October 31, 2012

2nd Halloween

 Halloween wasn't how I had planned this year. I spend the last week fighting with Victoria hospital not to send us back for feeding issues that could be dealt with later. Everything was going great at home Hannah was as doing better then she had been and then her GJ tube fell out AGAIN on the 30th. So upsetting! It's fallen out every two weeks since august and it hasn't just fallen out at home it fell out once before we left the hospital with the balloon deflated. In August the GI surgeon ordered that we inflate her gj balloon with 3mls of water instead of 4-5mls and ever since then its been falling out. 
  Hannah got her GJ tube put back in around 1pm and the nursing staff agreed that I could take the girls to Jeneece's place an attempt to enjoy Halloween. Hannah was still had sedation in her so she was really sleepy and could hardly even hold her head up, I thought she would just sleep in the stroller and everything would be good. 5 minutes after being there her stats started to drop and she needed oxygen so I had to run over to the hospital. At least I tried? Maybe next year...

October 23, 2012

Can't believe this was a year ago

                                                                  A week after surgery

October 16, 2012

BS hospital experience

Well the last few days have been stressful.
  We once again had to go back to Victoria hospital because Hannah's GJ tube fell out AGAIN. This time it fell out with the tube still inflated with 3mls of water... OUCH! The tube was actually put in really quick, 2 hours after we got there. We stayed the night because I felt there was something else wrong with Hannah. Her heart rate has been 150-180 for the few days before the tube fell out, she was needing oxygen and her respitory rate was between 60-80.  Last time we were at the hospital the GI doctor ordered that we stop draining Hannah's G tube because it is preventing normal functions of the gut and by stopping draining making her have stuff to puke up potentially causing her to aspirate into her lungs making her at high risk of pneumonia. Sure maybe I was being a little paranoid that she had pneumonia but Hannah is not normally like this and the first thing you learn about going home with oxygen is that it hides the real problem.
  The hospital agreed that maybe she was aspirating so they put blue dye in her feed for the night so it would appear in her secretions if she was. She never puked for them... Her lips were a little blue though so she defiantly has a little bit of reflux but still cant be sure if she aspirates. Well the Pedi's ICU was full and there was a big car accident on the malahat and a little girl needed to be admitted so Hannah was being kicked out. I asked for the doctors to please do and xray just to make sure it is nothing, but the doctor still said "I see no reason to give her one". I didn't really agree but the doctor should know best. Maybe she is having a reacting from being over suctioned to the point where she was being suctioned for just taking a breath. Ya that must be it..  Our spot was given up at 3pm, we were given a take of oxygen to bring over to Jeneece's place and the stored all mine and Hannah's stuff in a spare room. Once I got over to jeneece's place another Trached mom was in the kitchen and before I even said what was going on she comments "Man she's breathing fast" . Which then made me think ' if she could notice by just hearing her for a few seconds and her child isnt even on a ventilator maybe something is wrong' . So we keep talking and I explain the situation and decide I better get a second opion so I call children's to ask what they think.
 The doctor at childrens tells me that its hard to asses over the phone but that it doesn't sound normal and if they are to full to accept her back in Victoria that they can send a helicopter to vic to get us but first he needs to talk to the doctor in vic to make sure she thinks Hannah is fine. Well of course, she wont admit shes wrong.. He calls me back and says to take the ambulance home, if once we get home if I still think something wong go to the local hospital and they will send a helicopter there to come get us. So now my plan is to get the F*** out of here so I can get to our hospital so we can go see a doctor that actually gives two shits.
  6 oclock rolls around its med time for Hannah and they are at the hospital and its POORING rain and we don't have a rain cover for the stroller so I call the hospital to ask if they can get someone to bring her meds, after all she is still technically their patient.  