Yesterday we took the twins to the cardiologist for their regular followup. Both kids are doing well and daughter doesn’t need surgery yet. Yippee!
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Heart Warriors – The Journey
We took both babies home from the hospital near the end of October. My mother came to help for the entire month of November. I took a photo of her holding both babies at the beginning of her stay, and planned to take another at the end of her stay. The second photo didn’t happen because when we went to the Cardiologist for a follow-up appointment for my daughter, the team said, oh well since he is here, let’s do an echocardiogram on him too. In the end, they said, Holy! how is he just sitting there?!! He doesn’t look sick, but in fact, my happy, smiling boy was harboring a pressure reading that was worse/higher than my daughter’s at her surgery. He had to stay overnight for immediate surgery in the morning.
I remember sitting in a conference room and just sobbing. I mean the stress of having a baby is one thing. The stress of having twins more so. We got through her surgery all the while being terrified that they would tell us that she died. (After all, she was a preemie, with a life threatening condition.) Now I was told that the other twin needed a procedure… so both my babies could die. I broke.
So on the last day that my mother was to be with us, my son had an angioplasty and was in the hospital only 2 days, I think, before he could come home. While my son’s “numbers” aren’t ideal, the cardiologist is happy with them and he hasn’t needed to followup procedures and actually this Monday will be his first followup Echo in 2 years. (whereas my daughter has them annually.) My daughter had to have a followup procedure to fix the fact that her valve was permanently blown open and ended up having an open heart procedure at 8 months old. We had our twins dedicated at a church service on Mother’s Day, and then 2 days later, she had an open heart surgery called a ROSS procedure. We were originally told that she would need a replacement surgery at every growth spurt and then we were told months later, that research has advanced so much that instead of the predicted 4 procedures, she would likely only need 2 more before a permanent solution as an adult. AND they didn’t have to open her up in future procedures as they would be done through the femoral vein.
My little heart warriors are now 7 and in grade 2. L has always climbed EVERYthing. She climbed in and out of her crib sooner than we would have liked. We found the monkey on top of things. She has surprising upper body strength that one wouldn’t think her tiny frame possesses. (Believe me, when she has a meltdown, you curse that strength and pray you can match her.) M has never really needed to worry about his heart. His sister accepts her heart appointments with ease and has never really given us stress about going to the appointments. “The doctor is going to fix my heart.” is what she says when we go, and she “helps” the techs to do the echos by guiding the “camera” to the areas needed. M is not so experienced so going on Monday might freak him out a bit. We’ll see.
Side story – Lives collide — or puzzle pieces fitting together
I used to work at Providence Health Care in a full-time float position. So part of my first year or so was spent commuting on the inter-hospital shuttle. This shuttle goes from various hospitals and is for staff use only. Priority goes to those who are working, not just commuting to start/end shift. So on Tuesdays and Fridays, I used to go to St. Paul’s, but not go to my office. Instead, I would wait on Comox Street entrance for the shuttle to come. It would take me across the bridge to Vancouver General, then to GF Strong, then to Children’s. I would get out here and cut through the hospital to go to Brock Farhni Pavillion which is a care facility for Veterans.
So the day that my husband left St. Paul’s in an ambulance with my daughter, he had to take the shuttle with the nurse to get back to me at SPH. He came back with this story. He and the nurse were waiting for the shuttle and when she explained to the driver the situation about this isn’t a staff member but is a dad who had to leave his baby here for tomorrow’s surgery, the driver said, “come here Dad. Get in the front. We’ll get you back.” (of course my 6’7″ husband would need the front of any vehicle) So he comes back and tells me this story, and I said “This sounds like Doug.” Hubby didn’t remember his name, but the description I gave sounded right. Doug was one of the many (4 or 5) drivers that I shared my time with. He had an exuberance and cheer that I loved. I was actually surprised when we started swapping recipes. (yes I was prejudiced and didn’t think that men cook, nor remember recipes off the top of their head.) My favorite was his recipe for “Death by Chocolate” trifle.
