My munchkin has been having a lot of troubles with her belly lately. She's bloated and constipated and very uncomfortable so we're doing a whole "reset". For the next 24 hours she'll be getting her nutrition from an IV soloution and once they start her back on milk the calories will be reduced from 24 to 22, so that should ease digestion. If the 22 calories doesn't seem to help they'll start her on a hypoallergenic milk in case she's lactose intolerant.

They're removing morphine, versed and ketamine (all cause constipation) and replacing it with precedex. It's more convenient to have 1 sedative and it helps with withdrawal symptoms. That's why they're able to get rid of the other 3 so quickly.

The ergo therapist and physiotherapist brought in a new chair for Katie to sit in today. Lying down all of the time also doesn't help her to poop so we're trying everything we can to help her out. Having a giant tummy push up against your lungs doesn't make it easy to breathe.

Sometimes when you're in the hospital for so many hours you feel like you need to take a break and get away from all of the chaos. After an hour or so of living a "normal life" our hearts feel very,very heavy. It's hard to watch everyone around us living what seems like a completely normal life. You see other moms shopping and their babies are with them instead of lying in a hospital bed attached to tubes and wires. I would never wish this on anyone else but sometimes you just stand there and think... Why us? Why her? Family was already the most important thing to us and we're the ones who have to learn that lesson? It's especially hard to see parents not treating their children properly. They don't know how good they have it.

On the Night You Were Born

Katie is doing really well. They took her off of isolation this morning since two tests in a row came back negative for the virus. At the moment we're still in our own room but we'll probably move back to the 4 person room later today. They've begun to lower the ventilator settings and successfully weened her of of the nitric oxide machine so we're making progress.

Lately she's showing a lot of signs of teething. She's drooling none stop and gnawing on everything so we're expecting some sparkling whites soon!

I'm still having a lot of difficulties getting this thing to post pictures. Usually it wouldn't be a big deal to write on the iPad and post pictures once I get home from our laptop but the laptop hasn't been connecting to the Internet. Ahh, technology.

One of the books that I've been reading to Katelyn since she was in her incubator is "On the Night You Were Born" by Nancy Tillman. It's a New York Times bestseller so I'm sure most new parents have heard about it. I read it every single night and every single night my eyes fill with tears as I read the first page to my daughter. The words are true about every single baby in the world but her dramatic entrance into this world makes it even more special.


On the night you were born,
the moon smiled with such wonder
that the stars peeked in to see you
and the night wind whispered,
"Life will never be the same."

Because there had never been anyone like you...
ever in the world.


I really love this book, the words flow together really well and it's fun to read.

Visits

So it took talking to a doctor to find out that a cold and the flu are the same thing. I Knew the two were viruses but I always thought a cold was a lesser version of the flu. That's why when Katie's test results came back Positive for parainfluenza 1 I was getting confused because some nurses were telling me that it was just a little cold and others were saying that it was the flu and that if we had it we'd be in bed for 2 days.

When we had our biweekly meeting with Katelyn's permanent doctor on Tuesday he told us that often when kids get this virus they get really sick so shes doing really well considering. With a smile on his face he said that Katelyn surprises them.She certainly does! She's had us shaking in our boots more times than I can count. There have been multiple times this winter that doctors have come up to us and told us that they were unsure if she'd make it through the night... but sure enough they come back in the morning and not only is she still alive but she's improved dramatically.

Since she cant have an operation while she has a virus were planning on doing the trach the second week of March. I find
http://www.tracheostomy.com/ is a really good site to explain more about trachs. Knowledge makes things a lot less scary.

These past few days have been so great for visitors. We've made some really good friends at the hospital and they've all been back for appointments lately so they've come to visit us and Katie. All of our new friends have met her but none of our old friends and alot of family still haven't. We're allowed visitors every single day and it's really fun for us to show her off so come and visit!

I'm having a difficult time uploading pictures from my iPad onto the blog and my laptop isn't working so I'll try to get that sorted out soon.

Yay for 3G!

For the past month or two I've been doing a pretty bad job at updating this blog. I get up in the morning, eat breakfast, drive to the hospital, sit with Katie for 12 hours then come home and fall asleep. Today Daniel and I decided to spoil ourselves by buying an iPad. We got 3G so we can access the Internet anytime, anywhere... which means that I can update this blog while sitting next to my sleeping baby. I'm not promising to post every single day but expect updates at least a couple of times a week from now on.

