So Many Reasons To Smile!

Pictures

2012-02-09T22:04:00.000-05:00

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

2012-02-08T08:51:00.000-05:00

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.

2012-02-06T08:03:00.000-05:00

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.

2012-01-23T00:29:00.001-05:00

Daniel and I both got to hold Katie today. It's been a month to the day since he last held her and 2 weeks since I have been able to so it was wonderful for all 3 of us! :)

We're finally able to put her back in pyjamas and the nurse put her hair up in her very first ponytail today! :)

6 months!

2012-01-19T22:38:00.000-05:00

Katie is 6 months old today! :)

Smiles!

2012-01-12T22:08:00.000-05:00

The news of the day is that I got to hold Katie for the 1st time since December 23rd. It felt so nice to have her in my arms. She was smiling like crazy and I was tearing up...it was great. Hopefully Daniel will get his turn tomorrow because it's been even longer since he's held her.
They lowered her ventilator settings once again (she started at 3.2 and is now down to 1.7)
so that's more good news!

There's just so much joy on her beautiful face!

2012-01-11T22:13:00.000-05:00

Everything is still great. :) Katie is growing like a weed lately. She's off of the N.O machine, her ventilator settings keep getting lowered and her oxygen and blood tests are good. She's met more of her family and has had plenty of visits from her old nurses and doctors from neonatology.

It won't let me turn the picture...but as you'll see below her leg now is the entire length of her body at birth!

6 months old

One of Katie's pivot nurses made this for her for Christmas :)

Her arms are super long!

Reading a bedtime story with daddy

2012-01-07T08:43:00.000-05:00

Our princess is doing amazing! :) They keep lowering the settings on her machine, her oxygen needs are in the 30s (the air we breathe is 21%) and her PC02s are in the 50's.

I just want to fall to my knees in gratitude and do a happy dance. :)

Anyway, here are some pictures of our monkey:

She loves loves loves Sophie the giraffe! Look how big Katie has gotten!

Quick Update

2012-01-04T22:03:00.001-05:00

Happy New Year everyone! May 2012 bring us all HEALTH and happiness!

No new pictures today since my memory cards are full but we'll be buying another one tomorrow.

Katelyn is down in pediatric intensive care and is doing amazing! On the day that she was transferred she was at 100% oxygen saturating between 75-85. One week later her oxygen is down to 40% saturating between 90-100.

In the past we had a lot of trouble weening Katie off of dexamethasone (a potent steroid with bad side effects) but she's officially off of it and is now on a physiological dose of hydro cortisone. When you're given steroids your body stops producing it's own so she's on a dose that her body should (and with time, will) produce.

Being in the PICU is a big change. Although we'll forever be grateful to the neonatology unit, it was time to move on. The NICU isn't equipped to deal with a 13lbs intubated baby. There was a point where she was at 100% oxygen saturating at 64% for a while and the doctors and inhalos just stood around her crib, shrugging their shoulders,not knowing what to do. Thank goodness someone had the brilliant idea to call one of the big doctors from the PICU who came up, made some changes to the machine and made everything better again.

We had some incredible nurses who we miss dearly and some that we're incredibly happy to never see again. The last days in neonatology... days where Katelyn was going through so much (reintubated, collapsed lung, infection on top of infection) is when a lot of people showed their true colours. Some people told us that she wasn't going to survive. Some people told us that this is just a little bump in the road. Whatever anyone said (or ever says for that matter) is just a reflection on themselves. I've been a much happier person since I've learned that. No one knows what anyone else is capable of. Especially when it comes to Katelyn.

I'm really enjoying the PICU. After 5 1/2 months we're FINALLY allowed to have visitors! Daniel's sister Cynthia met Katie 2 ago for the first time and my brother Brandon met her for the first time yesterday. Family is such an incredible part of healing so it makes me so incredibly happy that Katie can finally meet people that love her so much. :)

The Decision

2011-12-27T21:44:00.000-05:00

I haven't been making the time to write these blogs lately but I really want to keep everybody updated so I'm going to cram a lot of information in a short post.

Ultimately, the meeting with the doctors led to the decision that Katelyn will get a trach. This way her lungs can get the ventilation they need but she can still develop normally (be awake, move around, eat etc.) and come home with it. It sounds really scary but once we did some research we became much more at ease with the idea of a trach.