So after my baby girl had gone through her surgery and we had been at the hospital for a day or so, I remember saying to hubby, “well, it’s almost 3, didn’t he tell you that he usually does the 3 o’clock run? Let’s go tell him that she’s ok.”
So we stood at the main entrance of the hospital and waited. The shuttle area was actually across the way but I either didn’t feel like going over there (post C-section), or thought that was I wasn’t planning to ride, that I didn’t think it was appropriate to go there. So we stood and waited. As the shuttle came around the bend, it slowed and didn’t even make it to us, before I saw him almost stop. He looked at me, and pointed. “You?”
I pointed at myself. “yes, me. My baby.”
He stopped the van near the entrance, probably confusing the staff waiting for him to pick them up, and got out. “Is it really you?” ( I hadn’t worked at BFP for about 8 or 5 years at that point, so it had been a while since he saw me.) “Is it your baby?”
“Yes, Doug. It’s my baby. She’s had her surgery and she’s fine now.”
“Oh” He said, “this just made my weekend. I don’t even care if I get turkey.” (remember it was Thanksgiving weekend.) “You know, I saw Dad here as I came around the corner, and I thought Aw, gee. and then I saw you and I was stunned. This is the best.”
“Well, I thought that you should now, given that you met him 2 days ago, and wouldn’t know how the story ended.”
A week or 2 later, he met my son upon his release from SPH, after one of our visits with his sister. It’s amazing how stories/lives collide.
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Hubby also told me that the nurse said that she had met me during her time as a patient and I actually remembered when I met her as well.
Lives collide.
Birth Journey continued
On my way to have babies
My little munchins together in a crib for the first time in a crib. About 5 days after birth
So off I went to have babies at 5 a.m. on a Sunday morning. I went off to have a C-Section. I missed out on the “first photos” after birth as the twins were rushed off to the NICU shortly after dad cut the cord. I was sent to recovery, where I had one of my former nurses clean me up and look after me. That was weird. Being a patient in the hospital where you worked for 8 years is weird.
Twin A (L, the girl) was born at 5 lbs 1 oz, while Twin B, (M, the boy) was 6 lbs 1 oz. I called my friend early in the morning before she left for church and told her that she should think about coming down the block to visit us. She apparently ran into the choir room shouting “the babies are here! the babies are here!”, or so I was told by the choir director. No one needed to be told which babies she was referring to, and it was announced from the pulpit. (I was later told by one person that when he heard the weight, he hadn’t realized that they were preemies, because frankly those are good weights.. understandable, I was a house trying to move the last few weeks.)
We had a stay in the NICU of St. Paul’s because they were preemies. At the time, there were 2 other sets of twins born as well. During our stay, we had up to 5 sets in the NICU for a brief period. Alas, my twins had to split up shortly after being freed from the incubators because the doctor detected a heart murmur. And so it began, Twin A was sent with dad to Children’s hospital for an echo, while Twin B (the boy) remained with me at St. Paul’s. They were gone all day. He phoned me to tell me that she wasn’t allowed to come back because her echo wasn’t good. They needed to do surgery. In the end, she was diagnosed with Aortic Valve Stenosis. This was explained to me as the aorta has 3 valves that are supposed to open when the blood goes through, but her heart was only opening 2. So blood had to be pushed harder to get through. This can strain the muscles and make the heart work too hard.
In the end, we spent a nerve-wracking day, October 7, 13 days after they were born, and 4 days before the original C-section was scheduled, waiting to hear if our daughter was ok. She had an angioplasty, which is essentially the “balloon thing” that blows a valve open. Unfortunately, she was so little, that it permanently blew her valve open and so blood flowed undeterred, meaning good blood and uncleaned blood mingled and this would have to be fixed later.
So we were introduced to the Cardiology department of BC Children’s Hospital and my little heart warriors began their journey with a crash course for us parents. I called my colleagues and told them to come wait with me. It is also strange to become a patient on the receiving end of the work that you once did but thank God for the people that I knew, that I could call on for support.