Katelyn turned 7 months old yesterday and is celebrating with a cold. She was having a rough couple of days but is doing better now. They moved her into her own room to protect the other kids and she's been taking advantage of the peace and quiet by getting some much needed rest.

They had been planning a trach at the beginning of this week but it's going to be put on hold due to her cold.

I find things are much better around the hospital since my last post. Maybe having a cold was making me more negative than usual or maybe talking about my frustrations made me feel better.. Who knows? All that matters is that I'm back to my happy optimistic self. Being a grump is no fun!

Pictures

I'm home sick with a cold while Katie is having a visit with her grandma and auntie so I'm finally making the time to update and post a good bunch of photos.

 The past few weeks have been filled with many ups and downs. One day she's at 35% oxygen doing great then all of a sudden she spiked up to 100% oxygen without anyone really knowing why. They isolated a bug that was resistant to the antibiotics she was on so they switched up the antibiotics and restarted her on steroids to reduce inflammation and she's been doing much better since. If everything stays stable like this, the plan is to put in a trach in the next 2 weeks.

I've been very unimpressed with the pediatric intensive care unit at Ste-Justine's. I'm grateful that they're keeping my baby girl alive and that they're more relaxed with visitors than neonatology was but for the most part I find that they treat parents like shit. Katelyn is in a room with 3 other kids. When the doctors come to do their rounds we have to leave the room. The time of day varies and has taken up to 2 hours to do rounds. It's absolutely ridiculous. If we have questions for the doctors we have to pass on the message through a nurse, who most of the time, doesn't pass along the message properly.They prescribe things without telling us WHY and they're often rude about asking us to leave the room. I go to the hospital to see my daughter and do not think it's humane to ask us to leave the room. I've brought up these concerns to so many people and they all tell me that my reaction is normal and that it'll get better when they move to the new unit. I'm glad it'll change for future parents but how is that supposed to help me now? Why the hell do I have to leave my daughter when she's awake so that she's left to look up at the ceiling wondering why her parents are abandoning her? Then we come in and she's either being ignored while her nurse is chitchatting or they don't leave her alone while she's trying to rest.

I feel like the only way it's going to change is when one of the people who made up the famous "policy" has to spend weeks with their child in intensive care. Then maybe someone would understand how unfair it is to punish the people with the sickest kids in the hospital.

We also have to leave the room for 15 minutes at 3:30 for nurses shift change. Katelyn hadn't slept at all the night before last and all of yesterday. She finally fell asleep in Daniel's arms and an hour later he was forced to put her back into bed, which woke her up and  pissed her off then leave for 15 minutes. When we came back in the new nurse had done everything that we usually do (diaper change, temperature, change the saturometer.) I was not pleased. So not pleased that we talked to the head nurse and told them that what they're doing is not in Katelyn's best interest. I don't know if anything will change but they need to know that we're not pleased AT ALL with them. In fact, if nothing changes, when Katelyn gets more stable we've been thinking about transferring to another hospital...one that actually values family. We intended to donate big sums of money to Ste Justine's for the rest of our life but we may just donate to neonatology/ICUs/lung diseases in general and not to that specific hospital. I do not support people abusing their power.  In my opinion, if the doctors and nurses want privacy, they can do their rounds elsewhere and leave the 4 sets of parents to stay with their children.


Deep breath! Ahh, okay, back to my precious, beautiful baby girl. She now weighs 14 lbs. She's finally met all 3 of Dan's sisters and both of my brothers. She laughed for the first time a little over a week ago. I was tickling her feet and she started giggling. Daniel jumped up and thought that she was seizing. Then he got to her face and saw the huge, gorgeous toothless smile. Ahh,we love her so much! :)

Well, enjoy the long overdue pictures!

Munchkin is so big that she barely fits in her swing!

She had her hand around Sophie's neck for hours and hours

Auntie Chrissy's first time meeting Katie

Auntie Cynthia and Katie

Auntie Michou's first time meeting Katie

Go read the Lorax... and stop cutting down all of our trees!

Everytime we'd move her she'd find her way back to this position

Movie Star

Katelyn made her film debut yesterday. They were filming a video about what an inhalo/respiratory therapist's job consists of for people who are interested in the profession and Katie played the role of the intubated baby.

There have been many ups and downs over the past little while and I've been neglecting this blog so I apologize for not keeping you updated.

I have many pictures to post but I'll get to that when I find a bit more time. For now I'll just post 2 from last night so you can get an idea how big munchkin is getting.