July 30, 2012

Age Discrimination.

I hate age discrimination.
You don't know me or what I am capable of, 22 is just numbers. I shouldn't be treated like a child because you happen to be double my age. If I were a 28-30 year old women do you think I would be CONSTANTLY being asked if I can "handle" Hannah and Hailey together alone. I highly doubt it.
I have raised a healthy and might I add happy baby girl while still going to the hospital day in and day out for the last 15 months. Not only did I go to the hospital I also dealt with a horrible break up with many social workers and court dates (criminal and family) and I did all of this with a smile on my face, not letting depression get to me.
Don't you dare question what I am capable of.




Hospital day 471

July 27, 2012

QA Newsletter

The Queen Alexandra Foundation came to Jeneece place today. Took one of my favourite pictures ever of my and Hailey and interviewed me for the Queen Alexandra foundation donors news letter.

On a side note.. I've been arguing with the doctors about what we should do with Hailey, Daycare no daycare, volunteers watch her ect. What I want is to have a few volunteers watch her over the next week or how ever long untill the double stroller is ready and im fully "trained". Then I want to start taking her for walks with a nurse, just a few times with a nurse. But what I would really like the plan to be is that I can bring Hannah to Jeneece place take her meds and equipment with me ALONE and bring her back to the hospital when needed or at night. I asked the doctor about this and he was very iffy on letting me go alone and questioned what if something happens to Hannah what would you do with Hailey? Well, what would I do at home? If you cant see your self ever being comfortable letting us go on a walk or go to jeneece place that is on hospital property not even 5 minute walk to the main entrance, why are you "planning" for us to go home?
I think it is a great idea. I would be forced to use all the home equipment(Feeding pump, ventilator, small travel humidifier I forgot the name of, home suction machine) . Plus I'll admit I have got really use to letting the nurses take care of Hannah, being at jeneece place would give me a chance to have no nurses around and have full mommy duty's.

Hannah's toy heaven 


                                                                                   Hospital day 469
1 year 3 months 13 days


July 26, 2012

Mommy time

I took a little bit of mommy time tonight. Skipped out on seeing Hannah quickly before she fell asleep to start making the girls matching TUTUS!!! Soo excited I only finished one tonight.






July 25, 2012

7 Things you didn't know about special needs parents, I found this link on facebook and loved it! Had to share.
  1. I am tired. Sooo tired of going to the hospital day in and day out
  2. I am jealous. Soo jealous of every set of healthy twins I see and every preemie I hear getting to go home after just a few months
  3. I feel alone. Partly because I am alone and will be stuck at home alone, but also because aside from the people I have met in the hospital NO ONE has any idea what its like to have a "sick" child or even just a premature one.
  4. I am scared. Scared about the risks of trached kids, scared for her development, scared for her heart condition, scared I wont be able to take care of her needs, scared for her future
  5. I have learned to hate the words retarded, short bus.
  6. I am human. I get sad and mad, I don't like living at a hospital, I like having time to do stuff for ME 
  7. I want to talk about my daughter but its hard. Maybe not to people I know or to type but to strangers

Hannah's new glasses!!!

bought 6 months apart

Hospital day 467
1 year 3 months 10 days

July 24, 2012

Oral Motor Stimulation

As you know Hannah doesn't feed from a bottle and doesn't any foods orally, she LOVES her soother and hands but nothing else. The OT at the hospital wants to start working on oral stim with her no food but textures and toys. It's important to maintain oral motor skills for normal development of feeding, speech and basic things like being able to tolerate having her teeth brushed.

Considerations are:

  • Incorporate pleasant stimulation with daily play
  • May/will take along time for her to be alright with it
  • Baby's/Hannah's success is not a reflection of me/us but a reflection on where she is presently capable of 
Techniques for oral motor stimulation
  • Encourage hands and soothers in her mouth
  • Use different textures around the mouth area(cotton balls, terry cloth, soft toothbrush, soft toys)
  • Introduce exploratory toys with different textures and shapes. Toys with parts that protrude and can be stuck into the mouth (rattles teething toys ect
  • Massage/stroke all over her leg, arms, body, head and face gently with your hands or different fabrics(silk, sheepskin, flannel, cotton ect)  with even firm pressure.
  • Stroking/massaging around the mouth should be towards the mouth (down on the top lip, up on the bottom lip and in towards the sides)
  • Starting where she is comfortable and slowly building up to the point where she is not tolerating then step back slightly
  • When stress behaviour is observed the intensity of the stim should be lowered slightly. 
Ways to tell Hannah doesn't like what's happening
  • Pulling away with her head
  • Gagging
  • Wrecking(like shes about to vomit)
  • Coughing
  • Crying
  • Becoming pale or more red in the face
  • Becoming sweaty
  • Not making eye contact with you
Hospital day 466

