Halloween and an Official Date

Halloween is exhausting. Not that it isn't totally, 100% fun filled exhaustion, but I really feel like I could sleep for a week after today.

We hadn't really thought we would be in Saskatoon for Halloween, and even then it was the furthest thing from our minds. Since we were told when Dominic was discharged from RUH that he would be going back to Edmonton in about two weeks, we thought we would be there this week. So last night I figured I should go get Rosalie a costume so that she could go trick-or-treating. I honestly thought it was a long shot to find anything on the night before Halloween, but luckily I was wrong. I stopped at Halloween Universe on 8th St in the Grosvenor Park Shopping Centre and found that they had OODLES of costumes there. So I decided to get one for Dominic also so that they could match. I figure by next year Rosalie will be telling us what she wants to be rather than us picking for her, so if I want to make them match, this is the last year I can guarantee it.

So here are my two little crayons...

I think they are pretty much the cutest ever.

This really was Rosalie's first year where she "got" the whole trick-or-treating thing. Last year I think she had fun, but was just doing what she was told. When we told her about trick-or-treating this afternoon she got really excited. And when she says "Trick-or-treat" it comes out more like "Tick-o-weet" and her "Happy Halloween" is more of a "Happy Ween!". So sweet.

~*~

In other news, we now have our official dates for heading back to Edmonton.

We were informed today that we have been booked for Dominic's Ultrasound, Echocardiogram, and his preadmission assessment on November 5th, and his cardiac cath is booked on the 6th. The cath isn't totally for sure yet, they have sorta "pencilled him in" pending the outcomes of his echo and ultrasound, but I remain optimistic. If they chose to schedule the cath instead of the surgery that has to mean that they think it's more likely, right? From the sounds of our timeline, it is promising that if the cath happens we may be home for the weekend. Drive up Tuesday, assessment day Wednesday, Cath Thursday, overnight observation, and then home Friday. Let's hope all goes that perfectly!!

"We're fine here. We're all fine here... now.. thank you... How are you?"

(Bonus points for naming the movie that the title quote is from... and we can also be best friends)

I realize it's been a while since I posted and it's actually not because my house has exploded or we've all died or something. Actually things are going pretty well, we have settled into a routine, but there are very few minutes in the day that are not spoken for by important procedures/events/whatevers that need to be done. In fact, writing this post is cutting into my sleep time, but I have a huge sense of guilt stemming from leaving everyone hanging on the last post, which was so negative and stress-filled, when things really are going ok.

Dominic is doing well, he really is basically just a regular baby if it weren't for all the meds he's on, and the feeding tube, and the heart surgery pending... Ok, so he's not a regular baby, but he acts like one. As far as we can tell he is on target for all of his early milestones: He's getting better at holding his head up, he will hold toys in his hands if you put them there (for very short periods of time), he makes eye contact if you are close enough... just regular baby things.

We still don't know when we are heading back to Edmonton yet, but it should be soon. We were told when we were discharged from RUH that we would be back at the Stollery in two weeks, and if they meant EXACTLY two weeks (which they didn't, but it's a reference point) we would be back there on Tuesday. I hope to know early this week, but who knows.

There will probably be more hiatuses in the future, so don't worry about me! I will post when I can, I promise... and if you are here for the book reviews... they may be a long time coming now, no time for such hobbies right now ;)

"I can't do this"

/\ /\ This is exactly the text I sent Roland at about 1:00 yesterday afternoon.

Yesterday was not as perfect as I had expected. I expected sunshine and rainbows, but instead I got dark clouds and rain (both in the form of tears and shattering dishes)

The truth is that taking care of Dominic is about 100 times harder than a regular infant, and about 50 times more than I expected. Don't get me wrong, all kids have their challenges, but today I realized I am not entirely equipped for Dominic's. I realized it's impossible to prep Dominic's feeds, feed him, pump to provide food for him, medicate him, hold him, feed Rosalie and keep her happy. There just isn't enough time. This resulted in all of us crying and two of us bleeding by noon yesterday. This is not the blissful homecoming that I wanted and expected.

I know that we just need a routine, and thing will get better with time, but part of me is so angry because this was not part of the plan. We planned to have 2 babies, but we planned two regular ones. If Dominic didn't have the 22q with a cleft lip and palate we would be fine. If he could just breastfeed that would free up SO much of my time. Without having to pump and/or prep feeds every 3 hours I would not be constantly on the run. Not to mention that I loved it with Rosalie and feel it was stolen from me with Dominic.

I was so mad yesterday, about all those advantages I lost with Dominic, but then I went to bottle feed him and he looked up at me with those big blue eyes and I cried. But this time it wasn't an angry, frustrated cry-- it was a guilt laden cry. How could I be angry and wish he was something else? He's my baby and always will be. I just have some adjusting to do.

