August 28, 2012

Day 500

Oh day 500 of being at the hospital, how I hate you. It's sad really after 400 days you just learn to accept it and realize this is your life. Thankfully 7 more days until we go home!!!!

August 26, 2012

Day 498

  Hannah has extremely bad oral aversion caused by everything she has went through in the past year. The only thing that she was allowing into her mouth was her fingers and a soother.. not just any soother the hospital brand soother. Now she will only let her hands in! I brought her soother over to jeneece place with us a few days ago for got it here for 2 days and now she wont put it in her mouth and will puke if it even touches her lips.... Only up sides to this is that Hailey will be much easier to wean off and her teeth would form bad from sucking a soother for to long. Still sucks, I didn't know she could develope oral aversion that fast and at children's if I accidently put her soother in Hailey's stroller and took it home the hospital would just get her another one. 
  On a side note, I took both girls to the park yesterday all by my self. It wasn't so hard... Im sure at home it will be a little more stress full with Hannah with us 247 but I dont see what people were making such a big deal about. The stroller is HORRIABLE with hills... up and down ... down sucks because you have to hold on so tight because its a thousand pounds.. and up hill sucks for the obvious reason of it weighs 10 thousand pounds up hill. 















Hospital day 498

August 25, 2012

Twin time



I am loving being able to take Hannah to Jeneece place everyday! It's crazy watching her personality grow and what she is able to do change over the last week. She now crys the moment she sees me till I pick her up and once again when I put her down.. She is able to pull her self up to stand when sitting in my lap. She's allowed off the ventilator for 6ish hours a day now but twice a day... so 3 hours at a time! It's crazy to think about what Hannah will be like in even a month! I can't Imagen having two hailey's walking around.. 

1st "lets go"
2nd " k sis move over i'm getting in"
3rd " wahhh I don't fit!|


Hospital day 496

August 22, 2012

"da da"

The balloon is suppose to be inside of her
Hannah can make normal baby sounds!! Her first normal sound " da da", so proud of her!! She is coming off the ventilator twice a day but for 3 hours! Making so much progress. The official home date is September 4th!
 Yesterday I went into the picu to find that Hannah's gj tube had fallen out. The hospital's theory to why it fell out (since there is a balloon inflated inside her to hold it in) is that "someone" must have tried to put a med in the balloon port an deflated it. The hospital didn't have a spare one! What hospital doesn't have a spare gjtube(that aren't uncommon).. So instead of waiting a week for a new one to come in they took out the tube put in a catheter, cleaned it and put it back in today.









Looked into some more strollers today, Queen Alexandria is going to fund for my stroller! I'm thinking a bumble and bumble might be better then a BOB now. The under storage is double and it has 4 wheels instead of 3 which makes it a little bit more narrow because the front wheel on the bob is out farther. Both weigh the same and have the same max weight.




Hospital day 494

August 18, 2012

Second night rooming in

Well it's night #2 ...Tonight the oxygen monitor won't be beeping off at 91 all night because she's been put on oxygen for the night.
Every night at 8pm she gets a hand full of meds one being lasix witch is a diarrhetic. Because its a diarrhetic it makes you pee alot.. The reason she needs to pee more is because her pulmonary hypertension. She retains extra fluid which builds up in her lungs causing her to need more breathing supports.
If she is given the med at 8 she should have a full diaper by 12. Last night I changed the diaper at 1 and it was completely dry so I told the nurse and she said it was fine. But all day she hasn't been peeing much and now she needs oxygen so I'm starting to thing I'm right about her not peeing.

I definitely feel like I comfortable brining Hannah home!

On a different note... I realized that both Hannah and Hailey have a freckle/beauty mark on there left thigh! And the both have birth marks on the back of there heads.

Hospital day 489
Hannah is loving having me here. She's so peaceful, she fell asleep during trach tie change. So cute couldn't believe she was really asleep she went to see that easy.


