer on the other side of the room for a few minutes, then he came over to start his own ultrasound. He started telling the younger doctor where the ideal insertion for he medicine would be, and was explaining that the baby was not in a great position right then, so they would have to wait for a bit. He said that something was "eyeballing normal." When he said that, my heart jumped. I looked at him and said, "eyeballing normal?" He was like, oh, no, I'm just showing certain things to my colleague. He said that it is their procedure to get a confirmation from every fetal maternal specialist in the hospital when they do a medical termination. He said there happened to be a third one working that day, so they had to go get confirmation from them too by showing the other doctor these scans. He said I would get an IV while they were gone.

The nurse came over and tried over and over to get the IV. I was so upset. I felt like they were never ever going to get the IV, and we would have to delay this nightmare by one more day just because of the IV. She got another nurse to come try to get the IV, and she couldn't get it either. They said it was because I hadn't been sleeping or eating right, and I was so anxious that my veins were almost nonexistent. They made me squeeze as hard as I could while they wrapped my arm in a warm towel. A third nurse came who was experienced doing IVs in babies, and she was able to finally get it after a few tries. It was super painful, and I was crying the whole time. The nurses were super apologetic about the IV thing, and covered me in a warm blanket. The nurses then told us they would leave us alone for a bit so we could have a chance to say goodbye to the baby on our own. When they left I just kept saying over and over to Jon that I didn't want to do this. Jon was crying and kissing my belly and telling the baby over and over how much he loved her. After a long time, we heard the doctors outside our door talking. They would open the door for a second, then close it again, as if they were trying to end a conversation before they came in.

Finally, the younger doctor came in. She sat me up a little and said she needed to talk to us. She said that they had reviewed the images with the third specialist and also the radiologist, and the baby's brain was fine. We were like, WHAT??? She said again, the baby's brain is fine. The older doctor came in. He was like, yes, for whatever reason, our MRI was not reviewed by their radiologist until right then. He said all four doctors all agreed that the brain looked perfectly normal. I was like, ok, so maybe it's a Blake's pouch cyst instead of Dandy Walker? He said, no, this baby's brain is completely normal. He said that he thought the radiologist who looked at our MRI in Fredericton was probably not used to looking at fetal brains. He said fetal brains do look significantly different than even baby and children's brains. He said that he can see how the other specialist could have forced an image of a cyst, because I am so thin, that you can actually create a shadow when doing the ultrasound on me.

(we went for supper to celebrate right after) 

Jon and I were crying and hugging and basically freaking out. It was the best moment of our lives. Period. I cry now just thinking about it. As I write this, our baby is sitting right beside me smiling at me. I can't even believe how lucky we got. The doctor was like, so I guess we are not performing a termination today, so let's take out that IV. But Jon and I were crying and hugging so much that the nurse couldn't even get at my IV. So all the nurses and doctors all left the room and said they would be back in a few minutes. Jon and I just kept looking at each other and crying and feeling my stomach. The baby was so active.

When the doctors came back in, we needed them to basically repeat the whole thing because we were in shock. The younger doctor said that in all her years as an OBGYN, she had never reversed a diagnosis. The nurses said that all the staff were crying, even the receptionist, because everyone was so happy for us. The older doctor said that we could go home and enjoy the rest of the pregnancy, and we would not have to have any more ultrasounds. The doctors left and one of the nurses said she thought this might be a good time to take a picture of this baby to remember this moment. She quickly took the picture above. Jon and I looked at each other and decided we wanted to know the sex of the baby. We had been envisioning me giving birth to a stillborn little girl. The nurse quickly showed us that the baby was in fact a boy. We were so thrilled. After the nurse had let us go and we were walking down the hallway, Jon was like, I have to see that doctor one more time. So we went back and Jon thanked the doctor through tears for saving our baby.

