My son is truly amazing. A miracle. I know lots of people say that about their kids, but I really believe it with Sebastian. You see, he was born prematurely at 28 weeks, and was really sick as well. It all started on a day that my husband and I were going to spend together. He couldn't get the morning off to come to the ultrasound, so he took the whole day off. We had an ultrasound scheduled, and I also had a physio appointment scheduled (broken leg, talk to my dog if you want to know about that). We went to the ultrasound, (after I consumed the huge amounts of water they want you to have and then not pee, oh so hard to do) and after 5 different people looked at him ( a student, 2 techs and 2 doctors), they finally talked to us. We knew he was alive, we could hear a heartbeat when they had the doppler thing on. But, we had no idea what was wrong, but knew it had to be serious, since people kept checking us, then wanting to get a more senior person or second opinion. It turns out, he had hydrops. He was overloaded with water, he had stopped growing, his heart was too big...I believe there was a total of 9 different things on the ultrasound that they could tell were wrong. Therefore, they gave us two options: continue the pregnancy, knowing the baby would die, or deliver the baby and take our chances on the outcome. It's funny, because some how, I just knew he was going to be born that day. So, when that was the only option that might allow him to live, of course we were going to take it, not knowing what the chances were for his survival (they weren't even that good with having him that day), or what long term effects he might have from being born so early. His situation was so serious, that they didn't even have time to do the steroid shots to speed up his lung development. He was going to be born within the next couple of hours if he was to have any chance at all of survival.
So, we left there, and drove to the hospital. As you can imagine, it was a tough drive. I called my parents. I couldn't even talk because tears were welling up and my throat was all choked up. Finally, I got out that we were headed to the hospital to have the baby, because he was so sick. We then called my mother-in-law passing on the same message. I remember my husband honking at a car on the way there. I remember we didn't actually go into the parking lot. We pulled up to the front door (they told us to do this at the ultrasound clinic). We went out to the 5th floor. I had no paperwork; they were preparing the report to fax over. They hooked me up to a fetal monitor. They prepped me for the surgery. I think a doctor came and spoke to us, not 100% sure though. I remember telling Jeremy to call my brother and reciting his work number from memory. I wasn't going into surgery without my brother knowing what was going on. Then Jeremy had to go and get me a blue card so I could be admitted as a patient.
Soon enough, I was in the operating room. I don't remember if I was wheeled there or if I walked or what. They did all kinds of stuff. I got the needle in my spine. Yuck. They touched a nerve, literally. It was a gross feeling in my leg as the impulse went through it. The nurse was amazing through that needle though, super supportive and I'll never forget how nice she was to me. Did I mention I'm not that keen on needles and surgery and all that stuff. I mean, nobody is, but I remember when I first found out I was pregnant, wondering how I was going to actually go through with the whole delivery thing and how I'd actually get to the point where baby and mother existed as two separate beings, because I was so afraid of labour and all that stuff. And now, there I was lying on a table about to be cut open. Jeremy soon joined me (after drinking the obligatory orange juice offered to all dads-to-be). I remember seeing a team of about 6 doctors and nurses waiting for the baby. That really scared me and really set in how serious the whole thing was. They were there for our son, because as soon as he was born, he'd need help. Jeremy held my hand, told me I was doing great. Really, all I did was lie there, but I'm so glad he was there with me!! Eventually, he was born, they took him and were almost immediately inserting a ventilator. Because he was so sick, there was no time to give me the steriod shots to help his lungs. So, of course, when he was born, he wasn't going to be breathing on his own with his little underdeveloped lungs. Pretty soon, they had him stable enough to move, and as they were passing by, Jeremy asked them to hold him up, so that I could see him. I will forever be grateful to Jeremy for that. I remember the nurse picking him up to show me, and two seconds later, they were gone, with Jeremy right behind them. He asked if I wanted him to stay with me, and I said I'd be okay, and to go with the baby. They went in the backdoors of NICU.
After the surgery, they had to sew me up. I remember the delivery doctor telling me that she would put it on my file, that any future babies would be delivered by c-section. I said sure, whatever. It wasn't until a year later, when I asked my doctor about it, did I find out why. Basically, because this happened so early in the pregnancy, the cut they did was through the uterus being pretty thick still, so in a future pregnancy, if I tried to deliver naturally, the risk of me bleeding out would be too high. Next, I had to wait for my legs to unthaw. I have never really had surgery, except for my wisdom teeth, and my tonsils (and I was only 5 when that happened). So, the closest I could compare this too, was when you get a filling and your cheek and stuff are all numb. Well, this time, it was my legs. It was a strange sensation not being able to move them, and then just barely move them etc. While I was waiting, my brother showed up, as did my mother-in-law. My brother was joking around about how I'd be able to start my diet early now (earlier I had been telling him that I wasn't going to diet or anything until June and before he knew I was pregnant, he just couldn't figure out why I was waiting so long). The nurse brought me a photo of our son. It said he was 830grams (1lb 13oz). He looked so tiny!! We visited waiting patiently for the legs to return.