Hospital day 489
Last night went great! Hannah's oxygen monitor did ring off quite a bit last night but it was ringing off at 91(should be between 92-100) so it was more of an annoyance then a worry alarm. I forgot to close her med port on the gtube at 2am so there was a big mess in her bed but besides that it was good.
It seems like Hannah doesn't like her glasses on in the morning. Usually she is good with keeping them on and just pulls them off when she's tired and wants Togo to bed, but not right now.

                                         Hospital day 489

August 17, 2012

Rooming in

They let me take both girls out yesterday! It was sooo nice. They loved their double stroller! I thought that since it was a tandem they would be board and wouldn't be able to see each other. Hailey was turned around facing hannah and hannah was reaching forward trying to grab her the hole walk. Its so nice watching them interact like normal twins.
The doctor only wanted me to take Hannah out for two hours so we went over to Jeneece place and played. The both fell asleep right when I was supose to start packing Hannah's equipment up, so I was bad and kept her a half hour longer.

Tonight is the first night of my 48hours of Hannah care(rooming in) in the hospital. So that means I'm in charge of everything all her feeds, meds, diapers, bath, trach tie changes. Her feeds run for 18 hours of the day with 6 hours off a day. I'm not sure how often the feed needs to be replaced but the machine will tell me when it's empty and wants a new feed. Hannah gets meds 4 times a day (easy to remember) 8am 2pm 8pm 2am.
So far everything's going good. The oxygen monitor has been beeping off at 91 a lot but 92-100 is where it should be. Nothing serious.


Hospital day 488

August 16, 2012

Two to

Twin cousins J&B visiting H&H























There's two to wash, there's two to dry, 

There's two who argue, there's two who cry. 
One's in the mud having a ball, 
The other holds a crayon, another marked wall. 
Some days seem endless, my patience grows thin. 
Why was I chosen to be a mother of twins
The answer comes clear at the end of the day, 
As I tuck them in bed and to myself I say, 
There's two to kiss, there's two to hug, 
And best of all, there's two to love. 

August 15, 2012

Mine and Hannah's outing

Ins't she a beauty :)
Took Hannah out on a walk all by my self!(No Hailey though) Yesterday I took both girls out with just my aunt and cousin and it was fine. Hannah is so low maintenance personality that the little bit of trach attention she needs it fine. Hailey on the other hand has high maintenance personality. Actually probably more of a medium then high she isnt that big of a terrorist and I'v met worse children/babies. I cant wait to take them both out! I emailed the people working on the stroller last night and they said that the stroller should be here today but so far no stroller. My hope is tomorrow take them both out!! :)

   
Loves the big tv and better shows







Hospital day 487

Mother Of Twins


Now is the time when things settle down,
that one has a chance to look around.
To take a deep breath, smile and say
today really wasn't such a bad day.
That nobody got hurt, nobody got sick,
and Mom's coffee table got just one new nick.
Which is truly amazing considering the fact,
God gave you two babies, you can't send one back.
Yes, you have twins, that you can't ignore, 
as you scrape the dried oatmeal off the floor. 
The pleasures are many, the troubles are few, 
remember you're a Mom doubly blessed with two. 
No matter how bad things really seem, 
one can take sour milk and turn it to cream. 

For the day will come when they're no longer small,
and you'll say to yourself it wasn't any trouble at all.
So remember when you have trouble with your little pair,
that they were a gift from God, so precious and rare.
Some people will loose, but you'll share the wins,
because you were made the Mother of Twins. 
-Author Unknown 

August 13, 2012

Pink little tike's car


I was able to take Hannah out for another walk yesterday!(with the nurses) I took them on a tour of Jeneece Place and let the girls play for a little in the play room. It was the cutest thing ever.. Hannah in the car while Hailey walked behind the car pushing it.
On the way back to the hospital there was people standing right infront of the entrance smoking... and usually that wouldn't bother me or I wouldn't even think about it. But because Hannah is trached and every little bit of smoke goes directly into her already damaged lungs I was mad. I actually felt like saying something and If the man wouldn't have move to the side quickly and sad sorry I probably would have.