We were freaking out the whole time we took the elevator down to the lobby of the hospital. Once we were outside we tried to call Cohen, but there was no answer from my mom, so I called my sister. I told her we were having a boy. She was so confused. She made me tell her the whole story a few times before she could accept the craziness of it. I called my mom again and asked to talk to Cohen. I told him he was going to have a baby brother. Mom thought I might be sedated, and was honestly worried that I was confused about what had just happened. Those were the best phone calls I have ever made. Jon called his family, and I had my sister call the one friend who knew what was happening. My sister googled "lucky" and found that Felix means lucky, so we started calling the baby Felix right away. Jon and I were exhausted and thrilled and decided to stay the night in Halifax to get the first good sleep we had had in a few weeks.

I wish I could say that was the end of our story...

Our Dandy Walker diagnosis: Part 4 (The decision)

We met with the specialist again on Friday May 26th. We went in to get another ultrasound, but before she started, she asked us what we were thinking. We told her that we had decided on a termination. She had gotten the MRI back and it confirmed the diagnosis of Dandy Walker. She said we didn't have to do the ultrasound if we had made up our mind as it is just so hard to look at this sweet baby when we know we are terminating. She told us a little about the termination, and that it is done in Moncton or IWK. She told us she would try to get it booked as soon as possible. By then we really just wanted it done because it had been so hard having the baby move around all the time in my belly when I know that I wasn't going to be pregnant for long.

She explained that a specialist arrests the heart of the baby with a long needle similar to the amnio, then a day or two later I go into labour. I would go to labour and delivery just like any other woman in labour, though I would be eligible for more pain meds because there is no concern for the fetus's health. She recommended we book an autopsy so that we could get any information about the baby that might effect our decision to have future pregnancies. The law in New Brunswick says that the stillborn baby has to be transferred to a funeral home, where we can opt for a funeral or not, and we can opt for cremation or not. I hated all of it. I hated that we would have to show up at labour and delivery just like I had imagined, except not at all. I hated that I would have to give birth in the room beside another woman who was giving birth to a baby that was alive. I hated that they would probably ask me if I wanted to see the sweet baby after she was born, and I knew I wouldn't be able to look. I hated that afterwards, I would have to heal from the delivery with no baby. I hated that I would have to go to the funeral home to make the arrangements for our sweet angel baby. I wished that there was a way that I could just go to sleep and wake up and all that be done.

After that appointment she called us to tell us that IWK would be able to do it on the following Tuesday, and they would call on Monday to tell us what time. We proceeded to have the worst weekend ever. Its just such a terrible feeling to know that you aren't going to be pregnant anymore after 5 months of pregnancy. I knew that I would never want to get pregnant again and risk going through this again. We tried to convince ourselves that we would be ok as a family of three. We cried about all the things we felt like we were losing. We thought we would have a little baby at Christmas this year. We pictured future family vacations with the four of us. We had all this baby stuff accumulating in our closets from friends. We were having a third bedroom put in for the baby. I had been shopping at the little boutique downtown for the baby's high chair and change table.

(we tried to keep things normal for Cohen)

(my sister came down to be with Cohen a lot and sent him stuff in the mail)

We felt really solid about our decision in a lot of ways. Jon and I miraculously were on the same page about it the whole time. I can't imagine what would have happened to our marriage had we felt differently about medical terminations. It's not something I had ever even heard of, so there's no way I had an opinion about it until it was something I had to decide. I kept calling/emailing the genetic counsellor to verify stats and talk about different papers I was reading. The thing about Dandy Walker is that ultrasounds are relied upon for diagnosis, but the technology for ultrasounds was really, really poor even 15 years ago. So all studies before 2000 are useless. All the studies are retrospective, of course, and it can take years for a hospital to accumulate enough cases to actually do a study. Also, many fetuses diagnosed with Dandy Walker are terminated, so we don't get as much information about those cases. There is actually only one or two studies that exist that the genetic counsellor was even comfortable talking about due to the low quality of the other studies. Newer research is showing that there is potentially a connection between people with untreatable depression and/or debilitating migraines and Dandy Walker. But so much more research is needed. When we had made our termination decision, Jon contacted a group of doctors in Seattle who are trying to get more research about Dandy Walker done. We were going to send them all our scans and test results to add to the data they have. We wanted to try to find something positive out of all of this.