Once my legs were mostly back to normal, Jeremy and a nurse wheeled me down to NICU (did I mention that I also had a broken leg at the time, so aside from the surgery and not being in a great condition to walk, I was also not really able to walk because of my broken leg). Before you enter NICU, you have to scrub up with some pretty harsh soap. Thus began many months of scrubbing up. I think I washed my hands more when Sebastian was in the hospital then I did in my whole life (okay, maybe not my whole life, but at 12 or more times a day, just imagine how dry the skin got!!).
So, we got to Sebastian's bedside, and he was hooked up to a million wires (I know, that is a bit of a stretch, but not by much). He was under warming lights (preemies take awhile before they can keep their own temperature), and had his own, dedicated nurse, who did nothing but care for him. We talked to the doctor, things were not looking good for him. They were still trying to get him stable. We weren't allowed to touch him or anything. He was just too fragile. He was being put on all sorts of medications, to deal with blood pressure issues, his breathing, his heart, the hydrops, etc. It was scary. The doctor said they would know more once they did and echo on his heart and once they did the brain scan. The brain scans are the scariest. They check for bleeds and then rate them from one to four. The higher the number, the more likely the infant has had significant trauma to the brain and may have suffered brain damage. Unfortunately, they never know the extent of the damage for months or even years later, and some kids with serious bleeds turn out fine, while others have significant life challenges or disabilities.
The next day, things got worse, Sebastian got sicker, they added more meds. They had to move him to a different ventilator, an oscillating one. Seriously, the machine looked like it was from the 70s or something. and it made so much noise. Sebastian was maxing out on all the medications and settings on the machines. Next up they added another machine. I think it was nitrous oxide. It's a super expensive patented machine. And the numbers on that one kept climbing. He was maxing out on everything. Unless he started to improve, they would have to have "the talk" with us. All of it depended on the brain scan. Well, lucky for us, the brain scan came back okay. No issues. Thank goodness. I mean, he was still at the end of what they could do for him, but at least they were still willing to try.
I remember the Saturday well. It was a weekend. So, of course, all these people coming to see us were there on what would normally be a day off. People were quizzing me left right and centre about my lifestyle and habits. I was asked so many times about my drug use. It was crazy!! I don't think I even took more than a tylenol while I was pregnant, and suddenly I was being asked about crack, cocaine etc. Apparently I just didn't fit the profile of who might have this situation. We mentioned the broken leg, but they didn't seem to think that would be the cause of this (happened two months before he was born). Nothing fit as to why he got so sick. And to this day, nobody has had any kind of explanation as to why this happened. We talked to metabolics, genetics, neonatology, all kinds of people. They did blood tests on me, and on Sebastian. They had to prioritize his tests though, because they were about to start him on transfusions, and then couldn't do any more tests as it wouldn't just be his blood anymore. And besides, him being so small and everything, there was not much blood to take. And, since they did blood tests on him every hour, they had to pick and choose the tests they wanted done.
We had all kinds of visitors on the weekend. It was almost too much, except that the visitors made it easier to escape from the reality of the situation. Nobody got to see the baby except the grandparents and the aunts/uncles and even they didn't stay for more than a couple minutes. He was just too sick for visitors. Otherwise, there was his picture, and that was it. They don't want much for visitors in the NICU as the babies are sick and any bug that gets introduced can kill them. It was nice to see people though. It really let you know that people actually cared. Jeremy also sent out an email and we got all sorts of people emailing their congratulations and stuff as well. I can still name off every person that sent us an email. It meant so much reading those. We also learned who our real friends were through this whole experience. Some people really stepped up and cared so much. It was very eye opening.
They had so many issues to deal with for him. Each morning they do rounds, and parents can participate. The group is huge for the rounds, especially in the beginning. There are doctors, residents, nurses, nurse practitioners, respiratory therapists, etc. I think it was about 6 or 7 people there most times. And, for the first couple weeks, it took about 15 minutes or more at his bedside because there were so many issues to go over.
By the end of the weekend, Sebastian was still super sick. They were still doing tests on him every hour. He was still maxed out on all the meds and machines. Time would only tell if he'd improve....
I'll write more about this experience, I just didn't want to make this post too long!! We're doing the Sport Chek Mother's Day run in three weeks, and it supports Neonatal Intensive Care. They will be purchasing equipment for the Neonatal Units in Calgary. The equipment they buy, really does make a difference. Sebastian is living proof of that. If you want to support us on Mother's Day, click here to donate: Sport Chek Mother's Day Run
Thanks again for reading...I'll post more of our journey through NICU over the next few weeks leading up to the run...