April 30, 2012

April 30th #2

Scratch that

My biggest concern is I have to rely on other people for EVERYTHING. I though that I wouldn't be able to leave Hannah with just anyone but that I would have to take her everywhere if I needed to do something.. I didn't think about how I can't drive a car with her and Hailey in the back.. someone would need to be back there with her incase the ventilator popped out or if she needed a suction.
So I will need someone to drive us around while I am in the back with them or we will have to take the bus or walk to where we need to go.
These are things Doctors don't tell you. or at least they haven't yet...

I miss low flow

April 30th


Hannah's doing AMAZING, its so nice to have an active baby again.

They are planning to move Hannah out of the NICU and into the PICU/ICU at the end of the week or beginning of next week. They also told me for the first time EVER that with Hannah being Trached I cant sleep, shower or pee with out her. I will be getting 8 hours of nursing at home for the night so I can sleep. They will try and get me more(about 12hrs) because I am a single mom. She also told me that it is common for the nurses to call in sick and there is no one to replace them. The only other person I have that will get trained to look after Hannah is my mom.

My biggest concern right now is court.
There dad filed up north for custody before I filled so the file was up north, even though he never served me or tried to serve me with court papers. Me and my lawyer applied for the file to be transferred to where I live but to do so you have to have a court date where he applied. The first court date their "father" didn't show up to, the second one the judge didn't agree it was fair that we have the hearing because the dad didn't know the medical history of the girls. We instead had a phone conference with their dad, his lawyer, an "off duty" judge, my lawyer and me. The agreements at the end of the conference were that; the file be moved to Victoria(3hrs away from where we live), the dad have a full medical report of both girls 30 days before the next court date and a DNA test be done by the fathers request.
At the time of the phone conference Hannah was in Nanaimo about to go home on low flow so Victoria sounded like a do able agreement. My lawyer was blown away with the way the judges up north had handled the case so we weren't even sure the file would get transferred to where I live. To me at that time with Hannah's state it seemed like a good plan, court would be close, wouldn't have to continue battling for where court would be,we could start on custody and support faster.
 Funny thing is the next morning Hannah was sent back to Vancouver hospital.

Now that Hannah is Trached  it's alot more stress. If my mom can't get the day off I would have to take her .. not be able to sleep, go to court with her(if you can even do that) and then drive home. I'm asking my lawyer if its possible to apply for another transfer. I don't no if they can do that now that the file has already been moved once.

On a side note


The doctor also gave me a heart attack because she said that Hannah could go home in a month.. I think that's a bit of an exaggeration.. since she JUST got her treach and my mom and I dont know how to take of it.
Hannah has two teeth now!!

Her glasses still barley fit!
























no cords
Hospital day 381
1 year 15 days

April 29, 2012

Recommend my Blog to Google






Any time you see that button can you please press it! 
It recommends my Blog to Google! Thanks so much.
There's one on the bottom of every blog entry and one on the right column


Hailey being cheecky 


playing peeka boo with the stroller 

April 28, 2012

Day 379

They can look so much alike some times.. but sooo different most of the time.

I didn't give blood today. I woke up with a massive head ache that probably would have went away if I drank a coffee, but you cant drink caffeine before giving blood. I called to ask if I could take Tylenol right before the clinic closed.. you are allowed to take some before giving blood, noted. The next weekend my mom's here I'll try again.
Hannah's on antibiotics for the sores on the back of her neck just in case they got infected. They moved her IV from her foot to head head because she moves her legs around to much so it came out. I hope they didn't have to share a part of her hair, she just grew it all back.

One of many  

























Hospital day 379
1 year 13 days

April 27, 2012

Blood

I can finally donate blood and since the blood donation place is right next door to the children's hospital I  really should. I`v wanted to donate ever since Hannah started getting blood transfusions when she was first born. My blood type is O- and I am unsure what their fathers blood type is but the girls blood type turned out to be O+ so I had to get the RH shot. The RH shot effects your blood for the next year so you are unable to give blood.. but my time is up. :)


I was looking up websites of things you should go before giving blood, like what you should eat or drink. I found this website and it scares the bejesus out of me, even the way they explain the needle makes it sound scary but its just like a regular blood test needle. (http://www.wikihow.com/Prepare-to-Donate-Blood ) I`m not sure if my Iron will be high enough but if not ill start taking iron pills and try again next time my moms in town for the weekend. As long as this doesn't turn out to be a traumatizing experience I would like to give blood ever time I can till Hannah goes home(I think its every 56 or 76 days).

 My moms here this weekend so Saturday I`m going to try and give blood and my mom can watch Hailey after.

April 26, 2012

Day 376

Not much changed today with Hannah, the doctor that did the surgery came in an apologized to me for the pressure sores. Hannah's gotten extremely puffy since yesterday she can barley open her eyes.