I kept thinking about how Dandy Walker is on a spectrum, and though they can't be sure of this, I felt like the amount of the vermis of the cerebellum that is missing must be connected to the degree of deficiency in function. And I had seen the scan of my baby's brain, and seen the huge black spot where the healthy vermis should be. I felt sure that our baby was going to have really huge developmental issues due to the lack of vermis. It was hard because through all this, the baby moved around like crazy in my belly. We learn that fetal movement is healthy, but in this case, the doctors told me that it meant nothing positive. Dandy Walker babies can move around a lot until suddenly they don't.

The weekend before the scheduled termination, I decided to tell one of my closest friends here, who has four kids. Until then, I had really only talked to my sister and one lady I barely knew about it, and I was feeling like I needed to talk to a friend. I didn't need or want any advice or opinions. I just wanted someone to listen. I was so scared to tell anyone, but she really surprised me by listening and crying and just being there for me.

Our Dandy Walker diagnosis: Part 3 (The genetic counselling and MRI)

On Tuesday May 16th I went to a health centre in Fredericton to have a teleconference call with the genetics team at IWK. It had been a week since the 20 week ultrasound appointment. I met with a genetic counselor and a geneticist. By then I still hadn't done much of my own research. They were surprised I was on my own, but again, Jon and I were still trying to be as normal as possible, and we also had this clinic that we had just bought. And I just still thought things were all going to be ok. Looking back, I think I was kind of in shock, and not really facing things. I was not sleeping, and Jon and I were kind of just in autopilot.

The genetics team explained to me more about Dandy Walker, how it is usually one of three scenarios: related to another syndrome, related to a problem with the chromosomes, or isolated, with no other abnormalities. I was like, ok, so the isolated one is the best, right? They were like, no, we really can't say that. All three options can be equally risky and have equal developmental issues. I told them that it felt really terrible because we were in such a grey area, not knowing if we might have a baby who will not survive the first year, or a child who would live a longer life, but with severe issues. They were like, yes, that is the problem, and we really don't know enough to tell you more. Dandy Walker syndrome, like so many things, is on a spectrum, and they can't predict the outcome from ultrasounds and testing during the pregnancy. They said the odds of having a baby with Dandy Walker are 1 in 35 000, which seemed so crazy to me. I couldn't understand why this happened to me.

The informed consent for the testing that they do for genetic counselling is pretty intense too. They were examining my chromosomes and Jon's as extensively as they could, and it was possible they would find genes that are linked to certain cancers. So we had to give the OK that they could tell us if they found that one or both of us would likely develop cancer later in life. Jon and I had just taken out a huge seven digit loan from the bank, so we had undergone extensive medical testing to be approved for the required insurance. But this baby was of course so much more important than all that. Luckily, the testing came back clear. It just means that Jon and I don't have any of the genes that they already know are linked to cancers.

The genetic counsellor explained that the assays they do are like looking at the chromosomes as if they are books on a bookshelf. They can see if any books are missing, and they can sometimes see if the books are not in the right place or upside down. But they can't open the books and see what is inside them. So even if the chromosomes of the baby look like they are all present and in the right order, they might be really messed up when you open them up and look closer.

(this photo was taken an hour after I finished the MRI. we considered cancelling this visit to a local elementary school, but I refused to cancel anything)

We went through my family history and Jon's family history to make sure Dandy Walker or a related syndrome didn't run in our family. They also wanted to make sure Jon and I couldn't possibly be related (we couldn't). Our history looked good. I told them we were considering termination depending on the results of the amnio and the MRI. They told me that many moms opt for terminating the pregnancy if there are going to be brain deficiencies/abnormalities. The genetic counselor told me that Jon and I should start thinking about what we would do if we remain in the grey area. She said the amnio and MRI might not tell us anything more than what we know now. During the meeting with them, I got a call from the specialist's office that the first part of the amnio came back, and the baby was negative for Down's syndrome and trisomy 18, which was no surprise to us since the specialist had told us that it looked like the baby didn't have those things, and the baby had tested negative for the serum tests that we had done earlier and also the nuchal test that was done at the 12-week ultrasound.