Nope they wont bring them, says to bring Hannah over there to get them or get them when the ambulance comes. Who knows when that will be. So I let Hannah sleep as long as I can before its to long after the meds were to give them. I get over there (soaking) standing in the ICU and Hannah starts to decate(oxygen level drops needs oxygen). So I put her on half a liter of oxygen and shes still decating.. I put her on a liter of oxygen and she is STILL DECATING. The nurse says to me "Does she normaly need this much oxygen?" UMMM NO!. And that was the end of that they packed up my meds and said ok go back to jeneece's place we'll call you when the ambulance is here. "um can you please call them to see how long its going to be? its pooring out side and Hannah shouldn't be out there" .. She wouldn't  She said if we weren't going back over we could sit in the entrance of the ICU were there is a bench. For real. Not only does my daughter not get assessed and I don't get taken seriously now we are treated like garbage sitting on a bench.I am so angry by this point I honestly feel like my face is as red as a tamato. Every time one of Hannah's alarms rang off a nurse would walk down the hallway to make sure it wasn't one of their patients. The nurse that sent us to our bench eventually came around to check on us... told me "Oh Hannah probably just has a cold, if you still think shes got something bring her hospital in a couple of days". So now I go from being so angry to thinking omg am I crazy?? Am I just over reacting? Is this how all trached children are when they are sick? Worst feeling ever I feel like I want to puke.
  Well it was 11-11:30 before the ambulance even came. EIGHT HOURS AFTER THE GAVE OUR SPOT TO SOMEONE ELSE. 3 and a half hour ambulance ride home full of high heart rates and oxygen. We get home at 1:30am and our night nurse is waiting at our door for us(thank god). By this point the lack of sleep, not alot of food and crazy emotions I feel like I've been up for days and hung over. We got Hannah in side the house and she tells me to go get some sleep..  I don't even bother putting PJs on because I doubt it will be a long sleep. 30 minutes goes by and I have my ear plugs in but I can hear the amount of times she needed a suction so I get up and as I'm standing in the door way with my hands over my face because the lights so bright she yells "BONNIE".
  Thank god emergency was dead and I had my nurse with us. I was in NO shape to explain what was going on never mind take care of Hannah because the dont know anything about trachs and vents. The take her tempature under her arm pit and if feels cold so they try it anally so gross). Yup she has a fever. So they take a bunch of blood tests(something Vic didnt do) and send her for an xray. The blood tests take a few days but the xray came back showing what looks like pneimona, so the start treating her right away. They said that its a stable Pneimona and there's no reason she should go to children's  except thats wrong, Hannah should NEVER be treated at the local hospital, but either way YAY someone finally listened to me. Then the morning crew came on at 7.. goes from good to bad. They wont listen to me about not sending me to vic or even calling them. I want Hannah to be threw children's because we were just at vic and they clearly don't care. 11:30am finally the doctor was able to talk to victoria and ask what needs to be done.. they come up with this GENUS plan that Hannah should just receive her treatment at the hospital there, (talk about effing stupid) that would mean 3 or more days of being there where no one in the hospital is trained to take care of her. The next idea was she would go home and an RN could give her the IV anti biotic . I have one day nurse for the next 4 days and she isn't an RN and I cant drive my self to the hospital.. Next plan, send her home and give her oral medication for a longer period of time.
  By this point im in tears because I have hardly slept and this all should have been delt with properly in victoria, I shouldn't have to get out of an ambulance and go to a less qualified hospital. The doctor then tells us we don't even know its pneomina, it doesn't really look like it to the radiologist but were going to treat it as if it was pneomina and play it by ear. Nice let her be in critical care before she gets the proper care.
  Then I get a HUDGE lecture from the nurse at the hospital about how I dont have anyone to help me with hannah and that I donèt do anything for me I spend all my time focusing on the girls. Then the hospital social worker comes in and also lectures me about how I spend all my time focusing on the girls and never do anything for me. Get f***in serious, obviously I spend all my time focusing on the girls. I'd love to go back to work or go out for friends but there isn't time for that and even if there was that's no bodes right to say I care to much.
  Today we went to the same paediatric that saw her in the hospital in his office. He says Hannah isn't better or worse today. She's not on oxygen but thats the only improvement. He gave her a swap for RSV(which I had to bag vic into filling out the vaccination forms for)  and said its still not sure if its an infection or if its a virus and we just gotta wait it out. We'll go in for another xray next week to take a look at her lungs and make sure there not worse. she's getting 4 puffs of ventoline every 4 hours to help her weeze, which is way worse today.

It's so frustrating have no one listen to you, just because your not a doctor. It's so annoying to be called a child by one hospital and have them claim I'm not strong enough to take care of both girls and have another hospital say I worry to much about the girls. How about no one comment on my as a parent because I don't get to tell them what I think of their parenting style. Next month I'll be 23, that may not be 30 but OH EFFING WELL.

