February 7-14 is Congenital Heart Defect Awareness Week. To help raise awareness, spread knowledge and share the effects of this disease, Jayme of The Paper Deer Photography Blog, Christie of Lemon Squeezy Home and Kierra of The Irvine Home are each sharing one story of a child with CHD every day to showcase the trials, triumphs, journey and heartache of this devastating disease. We invite you to read and share this project to further our voices. Thank you. #Facesof CHD
Hello! My name is Jayme and this is my Hudson’s story.
After having the typical pregnancy and birthing experience (doctors and hospitals) with our first born, Jensen, we decided to do things a bit different and more on my terms so we hired a mid wife and doula. We wanted a water birth and had everything as planned out as we could…I was eating healthy, somewhat exercising (haha) and had such an amazing feeling of “yes, this is how pregnancy should be”. I loved my midwife, so kind and attentive, it felt good to have control over my own body.
We planned to only have one ultrasound down at 20 weeks just to make sure everything was all good and on track with the wee one. The appointment started out like every other ultrasound I had been to, full of excitement to hear our babe’s heartbeat, regular screening until the end….the lady said I would need to book a follow up appointment because she couldn’t see the left side of the heart due to the position of the baby – looking back. I think she was just trying to not worry us. We brushed it off like it was no big deal and then the doctor came in and told us that I had a two vessel umbilical cord and the baby had an echogenic bowel…which are both markers for Down’s Syndrome….it felt like the floor fell out from under me. My legs went numb and my heart sank. He spoke very fast broken english so it was very hard for me to let that sink in…
We booked another ultrasound for the following week at the major ultrasound clinic in town and within the first 5 minutes the tech asked why we weren’t sent to the high risk clinic in Calgary (about an hour south of Red Deer), I asked why and she said she had to go get a doctor. After painfully waiting for 10 minutes a doctor came in and told us that our baby’s left side of his heart looked as if it was not going in relation to the right and that we needed to go to Calgary for a more extensive ultrasound with better equipment. That was difficult to hear but I was convinced at that point that they would tell us that it was just a mistake and everything was fine.
The next 4 weeks were hell.
We traveled every wednesday to calgary for ultrasound after ultrasound (so much for only wanting one) to track Hudson’s progress. the first 4 appointments were ALL bad news…
Each time was something different; Confirmation that yes, the left side of his heart was too small, full story here, No echogenic bowel but now has a plural effusion (water around his lungs) full story here, plural effusion has left the right side but now double on the left, that we might have to fly to Toronto to have a shunt put in to alleviate that fluid, and the worst one; it looks like he might have trisomy 18 and would not need heart surgery because he will only survive for up to two weeks. I don’t remember what she said after that…full story here…
I was done…I was defeated…
I went into to every ultrasound with a positive attitude in hopes to hear good news but was kicked down every time
…until Feb 23…week 31 of my pregnancy.
This time I went in prepared for the worst. We sullenly walked into our tech’s room and I laid down on the table for the 5th time (so much for only wanting one ultrasound!). The tech came in and was super nice but I was so down that my normally peppy self was only able to muster a tiny smile…until she said, “so, last time they had concerns about a plural effusion?” I said yes and knew right then, good news was coming…”Thats strange because I don’t see anything right now, just a tiny little pocket by the left lung” …full story here…
We cried….all the happy tears, it felt like the world had just been lifted from my shoulders.
From there we still did our regular weekly ultrasounds and nothing new popped up which was great but we still had to face the fact that our little Huds would be having surgery as soon as he was born (within a 4-10 days). We did a tour of the hospital and all was well until when we went into the NICU with all the newborns that were recovering or just transported…it was that exact moment when it all sunk in. I looked at Lucas and I knew he was experiencing the exact same thing. It was really hard to hold my composure. I knew at that moment this wasn’t just a story I was telling people, I actually had to do this. I’m going to fast forward a bit for a second to when WE were in the NICU and saw a couple walk in doing the exact same tour we did….I looked at Lucas and said, “I just want to hug them and tell them they will get through it, they don’t know it yet and it all looks so scary but they will, it will be ok”
We had to relocate to Edmonton (an hour north of here) when I was 37 weeks in order to make sure Hudson was born close to the Stollery Children’s hospital where he was to have his surgery. We settled into the Ronald McDonald House Northern Alberta and were welcomed with open arms…I just loved that place.