I asked if there were any parents of Dandy Walker kids who I could talk to to learn about what their lives have been like. I wanted a support group or something. They said that it is so rare, that even at a hospital like IWK, they don't see it much, and there is no way for me to talk to anyone who has been through this.

The genetic counsellor was clearly pregnant during our Skype appointment. She was rubbing her belly lovingly the entire time we talked. I felt so sad. I wanted to be the woman rubbing my belly lovingly. I wanted to be happily pregnant. She seemed so insensitive to me. I was so jealous of every happily pregnant woman. I would look at families with more than one kid and think about how lucky they were. I wondered if those moms realized how lucky they were. I was in a bad headspace. 

After that appointment, Jon and I got serious about considering termination. The doctor had told us that it is better to do it before 24 weeks, and I was almost 22 weeks at this time. We cried together every night, and talked at length about what we want our lives to look like in the future. We mostly talked about Cohen, and what we want for him. And we talked about what we wanted for the baby. Jon felt strongly that we became parents to the baby the moment we found out we were pregnant, and we needed to think about what kind of life we wanted for this baby who we already loved so much and had so many plans for. 

On May 19th, Friday, I had the fetal MRI. I was in the tube for well over an hour while they tried to get the images they needed while baby was flipping around like crazy. The MRI is this: they put ear plugs super deep into your ears, you lay on this board that will slide into the tube. They put a heavy board on your belly, and then little pillows around your arms. Then they slide you in and you hear the loudest sounds ever and they vibrate your body like crazy. It's so weird. You have to hold your breath over and over again. It's super uncomfortable. The ultrasound technician asked me if the baby was a boy or a girl. I said I didn't know. I hated getting asked that question. I felt so sad about this baby, and I didn't want anyone to ask me any questions about her (we really felt like the baby was a girl).

I ended up breaking down at work with a woman I had only known a month. I told her what was going on between sobs. Shockingly, she was like, I get it because I have been there. I was like, did you have a miscarriage? Because at that point in my life, I felt that a miscarriage was completely different. With a miscarriage, you don't spend days and weeks agonizing over the biggest decision of your life. The decision is made for you. But no, this woman had been through almost the exact same thing as we were facing right now. She had opted to terminate a pregnancy at 23 weeks due to medical issues. It had been years ago, and she now had healthy happy kids. I wanted to know: did she still think about her lose every single day? Did she have guilt? Did she worry about judgement? I still feel so lucky that the universe put her in my path that day. After that I decided to be completely honest about this experience because women go through horrible things and we need to support each other. I have since talked to so many friends and acquaintances about postpartum depression, miscarriages, infertility, medical issues, etc. 

The following week the specialist called me at work, and I broke down with her, telling her we were thinking of terminating, and that I felt so weak and horrible about it. I felt like another stronger more devout woman would keep the pregnancy, even if the baby didn't survive, even if the baby suffered from health issues. She was so good and supportive and just really compassionate. She said I needed to really consider Cohen, and the live we wanted for him. She reminded me that it is best to terminate before 24 weeks, as this is the age when the fetus would be viable outside the womb. We agreed that I should cancel my appt with the OBGYN that was booked for the Thursday because I really didn't think I could handle telling another doctor this whole story. She asked me if I wanted to get a second opinion. I just really didn't want to deal with it all over again. I felt so horrible about everything and I felt like another person telling me this all again was not going to help me. I felt broken. 

Our Dandy Walker diagnosis: Part 2 (The amnio)

The next morning (Wednesday, May 11th) mom and I went to the amnio. I got Jon to cover my clinic, and Dad watched Cohen. I shed a few tears on the drive in with mom. We talked about how Jon and I were financially and emotionally able to raise a baby with special needs, and we talked about how that would probably not matter because the baby would probably just have a Blake's pouch cyst. I was so not scared about getting the amnio. I felt hyper focused on just getting the information about our baby. Jon and I had decided the day before that we would opt in for all testing because we wanted to be as informed as we could about our baby.