Baby sitter took her to homedepo for crafts

Eating happily at the sitters 

October 11, 2012

Baby sign

 Looks like your finger is a banana and you are peeling it. To start, take your weak hand and make a fist with your index finger pointing up. With your strong hand, make a peeling motion down the pointed finger.
 Make a fist out of your two hands, then moving the fists vertically up and down your chest. The sign looks a lot like someone scrubbing themselves with both hands, as if taking a very efficient bath
Put your two hands together, palm-to-palm. Then place your hands on an angle by the side of your head, and rest your head on your hands as if they were a pillow.
 Both hands with your fingers extended and thumbs tucked under. Start with your palms facing your body and down low, then pull your hands up to chest level.

put your hands together, palm-to-palm. Then holding your pinkies together, open up your hands as if opening up a book.

Taking your hands and placing them down around your waist. Take your index fingers and middle finger together from each hand and tap them on your thumbs. Lots of people will do the sign a bit higher up on the body if necessary for baby to see it properly.

 Take your strong hand and touch it to the wrist of your weak hand. It is like you are taking a pulse.
Extend and spread your fingers apart, with your pinkie facing forward tap your thumb on your chin.

The sign looks like a mouth saying no. Take your index finger together with your middle finger and tap them together with your thumb.
Extend your thumb and index fingers on both hands, take your strong hand and start with your thumb under your jaw. Then move the strong hand and tap it down on top of your weak hand.
 Thank you
Extend your fingers and thumb, touch you fingers to your chin and bring your fingers forward.
Extend your fingers and hold them together, start with your fingers touching your chest, with your elbows up. Drop your elbows down. It is as if you are so tired you cannot keep holding your arms up.
Make your two hands into a fist and tuck your thumb up between your index finger and middle finger. Twist your hands back and forth to make the sign.

Taking your index finger and aiming it skyward. Raise and lower your arm so it is like you are pointing up at the sky.


October 08, 2012

Hailey is talking so much now, none stop babbeling! She can say mommy, Hannah, babie, hi and today I was singging patty cake to her today and she said "patty cake". Way to cute. She isn't fully walking yet but she takes 5-6 steps at a time.

 15months/17.5 corrected

Hailey's sitter/LC loving the girls <3

October 05, 2012

October 5th

  Booked the DNA test for next Monday. They ask you to bring one piece of ID for the child, a photo (which I thought was really weird that they wouldn't have a digital camera there to take one them selves) and not to eat or drink for one hour before the testing(That wont be hard).  It's so annoying having to deal with someone so pathetic like DB that will pull everything humanly possible to get out of paying child support  aside from quitting his jobs of course(heaven forbid he be poor). It sucks thinking about how this is my life.. a few things short of a jerry springer episode.

  On a side note, We are for sure going home tomorrow! So we will be back in time for thanks giving dinner.  When we first got here I was so tired and cranky, the doctor told me that the reason we were here was because of Hannah's cold, they hadn't heard anything about my heart concerns and NONE of the specialist where working all of them were on holidays. Why would you send me here if you cant have anyone knowledgeable look at her when there is another hospital just as close that knows her just as well... Well thankfully I was so cranky and  they had just screwed up BIG time on my friends child so they weren't in any position to make any kind of mistake, so they were actually listening to me. For the last few weeks they have just been ignoring everything I said. Well I was right! She needed a bigger trach(on top of needing a cuffed trach). The Ears Nose and Throat specialist put in the new trach and could tell that air was coming out both the stoma and her nose. So they upsized her Trach to a 4.5 with a cuff for while she sleeps.
  I also made sure that they figured out what was going on with her stomach because I wasn't accepting "this is Hannah" as an answer(so glade I was tired and had my momma bear attitude). After taking a few blood test and collecting a hand full of urine samples they realised she was low on sodium(which they had stopped adding to her feeds in august) and that she was very dehydrated. The GI specialist came to see her and didn't agree with us draining her G-tube, but if she is throwing up alot she said to drain it for a short amount of time and re-feed it, nothing like we were doing.
  Hannah is finally up to her normal rate and not puking like she was, she's acting normal and looks good. Pretty much they changed everything back to how children's sent her to Victoria so hopefully we wont need to come back for awhile!

