Monday, May 19, 2008

The simple cardboard...

I learn a lot from Sebastian. He is a daily reminder to have fun and enjoy the little things. Like cardboard, for example. We recently bought some patio furniture, and wouldn't you know it, the coolest thing about it, was the box the chairs came in. It's now a fort. It has windows and doors, and a secret swinging door set. It's great. He loves it. You can knock on the window and he'll open it up. It's such a simple thing, yet to him, it's the world. 

I think lots of times that people really get wrapped up in details and things that are beyond their control, when really, if we stuck to the simple things, life would be easier. So I'm going to work on that this week. Just enjoying all the simple things. 

Like pretty pink flowers that have bloomed in our flower bed. Chasing Sebastian around the yard, at least 20 times. Playing in the fort with him (it really is a big box, and even I can fit inside). Going for a bike ride (we did this yesterday, for the first time in 3 years, and it felt so good, not sure why I missed out on that for three years now!!). Playing fetch with the dog. Seriously, you throw, he brings it back, and the cycle keeps on repeating. Every throw, he's just as excited as the first one, and if he gets tired, he takes a break, and five minutes later, he's ready to go again. So simple. 

So the next time you over complicate something or stress over something you cannot change, stop and think about the simple things in life. Then, go build yourself a cardboard fort. You'll feel so much better!!

Sunday, May 11, 2008

Mother's Day Run...

We ran the Mother's Day Run today. All these memories brought to the forefront with the run. 

It was a lot of fun. I love being a mom. I love that I have a son who is just so full of energy and never stops being curious about everything. I love that my husband is supportive of me and loves me for me. I am blown away by the support and pledges we received from some many different people.

It was one of the best runs I ever had. Jeremy and Sebastian were signed up for the 5km and I was signed up for the 10km. I knew I'd be on my own for the run, but I was okay with that. Jeremy signed it up that way. He's training to do shorter stuff and I've been doing longer stuff. I brought my ipod with me, filled with songs that I listen to that remind me of Sebastian's hospital days and songs that are full of hope about life for a child. Needless to say, it made for an emotional run, but only in the best of ways. It really drives home what a difference this event makes for the lives of NICU kids. I would never be able to buy the equipment this unit needs on my own, but with the power of many, all the donations we raised will go to make some big purchases. It's fun being part of that!!

Oh well, I'm still grateful we had the support we did. Thank you everyone who donated!!

Wednesday, May 7, 2008

Home, hospital again, home...

So we finally had our little turkey home. He was discharged with all kinds of instructions and follow up. He was discharged with a prescription for vitamin K (very hard to find a pharmacy that does that), and a variety of follow up appointments. First the nurse, the day after he came home, then the pediatrician later that week, the surgeon (to consult about the hernia from his incision when he had the bowel perf and drains were inserted, but now intestines squished out), the vision clinic (cause his eyes had become an issue for ROP the last couple weeks), the nephrology clinic for his kidneys and the perinatal clinic (but not until he was a bit older). 

Well, the nurse was great. She weighed him, checked him over and helped with things like breast feeding and such. The pediatrician was great and come to think of it, it was maybe her that referred him to surgery. The eye appointment was okay. We were at a private clinic, and they were worse again, so she wanted them checked again in a week. Since she'd be gone she referred us to the vision clinic at Children's, just to be safe. The surgeon was okay, it was basically, keep an eye on it, and if it changes colour or if the baby seems in distress, then call to have the surgery. He didn't want to put him under until he was bigger. And nephrology was good, but it was more of a watch and see, with the occasional ultrasound to check on how things were progressing. 

So, week two, we still have the nurse coming every few days, and then on Wednesday we went to the vision clinic at the Children's Hospital (this was when it was still the old Children's on Richmond Road). Well, the eye clinic is always tough. They put two sets of drops in the baby's eyes and then you wait for about half an hour until the pupils are dilated enough for the doctor to see. Then, someone holds the baby, while the doctor pries the baby's eye open with a special tool, so she can have a real look at what's going on. They are looking to see how the vessels are growing and making sure that the retina doesn't detach and cause blindness. Well, towards the end of the hospital stay Sebastian's eyes started getting worse. I went to this appointment with Sebastian, and within 10 seconds of looking at him, she said he needed surgery, in the next two days. Of course this made me cry. We'd only had Sebastian home 10 days and already he'd be readmitted to the hospital. So, we got a few details and procedures and then asked about having the hernia operation at the same time. I mean, if he was going under regardless, we might as well get it done too. The opthamologist was fine with it, so we had to go and check on the surgeon. We went back to the surgery area, asked there, and had to wait a bit (obviously since we had no appointment). Eventually we talked to him, he was a bit doom and gloom, and was pointing out all the worst case scenarios of doing the two surgeries together. Since the eye doctor was fine with it though, we agreed to do both.

