Friday, June 29, 2012

133 days an counting

July 4th - Ava had to have another eye exam on her left eye, so she was pretty much out of it. I spent most of my day running between Ava and the house - the boys played outside some with their friends and on the Wii and Computer playing Skylanders. We watched the fireworks displays from the 6th floor after giving Ava a bath and getting in some holding time. We then made pop corn and headed out to the waiting area. There were even some fireworks that went off right in front of us it was really neat to watch all the fireworks displays from around town. After the main show was over Robert went and gave Ava a bottle still only taking about 16 mls.
Enjoying the fireworks from the 6th Floor of Benefis Hospital
July 3rd - Weaned Ava's Dex more, 2 exams the doc didn't like the first one of the left eye for some of the pictures so she got a second exam.
July 2nd - Today was a lazy day, the boys spent most of it playing Skylanders and napping. Ava had PT at 8 am and snoozed her morning away. Dr. Riedel weaned her Dexamethazone today and hopes we'll be able to successfully wean her completely off in a couple days. She also get to nipple feed once per shift (2 twice a day). She took 11mls from mom at 2pm and 13mls from dad at 8pm. 
July 1st - Wow a new month already the year is 1/2 over and i'm not sure I remember most of it. The boys spent the day playing Skylanders, while mom and dad took turns spending time with Ava. She tried the bottle for the 2nd time today from dad and consumed 12 mls (twice as much as yesterdays) of milk from the bottle. Maybe tomorrow will try the regular nipple instead of the low flow. She dad napped her dad for the entire afternoon.

June 30th - We are gonna try feeding Ava in 1/2 hour feedings every 3 and trying giving her a chance at trying oral once per day. Ava got to try feeding from a bottle today. She made lots of funny faces at first as she tasted and tried the milk.

Ahhh...I'm full and my burp cloth aka cloth diaper makes an awesome blankie (fits perfect)

Enjoyed good food with good company and then the boys, Sara, and I caught the second 1/2 of the Voyagers baseball game - they won with some great plays. Then went back and had smores for dessert.

June 29th -  YAY! no more lovanox shots for the clot. She also was weaned on feedings to an hour and that went well. She of course loves brother time in the evenings. I picked up tickets for tomorrows Voyager Game for the boys. Fingers crossed we'll be able to find them new bikes tomorrow. Talked to Melanie of Quality Life Concepts about services for Miss Ava got her signed up and she'll be in the system next week sometime. Doesn't sound like our offer for the house was even considered, guess we keep looking.


June 28th - Ava had a pretty good day. They weaned her from 2 hours to 1 1/2 hours on her feedings and she has tolerated it really well. However she did not like her vitamins and up chucked it all over mom and her during her pt session. That made for a 2nd change of cloths for the day. She also had an ultra sound/scan on her clot - it sounds like it may be disolved so hopefully no more shots.
Blake (10), Ava (4 months), Zane (7) -  133 days in the hospital - 5lbs 8.4oz?

Thursday, June 21, 2012

I love my brother's and they love me

June 27th -Only change today was to go from feeds in 2 1/2 hours to completing feeds in 2 hours. She had PT this morning at about 8, one of those mornings i'm gonna get there on time, but she was bright eyed and sociable when in was there this morning. She tolerated the change in oxygen flow yesterday. The boys and their friends are all about to drive me nuts. Signing paper work to see if we can get a house that is near the boys school and still close to the hospital.

June 26th - Ava had an eye exam this morning and they sent it to Billings, hopefully nothing exciting on that front. They went down to 2 1/2 liters flow in the afternoon.

June 25th  - They decided to wean again the the dexamethazone today. Stayed the course on everything else. Blake likes to go over and get in his cuddle time with his sister.

June 24th - Today they are changing her from continuous feeds to feeds every 3 hours delivered over 2 1/2 hours so she has a full tummy feel. She did good without her morphine so one less thing to wean her from. 
 I love my brother so much he snuggles me right to sleep.