(this was a bump photo the week before the diagnosis)

We got there first thing in the morning before her regular patients were scheduled. The specialist did another ultrasound first. She confirmed her diagnosis of Dandy Walker from the scans she was getting of the brain. She had showed the scans to her colleague, and they both agreed that it was Dandy Walker. She even showed me the huge area that was just black on the scan that was not supposed to be there. It looked really dire. I could see the huge black hole on the scan with my own two eyes. I learned about the cerebellum, and how it is shaped like a barbell, and the centre part that is like a bridge is called the vermis, and it is super important for a bunch of involuntary and voluntary functions. Our baby had a vermis, but it was tiny, way thinner than it should be. There was a cyst pushing on it, making it small. She talked about how little we know about Dandy Walker, and how she had done some research the night before.

The Dandy Walker diagnosis meant that the baby might not survive a year. Some Dandy Walker babies die in utero. If the baby did survive, there would be lots of developmental issues, walking issues, breathing issues, cognitive issues, etc. The cerebellum is in the brainstem, and super important for so many functions of the brain. She said that termination was an option in this case, and something we should strongly consider. I was shocked. I didn't even realize that you could terminate pregnancies so far along (I was 20 weeks). She said she prefers to complete terminations before 24 weeks, which is the age of a fetus that can usually survive after birth.

She did the amnio, which involves a huge needle going in to my stomach and sucking out some amniotic fluid. It took her a few tries to get the angle she wanted since the last thing you want is to touch the baby with the needle. The amnio was painful and made me feel really dizzy, which she said is normal. I wanted to squeeze something, but the nurse was scrubbed in, so she said I could squeeze her stomach. So I squeezed her love handle while they put the needle in, and my mom backed into the little office beside the exam room. My mom had a really hard time with this appointment. She had been with me for the 12 week ultrasound, and was just really excited and involved in this pregnancy from the start. They took blood and told me Jon needed to give blood that very day so they could look at our chromosomes to see if the Dandy Walker was genetic in this instance. The doctors and nurses could not have been more kind and warm. I felt so taken care of, and like I was in such good hands.

I called Jon when we got to the car, and told him that he needed to go to the blood clinic on his lunch break. He was like, well I'm super busy, so maybe I'll go after work. So I told him the diagnosis, and that it was super important he go soon. Jon had to close our clinic because he couldn't stop crying. It was terrible. I can't even explain how it feels to know that your baby in your belly is either not going to make it or have huge challenges to just make it through childhood. After that we started researching Dandy Walker. There really is not a lot of information out there. We would find a lot of success stories that would end with them doing an MRI and realizing the baby actually only had a Blake's pouch cyst, which our baby definitely did not have.

We tried to stay as busy as possible in that first week that we were basically just waiting for test results. All I could think about was that the amnio results would show that either the baby was going to be healthy or not. Jon and I delayed any decision-making because we just thought the amnio would be the answer. We were told that the amnio would take three days to tell us about missing chromosomes, and another week or so before we would know all the details about the chromosomes and potential inherited mutations.

After the amnio and bloodwork was done, the doctor said I couldn't go back to work that day, but mom and I had facials booked for her birthday. The doctor said we could go to those, and it might be good to relax after all this. Those facials were probably the least relaxing thing ever. I spent the entire time just thinking about the diagnosis over and over, and trying to figure out how this happened. I wondered if a normal ultrasound technician would have picked the brain abnormality up. I wondered how this baby in my belly was doing right now. I wondered if I was going to have a miscarriage. That weekend we went to Moncton to try to keep our mind off things. There was nothing we could do until we got our test results back.

