Monday, May 26, 2014

Another Year Gone by

Looking at our Blog I realized that I haven't updated in just about a year. Time flies by and we have been enjoying our time together as a family.  For those who don't know, we are expecting again and found out a few weeks ago that we are expecting our third girl in October.

Here are a few pics - just what I had on my ipad, of some cute things that have happened in the last year.

Here is a shot which depicts how much Lily loves Hannay. She loved being a big sister and likes to look out for Hannah.

Here is the photo with Santa at Christmats...Hannah didn't quite know what to think. Lily, as you can see, was super excited!

Here are some family photos:

I developed the basement and just finished it at the beginning of May. I made a little playroom for Lily under the stairs, where she now has her little kitchen set up. I also made the door to be a dutch door so she can have the top half open and take our order. She also has a little table set up with her chairs.

On valentines Day, I gave the girls a push-pop for a valentines, and Lily couldn't thank me enough! She must have said thank you a 100 times, and I was in her eyes the best Daddy in the whole entire world! It was a sticky mess, but the $2 was well worth all the hugs and kisses from my girls.

Here is Lily snuggling Hannah as Hannah drinks her morning bottle. Hannah loves to lay on her elephant chair to drink her bottle everytime.

Friday, June 28, 2013

The hospital stay that will never end!

Monday we left Edmonton!!! Lily was taken by ambulance to the airport and flown down to Calgary while I followed with the van.  I arrived about an hour after her, but Justin was there waiting for her to arrive which was nice.  We were so happy to be leaving, as we were expecting to only be in hospital for a day or two while they did the IV teaching.

Lily saying bye bye to Judy.  Lily got lots of treats and toys from Judy during her stay!

Lily had the most decorated window! (a few things had fallen off by this point!)

Getting ready for her ambulance ride!  She wasn't pleased once they had to harness her in!

We are still here and we aren't going anywhere until wednesday evening at the earliest.  To say I'm annoyed or disappointed is a huge understatement.   The hold up is that one of Lily's pic line ports (she has 2) has stopped working and their policy is to not send kids home if one line isn't working.  They tried twice unblocking it with special medications which did not work, and they don't know if there's a clot, gummed up with meds, or just lying up against a vessel.  Normally at this point they would just send you to get a new PICC line placed and you'd be on your way but they only have 1 Dr. on staff that does them.  1!  And he's on vacation.  So we have to sit here for an entire week doing nothing! What is so annoying about all of this is they are aware and recognize and agree they can't just have one person to do this stuff... but aside from that she is getting the exact same treatment in hospital as she is getting out of hospital so any risk would be exactly the same in or out.   All they're doing for her is hooking up her medications 4 times a day.  SOOOOO LAME I just want out of here!!!! And to top it off the hospital is totally short of beds right now so here we sit wasting space doing something that could be done exactly the same at home.   I had to have a mini melt down yesterday.   And I'll probably have another every day until I get out of here.   I'm just so tired of it I'm mad.   I'm mad that I can't take care of Hannah and that she probably has no clue who I even am.  It's been almost 2 months since I've taken care of her like a full time mother.   That is 1/3 of her life!

 I know I shouldn't be feeling sorry for myself, there are a lot of other people and kids in way worse situations. But I am throwing myself a pity party for a few days until further notice haha.  I'll get out of here for a bit over the weekend to hang out with Hannah so that's good...

I never thought I'd say it but I wish we were still in Edmonton.   At least there we knew all the staff and there was an awesome play program and things for Lily to do..  The play room on our floor has been closed the last two days so we went to upstairs play room only to be told we can't play there b/c she's not from that floor.. I guess a few months ago they had some outbreak in this unit.. awesome.   So there's not much to do... we watch a lot of t.v and movies and I've brought her some crafts to do so she is plenty happy...

I jokingly asked the dr.s if I could just drive her up to edmonton to get a PICC line placed... (I was being somewhat serious) Like really... at least then we'd be out of hospital almost a week sooner.. it's like people don't care about health care cost wastage... maybe I'm just really aware because we use up so much??  And she has 6 hour windows between meds which gives lots of time to get there! I realize there's all kinds of policies and that's what prevents it but it seems silly to me.... I'm just desperate to get out of here... and plus I don't want her catching something from kids that are actually sick...    This morning she had a low grade fever. awesome.   hopefully it's nothing.. ugh I feel like I'm in jail.

Sorry this post isn't very upbeat or positive...:(  Her incision looks really good according to Plastics, they're happy with how it's healed and it's not infected.. so that's good.    And she did an awesome job this morning when I told her I had to poke her finger to check her INR.

We were able to get "unhooked" between one dose today so we could get outside and enjoy the sunshine.  We had a picnic and went to the park! It was soooooo hot out... didn't help all I had to wear was a sweater and jeans... haha

Monday, June 24, 2013

quick update!

okay update as short as I can make it...

Wound vac came off friday! (which meant we could be transfered, yahoo!!! except Calgary is now under water and all transfers were cancelled for a minimum of 72 hours...)