 Me and my brothers - see they make me happy!
Look how cute i look in my "It's a Preemie" Thing onsie that Linda Humpherys Eliason for the the awesome vynl for colth it works great and she is so cute. Her store is  Vinyl Heartstrings

Today was bath night.
June 23rd -  Well it was a busy day, didn't get over to the hospital in time for rounds as the day started with pumping at 6:30, then off to pick up the bountiful basket at the Heisey Center at 7:30 and then off to see if we could get the boys bigger bikes, that was a disaster which ended in no bikes as they picked them out had them in hand and then were told nope someone else gets them. So they checked out bikes at a couple bike places all way more than mom an dad can pay right now. We also went and got our huckleberry roll and Zane got a porkie at the Farmer's Market. Mom spent the rest of the Morning with Ava and Dad spent the late afternoon/evening with her. Dr. Kenny weaned her dexamethozone and discontinued the morphine today, there is talk of changing her over to bolus feeds on Sunday. The boys also got to go swimming at the Natatorium for an hour or 2 while mom and dad did some shopping.

June 22nd - Mom spent time with Ava in the morning and then the boys and mom went over and spent time with Ava at the 4 o'clock cares. She was a bright eye-d little lady most of the day only napping after lunch. Dad hung out with her after work till the 8 o'clock cares. Only change today was upping her feeds to 14.5ml.
June 21st - 1st Day of Summer - the boys spent it playing wii and with friends outside. They got to go over and see Ava who was fairly happy to be held by big brother. Zane recorded a temp of 99 so he was a good big brother and didn't hold her, although he was sad.

Today Ava is 126 days old or 4 months 5 days. She had a great day. We had PT and learned how to work with her to loosen her up from being a stationary baby for so long. and Dr. Padilla weaned her morphine and  as well as pushed her down from a flow of 4 to a flow of 3 on her oxygen, which she has tolerated quite well today. She is on 14 mls per hour of breastmilk that is fortified with Nutrigemen

The Rest of the Week

June  20th - Ava's bum oxygen treatment was discontinued today, and they decided to try a different concoction for her feeds since she is not having solid poo's. We'll see how it goes. It was bath night again tonight so Mom gave her her bath and then dad and brother Blake got in their cuddle time. Her weight was down  5lbs 4.1 oz. Great Falls NICU didn't like the Seattle lables on the milk bottles so Blake and I set to work removing the ice and re-labeling 69 bottles. Sorry forgot the camera for a pic - it was quite the sight for sure.
Blake Loves that she likes to hold his finger

June 19th - They started to wean Ava's dex and morphine and increased her feeds to 14 to see if they can get her to start gaining. Looks like it worked she's upto 5lb 9.4 oz. She has been enjoying her cuddle time with dad and brother Blake in the evenings.

Monday, June 18, 2012

Father's Day

June 18th - The boys helped sort frozen milk by date and then Blake went with mom to deliver it back to the NICU and see Miss Ava. We ran a bunch of errands and the boys reward was to go to Walmart and get a new Skylander each for their wii game. Mom got some Ava snuggle time about 4pm and after supper we all headed over and helped with cares - weighing her (5 lbs 3.1 oz - no change from yesterday), temperature check, diaper and outfit change and then snuggles with brothers and dad.

June 17th - Robert, Blake and Zane decided to go Fishing. They took Joe with them and went to Cascade - it was too windy so they headed back toward's Ulm - still windy but they tried, they spent most of their time untangling fishing poles.

While the boys were off fishing mom hung out with Ava at the NICU -
Ava sitting up in the Bouncy Seat for the first time - She actually liked it for the most part - she took a 2-3 hour nap in it. 

After taking Dad out to eat we got to go see Ava - Mom found the boys immunization records so everyone got to go in to see sister.

Being is was Sunday - Ava got to have her very first tub bath with the help of the whole family. 

Afterwards she had snuggle time with her brothers and dad.
Checking out Big Brother Blake - she loved it and held his finger which he loved. She had a very happy content expression.

 Brother Zane and Ava enjoyed their time as well.  She was happy to check out Zane. Before she got too fed up with everyone dad took over and the rest of headed for home.

Saturday Drive

June 16th - Ava had a good night and is settling in to her old haunts. They are on the hunt for a mobile for her crib and a swing. She got some tummy time while we took a drive to Lewistown.

Grampa and Grama Heitz were headed to Lewistown to pick up a tank for Grama Betty's place so we met up with them for a breakfast buffet. Our trip took us on a tour of Utica and Hobson as they are doing construction on a bridge between Windham and Hobson. We got to tell Grampa and Grama all about Ava's latest adventures and the fun they had at Cub Scout Day Camp. We also checked out the Junior Livestock Show before heading back to Great Falls.