Hospital day 486
1 year 3 months 29 days

August 11, 2012

Hannah's 1st walk!

The nurse let me take Hannah out for a walk today! The double stroller wasn't ready so I carried Hannah (with no cords!) a nurse pushed Hailey in her stroller and the other nurse pushed a stroller full of Hannah's equipment  We sat out in the sun/shade for an hour and a half.









Hospital day 484
1 year 3 months 27 days

August 10, 2012

Babies having babies



There's been a few things that I have been shoving to the back of my mind trying not to let it bother me for the last few days. The first thing is the hospital social worker. The staff at the hospital had a meeting about a discharge plan and then later that after noon the social worker comes up to me and wants to talk. She asks me if I think I can handle Hannah at home and how much stress it will be and if I have enough support.. seems like she's being nice. She informs me of some more options that I have (which I don't want to get into on here), while still being really nice and friendly. Then she throws out a comment " Because your still a baby your self" . Go eff yourself.  When is it ever the right time to tell a mother that they are still a freaking baby?  Because the last time I check babies couldn't have babies. She also commented on how im "21" actually im 22 and in less then 3 months ill be 23, thanks. 
The second thing is.. As I said before I applied for help fill a dream to help fund a van... They called me and said they don't fund vans (just there policy) and that If I got a doctor to email them saying I'm not asking for a van I need assistance they would get a check out to me right away... That was 2 weeks ago. 
I asked the doctor on that week practically every day if he had emailed them and he kept saying oh I'll go do that now.. Then he said I just want to make sure I don't screw it up for you... So I'm like ok this guys week is almost over but the girl doctor who originally signed/filled out the forms will understand and do it. So I find/borrow the money buy the van Iv been looking at for weeks because it I perfect... Low KM, cheap(ish), stow and go... perfect for what I need and reliable for the amount of times were going to have to come back to Victoria. I only got $1500 for my car because it was previously and ICBC write off. Not looking  for all the money back any little bit helps. 
So then Yesterday after the doctor told me the day before that yup she would email help fill a dream no problem. She tells me well I emailed them asking what all the fund for that way you don't waste my 1 use with them. Tells me that I will have to talk to talk it over with the social worker who just recently told me I was still a baby.  So we talk and she says how it takes like 5 charity's to fund for a van and the child needs to be in a wheel chair... ok I didn't re-ask for funding for a van Im asking for assistance with one. Then she tells me that all the charity's work together and that you can only receive $3000 a month so I wouldn't qualify.. um that's funny.. My stay at Jeneece place is under $1000 and im not receiving $2000 a month on top of my stay.

I'm done with people that "want to help but really just mean they don't think I am capable of handing my daughter. 

Hospital day 483
1 year 3 months 26 days

Parenting After Separation Course

In BC and other provinces in Canada some court's make you take a course called "Parenting after separation" before they will set a court date. Both places I wanted to have court moved to you need to have the course completed.

  • Abbotsford
  • Campbell River
  • Chilliwack
  • Courtenay
  • Kamloops
  • Kelowna
  • Nanaimo
  • New Westminster
  • North Vancouver
  • Penticton
  • Port Coquitlam
  • Prince George
  • Richmond
  • Surrey
  • Vancouver (Robson Square)
  • Vernon
  • Victoria
All make you attend the course.
Go to http://parenting.familieschange.ca to do the course online
(note some courts may only accept you going to the class)

I've been putting it off for months because I don't have time to go in for a 3 hour course but the lady at the court house told me they now offer it online. The course was really help full! It isnt just about how to deal with separation when kids are involved it also informs you of other steps you can take besides going to court. If the girls were older it would have been alot more helpful but for parents with older kids I strongly recommend it! Even just watching the parenting games videos!

August 09, 2012

Hannah's Day Schedule

6:00-7:00 am  Wakes up on her own, diaper change and possible suction needed.