July 20, 2012

Snicker Doodles

There is ALWAYS baking here!! Someones always making something tasty weather it be the volunteers, the staff or the guests. Yesterday they made Snicker doodles they were sooo tasty I have to share the recipe.




  • 1 1/2 cups sugar
  • 1 cup margarine or butter
  • 2 eggs
  • 2 3/4 cups all purpose flour
  • 2 tsp cream of tartar
  • 1 tsp baking soda
  • 2 tsps ground cinnamon 
  • 1/4 cup sugar
  1.  Heat over to 400'
  2. Mix 1 1/2 cup sugar, margarine and eggs in large bowl. Stir in flour, cream of tartar and baking soda.
  3. Shape dough into 1 1/4 inch balls. Roll in sugar/cinnamon mixture. Place 2 inches apart on greased cookie sheet.
  4. Bake 8-10 minutes or until set. Cool on wire rack
This favourite cookie is traditionally rolled in cinnamon/sugar before baking! 

Help fill a dream room

There is 10 rooms at Jeence place, all with different names. The names are all of big donors who helped fund Jeence place. Today I took the time to read what room we are in Help Fill A Dream Foundation, coincidence?
I faxed off my application yesterday and they called back later that day because they couldn't read the fax, so today we scanned it and emailed it to them. Hopefully since they called back so quickly they will get back to us quickly if they can or cant help us.
I love the hospital and the location of Jeneece place, the only thing I don't like is that the hospital always does Hannah's care with out me and calls to tell me not to come because she just fell a sleep. Ok, I get calling me to tell me she just fell asleep she needs her sleep. However if you never let me come when she is sleeping and Hailey is on a different schedule I will NEVER get to see my little Hannah!! The fact they don't wait for me to do her care drives me mental! If i'm not there before 10-10:30 they do it with out me. I even wrote a big sign saying



" Mom wants to do:

- Hannah's Bath
- Trach Ties   
-Trach Change


EVERY DAY!

here's how to reach her.."

There's no way the miss that sign and her trach ties and bath doesn't need to be done at 10:30! it can be done later in the day there is no reason they can't wait for me to come in. I do try and making it before 10:30 but there's some days  that it just isn't possible. Either Hailey was up all night or she was WAY to cranky to even change her diaper never mind get her ready to for the hospital or there's some days we are all ready to go and then Hailey NEEDS a nap. I can't control this, they should work with me.
Today the nurse called my cell phone to say were just going to give Hannah a bath we will wait to do trach ties. I said ok I tried to make it in but Hailey was soo  cranky I just put her down for a nap.. Not even 5 mins later the other nurse calls THE ROOM to tell me Hannah is going to go down for a nap and to call before we come. Well thanks for a waking Hailey up.

On a side note. Hannah is back on a little bit of oxygen. They think she aspirated when she was out playing with physio. Looks like we wont be home till at least September. The hospital isn't even getting together for a big meeting until august 17!

Hospital day 462

July 17, 2012

New glasses fitting
























We fitted Hannah for her new glasses today! These were the two glasses out of 5 or 6 that best fit her and looked the best. The one on the left is pretty close to the same shape as her old ones, they are purple instead of chrome pink. The ones on the right are pink, they had cute flowers on the side and are a better fit for baby's. I had to pick the left ones, the right just remind me of Teen Mom 2 glasses (the fully plastic ones with the elastic going around the head). Turns out the purple ones are cheaper then the pink ones!
Last time I bought Hannah's glasses income assistance medical plan paid for all but $35! Which was AMAZING! Today I found out that they will only fund you for 1 pair of glasses a year and Hannah got hers in January. Thankfully she was approved for the At Home Program and they will fund $150 per 12 months. Hannah's glasses I think she said was $170. So I should only have to pay back $20 this time. I am SO thankful to live in the country and time we live in. Honestly at the moment spending $170 on glasses would leave me with enough money to buy Hailey a can of formula and get a bulk box of KD and a maxed credit card. 

