Sunday, April 27, 2008

Holding Sebastian for the first time...

The day after Sebastian came off the Ventilator was one of the most special days for me. When I showed up at the hospital in the morning, I asked about when I might get to hold Sebastian. I mean, he was 17 days old, and his parents had yet to have the opportunity to hold him. Now, holding a preemie is no easy task. There are all sorts of wires attached to him, the nasal prongs, the pick line etc. So, moving all this stuff and pulling him out of his nice warm isolette are a bit of a challenge. For this reason, you only get the chance to hold your child once a day. As the wires come off, it becomes less of an issue, but at first, when a preemie can't even hold his own temperature, they are pretty strict about holds, so that the moves back and forth don't cause too much trauma. Well, I chatted with his nurse, who, happened to be a guy that day, a guy who was an ironman athlete no less!! Oh, and did I mention, that Sebastian, the super star, actually completed two marathons before he was born. It might explain why he never stops moving (until nap time of course). 

Well, the nurse told me to go pump and if all was well, I could hold him when I got back. A small word on pumping here. Breast milk is the easiest thing for a baby to digest, and somehow, when you have a preemie, your body just knows and produces milk that's suited to a preemie, higher fat, etc. It's neat actually. So, they encourage you to pump as the milk is considered liquid gold. Needless to say, every 3 hours I had a date with my yellow medela symphony pump (rented of course). Not the funnest, but hey, if it was good for Sebastian, I was willing to do it!!

I got back and it was time to hold Sebastian. I was going to be holding him in what they called "kangaroo care". Basically, they place him, on my chest, skin to skin. I somehow adjust my temperature to meet his needs, and he just lies there and takes it in, listening to my heart beat etc. It was developed in South America I think. At some hospital, they ran out of spaces for babies needing isolettes (incubators), and so those babies that didn't have an isolette were put with their moms, and the moms help their babies, skin to skin, to help keep them warm (since most preemies can't hold their own body temperature). Well, surprise surprise, the babies that were with their moms, ended up doing better than the babies getting all the fancy technology. So now in most Neonatal Units, they highly encourage kangaroo care as a way to help the babies. 

Well, I was on a rocking chair, wearing a hospital smock, and they placed Sebastian right on my chest. Words can not describe just what an incredible feeling it was to have him there. After a very rough 17 days, I was finally able to hold my son. He was snug as a bug and did great, with hardly any desats. 

The next day, they finally started feeding Sebastian. Up until then, he had only had nutrition by IV, so it was so exciting that he was going to eat. They started out with pedialyte (basically an expensive version of Gatorade for kids). And since they were successful with that, they started him on breast milk the next day. I held Sebastian again, and the next day would be Jeremy's turn (as they would only let one of us hold him each day at this point). 

So, next up, they wanted to take out the drains that were inserted on the code blue day. Up until this point, the drains were sticking out of Sebastian's stomach on the lower left side. There were two of them, and they basically looked like surgical tubing of some kind, about half a centimetre wide, and they stuck out of his stomach about one centimetre. So, to take them out, they just pulled on them a little every half hour. There were small cuts in them at one point, and when they had pulled them to that point (maybe about 4 cms were sticking out by now), Sebastian got really uncomfortable to the point where the nurse had to get the doctor to come. The doctor pulled the drains out the rest of the way. They were about 12 cm long all together. Craziness!! Oh well, once they came out, Sebastian settled right down. Sadly though, because he was not doing as good, Jeremy was not able to hold him. 

The next day, Sebastian was not doing well. Tests indicated he might have an infection (a real concern since his abdominal region had been exposed to the real world via his drains). They had to do an x-ray to see what was up with him. Luckily, nothing showed wrong, so they resumed feeds.

Five days after I held him, Sebastian was held by his dad for the first time. Jeremy was so excited to hold him, especially after the 3 day delay because of the abdominal issues. Jeremy loved it. Just look at the picture. It says it all. This was such a special moment, because after 22 days, Jeremy was finally able to hold his son for the first time!!

Oh, and keep in mind, that Sebastian was still not even weighing 2 pounds when we held him for the first time. Just go to your fridge and pick up 2 blocks of butter. That weighs more than Sebastian did when he was born, and when we held him for the first time!! 

So, that was holding Sebastian, there were more challenges to come, but we'll get to that again later!!

Friday, April 25, 2008

The roller coaster continues...

So, Sebastian was put on all sorts of medications and machines. He was put on a drug to keep him paralyzed so that he couldn't move and fight the machines. He'd had several blood transfusions as well, since he wasn't yet producing his own red blood cells. He was under the bili lights for jaundice.  He was at the highest settings on most stuff, up to 100% oxygen, as high as the nitric oxide would allow. All we could hope for was that they could start weaning medications. As Sebastian's blood pressure stabilized, they started to wean the two meds for that. Dopamine and dubatamine. They also began weaning the nitric oxide. I remember the doctor telling us that the nitric oxide was very expensive and a fairly new option. They were still doing blood tests almost every hour. 