10 days into our stay, we welcomed our sweet baby Hudson into the world. I was really nervous about his birth because he was breech and if I was to have a c-section I would be recovering in a completely different hospital than Hudson. With that in mind I knew that there were some doctors that would not do a natural breech birth, and some that would, it would just depend on who was on when I went into labour….talk about stressful. When we got to the hospital and was relieved to find that the doctor that was on does do natural breech birth but it was short lived because he told me he was off in 20 minutes and the doctor relieving him was apprehensive….she came in and I straight up told her I was pushing him out and that was final. I’m a very shy person and I don’t like conflict but I was very forward with my intentions and it worked.
8:17 pm April 18 2013.
After 17 minutes of pushing in the OR room (just in case) my little breech baby Hudson arrived. He wasn’t breathing and was rushed away. After a few minutes I heard him in the room next to me and I started crying. They wheeled me into his little room and I felt so much relief but anxiety all at the same time. He was going to be transferred to another hospital and I would have to wait to be discharged until I got to go there and see him.
They got him ready in his little Stork transporter unit and brought him into our recovery room ….I finally got to hold my son….but the moment they left was one of the worst parts.
I was discharged at midnight and got to spend the night in the NICU parent rooms, getting up every 2 hours to pump since I was unable to feed him at this point.
The doctors hummed and hawed for a few days and as the days went on you could see Hudson deteriorating and slowly went into heart failure. On day 12 he had an MRI and had a really bad reaction to the anesthetics (his heart beat stayed upwards of 200 bpm for hours) so they transferred him to the PICU where he would have a nurse beside him 24/7. They set a date for the first of three surgeries (Norwood) and on, May 2, 2013 at two weeks old, Hudson was set for first case at 7am. We got up early (we were unable to sleep at the hospital while he was there) and went straight to the hospital at 5:30am. I just kept touching and tracing his perfect little chest not knowing what to expect when he got out of surgery. I kept trying to freeze time, just 5 more minutes…..don’t take him yet. But it didn’t work and the anesthesiologist and Dr. Ala Klabi (Hudson’s surgeon – who is amazing by the way!) came in to talk to us about what his surgery was going to entail. The past few months were basically a crash course on the anatomy of the heart – I was pretty sure I was an expert by the end haha.
I was able to carry Hudson down to the entrance of the operating area. I kissed him on the head and slowly handed him over to the anesthesiologist. I’ll never forget what he said “Don’t worry, I’ll treat him as if he were my own” which actually comforted me. He walked away and through the double doors went my 2 week old son. I just fell into Lucas and cried….I don’t think we moved for 10 minutes…I just stood there looking at the door…
An excruciating 6.5 hours went by and I saw Dr. Ala Klabi walking towards us in the waiting room….I couldn’t read him which made me really scared but he said everything went really well and he will be in the PICU in about 30 minutes. He was so swollen…it was hard to see him at first but it got to a point where you just get used to it. As hard as that is to imagine, it just became part of our life. I remember when I was pregnant looking at photos and thinking to myself, how am I ever going to get through this?? but when you’re there, something happens, you just do what you have to at that moment, and you DO get through it. His chest was still open due to the swelling but was closed on day 4. Slowly tubes and lines were pulled, pain meds were lowered to 0, and he was extubated on day 9.