So as I have recently realized and come to terms with I NEED a van. I drive a 05 Pontiac pursuit. I LOVE it perfect size for me and the girls IF Hannah was healthy. It's great on gas and hasn't given me any troubles. I got it as an ICBC write off that had been fixed so it is pretty much not worth anything (atleast not in a dealership). 
I need a Van to fit Hannah's ventilator, suction machine, humidifier(if we are going somewhere for longer then a day) and a double stroller. The vehicle also has to be big enough to fit two car seats and have someone riding in the back with Hannah incase she needs a suction, her ventilator pops off or if her trach gets blocked and an need emergency trach change. A van is also what fits her needs because in an emergency trach change situation and we were in a small car where would she be laying for the change? On the road/highway. A small car would also make it harder to easily grab all the equipment needed in an emergency, even for just a suction it would be hard to do. I'm applying for Help Fill A Dream Foundation in hopes for some funding for a van or just a little bit of support. I was also told to ask dealerships if they would help me out with our situation because some dealerships have helped people before. 
What I'm looking for in a van is Stow and go seating, it's a must. The "truck" of the van has so much extra room and easy for me to pull up and down the seats depending on who's with us and where we are going. I also want to be able to easy remove the easys because I would like to have as much extra floor room as I can so if Hannah needs to be thrown out of her car seat on to the floor for a trach change she can.

Jeneece place found my blog! They asked if they could post it on facebook and asked if I would be interested in being interviewed on the news for their 6month celebration! 

Hospital day 459
1 year 3 months 2 days

July 16, 2012

CT scan

Hannah went in for a CT scan of her intestines yesterday. The volunteers at the hospital took Hailey so I could go down with her. It was sooo nice to be able to actually go with her and do something. They let me stay in the room while the scan happened, they got my to hold her hands up. She wan't very happy in the machine her left eye(the one that always wiggels) was moving so much! Think it was because she was stressed out being strapped down and the noise.
They turned her pressures down one more setting and said they will turn it put it one lower for the next two days (as long as she tolerates it) and then start trailing her off the ventilator!








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Hailey playing with a toy doll at jeneece place

Hospital day 458

July 15, 2012

Jeneece Place





water fall out side my window
 _______________________________________
kitchen
dinning room

 _______________________________________

play room




 _______________________________________

art room
_______________________________________

theatre room
 _______________________________________
back yard
_______________________________________

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entrance
Hospital day 457
1 year 3 months 

Day 457

Hannah is still going fabulous! She did well on taking her own breaths while she was sleeping last night. Her ventilator is on pressures of 16 on 7 (I haven't learned what exactly that means yet) but once she gets to 15 on 7 they will feel comfortable coming off the ventilator for periods of time! The nurse said that 15 on 7 is what the pressures a normal person would breath in which sounds great but what if she can't breath like a normal person with out it..
They did an X-ray of her lungs and a quick on of her bowel last night. Her left lung looked a little over inflated on the bottom and almost collapsed looking at the top which is apparently how her old xrays look like. I don't know what that means but Physio tomorrow is going to massage her back and the doctors will explain better tomorrow. The X-ray they took of her bowel wasn't very good because she was sitting up but they did see a spot where the bowel was really big and then really small after which fits their theory that she has scaring from NEC.
They also changed the amout of water that goes in the GJ tube balloon from 5ml 3ml and the amount of fluid coming out of her gtube drain has went down ALOT. It looks like the balloon was causing a plug effect.

It's soo nice that things are changing and new idea's are being made!

Hospital day 457

July 14, 2012

NEC scaring ?