6:00am   Feed should be finishing around this time. When finished rinse feeding bag and run water through tubing (or replace the bag if its time for a new one)

Feed off from 6:00-9:00( flexible ) for play time or bath and trach ties/trach change

8:00-9:00 am Medications (if feed is starting give before starting the feed)

  • Ventolin(blue puffer) 2 puffs with spacer
  • Flovent(orange puffer) 1 puff with spacer
             5ml flush before meds
  • Viargra 6.4mls (heart med)
  • Lasix 0.8mls (fluid retention med)
             5ml flush after meds

Naps around 9:00-10:00am for an hour

Play time after nap

Feed ON from 12:00-3:00pm
Feed OFF from 3:00-6pm

After noon nap starts around 1:00pm

2:00pm Medications

            5ml flush before med
  • Viagra 6.4mls (heart medication)
             5ml flush after med

2:00-600pm wakes up from nap, play time.  May nap once more.

7:00pm start getting ready for bed, put into jammies, read a story. 

8:00pm Medications:

          5ml flush before
  • Ventolin(blue puffer) 2 puffs
  • Flovent(orange puffer) 1 puff
  • Viagra (heart med) 6.4mls
  • omeprazole (stomach acid med) 4mls
  • lasix (water retention med) 0.8ml
          5ml flush after

8:00pm Lights out, start feed that runs untill 6:00am

Hannah's allowed off:
  • feed for 6 hrs a day
  • ventilator every 4 hours(while awake) for an hour
  • Humidifier all day

Hospital day 482
1 year  3 months 25 days

Equipment list to take Hannah on a walk

A list of everything needed to bring Hannah(& Hailey) on a trip out of the house/hospital:

- Ventilator (weight 15lbs)
- Suction machine (weight 9.6lbs)
- Emergency bag
(will go over everything in this bag later)

- Feeding pump
(Comes in a black backpack a little smaller then the emergency bag)
- Oxygen monitor
(Different from one in the pic and bigger)

-Lunch bag with freezer packs for feeds and medications
- Diaper bag 

All the equitment was estimated to weigh around 25lbs!

______________________________________________________________________

Today I went and looked at how they are going to modify the graco stroller. I realized there is just too much stuff to put on that stroller and to much that needs to be changed. It would be way bigger of a hassle taking Hannah out of the house that I probably wouldn't unless I absoulty had to.


A feeding pump B suction machine C ventilator D Emergency bag E Lunch bag F oxygen monitor.. And I would carry the diaper bag

Or if I got a bob it would look something like this..

A Ventilator B Feeding pump C Suction machine D Emergency bag E Lunch bag F Oxygen monitor.. carrying the diaper bag

Not only does it look nicer.. It would be easier to push and WAY better access for everything!

Hospital day 482

August 08, 2012

Passy-Muir Valve Trial

Hannah tired out the Passy Muir valve for the first time today!! She didn't got to go on long the RT wasn't able to come untill the last ten minutes she was off the ventilator. The one we tired today was PMV 007(Aqua color) because it is one of the few they make that works on and off the ventilator!!
How it works is; instead of Hannah breathing in and out of the trach tube, she breaths in the trach tube and the valve stops her from breathing out the same hole(1 way valve) forcing her to breath out of her mouth(making her also be able to talk!). The benefits of use a Passy Muir valve are: Voice/speech production, improved swallowing, secretion management, oxygenation, restores positive airway pressure, in-line ventilator use & interchangeable, weaning off trach and quality of life.
Hannah was a little scared at first but then she warmed up to it talked a little bit but even after we took it off I noticed her making more sounds then she had been. It was sooo nice being able to hear her cough out of her mouth.

Passy-Muir Valve benefits video

How Passy-Muir Valve works with ventilators




Hospital day 481
1 year 3 months 24 days

August 07, 2012

R.I.P

Happy Birthday Dad <3
You would have been 48
It's sad some years would be so busy I would forget your birthday
 but now that your gone...
 I wont ever miss it.