We were in the PICU for a week and then NICU for 1.5 weeks before heading up the the Children’s Cardiac unit of the Stollery. He recovered from his surgery remarkably – a testament to how strong and resilient these heart warriors are. The only issue he had was chylothorax leak which meant he needed to be on a special low fat chain diet called Lipostart (which smells like burning plastic blech!) for 6 weeks – seriously I have no idea how he ate that haha. I pumped every 2 hours to make sure my supply stayed up and froze what I had so we could have back up when he was able to feed from me again. A week after that we were discharged and I can’t even tell you how happy I was to take Hudson outside to breath fresh air for the first time.
We stayed in Edmonton for a week after that for follow ups and on May 29th after 8 weeks in Edmonton we got to bring our son home!
The next few months were an emotional roller coaster, we knew he would need another surgery around 4-6 months old so all the while we had him with us at home, there was the looming fact that we had to go back soon. Hudson was very fragile for these months, we had to do assessments everyday and had appointments in Edmonton every 2 weeks to track his progress. He was getting three different medications, once a day for one, twice a day for another and three times a day for the last….I needed a written schedule to make sure he got what he needed and at the proper time.
On Aug 22, 2013 (4 months old) we went in for his scheduled MRI to see when he would be needing his second (Glenn) surgery. All went ok and the doctors said they would be in contact with us to set a date for that surgery. We packed up our stuff from the hotel and got on the highway back to Red Deer….about 15 minutes into the drive I looked at my phone and had about 5 missed calls and 2 messages from the cardiac unit. I called back and they told me they went over the MRI and needed us to come back right away, Hudson needed to have his surgery very soon, he was outgrowing the shunt that was put in his heart during the first surgery.
So back we went…we dropped Hudson off at the Stollery and I drove Lucas and Jensen back to Red Deer so Lucas could work while we waited for a date. I came back and spent 10 days with Hudson in the cardiac until Sept, 3, 2013 when his second surgery was set.
This one went so much faster, his chest was closed after the surgery and he was extubated on day 2. We were out of there in 10 days! Back home where we have been ever since.
Today Hudson is a happy, super goofy, energetic 22 month old. I would do this all over again and again if it meant I got to have him…
We see the cardiologist every 6 months and although his last surgery is still imminent, we are enjoying the now. We travel, we do things as a normal family, because right now even though his scar tells a different story, he is a normal 2 year old that has tantrums, drives us crazy with his climbing and occasionally needs time outs when he pulls his brothers hair…but he also cuddles and is so incredibly smart it scares me haha. I feel like with everything we went through and all that could have been, we really lucked out…Hudson did not have any chromosomal issues, and no other health worries as of now…we are incredibly grateful.
What does CHD Awareness mean to you?
When I first found out about Hudson’s heart, I didn’t want to tell anyone…not a soul besides my family. I didn’t want to be the person people felt bad for. I was doing weekly photos and blogging all that had gone on during the week and realized the more I explained what was going on the more therapeutic it was, so I wrote a blog post and the response was unexpected. There was so much support from this community of heart families that it completely overwhelmed me. I was urged to reach out and get in contact with other families but I hesitated. For me, it was merely the fact that I felt like it would be like talking to someone about their birth story. Every heart baby is different and I didn’t want to have any expectations thinking that it would turn out like this because that’s what happened to this family. So I stuck to writing it out….but everything changed after Hudson was born and we met families in the Stollery and The Ronald McDonald House that were going through the same thing…we could openly talk about it and they would understand and relate. It caught me off guard…I felt welcomed but these families and have formed some amazing real life and online friendships that I would not trade for anything. Spreading the word about CHD is so important, I had no idea going into this that 1 in 100 babies are born with CHD…that really blew my mind. Screening for this is so important, I couldn’t imagine not having been able to prepare for what were were going through and having it sprung upon us after Hud’s was born. Thank you to all the families that have reached out and been in contact with me over the past few years. Our community is one that I never knew existed but happy to be a part of now :)
Here is a link to Hudson’s Story video that we had done while in the hospital.
+ you can follow our story on instagram here: http://instagram.com/thepaperdeerphotography, @thepaperdeerphotography
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