For the next 2 weeks, I went to St Paul’s in Vancouver for the day with Twin B, learning how to feed him, hold him, scared I would drop him; and then late afternoon, I would go to Children’s PICU to see my daughter. By then it was a long day for all of us, and there were some not so nice comments from a couple of nurses. I complained about one as she basically said that I was never there, and they wouldn’t release her until they knew that I was a fit parent to take her home. I did NOT need that, thank you very much. Not only was I stressed about becoming a mom, I was also dealing with 2 babies, — 2 babies in separate hospitals — one having just gone through a life-threatening/life-saving procedure. Learning a new hospital system and a new world (maternity wards, milk banks, breast pumps) was also stressful. It was actually 3 days post-surgery that I timidly asked if I could hold my daughter. She was hooked up to cords and tubes that I was scared it would interfere with her healing. The nurse looked at me with shock and surprise that I had yet to hold her since her surgery. Sat me down in the rocking chair next to her bed and placed her in my arms. It was all I could do not to cry as she was so small.
Twin B was released from the hospital on October 19th and we took him to see his sister. I was told that putting them in the bed together was encouraged as supposedly sensing the healthy one would help the recovery of the sick one.
After she was released from the PICU and sent to the ward, I put them in the bed together. I remember a nurse coming in to take blood and she literally did a double take. “There’s 2!?”
“Yes.” I said.
“Well, which one is the patient?”
“Um… the one with the tubes coming out of her.” I said, awkward smile.
How it all started
It seems a millennia ago, that I moved across the country to live in BC. I am a girl from Prince Edward Island but had to move so that I could work in my profession and get paid what I thought I was worth. I worked 8 1/2 years at St. Paul’s Hospital before “retiring” as my colleagues called it. I wasn’t planning on going back to the profession as I was burned out. I spent 15 years in healthcare and “retired” at the age of 36 to pursue other options, when mommyhood finally called. I was blessed with not 1 baby, but 2, at the same time.
We did IVF so that I could become a mother. Yes, I knew that I could adopt, but I wanted the experience of being pregnant. The doctor was actually surprised when he confirmed my pregnancy.
“uh, I think you need a bigger car”, he said.
“why?” I asked.
“Well, … there’s 2.”
“Right.” I said matter of fact. “You put 2 in, so why are you surprised?”
“Well, I didn’t think they would both work.”
To be fair, my follicles grew fast so we implanted before the “usual” period of 5 days. So he didn’t think that the “big” one would work. For months after giving birth, I actually ruminated over “which baby wasn’t supposed to have worked”. I stopped thinking that after a few months, but the worrywart in me couldn’t let it go for a while.
So we had 2 babies. A boy and girl. We were actually early. Most pregnancies are 40 weeks, but twin pregnancies are usually only 38 weeks. So I was scheduled for a C-section 3 days after Thanksgiving 2011. Instead, we think that baby girl (Twin A) had other ideas as my water broke on September 23rd, a Friday. I was on my way to a workshop that I needed for my peer review (for certification in my profession). I ended up being late and then having to leave after an hour. I was actually at the Children’s hospital and had to go to the hospital that I used to work at. Dragged my poor husband from work, only to be told that I wasn’t dilated, I had likely just peed my pants, go home.
Hmm. I think I know the difference. But anyhow, went home. My baby shower was the following day at a choir member’s house (hubby and I met in the church choir). I was uncomfortable and my feet were swollen. But it was lovely. Afterwards, we had friends back to the house for BBQ & Catan (Settlers of Catan board game). Usually I play but I spent my time going upstairs to google “what does a contraction feel like?” As I was having twins, it was assumed that my birth plan was a C-section so no one ever told me what contractions were like or what to look for.
Long story short, I saw the same intern who then said “oh you are dilated now.” and we had twins born on hubby’s birthday. So in September, there is a mass party and I have had to explain to my children that they don’t get presents on my birthday in January, which confuses them.
The Journey Begins
Thanks for joining me!
Hello
it’s been a while since I have been in the blogging world. I am a mom of 7 year old twins who have a congenital heart disease and autism. While I know that there are probably a lot of blogs about there for moms, parenting, autism and the like, I thought that it might be helpful to me to write things down but also that I share with others as it might resonate or help others.
I’m not sure what this blog will look like but thanks for taking this journey with me.
That ASD Mom 