I know that a lot of people feel strongly about medical termination, and a lot of people think it is wrong. I became so scared of judgement, even before we had made our decision. Jon and I have a few friends and family who are very religious, and believe that terminating a pregnancy is wrong. I told Jon that I might want to tell people I miscarried if we decided on a termination. But then we talked and talked about it, and Jon said that our real friends would understand. If we lost friends over this, we would be fine. And if I was honest, maybe it would help another couple who were going through something similar. I truly believe that you cannot know what you would do in this situation unless you yourself are in the exact same situation.

Even though we were waiting for the test results, Jon and I slowly started considering the termination if the test results pointed to a short lifespan for our baby. We felt like we were this baby's parents, even though the baby was a 20.5 week fetus. And we wanted to do what was right for this baby. And we wanted to do what was right for Cohen and our family. These were the worst weeks of our lives for sure. We only told our close family what was happening, and I stopped telling people I was pregnant. I started wearing baggy clothes and I started to try to ignore the movements in my belly. I cried all the time, and so did Jon. At night we would sit on our couch and cry. It was terrible. 

Our Dandy Walker diagnosis: Part 1 (The 20-week ultrasound)

When people started asking Jon and I if we were going to have another baby when Cohen was around two years old, we always said we probably weren't. I know it sounds weird, but I always had a feeling I would have problems in a second pregnancy. Jon and I had always talked about adopting, and we were just starting to look into the adoption process more seriously when I found out I was pregnant. 

(a coworker brought the eggs from her chickens the week of our diagnosis, which made me sob so hard in the arms of this woman who I hardly knew)

(this picture was taken after the diagnosis. I have very few bump pictures from this time)

On Tuesday May 09, 2017, we had our 20-week ultrasound with the specialist. This is usually the fun appointment in a pregnancy, where you get to see the feet and lips, and this time we scheduled off so Jon could come with me. I had seen her at the 12 week ultrasound also since I had a placental abruption during my delivery with Cohen. So she was checking all the anatomy and everything was looking cute, and we were making small talk. Then she came to the brain. She was looking at it for a really long time, which didn't alarm me at all really, but I did notice she was getting really quiet. So after a while she said she was just looking at a few things and would discuss after she was all done. I started to feel a little scared. 

After she was done she sat me up and told us that the baby had some kind of a cyst on the cerebellum. She said that it could be a Blake's pouch cyst, which is no big deal, or it could be Dandy Walker, which is more serious. She said she would have to look at the images with another FMM, and that she would call us soon to think about an amnio. She wrote it all down on a clipboard, but I forgot to take it, and we were scared, but felt really positive. We felt like it was probably a Blake's pouch cyst. We left that appointment super scared, but positive. We had never heard of Dandy Walker, but the specialist didn't really get into what it was, except that it was serious. 

She called me at work later that day to book me for an amnio the very next morning. She was surprised I was back at work, which seemed weird to me. I think that in her mind she had just given us a terrible diagnosis, but to us, the cyst was probably the "no big deal" thing, the Blake's pouch cyst.The fact that she was making things happen so fast was kind of scary to me, but we were still feeling positive. Jon and I talked a little that night about how we could handle whatever happens, and that if we ended up with a special needs child, we would hire permanent full-time help, and we would just make it work. But we were sure it was nothing much anyway. I didn't look up or google a single thing that night. The next morning, Mom took me to my amnio appt...

The second half of Cohen's birth story

I wasn't going to ever really share about what happened after Cohen was born, because in the end everything was ok, and I didn't feel like I needed to dwell on it. But it is the first part of the long, sad story I need to tell about what happened this summer.