We learned that Ava was a good girl for the nurses while we were gone and that Dr. Kendra Smith called to check on her. Mom and Dad took turns getting Ava Snuggle time in.

It is great to be home where we can take turns going over to spend time with Ava and spend time with the boys.

Sunday, June 17, 2012

We are going home!

June 15th - We got word last night we get to go home today. I had to pack and clean the room and clean out the fridge and cupboard down in the kitchen at the Ronald McDonald between 7:45 pm and 7am as we were told they would be leaving Great Falls at 6:30 Seattle time. In order to have all the frozen milk in one place I decided to take it all over to the hospital at 9 when they called to have me come sign transport papers. Since I had 2 plastic bins i requested a ride from hospital security who didn't show for a 1/2 hour so we recalled 20 minutes later a Ronald McDonald friend gave me a ride. I got over to the hospital and was told not sure if they will be taking you too. So we called and yes there was a spot for me. So i returned to RMH and cleaned house as well as kept up the nursing schedule. Got up at 5 so I could pump and do the final check out of the room and get a ride to the hospital with my 3 bags of luggage and 2 boxes of stuff i could mail if necessary.

I got over to the Hospital about 7:30 am only to be told by Meg that the flight team was delayed they had to go back and get a little one (they hadn't taken off yet). So it would be later than we thought. I went looking for packing tape for my boxes, Family resource found some brown packing tape and gave me lables to print postage on.

To lesson my load I handed out a bunch of loofah lollies i'ld had sent to myself earlier and gave lots of hugs good bye before the transport team showed up at 12:30ish. They settled the other baby and then came and got Miss Ava. I had all my and Ava's luggage in a wagon and the crew didn't know if we could get it all in the plane when you included the 4 bins of milk - so I mailed the 2 boxes.

Ava in her new ride - she was mad and wanted her binky. 
Unloaded from the Ambulance

Getting Ready to Load her into the Plane

We headed out the door to the airport a little after 1pm with lots more hugs good bye. and we left Seattle from Boeing Field about 2:11 Seattle time and arrived in Great Falls at 5:03. Robert and the Boys met us at the hospital. They let them in to see Ava after we got her settled into her new surroundings.
Mom got settled at home, we had supper and then went over and spent some time with Ava - Dad got to do some much needed snuggling and mom came home and spent time with the boys.

Thursday, June 14, 2012

Getting Closer

June 14th - Happy 15th Anniversary to my wonderful hubby. I'm spending it in Seattle, WA with little Ms. Ava while he spends it with the boys in Great Falls, MT. Ava spent less than 24 hours on the CPAP and was put on high flow cannula. She is doing great with it so far. We are anxiously awaiting a date for going back to Great Falls. Found out at 7:45 pm that We are indeed getting to go home - TOMORROW! 

Ava @ 17 weeks - 119 days old

Sunday, June 10, 2012

Making Progress

June 13th - Cub Scout Day Camp update - Blake hit the Bullseye with the BB Gun and Zane just had fun. Ava was moved from the Ventilator to the CPAP. So we are getting closer to going back to Great Falls.

 Ava on the Ventilator
Ava trying out the CPAP
Can now see her cute little mouth, but not her face anymore. She had a good gas tonight before I left.

June 12th - The boys started Cub Scout Day Camp (sorry no pics cuz i'm not there ). Sounds like they are having lots of fun. Zane says get caught 4 fish - sounds kinda fishy to me. Guess i'll have to believe his fish story since I have no other evidence. Blake didn't have anything exciting to tell me, but sounds like he had fun.

Ava has another ROP exam in the morning. Today  they went down to 25 on her rate and she's on a pressure support of 8, and peep of 5 and her fiO2 is down to 21% which is considered room air, don't remember all her other numbers. They are hoping to excubate her Wed or Thurs. I'm hoping we are getting sent home Thurs or Fri.
June 11th - More moves down on the vent, getting closer to taking it out. Still a very sore little bum, reducing the calories didn't help, they are going to try a 1/2 breastmilk 1/2 ela care feedings to see what happens.
They changed the link to our TV Debut to Preemies Should have Access to Donor Breastmilk Experts Say

June 10th - Miss Ava continues to do well on the Dex and they have been able to to wean her settings even more. She had Miss Alayne today and we brought her some Chokecherry Syrup and Chokecherry Applebutter. Told her she could share, she didn't think so. Spent time cuddling with her in the evening. She has a very sore bum, and very runny stool not sure why they decreased her calories in hopes that would help.