Because of the delay I had a bad weekend of just feeling depressed, frustrated and trapped like we'd never get out of here!  I am now in a better place mentally but still very disappointed we can't leave.  the only reason she needs to be transferred is so I can be taught how to do her IV antibiotics in calgary.  The frustrating thing is that it is the same procedure here as in calgary, but I have to be taught in Calgary because they will be following me.  So we just sit and wait and waste tax $$ staying in hospital when really they could do my teaching here and then let us go straight home instead of flying or driving her in an ambulance down to calgary.

We were able to go out on day passes a few times over the weekend which was nice! She hadn't been outside in over a month!  She insisted on needing her sunglasses at all times! haha

On thursday I had a visit from a friend from home which is always nice!!  Nice to see familiar faces! And she brought me a bunch of care packages and cards and sweet messages from friends back home with was so so nice!

Wednesday, June 19, 2013

Hannah is 6 months old!

My sweet little Hannah is 6 months old today!!! I have no idea how this has happened already!!

It makes me sad to be honest.  I feel like I've missed out on a lot of her short life so far :(  The first little while is a blur after she was born and then once feb hit and we had a date for Lily's surgery I think I was just so focused on cherishing every moment with Lily that Hannah  just kind of tagged along... not that little babies can really do much more than that anyways!  And the fact that Hannah was not a cuddler didn't help :( she much preferred to be put to bed in her crib than hang out in my arms going to sleep.. I really missed that.  Lily was completely the opposite so that's all I have to compare Hannah to. I'm trying not to be too hard on myself... but I'm still kind of bummed out.  Hopefully I can make up for it in the next 6 months!!

While my mom was out helping me she was able to force Hannah to go to sleep in arms.  So since then I've been able to have a few snuggly naps with her which really lift my spirits.  I'm looking forward to getting out of here and being able to spend a lot more time with her!!! Because really right now I'm lucky to spend a couple waking hours with her a day.. Sad!!!

She is so happy.  She LOVES to jump in her jolly jumper.  Right now she loves making lots of sounds and chomping away on her tongue.  She also loves to look at herself in the mirror.  And today I happened to see her do her first roll!! I was soo excited that I didn't miss it!! I was sooo close to catching it on camera (not video) as I was pulling out the camera to grab a few shots of her on her half birthday!

Lily had her chest tube taken out today and handled it like a pro! ..... cause at this point she really is.. haha

They changed her wound vac dressing today and I literally couldn't believe my eyes.   I was astonished.  The progress that the incision has made in 2 days is almost unbelievable.. the wound vac specialist was surprised too as were all the nurses that were in the room when they did it.   I wouldnt' have believed it was only 2 days if I wasn't there when it was done.  It looks like it has had 2 or 3 weeks of healing!  This thing is amazing!  And I know all the prayers definitely are helping her to heal fast!

On friday they will change the dressing again and if the middle portion looks like the top portion then they won't have to put it back on and then we can start talking transfers to calgary!!!!!! woot woot!!   They think well only be at Alberta Children's for like 2 days... If the dressing goes back on then they'll evaluate monday...  the end is near!!!!!!!!!!!! Can you tell I'm excited?

Tonight was bingo night at the beach and Lily had lots of fun.  She wanted to play with her prize right away.. she was so cute feeding and holding her horsey like a baby haha she is hilarious.   Everyone here is in love with her and her fun personality!

Grandma Gibb waiving to Lily from the glass elevators!! 

Lily can see them from her new room!! Pretty cool view!  Every now and then some unsuspecting passengers get a wave from a pretty cute little girl and always wave back!

Tuesday, June 18, 2013

Game plan

Lily had another great day! She was full of energy and smiles all day long!  She enjoyed going for rides in the push car to the healing garden and the beach where she made some crafts.

We still don't know when we will be going home but we did get a game plan....

1.  Surgical needs to clear Lily's wound.  They need to be 100% okay with the amount of healing that has taken place before they will let her leave the hospital, wether she'll go with or without the wound vac we don't know yet.  Surgical will come tomorrow to look at her dressing when it's changed and go from there.

2. She will probably have her most recent chest tube pulled tomorrow! Yay! one less thing to worry about!

3. She started warfarin the blood thinner that she needs to be on before she leaves the hospital, now that she is eating well they can give it to her.  Another step in the right direction!  She will need to have her blood tested very regularly at first every few days at least... :( lots of pokes.  I will go home with a monitor so I can do it from home so we don't need to go to the lab every couple of days.

4.  When surgical does decide her wound is healed enough to leave we will be transported to children's hospital in Calgary.  They need to teach me how to give her IV antibiotics to her through her pic line.  She will remain on those for 6 weeks because her infection reached bone.  So I hope she's only in there a few days.

Lily's chest x-ray monday again showed no signs of fluid accumulation!!!! YAY I think we might be out of the woods for the chylothorax! (I knocked on wood just in case!)