In dental school, we all have to spend a week or two shadowing the oral surgeons at the hospital. These are NOT the surgeons who take out wisdom teeth all day. These surgeons are the ones removing cancerous tumours, performing jaw surgery for ortho cases, etc. Your experience varies widely depending on what the schedule is like, which surgeons are around, which residents are around, and what emergencies and cases are coming in. For my rotation, I was really lucky and got to see so much. One of the things I watched was a huge implant case. The patient was a larger middle aged man who was getting the second half of his implants placed. I think they were placing eight this day, and they had placed another eight a few months before. It was a big case. The man was under IV sedation, and I was standing by his waist on the opposite side of the surgeon, trying to see as much as I could. All of a sudden a few minutes into the surgery, the patient started to get really red and swollen, and his vitals started going crazy. I remember watching the blood pressure go down, down, down, until the lower number was under 30. The surgeon started barking orders, yelling to get another blood pressure cuff, to get another surgeon. The room was suddenly full of staff, and I truly thought this patient was going to die. I had never seen anything like this before. I backed out of the room so that the staff could get to the patient better, but really because I didn't want to watch someone die. He didn't die. It was an allergic reaction to the sedative, and he sat in the recovery for hours with ice covering his body.

Years later, I had just gone through labour and delivered a healthy 6 lb baby boy. The doctor was waiting for the placenta to come out, and it wouldn't come. After 45 minutes, the doctor said she had to go and get it. So she put her hands in and pulled it out, but I started bleeding like crazy when it came out. All of a sudden the room was filled with staff, and the doctor was barking orders. One nurse was trying to get an IV in, but she couldn't get it. Other nurses came in the try to help her. The doctor had her hands inside trying to stop the bleed. It was so painful, and I felt so grey. I looked at Jon holding Cohen, and we looked deep into each other's eyes. Later, we told each other that we both thought this might be it for me. I felt at peace because I knew Jon and Cohen would be fine together. Things were so blurry, but eventually they got an IV in. My wrist was covered in bruises afterwards from their efforts. The doctor was able to stop the bleed with the help of IV drugs. It was so much more painful than the actual childbirth. I lost 2 litres of blood. Later the resident came to talk to me. He told me I had a placental abruption, where the placenta adheres to the wall and then has to tear to get off, resulting in a bleed.

So when I got pregnant again, my family doctor immediately referred me to a fetal maternal medicine specialist. This is the person above the OBGYN who deals with more complicated cases. I was booked with her at 12 weeks so she could determine if the placental abruption was going to be a problem this time. Mom came with me since we had just bought the practice so Jon needed to be at the clinic. After going over the chart from Newfoundland, and doing a full ultrasound, she found that there would be no issues. She decided to do my 20 week ultrasound herself, just to be thorough, but she told us that I would probably have a normal pregnancy, and carry the baby to full term. She printed off a bunch of pictures for me to show Jon. I couldn't believe how much the fetus looked like a real baby at 12 weeks. I was expecting a little peanut, but instead the pictures show I beautiful baby. the specialist thought that maybe I would have a retained placenta because the last doctor had to be so rough last time to get the bleeding to stop. She said that maybe they would have to remove my placenta surgically this time, but it would be totally fine, no worries. She also did the nuchal test that helps to determine if the fetus will have Down's syndrome. The baby looked great, and she was so nice, and we were so happy....

Will is 6 weeks old!

We are loving this stage. He is just starting to smile a bit, which is just the best thing in the world. That gummy big smile is heart-melting. Everyone says it because it's true: it's way easier with your second baby. Jon and I are way more laid back about things. I never feel stressed when we are out and Will gets fussy. And the sleeping (or lack of sleeping) is more manageable too, because I know that he will sleep better eventually. Speaking of sleep, he is actually sleeping pretty well. He did a four hour stretch last night. I feel sort of rested.

Will looks so much more like Jon than Cohen ever did. I love it! He is growing out of his newborn sleepers really fast, and on to the three month sleepers. He has some pretty wicked cradle cap and baby acne, and a nice head of hair. The main thing people always comment on when we are out and about is his dark head of hair. It's the cutest.

Love you so much baby Will.