Hailey woke up at 3am and only took a 30minute nap before I dropped her off at the sitters at 9:30!! I am Soooooooo tired today.










Hospital day 376

April 25, 2012

Pressure sores


That face explains Hannahs day to a T. Since Hannah has been paralysed for the last 5 days with the bubble wrap they choose to put around her neck to hold the Trach in place she got really BAD pressure sores. So bad that they took a picture of it and asked to use it for teaching purposes. The only reason they check what was wrong is because they could smell something bad getting worse.


It's so much worse then what I got in pictures.. Theres a red line all the way along thats just about to bleed.. purple blister spots everywhere on the back of her neck and head. Theres another large spot like the one in the above picture but an open wound not purple. This isnt the first time shes had pressure blisters from the hospital.. Below is pressure blisters from the CPap.. I didn't take close ups of how bad the blisters were because this was the first time she was on high flow but the blisters are all around her nose and under her nose where the tube sits and a few around her eye brow area. Poor girl has the worst luck.





Hospital day 375

April 23, 2012

April 23

Hannah's been pretty good.. had a crash on Saturday so they changed her ventilator setting to a pedi patient like they should have always been at. They never called me to let me know there was something wrong and I couldn't go in because Hailey has a cold that seems to be NEVER ENDING. I also had to fight with a doctor to put her back on the paralizyers. The only reason they even took her off of them is because they effed up and didn't notice she was crashing.

Hospital day 373
1 year 7 days




April 20, 2012

1st day with trach

They have Hannah asleep on paralysers and most likely will be for a week. She needs to lay completely still so that the hole can heal. Her face popped back out! barley even noticeable after a few hours. Her nostrils are still a little pushed in but they should go back to normal in a day or two.




Her neck/treach up close
Hannahs long hair! That has been shaved and
is still longer and thicker then haileys.
Probably from medication and shaving it

Hospital day 369
1 year 4 days

Trach surgery done.

The doctor just called me. When the phone rang I though maybe I had forgot to give consent to something because it was the time she was suppose to be going into the OR.
The surgery its self went well no complications the only thing is they found brown blood on one of the tools that was on the tray with all the tools they used on Hannah. The doctor said it happened 92 times at children's in 2011! 92 times they didn't properly clean the tools THAT THEY KNOW OF. He said its 1 in a million that she would catch anything from this, but said infection control would talk to me and I asked to have tests done just to make sure.

Baby sitter will be here in an hour and then I will get to see Hannah.
<3 <3

Hospital day 369
1 year 4 days

April 19, 2012

Last day on Bipap


Todays the last day Hannah will be on Bipap!!! She goes into the or at 10:30 tomorrow to get her Treachostomy!! It's all happening so fast, but I'm glade. I've come to terms with the Trach now and im glade shes getting the mask off her face so hopefully her face can pop back out. My family preservation worker got me a last minute babysitter tomorrow from 12-4(thank god!). Hannah should be out around 12:30, sucks I'll miss her going in but its two hour surgery and Hailey's still sick.
I didn't want to hear the risks of the surgery but the one the doctor did tell me was that the lung might pop and have to have a tube draining the fulid.. I asked if that ment the lungs would be more damaged, he said they wouldn't be. 

Hospital day 369
1 year 3 days

April 18, 2012

face indents



The red lines are where Hannahs face is pushed in
Hailey went to the baby sitters today so I was able to go in and see Hannah. Me and the nurse weighed Hannah and took off her mask to weigh her... its the first time in a while that iv seen her face. It was really indented from the bipap. I heard about peoples faces being pushed in for the bipap after a long time but not after 3 months. It was really bad.. but maybe that's why her face looks so square and chubby with the mask on because all the fat is pushed out from under the mask. I'm glade shes getting a treach so her face wont get more damaged.

Hannahs blood gas last night was 61 and this morning it was 71. There going to do another gas tomorrow morning and might have to intubate her again.

Hannah's new digital picture frame 

Hospital day 368
1 year 2 days

April 17, 2012

Bronchoscope

Hannah had her Bronchoscope done this morning. I didn't get to go in because Hailey has a runny nose and was super cranky which I though was from the sickness but apparently she's getting her second top tooth. I bought her some cold medication (the only kind that they make for babies) so hopefully her nose clears up fast.
Hannah was intubated after/during the procedure but excavated her self by after noon so she is back on Bipap.. for now. The nurse said that the left lung had  bronchomalacia and the left vocal cord has vocal cord paralysis.. I didn't get to talk to a doctor because I wasn't able to go in, But one lung is fine! that's better then they thought.

They're now looking to book surgery within 10 days!

