Monday, 4 December 2017

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.

Tuesday, 21 November 2017

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.

Monday, 20 November 2017

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. 

Saturday, 18 November 2017

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...

Thursday, 16 November 2017

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.

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