A weekend in Moncton in May

Jon had a course in Moncton in May, so we decided to all go and stay at the hotel right by my sister's house for a few nights. Jon was at his course all day both days, so my sister and I tried to keep the kids as busy as possible with a visit to the zoo, some time in the hotel pool, and playing at her house. It's weird to look at these photos, because behind the scenes, Jon and I and my family were going through one of the toughest things we have ever gone through (I am working on a post about it that I will finish and share soon). It really shows that photos can be deceiving. We had just found out some devastating news just two days before these photos were taken. Jon and I decided that we wanted to try to keep as busy as possible to keep our minds off the worst, so visiting Moncton was an obvious choice. My sister's kids are super high energy, and I really am grateful to them for keeping me preoccupied for a lot of this past summer while Jon and I were dealing with everything. My niece especially just really helped me from letting my mind wander to what was happening all the time. Jon and I still cried every night when we were alone, but for the most part, during the days, we tried to be normal. 

(roadtripping)

(this was supper at the hotel. no room service...)

(these two)

(ready for the zoo)

(looking at otters maybe)

(chilly snacks at my sister's house)

(Swimming. Cohen spent the whole time on the stairs leading into the pool. Graycie was into me pulling her all around the deeper area)

I love these kids so much. I feel such a connection to my niece and nephew, and LOVE being their auntie. In a lot of ways these three kids helped our family through this year by just being happy and high energy and busy. On this trip, as soon as I saw my sister, I sat her down and managed to tell her what was going on with us. Like I said, we had just received the bad news a few days before. She was like, ok, so why don't I take Cohen and you and Jon can be on your own and get some rest and talk. I was like, no, what we need is to not be alone, and to be busy and to keep our minds off this. And she basically made it her mission to make sure that happened for the whole summer. She came down pretty much every week, sometimes twice a week, and hung out with us all the time. Sometimes I would fall asleep in the middle of the living room while playing with the kids, and she would quietly bring all the kids outside so I could get an hour of sleep. She listened to me without crying (much), which was really what I needed. She never judged, and never gave me advice, and never told me it was going to be ok. She just listened, and asked questions, and that's it. For me, there is nothing worst than someone saying it's all going to be ok, when it's not. For a long time. It's such a relief when someone says, that sucks, that is going to be terrible, I can't believe you have to go through that. I'm here for you.

I really feel like I need to write about our experience in a lot of detail, because Jon and I still think about it and run the whole thing through our heads all the time, and maybe writing it all down will help me. And maybe it will help someone else in the same situation. More to come...

Our first road trip with baby Will

We took our first road trip with 5-week-old Will this weekend to PEI. Jon's parents live there, and sometimes it is a little easier for us to come to them. They were just a little excited to meet the baby. The drive is a little less than four hours, but of course it took us way longer because we had to stop a couple times for the baby to eat. We are lucky that my sister lives just off the highway in Moncton, so it's always an ideal place to stop and run around and have lunch. We opted to stay in an AirBNB this time, which was such a good move. We were able to have Jon's family over for supper both nights, and come back to relax throughout the day. 

 (our AirBNB was really new and clean with the best location on Grafton street in downtown Charlottetown)

(we loved walking along the boardwalk in downtown Charlottetown too) 

(I have always loved checking out the Charlottetown market, ever since Jon and I started dating ten years ago. It's pretty much the same still. Cohen got his grandmother flowers) 

(Jon and I had some oysters at 10 AM. So good) 

(Cohen loved playing at the condo. He also LOVED the elevator) 

(We spent some time on the balcony since the weather was awesome) 

(this guy loves being in the Ergo) 

Jon's parents were completely in love with baby Will, and it was so cool seeing them loving on him. And PEI is so beautiful in the fall. We had such a great time. We brought Will's moses basket for him to sleep in, and he slept beside me like he does at home. None of us slept great at night, but Will basically slept for the entire drive both ways, which was so awesome. Jon and I listened to podcasts while Cohen watched shows on our iPad. We were already doing road trips with Cohen at around this age too. I forgot how portable and easy newborns can be, as long as you don't mind getting no sleep. Having a newborn really made Jon and I realize how easy Cohen is now when it comes to travelling. He goes to bed super easily wherever we are, and can be bribed super easily. And he loves longer drives because we let him use the iPad which he is not allowed to use at home. I love our little family of four.