By day 6, the steps forward were huge, the two blood pressure drugs were done, as was the oscillating ventilator and the nitric oxide. And, he was put into an isolette (incubator) for the first time. Things were really looking up. And then he turned a week old.

Day 7 was one of the worst days. I have to start by saying I was supposed to get together with a couple friends that day, so we stayed home in the morning to await their call. We never heard from them, and when we called them, there was no answer. I was a bit upset, but shrugged it off. We called over to the hospital to get an update. Calling the hospital was pretty common practice. We called every night when I got up to pump. We had the unit's card sitting by the phone so we could always check in on our little man. Well, the nurse said to hold on. This was not good. Then, the surgeon came on the phone. Sebastian had a code blue. He stopped breathing etc, and they had to go the route of CPR etc. It was not good. The cause of this was a bowel perforation. Likely, this perforation had always been there, but he was so sick before they didn't know, but as he started to improve, it became apparent, and wham, code blue. They performed emergency surgery and inserted drains into his abdomen. I was so glad we hadn't gone to the hospital in the morning because I don't know how I would have handled being there for such a scary time!!

Well, after the code blue, Sebastian was put back on the oscillating ventilator and back on the nitric oxide. He didn't have to return to the blood pressure meds though, and the doctor said that he was in better shape than he had been 4 days earlier. The brain scans still looked fine, so that was good too. Now, had Sebastian been born a few years earlier, and had a bowel perforation, likely nothing would have been done to save him. Babies like this would be left to move on to a more peaceful place. I'm so glad that times have changed and treatments improved because Sebastian has come so far and knowing that only a few years has made such a difference is huge. The advances that have been made are huge!!

Next up they began weaning the milrinone. This was a medication to help the heart. It was a slow process and was weaned over the course of about 2 weeks. 

It was around this time that Jeremy started getting hassled by his boss to get back to work. Initially, he was told to take as much time as he needed, but after a week, he was being hassled to get back to work. It was unsettling to be worrying about that when the bigger concern of the day was whether or not Sebastian would be alive to see the next day or not. His heart was still an issue and we didn't know if they'd need to do surgery yet, and if they had to do surgery, how he would cope with it. So needless to say, the added stress of Jeremy's boss certainly didn't help matters. 

April 7th was an important day. The doctor told us that we were no longer worried about day by day. That was nice to hear. We also learned on this day that Sebastian's PDA had closed itself off. This, in itself was a miracle. Normally, if it hadn't closed by now, it would take medication or surgery to get it closed off. Neither of those two options were ideal for Sebastian, so the mystery close suited us just fine. After this, the next big hurdle would be to start feeding him. 

They inserted a double pick line. Did more transfusions and started the caffeine drip. Sebastian was truly a Starbucks baby (the caffeine helps keep these little preemies breathing properly). 

On Sunday, April 9th, Sebastian was a bit unsettled, so they took him off the ventilator and he adjusted well to this. It was so quiet without the ventilator on. Sebastian had oxygen via nasal prongs. They were trying to avoid CPAP as this forces air in to the tummy as well and that would do no good for the bowel perforation that was trying to heal.  So, we had to hope that the oxygen would be enough. With Sebastian off the ventilator, it was finally time for us to hold our child for the first time....but more on that next time...

Sunday, April 20, 2008

The weekend my son was born...

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...

Friday, April 18, 2008

The next best birthday present...

My husband is the best ever, for two birthdays running. Of course this year, the present was a little delayed, but totally worth the wait. But the story actually starts last year. Last year, I had it in my mind that I wanted to do the Goofy Race and a Half Challenge, at Walt Disney World. Basically, you run a half marathon on Saturday, then the full marathon on Sunday. So, he got me an entry for my birthday (this race fills up usually mid February, so you have to be on the ball and get registered early). Every day, I checked on how full it was, and then mid February, it had reached capacity. But, my dear dear wonderful husband had secured me a spot earlier and that was my birthday gift. Of course, it actually ends up being a big trip for the whole family, but it was the race that got things going. 

Well, after running those races in January 2008, with Team In Training, and having the best time, and even getting a personal best time for the marathon (still very slow, but fast by my standards), the trip was over and it was on to life as usual. My birthday (in March), came and went with little fanfare (which I am perfectly okay with). Jeremy didn't really have any ideas for me so he didn't really get me anything (I am not discounting the beautiful roses he got me in any way, but by his own words, he didn't have any ideas of a good gift). 

Earlier this month, I learned that my half sister and half brother were planning to run the Disneyland Half Marathon. Jeremy and I had already discussed the idea of doing this race at length, but came to the conclusion that it just wasn't going to work out. I was sad because if you run both a Walt Disney World race and the Disneyland Half, then you get a special medal for running Disney on both coasts. Well, I was invited along to do the half, and mentioned this to Jeremy. He was all over it. Said I should go, have fun and enjoy. And, HE SIGNED ME UP!! So, lucky me, is going to be running the Disneyland Half Marathon after all!! I am beyond excited, and I will get to know Kim and Ryan better in the process. And, I will be at Disney with people who really want to be there and actually like Disney. I think Jeremy just tolerates Disney. So, now, I really need to get training more so that I can keep up!!