More good news today! 
They changed Hannah's settings again! They trailed her over night on less breaths that they give her plus extra's that she breaths over what they give. She did great she does breath on her own when she is asleep, so today they changed the settings to only giving her a breath when she breaths! One step closer to coming off the ventilator for periods of time. They just want to wait a few more days to make sure they don't stress her lungs out to much. But her heart is happier now that she is taking her own breaths it use to sit around 130 now it is 110ish. 
sorry for the bad picture
 hopefully this helps make it easier to understand.
Also spoke to the hospitals surgeon, we discussed Hannah's feeding/Gtube/Puking. She had a few ideas; When Hannah had NEC more of the bowel was effected then just what had died and was removed making it cause her to not be able to take food in as quickly from the stomach into the bowel. Another was, when they reconnected the bowel they made the intestine smaller from all the scare tissue. If the intestine had a smaller part it would make the milk back up into the stomach causing her to puke and/or aspirate. Her last idea was that the balloon in the G-J tube is to big and it is causing a plug like effect in her stomach. 


If part of the bowel was effected by NEC or there was scare tissue it might mean that Hannah can go back to normal gtube feeding and might be able to try bottle feeding again. The reason bottle feeding was stopped is because she caught Pneumonia after coming back from Nanaimo hospital the second time so they assumed she was aspirating. They gave her a GJ tube because they couldn't figure out why Hannah wasn't getting better so they thought maybe she wasn't completely puking up milk but puking fair enough that it went into her lungs(/lets try anything). Even if Hannah couldn't eat or drink bottles a G tube instead of a GJ tube would mean she could come off her feeding pump after every feed instead of only coming off of it for a maximum of 4 hours a day. Down side is she would probably need yet another surgery with another nice tummy scar :(

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July 13, 2012

Amen

trail off ventilator?

I love this house but it sucks that EVERYONE that is here is here because they just had a preemie baby. I learned to avoid talking to people in the NICU because its depressing listen to people talk about there babies being born at 29 weeks and doing so well and going home soon after being there a couple months. You cant avoid people here, even if I tried you share the same kitchen and cant eat in your room. Not that people aren't nice just it sucks! and on top of the fact my child has been here 15 months there all coupled tonight. I haven't met very many single mom's(like 2) since I've been here never mind younger single mom's.
On a bright note! They are turning Hannah's pressures down and they want to start trailing her off the ventilator!!! They said they wanted to call children's and talk to the doctor there, I bagged then to call the NICU doctor because its not fair for the TCU doctor to say she knows Hannah. Hannah was in the TCU for  2 and a half months, she was in the NICU for a year. Plus the TCU doctor started saying Hannah was going to go home in 20 days then that she would have to stay in the hospital for a long long time for her lungs to grow to then saying that she could go home asoon as home is ready for her. They didn't understand that Hannah was just recovering from the Trach surgery when she was transferred to the TCU or why exactly she got a Trach just what the notes said. The TCU doctors said her lungs were so bad that she needed to stay and grow new lungs but funny thing is she only has one damaged lung. Her vocal cords could have caused all the problem which would be fixed now that she got the Trach and only NICU would know that because they saw Hannah breathing on her own(with a little support) for 6 months.


Hospital day 455
1 year 2 months 29 days



July 12, 2012

Num Num















Num Num! Volunteers came and cooked dinner for the Jeneece Place, Pull Pork sandwiches with choclate chip banana bread. I'm starting to really love it here! I'll have to wait a week to know for sure but the hospital seems good, the nurses are good, the accommodations good!



Hospital day 454

July 11, 2012

Transferee

The transferee went well, I left 30 minutes before Hannah did so I could catch the 11 ferry. I was hoping that she wouldn't be there yet when I go there. Sadley she was and with the wrong last name! For some reason she is under my last name(Harris), so I need to bring her birth certificate in again and get that changed.

The hospitals alright, the Pedis ICU is VERY small 5 beds and Hannah's space would seem tiny if there was someone in the bed next to her. The place I'm staying  Jeneece place is so nice! Brand new everything massive kids play room with every toy a kid could want, massive theatre room, big kitchen and dinning room. The only thing I don't like is that all your allowed in your room is water, that sucks but the rest is AMAZING. It's right next to the hospital 5 minute walk.
Leaving BC Children's Hospital

Arrived at Victoria General 
 Hannah talking over her Trach and Vent!

dinner on the deck

testing out the toys at jeneece place
Hospital day 453