November 30, 2012

Hannah's Heart

 Hannah was born with Congenital Heart Disease and I've never really went into much detail about her heart and lately I've been coming across other blogs with other young children with heart conditions so though why not explain hers. Hannah was born with Patent Ductus Arteriosus (PDA) which is very common for premature babies. It's the opening between two major blood vessels leading from the heart. Its a nessasary part of the circulatory system before birth and usually closes shortly after birth. Hannah had to have surgery to have hers closed in august 2011 when she was 4months old(1.5 corrected).

Hannah was also born with a Patent Foramen Ovale (PFO) which is a defect in the septum wall between the two upper chambers. PFO's are present in everyone before birth but seal shut in about 80% of people. She did not have to have surgery to get these holes fixed because they were small.

Hannah's biggest heart problem was/is a Ventricular Septal Defect(VSD). VSD is holes in the wall of the between its two lower chambers of the heart. She was born with 1 large, 2 medium and a few small VSDs and had to have the large hole closed october 2011 when she was  6 months old (3.5 corrected).

November 23, 2012

November 23

So yesterday I was asked if I would be ok with a male nurse at home... and I realised I'm not. Maybe its my age.. or the fact I am single but it would be extremely uncomfortable. Bay shore nurses are in your home at all times during the day.. when your sleep, just waking up, making food, cleaning.. just getting out of the shower. Your not suppose to be friends with your nurses but having a friend ship like relationship with them really helps and depending on the nurse it would take a long time (if at all) to ever feel like that. I have no problem with male nurses in the hospital... just not in my home.
  Hannah's getting her new J tube put in today! Same basic tube just with out being able to drain her stomach.. we should be home by Monday or Tuesday! This visit has been way to long considering she wasn't even sick!!!  Hailey's back at the sitters and apparently is coughing.........

Hailey loving chicken wings <3

November 21, 2012

DNA Test

Well Hannah's DNA test is done! It was horrible! Poor girl honestly I think it would have been nicer for her to have a blood test then a mouth swab. The lady stood there expecting Hannah to open her mouth... I told the women that isn't going to happen she has oral aversion so I had to hold her hands up to her head and hold her hands and head tightly.. She's a strong little nugget!
When they say "it's just a mouth swab" it's really 2 swabs scrapped into each side of the mouth. Swab one the tech made her mouth bleed. She asks me is this normal? No I don't think it is but honestly she doesn't put ANYTHING in her mouth so who knows.. She swabs the other side it's even more bloody. Since she had never taken a swab and got blood I made her call the company and make sure it wasn't "contaminated" because the last thing I want is to have to come back again. Sure enough the tech left the swabs drying in Hannah's reach........ So she had toget the swabs done again!!! Poor girl :( The lady comment aw she's handling it so well.... Umm she can't scream or you wouldn't be able to hear right now!
On a side note I saw her put a fry in her mouth for a quick second!!! I gave it to her so she felt included not to actually eat.

November 20, 2012

November 20th

I'v been finding it really hard to get motivated to blog lately! We've been in the hospital for 22 days now, just waiting for a new J tube to come in. It takes 8-10 business days so hopefully by Friday or Monday it will be in! Hailey's been back an forth; she came for 2 days on Halloween then went to the amazing sitters for a week then was here with me for a week and comes back to day!.. 4 days at the sitters this time. It sucks having to be apart from her she came here with so many new things; speed walking, eating with a fork, crossing her arms and pouting when I said no. But on the other hand it is soo hard having her here! She's not Hannah who is use to the hospital 247 and now that she's walking she just wants to be everywhere and we don't have a private room so she's constantly getting into trouble.

Hannah's new favourite thing..
Taking her ventilator off and putting it on her tongue
  Most of Hannah's issues have been resolved. They noticed right away how much she was actually puking. They ended up stopping the feeds for a day after the new GJ tube was put in. Then they started the feeds at 20ml an hour and went up 5mls a day and she was still puking. They did a blue dye test inserting the blue dye into her g port, her section's didn't turn blue. They started her on a new medication Domperidone which seems to have helped SO MUCH with her puking issue.  Hannah's doing really great, its driving me crazy that we are still here... while nothing is wrong. They ordered a J tube which I'm sure the reason they haven't just let us go home and put it in the next time we are here is because I didn't listen to their instructions last time. However, last time we were home she was puking 247 and they have fixed that. 
  My mom's coming to Victoria tomorrow so I can bring Hannah in and get her DNA test done! I can't wait for it to be over. I hated this unneeded stress. 

You wouldn't Imagen how many looks you get pushing a double stroller
 with a baby in one seat and a ventilator in the other!

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November 19, 2012

Emergency Bag

Spare trach and size smaller
Resuscitation Bag
-Paper explaining medical history
-Letter for emergency room doctors
- List of everything in emergency bag
Foley catheters stoma size and 2 sizes smaller
Manual suction and extra suction catheters 

Spare ventialor filter
HME and in line HME 
Diaper and wipes
Scissors and tweezers 
Syringe with sterile water
Safety pin, Tap, coban
Saline, Lube

2 Posseys
|Nystatin & hydrocortisone
Saline & gauze
Hand sanitizer 

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November 15, 2012

    What's even worse then being stuck in the hospital for over 3 weeks is dealing with retarded court stuff!! I was suppose to bring Hannah in to get her swapping done for her DNA test but couldn't because she was in emerg all day that day and I couldn't rebook the appointment because Hannah was really sick and I didn't have day nurses that week or the next because a nurse just quit. Then we got sent here and first on my list to grab was defiantly not the paper with ID# on it, I didn't even pack enough socks.
    So I get a phone call from my lawyers office yesterday saying that the lab has been trying to get a hold of me and that I don't have a voice mail, that I missed my appointment and if I miss another one I will have to pay a $50 fee!! I called and asked if they could send someone to the hospital to get it done and they can't, we've barely even been home for 2 weeks before having to go to the hospital again, how am I suppose to book an appointment and show up for it! What a joke. It would have been so simple if he had just picked the healthy twin!

November 13, 2012

Happy birthday to me

Officially 23! My birthday was yesterday it was pretty good considering Hannah's still in the hospital! Started off by bringing Hailey to the hospital and feeding Hannah yogurt!!! It went pretty good, she wasn't in a high chair so every time I would give her some she could wiggle away and make her self happy again. I managed to get the spoon in her mouth a few times I was just using my figure at home. Then Merg a head nurse came in on her day off and brought me ice cream cake!! We went to Jeneece's place to eat it with Hannah & Hailey and they made a chocolate cake for me while I was at the hospital so I ended up with 2 cakes! They even sung happy birthday to me. It was all around a pretty good birthday, both girls were so happy all day really made the day perfect.