Thankfully I have a very supportive family. My mom took off work today to help me, just having her there made so much of a difference. With two of us there, at a few points it felt like I was standing around doing nothing, but I know that if mom wasn't there to occupy Rosalie, she would have been coming to me for that attention, and that's where it starts to get difficult. I think that I am going to have to get used to the fact that I most likely will not get my naps in the afternoon. That may seem like a silly loss to most people, but I seriously need my afternoon naps or the sleepy demon comes out. Caffeine may be my best friend or my worst enemy, I guess the next few days will determine which. I also think I am going to have to accept that my job during the day is to just "keep the ship from sinking". I have to leave the laundry, dishes, clutter clean up, etc until Roland gets home in the evening. Food prep is even a questionable venture (why oh WHY did I think I needed to eat those freezer meals while going back and forth to the hospital instead of when Dominic came home?)

We just need to figure out this new family routine now, and things will get better. I need to learn the ins and outs and tricks of the trade with Dominic and his meds and feeds. Rosalie needs to adjust to not being the baby anymore (HA!), however I think she knows she will always be the princess though.

Home Sweet Home

Dominic is home for real this time, much to my surprise.

The last 2 days we were given passes for 8+ hours and they went great. It was fabulous to have those hours of family time to see how things went and realize that we can actually do this. Although it was a bit disappointing to bring him back each night, it was comforting to know that he was being monitored by someone that was awake and qualified to help him if he needed it. Not to mention it was great to get a good night's sleep (but I don't think I'm supposed to say or think things like that as a parent...)

I was told by the cardiologists last week that he likely wouldn't be able to go home until after their conference call with all of the cardiologists across western Canada (which happens every Tuesday by the way), so I was expecting to get the go ahead to go home on Wednesday morning. But if I have learned anything from Dominic's hospital experience, nothing is predictable. I should have known. This morning when I went to see him, I had Rosalie in tow. Up until this point we have tried to keep her hospital visits as short as her attention span , which if you know any two-year olds you know it's pretty short. So the plan was to clarify my day pass and then get the heck out of there, but when I arrived my nurse asked what my plan was, I told her, and was then informed that they won't be approving a day pass because he needed to be in hospital in order to be discharged. I was happy about this, but the situation was not ideal. I hadn't planned on doing anything at the hospital, and now I had to  (wanted to, really) feed him before heading out. Also, I wasn't ready at home. Things needed to be done that I was planning on doing after I returned Dominic to the hospital that night.

But all of the necessities were done before he got discharged, a new plan is in the works for Edmonton, and I am SO happy to have my boy home. 

He's Home!! (Well... Kinda...)

I've stopped posting things that may potentially happen because they never seem to pan out. I have been disappointed on this journey so many times that I don't see a point in getting everyone else's hopes up too. Although the kicker is that I always have the urge to blog and complain when they don't happen, but if I do that I might as well post about the initial hopeful moments along with the following disappointment. So silly...

So that's the reason for the bit of a hiatus. Nothing ever panned out like I had hoped, and there has been very little change while Dominic has been in the hospital here.

Recently, Dominic has had some difficulties with his picc and IV lines. They kept failing for one reason or another and attempts to replace them were often very difficult resulting in numerous pokes that didn't work out. After losing his picc from Edmonton, all attempts to replace it failed, losing the 3 IVs they eventually got in afterward it was decided to just cease his IV antibiotics 2 days early. I was torn about this. I worried that stopping the antibiotics early might effect the outcome. What if Dominic needed those last 2 days to permanently kick his infection? But being off the antibiotics would mean he didn't need an IV anymore so they could stop poking him trying to get one in AND not needing the IV meds for those 2 days meant that he might be able to come home 2 days earlier.

I begged and nagged the doctors to let him come home the following day but the cardiologists said they had passed care to the Pediatric unit so it was up to them, but the Pediatricians were saying that there was an order not to let him out on passes or discharge him until cardiology had been consulted. So I got the run around for a couple of days until I was able to talk to one of the cardiologists I was familiar with. We talked about going home and he wasn't comfortable with that because if the infection came back we would have to go to the ER to get readmitted. Frankly that didn't sound good to me either. So I threw out the idea of going out on all day passes and coming back once or twice a day to get his vitals checked. We compromised on day passes but he would come back in for observation on nights. And we wouldn't do that until his first blood culture came back negative after 48 hours. I was ok with that. 

So today the culture came back negative, but the pediatricians are still a bit nervous about him so it was decided he would get a 4 hour pass today and if it goes well, I can get an 8-10 hour one tomorrow.

So it was a pretty great day.

Still don't have a clue about his actual discharge date though...