My theory is:

Her left lung has to work twice as hard, but the right is still better then they thought it was. She might be able to breath better on just bipap if it was just her lungs.. I think the treach will help lots! Her lung will most likely get better with time.. I don't know if her vocal cord will get better or not but she might not always need the treach with a ventilator, maybe just a treach :). The type of vocal cord paralysis is Unilateral paralysis.
I don't know why all of a sudden these problem are worse.. maybe they pushed her to far and caused the damage to her lungs or maybe when she got pneumonia and they intubated her they damaged her vocal cord more.

Info sites: Bronchomalacia , Vocal cord paralysis

Hospital day 367
1 year 1 day

April 16, 2012

Girls First Birthday



Happy Birthday



The girls first birthday went well for being at a hospital. Lots of presents and cake.




Of course Hannah&Hailey's "dad" didn't send them anything, pay me any child support or even email to wish them a happy birthday or ask for a photo, Not shocking. To all my friends that read this I would like to let everyone know I'd greatly appreciate it if you didn't bring him up.. ever. The only reasons I'd want him to be brought up in a conversation from here on out is if it is about a current court situation or if he starts contacting me or the hospital trying to be apart of there life(witch will never ever happen). Id really appreciate not hearing comments when things happens. Please no random comments like; He's missing out, Karmas going to get him, He's going to hell ect. I don't want to hear if you see him, I don't want to hear anything unless it directly effects me like. I'd like to move on with my life and if I havn't brought him up it's because he choose to remain a dead beat that can't even send and email. 
I'll still be writing updates on Dads situation/Court but just that.


On another note.. 

Hannahs blood gas was 76 again... still not good at all. She is getting a Bronchoscope done tomorrow at 8:30am. Which is basicly shoving a camera all the way down her air way to her lungs to see how damaged they are. The doctor that would be doing the procedure told me that on the camera is also a ventilator.. but it is very possible that after the scope she will need to be intubated because of the Anastasia and.... because shes already on the tip of a crash.
Its funny and extremely irritating that every doctor in the same or even in different departments never tell you the same thing. Hannahs health is always told in a completely different storey then the last person told. The ENT(ear nose and throat) doctor said today that if the scope came back fine that she would not need a treache with is NOT what the NICU doctors are saying. The NICU doctor today also said Hannah will most likly just be extremely sick the first cold and flue season after being out of the hospital when the last doctor told me she was going to be sick for a long long time and might not ever get better. One NICU doctor also had once told me that Hannah would only need a trach with no ventilator witch is most defiantly not true. No one says the same thing ever.

Hospital day 366
1 year

April 15, 2012

photoshoot

Hannah got her first tooth!!! The same one Hailey's first was.. Hailey also got her forth tooth the same day.. her first top tooth :).
Hannahs blood gas was 72 on Friday not great so there going to do one tomorrow(her birthday).



The amazing Jessica Rae
www.JessicaRae.ca
facebook/JessicaRaePhoto

We had the photo shoot yesterday, it went pretty good. Hannah had just woke up from a nap when the photographer got there she didn't cry while she was there, but was sooo tired after she left that she was soooo cranky. So sad the photographer couldn't have been there for longer then 30 mins and she was already so tired. She didn't even do much a few cuddles and sat in her high chair for 5 maybe 10 minutes. I cant wait for her Treacheostomy now.. not that I want her to have it but it will be nice to have a baby that has energy again.
The cup cakes went well Hailey mostly just ate the frosting and Hannah didn't touch hers like I had though she wouldn't. I tried to encourage her to, I reached her hand out and touched the cupcake.



I just went and saw Steph and her family at the air port <3 I miss being around friends, but lately I have had a decent amount of visitors.

April 11, 2012

The plan

The doctors met today, they have a plan.
but, before they even came in to talk to me the TR(works the oxygen and pressures of the mask) turned up the pressure to the highest setting. He didn't tell me that the doctors had met yet, he just said they were turning it up to make sure she didn't crash before her birthday on Monday. I knew that ment they had met and that it was decided they were going to give Hannah a Traech.
Next the nurse(that I hadn't seen yet today) and Jane the discharge planning nurse came in. Jane had this look on her face and didn't say anything to me. I new it was bad.
Jane told me that they were giving her a Trach and they would call ENT(ears nose and throat) to come look at her and set up a date to do the surgery. Jane told me we would still be in the hospital for a long while yet. She mentioned that they talked about Hannah's survival rate but didn't want to discuss to much with me because she wasn't the doctor.
When the doctor finally came in she confirmed all the things Jane had told me, she wouldn't go into detail about the survival rate but she did stress that she would easily catch colds/bugs/viruses and that it could easily turn into pneumonia, we would spend most of our time in cold season in the hospital. She told me that her lung disease is extremely bad and that she didn't know for sure if it would get better just that with healthy diet and lots and lots of time we could hope it would improve.We will eventually get moved out of the NICU once Hannah's tracheotomy healths and be moved into the PICU. She is no longer on room air or just above she's on 3 litres of oxygen now.