Thursday, we waited but there were no beds available, so we were pushed back to Friday. On Friday, we showed up at the hospital. We got Sebastian admitted. He had a room on one of the lettered wings until before the surgery. We hung around. At one point the nurse encouraged us to leave and go get coffees or something, so we left, and while we were gone, they called and said it was time and Sebastian was going in. We hurried back and were able to carry him to the surgery floor. We had someone with us, and Sebastian was dressed in green hospital scrubs. We went into an elevator that had stuffed toys hanging inside. I nearly lost it. I suddenly got so scared again. The nurse came out to talk to us, she had all sorts of neat little badges and toys (obviously for the older kids). Everyone was so warm and caring, but never the less I was so afraid. Both the surgeon and eye doctor spoke with us beforehand to let us know what was going on, and what would be happening. Eventually it was time for them to take Sebastian for the surgery. I know I cried. I was so scared to give him away like that, knowing he would be knocked out and put on a ventilator again. It had taken so long to get him off it in the first place, I was truly fearful it would be long again. 

Well, we waited around while the surgeries happened. Each doctor came to speak to us and let us know that things went well. Sebastian was in post surgery and would be headed off to the ICU shortly after that. We were told to head towards ICU and when he was settled, we could see him again. PICU at the Children's is a closed off unit. You actually have to pick up a telephone and have a nurse let you in. We did this, and then waited in the waiting room for Sebastian to arrive. I think it was about 20 minutes later, he was brought in. He was off the ventilator, but still on oxygen. They got him settled and we got to visit again. He was on pain medication and a variety of eye drops. He was not settling really well, so they had to keep the oxygen on. Slowly, he started to stabilize better, so we eventually could leave. I got to learn about all the pumping rooms in the Children's while I was there!! We went home for the night. But called to check on him before we went to bed. 

The next day, we spent most of the day at the hospital. He was getting better and by the afternoon I think, he was off oxygen again (huge sigh of relief!!). We were told that if things kept going as they were, that we'd be taking him home the next day, Sunday. We stayed for part of the evening and then left to have supper with Chris and Jeff. 

Sunday was special. Sunday was Father's Day. Sunday was the day that Sebastian came home for good. Again, he was given discharge instructions. Prescriptions for 3 different kind of eyedrops, and more appointments to follow up from the surgeries. 

Once we got him home this time, we never looked back. We have been fortunate enough to not need the use of overnight hospital stays again. He's continued to be followed by the clinics but for the most part is doing really good. Nephrology plans to discharge him after one more good check in the fall. Surgery hasn't seen him again since the followup after that. Vision clinic still sees Sebastian every 6 months (however, this is much better than every week, which it was for a few months!!). The opthamologist thought he'd have glasses by now (very common for preemies who have had ROP eye surgery), however, he's 2 and so far so good still. He had a fantastic year the first winter.

This past winter has been a bit of a challenge for Sebastian. He got a nasty flu in December (despite having the flu shot of course!). Then caught a cold. Then, he had an ear infection. Then he got another cold. Then he got another ear infection. Then he got another cold. Then he got a lung infection (imagine sticking your child in a tube so he can't move for the x-ray...not fun at all!!). And he's continued to battle colds since then. This is his preemie lungs not being able to fight off stuff as well as a normal child. It's frustrating, because there is nothing we can really do to help him. He has inhalers that he takes now, in an effort to help his breathing. It's been a tough winter, but he's doing pretty good now (after like 4 months of almost a constant cold, grrrrrr). 

We did the Mother's Day run with him last year. And on Sunday we're doing it again. This year, Sebastian also gets to enter the little legs race. It will be his second race (he had one in January). Forzani's is the group that puts on the race, and for the 3rd year in a row, the money they raise is going to support Neonatal Intensive Care. They are buying a variety of equipment for the unit. We will forever be grateful for the care that Sebastian received at Foothills NICU, Peter Lougheed Special Care, and Children's Hospital PICU. 

Sebastian is now 2, and if you watch him running around and being this incredibly energetic toddler, you'd never know that the first 2 1/2 weeks of his life, we wondered if we'd ever see him make out of the hospital alive. What they do for babies in Neonatal Intensive Care is nothing short of amazing. Really. Truly. Completely. 

So, there is Sebastian's story. The story of our family. It's been an incredible journey so far, with some pretty scary bumps in the road. But, all I have to do is get a "huggy" from my little boy, and I know that it has all been worth it. So, that's my look back, now I'll continue on blogging, but with stuff that we're doing now. Thanks for reading, and feel free to leave any comments. It's always nice to see who reads!!