Before going through surgery and putting in the trach, they have to do a trial 30-60 day intubation to prove that mechanical ventilation works for her. They reintubated her on Thursday afternoon so we're on day 6 today. The good news is that since being reintubated her PC02 has gone way, way down. The not so good news is that since she's an older baby who is used to breathing on her own they have to sedate her and let her machine do the work. It took them a while to figure out the right doses because the kid is stronger than anyone I know and wasn't getting knocked out by big doses of sedatives.

Because she has to be sedated, they had to install a central line (an IV that goes right to the heart) for her to get her medications. One of the risks of a central line is a blood infection and of course shortly after reintubating her oxygen needs went to 100 and she began running a fever. After doing some tests it was confirmed that she has a blood infection and the beginnings of a urinary infection. Sometimes it feels like the kid just can't catch a break. She's been on antibiotics for the past 3 days and her oxygen is still fluctuating around 100. It's been a rough week and wasn't the way I was hoping to spend her first Christmas...but sometimes life throws you curve balls.

That's the "big news" of the week. There are all sorts of stories that I'll eventually share but I'll save that for another post. We appreciate everyone who keeps Katie and our family in their thoughts and prayers and will take all of the positive energy we can get! Thank you so much! My heart is warmed by all of the good in this world.

Katelyn's first Christmas. She's majorly sedated her. We were all shocked that she could even open her eyes.

Back to the mask

2011-12-21T22:08:00.000-05:00

On Sunday we noticed that Katie was having a tough time breathing. When the doctor came in to check up on her we asked if we could go back to C-pap to give her a bit of help. She decided to wait until after the blood test and sure enough the PC02 came back crazy high at 103. They stopped her feedings, put in an IV, did all sorts of blood tests, urine tests, a lung Xray and prescribed another blood gas test for later in the day. She quickly became her happy self again but her PC02 was still 95.
Since she was back to herself and the PC02 seemed to be on a downward trend, they were having a tough time figuring out what to do. The deciding factor was that the Xray showed that her lung was a bit more deflated than it should have been. The cure to that is the C-pap. There was always the possibility that it inflated on it's own when she let out a big cry or something but if we waited too long C-pap wouldn't work and we'd have to resort to intubation. So...she's now on C-pap. It looks different than the old mask because it's apparently "the Cadillac of C-paps" and is much more mobile than the other one.

I've been getting looks of sympathy everywhere and people seem to think I'm upset but I'm not. I don't see it as a step back. My daughter's lungs are getting the ventilation that they need and I'm grateful for that.

There's one doctor who's really, really special to us. We met for the first time when Katelyn was on the high frequency ventilator, at 100% oxygen and were worried sick. We asked to speak with a doctor and she was on call so she came to talk with us. Given those circumstances you wouldn't think that we'd leave a conversation with a doctor feeling optimistic and happy...but we did.

We only really saw her every once in awhile on nights and weekends yet she'd still ask us how Katelyn was doing when we'd cross paths. While all of the doctors we've had are amazing...most of them pay attention to the numbers and tests results, not remembering details like the baby's first name or who the parents are.

On Saturday I was having a coffee and reading in the parent's room when this doctor walked in and came to say hello and ask about Katie. I told her how much we missed having her as a doctor and she told me that she was back for a month starting Monday morning. First thing Monday morning she was in the room checking up on the babies when Dan turned to her and said "You know, we can have "pivot nurses, pivot N.As...can you be our pivot doctor?" I was expecting a chuckle but instead she told us that she was flattered and would love to. She just had to talk with the chief of neonatology to make sure it was okay.
A little while later she asked if there were any boss doctors that we had a special connection with. Dan joked "Why, are we creating a dream team?" She responded with a serious "yes". So Katelyn now has a dream team of doctors we loved who will follow her until she goes home. That was always one of the biggest stresses for us. Every 2 weeks the boss changes and every month the entire team changes so the plans were constantly changing and stressing us out.

We asked the doctor to be Kate's pivot doctor on Monday morning. On Monday afternoon she confirmed that she was allowed to do it and had created a little "dream team". On Tuesday we had a meeting about long term plans and what to do if shit hits the fan. She called for a respiratory specialist to come and examine Kate right after our meeting so he came up to see her today. She set up a meeting for tomorrow morning with all sorts of "boss neonatologists", pulmonary specialists, inhalation therapists, etc. They're going to put their brains together and figure out what to do. Today she was working on a power point presentation and went through Katie's files month by month so she's now completely up to date. She really cares and we feel it. She even stopped me in the hallways today to see if I was okay.

I'm really, really excited about all of this and am so grateful that Daniel had the guts to ask. Their big meeting is tomorrow morning (she planned for it to be before Christmas vacation) so I'll keep you updated with what's going on.