Hannah's Next blood gas is on Friday. I asked the doctor if it is bad on friday if we could wait till Saturday night to intubate her that way at least we can have pictures and pretend its their birthday<3



recap; getting Treach, might not ever get better, not going home for a long long time


Hospital day 362
11 months 27days

Compassionate Care EI Benefits

I just got off the phone with a lady from EI(women are SO much better to talk to them men).
She informed me that compassionate care would only give me 6 weeks and that regular sick leave would give me 15 but that I had already used 7 weeks from before the girls were born. The lady told me that it is possible to get more then 15 weeks of sick leave as long as the doctor could confirm that Hannah is as sick as she is.

 The proper forms for compassionate care(for a baby) are:

She suggested that we do compassionate care first incase something happened to Hannah or if she got better and I wouldn't qualify later. Around may 6th I will send in my forms for sick leave.



April 10, 2012

Easter weekend and Birthday planning

Back from seeing my family for Easter. It was really nice, before the girls I never really enjoyed seeing my family I would have rather been out with my friends.
I picked up the few things I wanted for the photo shot, I took my brother cloths shopping to find out he had never shopped for his own jeans before!! I asked him how much was to much to spend on jeans.. He said he didn't know I asked 60-80 he said to much. I managed to find two pairs that were each 30 that weren't that bad!!! Apparently it is possible to shop cheap?
I think I'll bake 3 cup cakes and decorate them the same just incase one gets recked on the drive to the hospital, I could defiantly see that happening. If it doesn't get recked then I have one to bring in on there actual birthday :)

Hannah updates her gas was 74 this time.. Last Thursday it was 62. 80 is extremely bad 75 is pushing it.
It seems to be going up and down but not getting better just floating between 60-70s. As usual the doctors can't stick to a plan so they didn't meet today and are planning to meet tomorrow at 3. Not getting my hopes to high I'm sure they won't meet again tomorrow.


Hospital day 361

April 08, 2012

Lower setting trail..


The doctors trialed Hannah on Cpap mode on the Bipap machine. They were trying for 2 hours, she only lasted an hour and 20. I don't know who came up with this idea to push her WAY past her limit but they need to go back to school in my opinion.
Her blood gas this morning came back 90.. 80 is to high and should be incubated. Thankfully it came back down 62! They aren't planing to trial her anymore(thank eff) and are planning a big meeting between just te doctors to discuss on the 12.

Me and Hailey are visiting our family on the island for Easter. :)



Hospital day 359
11 months 24 days 

April 05, 2012

"dads" custody application

Well I finally got the application the girls dad(DB) filed for custody in October a day after Hannah's heart surgery, that he never served to me. Funny you can be with someone for over a year and they don't know you birthday... Apparently I'm 30, he wrote December 12, 1981. The only thing right is the day not the month and off by 8 years. But close! I'm surprised he actually knew the girls birthday.. DB applied for joint custody and joint guardian ship.. And asked for access being "depending on the custody agreement"..... He wants them so bad beside the boxes you TICK that say custody and guardian ship he ticked and wrote "joint" above, he also want to make us move back up north to get out of paying more child support.

I have heard from a friend that DB's mom is saying she is going to try to get custody and let DB's wife raise them. Not at all surprised, I know she will eventually take me to court because she thinks she's "almighty" and her sons are perfect people

I will keep his first and last name out of my blog as well as the girls last name and any other family members who may come up. From now on the twins dad will be referred to as "DB" :).

On a side note 11 days till the girls turn 1!

Hospital day 356

April 04, 2012

April 4th

Today's doctor said they were going to trail Hannah off bipap for 15 mins! What a joke. She can't even handle them putting new water in her machine for a minute. I made him realize how dumb that sounded so now they are planning to switch to a lower setting for 2 hours and see how she does. They are asking for her to crash... Why would u start changing her settings when she isnt even handling the ones she's on?! I told the doctor that if she crashed for her birthday I would come after him..  I hope he new I was pretty much kidding... But really why can't they wait a week and a half to make her crash, so stupid and upsetting.


Hospital day 355

April 03, 2012

Planning for trach :(



The nurse said the doctors want meet with me tomorrow and talk about Hannah's plan, if there is a plan or if we are waiting for her to crash
The lung doctors also just came in to talk to me they want to make a plan for her to get a treach.
I know she's going to get a trach eventually and I guess I'm ok with it a long as its after their birthday! If she crashes before she will have just got it and not be mobile at all:(














Hospital day 354
11 months 19 days