Sunday, May 4, 2008

Life at PLC

Well, Sebastian started improving leaps and bounds soon. I mean, there were still setbacks, but nothing like in the beginning. The setbacks were no longer life or death and he continued to eat, gain weight and grow. 

As he got bigger, the only big challenges were holding his temperature and learning to eat on his own (so far all the nutrition he got was from a feeding tube). 

So, because the pick line was gone, and he was really only on oxygen (as well as the monitors for his heart rate, breathing and oxygen saturations), he didn't need to be in an intensive care unit any more. I showed up one day and there was a portable isolette on a stretcher. I knew that he was moving. I visited with him, pumped and when I cam back, they were packing him up to move him to Peter Lougheed Hospital. I'm not sure why, but it was super emotional. I think partly because it was change, but also because we'd be saying good bye to some of Sebastian's primary care nurses who had looked after him every shift they had since he was born. Laine, Helene and Barb were absolutely fantastic and were kind to us and amazing, and leaving them behind would be sad. I watched them wheel the stretcher down the hallway and just like that, Sebastian's days at Foothills were over. 

I got in the car and drove over to PLC. The staff at Foothills had told me where to go, and now it was a matter of waiting for my little guy to show up. He got settled, and life as we knew it was changed all around. In the same amount of space that had one baby at Foothills, now 4 babies would fit. Most of the babies were in cots (they seriously looked like they were from the 50s or something). Sebastian however, was still in an isolette. We didn't know anyone. Half the babies were from Foothills originally, but the other half were babies that needed some care after birth, but not the care that Foothills provided. PLC is considered a Special Care Nursery. None of the babies there were on ventilators, and rarely would a baby there be on CPAP. Oxygen was still pretty common. 

We developed a whole new routine at PLC. We of course, scrubbed up upon entering, but now, we could take our baby and hold him whenever we wanted to. With the isolette still being there, we usually asked for help still, but it wasn't a big deal. The nurses looked after a lot more babies, so we didn't get the same attention that Foothills had. And, they were a lot more aggressive with feeding. I believe on the first day, they started Sebastian on bottles. This didn't go really well at first and Sebastian would tire quickly (and then get the rest by feeding tube), but they made him try anyhow. So, along with that he was able to work on the breast feeding as well. They were also quick to try him in a cot, but had to revert back to the isolette because Sebastian just wouldn't stay warm enough. They were also more willing to let us do stuff, like take his temperature, change his diaper, and even bath him, once he was keeping his temperature enough to have a bath. Oh to do real parent type stuff!! We were also shown all sorts of things and had a checklist to complete before we'd be allowed to take him home. 

We learned about the Mother's Day run from one of the nurses at Foothills, and knew it would be benefiting NICU, so of course I wanted to participate. We signed up to the 5km. Keep in mind I was still mending my broken leg, so even that was a lot. On Mother's Day morning, we stopped at PLC to visit. The nurses had made up little picture frames of the babies, with little Happy Mother's Day cards for all the moms. It was so sweet. The nurses at Foothills had dressed him up like an Easter bunny on Easter, and those little touches made all the difference to us parents!! Sort of like the tiny mini footprints they put in our journal. I will forever be grateful for those!! So, after a quick visit with Sebastian, we took the train to downtown and met up with a friend to do the run. Well, she had arranged to have a bunch of people do the walk with us. It was great. And my workplace had made a poster for Sebastian as well, with all kinds of nice wishes for him. And, everyone had shirts on that said "Sebastian the Super Trooper" complete with his birth weight and cartoons. It was so nice (thanks Heather and Cheryl!!). So we did the run, and stopped by the NICU grad tent afterwards, knowing that next year, we'd have Sebastian with us. 

Afterwards, we headed back to the hospital to see Sebastian again. He continued to grow and thrive at PLC. He got better and better with feeds, and had less and less episodes of apnea (stopping breathing),  and slowed heart rate. They did trials every week of room air to see how he did without oxygen. The first week he lasted 13 minutes, the next week, 2 hours, the week after 4 hours and the week after, well, he's still on room air, so I guess he's doing okay!! 

On June 9th, we were told we would be rooming in at the hospital for the weekend. Despite a couple more apneas than they like (only happened while he was eating), it was time to see if we could handle him on his own. Basically, they gave him too us, to stay, down the hall in a room, for the weekend. If he did okay, then he'd be leaving on the Sunday. The nurse came and checked on him 3 or 4 times a day. It was so exciting. Chris and Jeff brought us dinner on the Saturday, and hung out while we were learning to be parents. It was fun and surreal, and a little scary!! He was connected to no monitors. We were responsible for feeding him, changing him, and all that stuff. Well, Sunday morning, he went to rounds and the doctor discharged him. He was on a few medications, but nothing too serious. His eyes had gotten worse though, so we were checking them out every week now (a common side effect of prematurity). We were discharged with a whole sheet of instructions and a meeting planned for the very next day with a nurse at our house, from the Neonatal Transition Team. 