I have some pictures from when she was still in intermediate but I'll post them with the next post since I really need to get to bed. I'll just post a quick one of what her C-pap looks like.

Dancing with Daddy

2011-12-14T21:14:00.001-05:00

2011-12-12T21:20:00.001-05:00

I can't get over how big my little munchkin is getting! She weighed exactly 4400g tonight. That's 9lbs, 10 ounces! She's come such a long way! She's doing really great. :)

She just just woke up here.

These are our old neighbours and their daughter (born at 22 weeks) right before taking their baby girl home with them! We're so happy for them!!! Stole the picture from facebook. :)

I'm shampooing her head by the way...not just being creepy! lol

2011-12-09T22:32:00.001-05:00

I'll give quick little updates since I'm always too tired to write an actual blog.
We now have 4 pivot/permanent nurses. Katelyn has severe acid reflux and has been much happier since they began treating her for it. She weighs 4268g. Her physiotherapist said that she's improved dramatically since her first physio session. After 7 months our neighbours finally brought their baby girl home (I'm so happy for them!) so we took over their spot in the room. The ledge is bigger and fits the swing and Katie looooves her swing. The joy in her eyes is unbelievable.

Sleeping while sitting up in daddy's arms

Cuddling with mommy

New side of the room

This was actually my dress from when I was a baby

Sleeping Beauty

2011-12-05T21:29:00.000-05:00

Kate's first manicure

Filing down those nails so it doesn't hurt as bad when she pinches!

Lots of pictures

2011-12-03T22:08:00.000-05:00

I wish we got paid for the hours we spend at the hospital. 12-16 hours a day, 7 days a week. We'd be getting rich! We practically do the nurse's job but get less breaks (by choice of course) and no pay. That's love though. If we were allowed to eat in the room or sleep on a cot we'd probably never leave. Luckily Katie has been sleeping her nights fully so by the time we leave at 7-10pm she's asleep and only wakes up when we get there at 7am. It's like we're tucking her in and leaving her bedroom. Her bedroom just happens to be 20 minutes away from where we live at the moment.
No big news to report. Katelyn is doing well. All of the pictures you see here were taken last night and today. I kind of went picture crazy. :)

Reading "The Lion King"

Just like baby Simba

2011-12-01T23:14:00.001-05:00

Katelyn is doing well. A test came back showing that she had severe acid reflux so that certainly explains why she was irritable the last few days and it definitely didn't help her oxygen needs. I'll write more in a future post about what has been going on but in the meantime I'm just sharing a few cute pictures.

Holding onto her new rings.

We bought her a new mobile today. With a push of a button it plays classical music for like half an hour.. no more cranking every 30 seconds! Her crib is starting to look more like a playpen than anything...

Sitting on the side of the crib...getting kisses from daddy... so cute!

2011-11-30T22:07:00.000-05:00

As of tonight, Kate officially weighs 9lbs :)

They restarted her on steroids and warned that given the severity of the pulmonary broncho dysplasia, we'll probably be in the hospital for many, many more months. Maybe even past her 1st birthday. We don't want sympathy or negative energy, she does not need any of that. She needs good thoughts, energy, prayers and love going her way. Those lungs have to grow and continue to heal.

Slippers

Date Night

2011-11-27T23:18:00.000-05:00

I had the most relaxing weekend I've had in a long time. With the stress that we've been going through we decided to have a date night. After leaving the hospital we went to the Marriott Chateau Champlain on Saturday night and really enjoyed ourselves. We brought dinner from Baton Rouge back to the hotel (the way I see it, there's nothing special about going out to dinner... but it's really not everyday where you enjoy great food in a gorgeous room with a gorgeous view...at least not for me) then spent the evening swimming and enjoying the hot tub. We woke up this morning, had coffee and breakfast then went back down to the pool and hot tub. God it was relaxing. I need to make lots of money so I can go home at the end of a stressful day and relax in such a beautiful place.

Baby girl is in the hospital, just lost our beloved doggy ...life feels like it sucks sometimes but we keep each other going. :)

Our room. They modernised it since the last time we were there on our 1 year (dating) anniversary

Cherry coke in the wine glasses...

It took 4 pictures to get the entire view from our room. If I were any good with computers I'd put them together to make one big picture... but I'm not so I won't.

The Bell Centre

My goofy kid is doing great. Daniel's parents spent yesterday evening with her and my mom (and dad for a bit) spent todat with her. She got to bond with her grandparents while we relaxed.