Lily has been doing a lot of puzzles while in hospital.   I've been so impressed at her ability to do them! I got her a couple new puzzles the other day and she did them entirely by herself!!!  I'm totally bragging here but I think she's soooo smart!! She did one tonight in just minutes! Crazy! (or maybe that's totally normal and I am unaware! haha)

Hannah had fun riding like this through the west ed mall today with Grandma!

Best we could get! 

Sunday, June 16, 2013

A great weekend!

Lily had a great weekend!!  We are still in the ICE room (intermediate care environment).   Which means there is a greater nurse to patient ratio.  The downside is that she isn't able to just get up and go as she pleases, so we can't go out for walks to the healing garden or the beach.   Tonight we did get her up for a short walk which the nurse had to come on, we walked to get a popsicle! mmmm she was pretty excited to get up for that walk.  Hopefully monday we can leave this room so she can get back to taking her walks and playing at the beach.
Laughing at Toopy and Beenu? I don't know how you spell those names!

On saturday I went out and got some supplies for her to make Justin a special Father's day craft.  She spent probably two hours working on it, it was so cute!  And today Justin proudly wore it around the hospital and to church, he even got a shout out from the pulpit recognizing the handiwork ;)

These girls are too cute! They sure love their daddy!! 

On friday I was finally able to wash Lily's hair!  It was gross! It had not been washed since June 21! HAHA I'm dying.. that is sooo gross but for a good two weeks we weren't allowed.. and then once we were allowed to she threw such fits I thought it wasn't worth the fight and getting her so upset when she has so much else to deal with.  I would just spray it all over with yummy detangler and then do her hair.   It was sooo nice to get it clean and put them in some fresh pig tails! She even let me wash it again today!  We had to get creative to figure out a way to get it washed without getting any dressings wet.  This is what we came up with... I had a bucket under her head.. worked great!
I don't think Lily shared the excitement that I felt...

I'm amazed how well Lily does getting her dressing changed considering what a large open wound it is.  I imagine it must be immensely painful for her but, she handles it so much better than a 2 year old!!  She likes to take off my mask for me when we're done.  
Working on some more crafts! 

I have a new respect for the term "security blanket"  after the surgery a few weeks ago she liked to have a blanket up to her neck most of the times but didn't freak out if I took it off to change her diaper etc... she would just say she was cold which was code for I want my blanket back on me covering my chest. However, after this last surgery she doesn't ever want the blanket off her!  I tried to change her bum and she was freaking out, so I said I would get something for her and got her a pillow case to cover her chest.  Once I give it to her she says "thank you, thank you mom, thank you so much" and lets out a big sigh of relief.

Her spirits have been so high all weekend long it's like the old Lily is back!!! I'm really amazed actually.  Just tells me that infection was really making her feel awful for so long!!!! But she had just had a major surgery so we all thought that's just how she was recovering! I thought she had had good days before, but these are fantastic days of giggling, smiling, playing, joking and laughing!  (Until it's time to do a dressing change or get a needle)

I even was able to get a few good cuddles and naps in with Hannah this weekend which was really nice! She is such a good natured baby!!! Love my two sweeties!

Friday, June 14, 2013

The wound...

It is remarkable what one day will do.  Lily is doing so well!  She seems so much more herself today than she has in a long time, smiling and laughing and most importantly eating, and eating well at that.  I  haven't seen her eat this well since the first day she ate after her last surgery!  Hopefully this appetite keeps up, then we can get her off her blood thinner shots and go to something oral! 

I see how good she is looking and can't even begin to imagine how awful that infection was making her feel!  She has a morphine infusion again and they will probably start to ween it tomorrow.  It just sucks that this wasn't picked up before.  Unfortunately there were always reasons to be sore and uncomfortable and for different things to be showing up in bloodwork.  There was no reason to suspect there was an infection under there because her incision had healed soo nicely.

Today I was present for her dressing change and had been warned by my mother in law what to expect, as she was the one with her last night when it was done.  They did not close up the incision, instead they left it open and have two sutures placed about an inch and a half apart just to keep her skin somewhat closed.  So we are left with three 1-1.5inch openings and at some points look .5cm deep. At the moment they pack it with saline soaked sterile gauze twice a day.  I couldn't believe how well she did while they changed it. It obviously hurt and she whimpered but did not at all need to be restrained while it was done.  It was awful to see.  It is deep and well, just gross to be honest.  They are going to set her up with a wound vac on Monday.  That is basically a vacuum sealed dressing that sucks out any grossness with a suction it has a little canister that she can clip onto her pants.  They say it heals quicker that way.

This area will close from the bottom surface of tissue up to the top so will obviously not leave her with the nice scar line like she had before.  And here I was a little bummed that they had not followed the same incision as her last surgery so she had two lines.  This scar will heal and look really bad, the dr.s said in a few years you can get cosmetic surgery to fix it.  I absolutely will not put her through that.  I plan on raising her to be proud of those scars, all of them, and if she wants to do something about it when she is old enough to make that decision for herself, then that is fine.  I never try and cover up her scars because I don't want her to ever think that she should have to, or ever feel embarrassed of them.  

Hopefully we have an uneventful weekend!