We packed him into his carseat, the nurses took a photo of us as a family, and we headed off. My eyes of course, were tearing up. It was so unbelievable that we were leaving the hospital this time, with our baby, and that we wouldn't be coming back in the morning!! We put him in the car (sleeping soundly), and headed home. It would be two weeks until he was back in the hospital, but more on that next time...

Well, the Mother's Day run is only one week away now. I hope you've enjoyed reading about Sebastian's NICU days. NICU truly did save his life and we will forever be grateful to the doctors and nurses who cared for him. If you want to make a donation, click here for Jeremy's page and click here for Sharon's page. All the money raised is used to purchase equipment for the NICU, including such things as transport incubators and specialized equipment that aids in screening for hearing issues and other things. Truly, it makes a difference, and we thank you for your support. Any donation of $20 gets a tax receipt, and if you donate $100 or more, we'll make you a homemade cheesecake of your choice!! We can also take cash or cheque donations if you prefer that, just let us know.

If you want to check out Sebastian's commercial for the run, click here!!

We'll be having a barbeque to celebrate everyone who supported us and we'll let you know more about that, after the run!!

Thursday, May 1, 2008

More times at Foothills...

Well, once we started holding Sebastian, he did fairly well. It was no walk in the park, but it wasn't quite as scary as the code blue and stuff like that. We got into quite the routine. I would hold Sebastian in the morning, Jeremy would hold Sebastian at night. He spent 2-3 hours a day at least, lying on our chests listening to our heartbeats, mostly just sleeping. It was great, and it was one of the few things we could do, as parents, that would help him grow. 

Feeding became the next big hurdle and day by day, he was fed a few more mls of breastmilk from a feeding tube that went from his mouth down to his stomach. One of the problems with preemies is that the ability to suck/swallow/breath doesn't really develop until around 35 weeks, so it's not so easy to feed them, except through a feeding tube. 

On April 18th, we did not go to the hospital at all. We were feeling a tiny bit like a cold was coming on, and the last thing in the world I ever wanted to do was make Sebastian or any of the other babies sick. They have enough challenges without adding a cold to the mix (not to mention the complete lack of an immune system). 

At this point, Sebastian was off oxygen all together. Of course that was too good to be true and soon enough he was back on the nasal prongs. He had fluid in his lungs, so the oxygen helped, along with some new drug as well. Because we were not feeling 100% either, we didn't hold Sebastian, to help make sure he didn't catch anything. So, we got back to holding and things improved again. The settings kept having to be upped over the next few days and there was talking of putting Sebastian back on the ventilator. Normally he would have gone to CPAP, but again, because of the bowel perforation, that was not an option. 

On April 24th, Sebastian turned one month old, and this was also the day that Sebastian weighed over a kilogram for the first time. He was born weighing 830grams, and it took a month to get to 1000grams. That's what happens when you are so sick I suppose!! Oh well, it was a good milestone. Despite that however, Sebastian was still having really laboured breathing. They did another xray to try and find out why.  

In order to increase the feeds, Sebastian's pick line had to be removed otherwise the settings on your IV wouldn't be low enough. This was a major accomplishment. With every wire and machine that was removed, Sebastian become more and more like a real baby!!

Oh, and I don't know if I ever mentioned before about transfusions. Sebastian had several blood transfusions. Another issue for preemies is that they don't produce their own red blood cells so well. He had been under the bili lights for jaundice but also required the transfusions. The importance of producing blood cells is crucial as the red blood cells are what carries oxygen to the rest of the body, and since oxygen is so key to life, you need enough cells to keep the sats up etc. I think I remember seeing blood products from 9 or 12 different sources in his chart. That is a lot of blood, and for a little itty bitty baby even. So, never underestimate the importance of donating blood. Which reminds me, I should probably book an appointment again sometime here!!

Anyhow, as Sebastian continued to improve, our stay at Foothills NICU was coming to a close. Sebastian would soon be transferred to a Special Care Nursery. It was just a question of availability, and which day they would actually send us. But more on that later....

We only have one more week until the Mother's Day run. Again, the money that is raised goes to buy equipment for the NICU units, so please, if you can, donate, any amount is great, and anything $20 or more gets you a tax receipt. If you donate $100 or more, we'll make you a cheesecake of your choice. Here is the link to donate online or if you prefer you can give us cash or a cheque.