Friday, March 30, 2012

Another week in Seattle

Ok, I don't know what to call this post.

April 4 - They are trying to stablize Ava's blood pressure - she seems to have low blood pressure compared to mom. They added blood pressure meds for today and will end them at about 6pm if they think she doesn't need it anymore. They also added nitric oxide to her air flow to increase the oxegination in her blood. It will take a few days for Ava's body to adjust to the closing off of the PDA.
April 3rd - Ava had surgery this morning about 10 am. They were able to successfully put the clip on the ductus. She now has a permanant accessory on her heart. She was resting well when i left her to go get some rest of my own. She is still on the osicillator and hopefully we can wean back to the ventilator soon, so mommy can have some cuddle time and so can dad while he's here.  The boys and Dad will be coming Thurs, there is lots for them to do and see if we have time, of course dad just wants to spend time with little Ava since he hasn't seen her for 2 almost 3 weeks. Can't wait to see what the boys think of finally getting to meet their little sister who has grown quite a bit since she was born.

April 2nd - Ava got to try out another hat, a smaller version of the first one.  This picture was takin just before they put her back on the oscillator. Her ventilator settings were getting to high and her co2 gases to high so it was  time to take a break.
She's upto 2lbs 15oz (not all baby some is fluids) & 14 inches long

They did an echo on her heart this morning. Not sure of the results yet. They may consider surgery if necessary. There is an artery in heart the closes when you are born, in Ava's case they gave her medicine to help close it and it closed it most of the way but there is still and opening allowing blood to flow both ways and needs to be closed. She also had lots of fluid in her lungs this am according the x-ray.
Update on the stoma - they tried to insert a stint but were unsuccessful, it looks like they will let it close shut, so now we wait. She will not get to start feeds till they reconnect when they feel she is strong enough and healthy enough for the surgery, till then its and nutrients through her IV.

Ava will have surgery tommarrow to close the pda (Patent ductus arteriosus) in her heart. Hopefully by closing the PDA she will be able to get better as she will have proper blood flow through her body. It will be a long morning for mommy who is now at the Ronald McDonald House so that Daddy, and her brothers can come stay with us for a couple days.
April 1st - 1 am we are having a fire drill - no sounding alarms just the blinking fire alarm lights and all the doors have been closed.  Went down to Ava's room at least there is a curtain to shut out the blinking to an existent. It finally quit blinking about 4:30ish am. I actually caught some shut eye till about 7 am - over slept for my current routine but after the non shut eye from 1 to 4:30 is was worth it.

Ava continued to try to fight the ventilator last night and today. Seems she is still holding her breath on occasion. They will continue to play with her vent settings. She will also get 2 doses of lasiks today to help with the excess fluid. Her stoma seems to closing shut so the surgeons are considering reconnecting sooner rather than later.
March 31st - Ava got a room change. They moved her to her own room again as her neighbor was more high maintenance than she was. She got a room with a view, you can kinda see the children's playground and some scenery.  I was able to cuddle with her for awhile in the afternoon, but afterwards she decided to do her own breathing and was breathing against the ventilator. They sedated her to help her get back on track with the ventilator, which helped until she came out of it and then she was holding her breath at times from what they could tell by her body actions and what they were seeing on the monitors.

Ava wearing her boobie beanie cap.
A close up of the cutie
Top view of the hat

March 30th - The night nurse said she had a good night despite what the mornings x-ray's had to say, had to wait till rounds to find out what that meant. Apparently she has extra fluid in her lungs, she is still a puff ball even though her urine output was great and she had lost some weight, meaning she had lost some of the fluids.

Her wound from surgery is looking better but still quite red. It looks like her ostomy wants to close up, hope they do something about that, don't want to redo surgery.
Still waiting on my package from home, sure wish it would get here so I can see if I can some pictures on here.

I made Ava a cute little beanie like this one in pink. I made the newborn size, and going to try and make a preemie one.

Yah - got my care package today, now can charge my camera batteries and see if i can get pictures off the camera and on to the blog and maybe onto facebook. I lost my phone for a bit, i had set it down at the nicu reception desk to butter my hands with the sanitizer and forgot to pick it back up. Realized I' didn't have it when i came upstairs to pump and then go eat, checked the Family Resource Center - the last place I remember having it and Ava's room no phone, headed off to supper and decided to ask the desk if I'ld left it sure enough I had. Phew!
March 29th - Tried to get a picture of Ava but the camera batteries died. Wonder what is taking the package Robert sent so long to get here. I realize he sent it to the room we were originally in and we moved rooms yesterday. But really what's taking it so long.

Ava has now been with us for 6 weeks doesn't seem like it's been that long. She had a normal day, no changes in meds or respirator settings. They did cultures on her incision since its been really red and sore looking. They have her on some really strong antibiotics to catch any infection she may have. The cultures came back negative. They finally got the DNA they need to further test for cystic fibrosis. Not sure when we'll get those results back. Due to the blood transfusion yesterday she was retaining fluids overnight and today so they gave her lasiks to help her shed some of the built up fluids.

Maxine, Nancy and Kayla came down from Mt. Vernon again to see us and took me out to supper at 13 Coins in downtown Seattle. Really neat old restaurant with good food. I had the Philadelphia Steak Sandwich and fresh fries. The sandwich was too big for me to get through I ate 1/2 of it and a little bit of the second half and only about 1/2 of the fries. We sat and the counter in old padded high back chairs. 

Now that the fridge in the Parents lounge on Train Floor 4 has been replaced i was able to get some groceries to put in it. Only put the milk and yogurt, the rest I'm keeping in my room.

Nancy was able to give me a little extra financial support thanks to the great people she knows that donated to our little Ava's cause. What wonderful people to help out someone they don't know. Nancy took a couple pictures to share with them which was great. Kayla got some video, hope she is able to email it to me and I can post it.

Sounds like Blake had a rough Pinewood Derby race again, the poor boy can't catch a break. Mommy feels bad for him. It sounded like he took it pretty well though.

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