Kangaroo time with daddy

Family picture... with half a Katie

Family picture #2... :)

Little Pincher

2011-11-24T20:12:00.000-05:00

You can't really see her thumb but the little munchkin is pinching the crap out of me!

2011-11-22T21:11:00.000-05:00

Like mother, like daughter.

I got peed on today. In the 2 seconds it took to take her naked self off of the scale and transfer Kate to the bathub she peed all over my arm, the floor and through the hospital gown onto my clothes.
She weighs 3905g today. That's almost 9lbs!

2011-11-21T23:11:00.000-05:00

I'm so bummed out. I miss my Lola more than I can ever begin to explain and the feelings of grief seem unbearable at times. I'm okay when I'm at the hospital with Katie but being at home is another story. There's an emptiness in our family and we can all feel it. Lola was more like our child than our dog. Yesterday I accidentally dropped a piece of food to the floor and Daniel and I both turned around to where Lola usually sits to see if she was coming to get it. We both immediately started balling our eyes out. It's going to take some time for things to feel alright again.

A couple of years ago after watching a horrific show about puppy mills and shelters (on Oprah of course) I turned to Daniel and said that one day, when we have lots of land and lots of money, I want to open a no kill dog shelter. Not the typical dog shelter with cages and depressing things...it'll be more like a little hotel for dogs while they wait to be adopted. When we do fulfill that dream, we're going to name it after Lola. I haven't worked out all of the kinks yet but we have many moons to figure it all out. We're going to hang on to Lola's ashes until we're living in our dream home, with lots of nature and bury them under a big beautiful tree. In the meantime we engraved the box with "Lola, Love you forever." I always will.

Now, onto my other beautiful girl. Katie is doing really, really well. Honestly, there isn't all that much to say except for that.
Daniel's parents got to hold her for the first time the other day so I'll post pictures of that when I learn how to re size them.
They had a bone specialist come and see her because they saw that she had a whole bunch of fractured ribs and shoulder bones that are now healed. The bone doctor told us that all of the fractures happened during one incident and that it was most likely while they were in emergency mode and trying to save her life. He said that her bones will get stronger after she's taken off of steroids but in the meantime we just have to be gentle.
I could go on and vent about the many examples of how the damn hospital doesn't respect her sleep...like waking her up at 3am to strip her naked and weigh her... but I won't because we've already complained to the person in charge and there are now notes to leave her the fuck alone while she's sleeping all over the place. Not as vulgar as that, but hopefully they still get the point.

I chopped off most of my hair today. It had been halfway back and is now at my shoulders. It feels nice and unlike the other stuff going on right now, is a welcome change in my life.

The kid is 1 month old adjusted age and is already standing up all the time!

Lola

2011-11-20T07:01:00.000-05:00

Lola passed away yesterday. She died at home, in her sleep and didn't suffer beforehand so we take comfort in that but our hearts are broken and probably will be for a long, long time. :(

Rest in peace baby girl.

2011-11-17T22:12:00.001-05:00

So much stress lately but I'm too exhausted to write everything all out. The gist of things is that Katelyn's PCO2 levels have been really high again these past few days and Lola (our doggy) hasn't been eating. They started Kate on antibiotics since a chest Xray showed that she might have a small infection in her lungs and put her back up to 6 litres. Clinically, Kate is fine. She's as feisty as ever, looks great, oxygen needs are in her normal range... everything but these damn PC02 levels. Since she's been at such high PC02 levels for so long her body handles it much better than yours or mine would...thank goodness. We started Lola on anti nausea medicine that had been prescribed by her vet in the spring (we completely forgot about refilling the prescription since Katie came alone and she kept eating) so we're really hoping that helps her want to eat and rebuild her strength. Please keep sending your good thoughts and prayers our way...we appreciate them all!

Muget Daddy

2011-11-15T20:45:00.001-05:00

We've only been in intermediate care for a couple of days and already someone asked to be Katie's permanent nurse. Unfortunately her 2 permanent nurses from intensive couldn't follow her to intermediate but both are adorable and come to check up on her whenever they get the chance.

For the past few weeks Kate had muget. I don't know what the english translation is but it's a white coating on her tongue. It's contagious and it seemed that whenever she looked at Dan she'd stick her tongue out so overtime we've picked up the habit of saying "muget daddy" every time she sticks her tongue out.

We swaddle her with her arms by her side but the little devil ALWAYS manages to get her arms out. Here they are peaking out from the blankets...

Cuddling with daddy

Kangarooing with daddy

My little Gremlin!