I think she loves the sitters :P

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October 04, 2012

First Appearance

  Today was our first appearance in court.... 11 months later. Not much happened  scheduled a date for our family case conference January 4th. Our last case conference was in Feburary where we decided to have court in Victoria, have a full medical report of Hannah to DB 30 days before the next court date and to have a DNA test done at DB's wishes and expense. Today he finally arranged and paid for the DNA test, it was faxed to my lawyer this morning.. instead of getting both girls done like the order said he is just getting Hannah tested. So some time next week I need to bring Hannah to a clinic and get a mouth and she HATES things in her mouth.  http://www.genetrackcanada.com
Last night I was inspired to look up the girls names from another blog.

Hannah "grace of god" - "favored by god"

Hailey "hero"

I knew Hannah meant favored by god but I had never seen "grace of god", Hailey's middle name is grace. I had also never seen Hailey mean hero before she was born I looked it up and all I found is Something about hay

October 03, 2012

NICU parent

Sharing what a NICU parent wrote

Only a NICU parent knows:

The pain of hearing a woman in her 3rd trimester IGNORANTLY complaining about her pregnancy, wondering what that would be like.
The fear of seeing their child for the first time.
The pain of not holding your child for days(or months).
That Brady's are not referring to the Brady Bunch. 
What CPAP means. 
The workings of an isolette. 
When the first lullabys they know are the beeping of alarms and ABCs are apnea/bradycardia
What  each beep means.
How important kangaroo care is to baby and mom/dad. 
That a parent's job is to fix whatever hurts their child & know the pain of realizing you can't. 
What a PICC Line is
Just how important surfactant is & what it is for that matter
Understands the realism of adjusted ages.
What it feels like to cry the first time you see your baby in a crib.
The agony over sending birth announcements.
How amazing tiny fingers feel clenched to your hand.
Finally understands the metric system. 
There are no choices in the NICU, You have to be strong.
Cracked and bleeding hands from washing them so much and coating them constantly with hand sanitizer.
How hard it is to trust 100+ people you have never met before care for the child.
What it's like to argue with each other over who changes the diaper, its a chance to touch your baby. 
Every inch of their NICU, what walls they cried against, what nurseries they 'lived in'.
What shifts each doctor, nurse, therapist, and staff member works. 
That you will be a germaphobe for at least the next 2 years. People will think you are weird and you will know you are literally saving your child's life. 
50 nurses by name, and their kids' names. 
Can give better directions to the cafeteria, gift shop and parking lot than the employees.
That every day in the NICU makes you one of the lucky ones. 
Just how important each new day is and how much significance a new day holds.
Sure, every day to a parent of a healthy, full term baby means a lot,
 but we go in not knowing. and that is scary!!

October 01, 2012

Cuffed trach? :(

  Well made it 11 days home, new record. Going back to Victoria general tomorrow  morning. After a week of doctors talking to other people besides me my message finally got across!! Since last Thursday the doctors have still not got a hold of me about changing Hannah's ventilator settings so it doesn't ring off apnea every minute. If one of the RT's at the hospital didn't show me how to do the master unlock I would be ripping hair out and punching people. I mean.. there's only so many beeps you can handle..
  They want to take a closer look at Hannah and possibly give her a cuffed trach. So sad about this.. we have been putting her on the passy muir valve to make her vocalize more by getting air to pass threw her mouth and nose and now that may be the very thing that is causing the problems... It sucks that its only a problem when she sleeps though, so I will most likely be able to deflate the cuff during the day but its just one extra dangling thing for Hannah and Hailey to grab at.
  As for the heart concerns I have.. it turns out she hasn't had her heart looked at in a very long time. I'm thinking the last time was in the NICU. So maybe I'm on to something or maybe I'm crazy either way, when you send a baby home from the hospital for the first time who has a known heart condition you would think they would take a look at her heart before setting her free. They can't even reassure me that her heart was good on such and such a date. BUT most of the signs that were scaring me to think maybe it is a heart thing have gotten a little better since we started refeeding and changed her ventilator settings. Hannah has been sleeping most peacefully (less restless), low/normal heart rate while a sleep and not puking as much. Butt she still has pale days/times, feels cold, has more troubles breathing at night, sweating, puking and is a little more tired then usual.