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.