June 9th - Full feeds today. Whoo Hooo! She also got to have her picc line taken out and now is just on the Ventilator (rate of 35 and fio2's from 25 -29). Robert and the boys helped to set up Day Camp and then went to Blake's raingutter regatta. He took 2nd. Very proud of him.

While waiting to cuddle this evening with miss Ava got say Hi to the Great Falls Transport team! They came in and checked in on her as well, but they wouldn't take us home. :( Hopefully soon we'll get to go back to Great Falls.


June 8th - Almost to full feeds. They have been able to make more moves on her vent settings down to 20/5 and a rate of 40. She is keeping her fio2's in the 30's.  Lots of cuddle time this afternoon although she was quite agitated till Nurse Judy gave her some Tylenol.
June 7th - Well mommy finally made it back. She was up to 9mls per hour when I got back and went up to 10mls at midnight. The moved her settings to 23/6 and a rate of 45
Ava - 16 weeks old (3 months 22 days old or 112 days)

Friday, June 1, 2012

3 1/2 months

June 6th - Robert dropped me off at the airport at 5:30 am. I forgot to dump the milk that i pumped on the way up to the airport. When i went through airport security they had to test to see if it was a liquid explosive. I'm happy to report that I am explosive free and am not a danger while flying (i.e. I won't explode).
I got to Salt Lake City only to wait for flight after flight after flight. It was great to see Barbie and have breakfast/lunch.  Do to the over booking of the last to flights as well as how far down the list I was decided to take Barb and Troy up on the Harley Ride and dinner at Spaghetti Factory. I had fun riding with Uncle Troy and some how fit into Barb's leather gear with the help of Kasey.

All is well in the Ava world and Blake and Zane world. They did make a move on Ava's vent settings down to 45 instead of 55, and down from 6 to 5 on her peep. She had her eye exam today and the Dr. wants to see her again in a week. So much for going home this week.
June 5th - Ava is now progressing to an additional ml per hour every 12 instead of every 24 and is continuing to improve. Her TV debut was tonight on King 5 in Seattle.

Today Zane performed in a talent show with his class and the other 2 classes. They sang a really cute song about a salior with really cute actions. It was hard to see Zane as he was in the back row instead of the 1st row. I could see him but couldn't get a clear picture.

Went and looked at a house near the boys school. I really liked the location and  the layout of the house, but it needs lots of work for the price they are asking and we can't afford the offering price plus fix up costs.
June 4th - Was nice to be home. Was able to have lunch with Robert, found some cute clothes for Ava. After lunch I returned a cooler to a friend. While doing that got a call from Seattle Childrens' Hospital in regards to our insurance to start paper work to bring Ava back to Great Falls. After hearing this i stopped in at the Great Falls NICU to find out if they'd heard the same rumor. She will get to come back when opthomology gives the go ahead and if they decide she can be weaned from the ventilator.

I picked the boys up from school so we could go to walmart and get some day camp necessities. Ran into a friend from last summer. Have her number if we need help with the boys.

Ava is still doing well and behaving herself while mom is away. They keep increasing feeds by a ml per hour per day. She has had good gasses and continues to hold her own.
June 3rd - Enjoyed visiting with everyone at Church, then we headed over to the Korona's for the End of the Year Pack Picnic.

Zane - recieving his Tiger Badge
Blake recieving his Webelo's Badge

All the boys after crossing over from Tigers to Scouts.

Ava had a good day. She is up on her feeds another ml per hour. They gave her lasiks and her nurse forgot to double diaper so she got to change all Ava's bedding and Ava. 
June 2nd - Got to go to the 1st Farmers Market of the Season and say Hi to lots of people. Got to have my huckleberry roll, picked up some banana bread and the boys each had a baked good as well as some of Alma's famous fudge. Zane on a porkie (pork on a stick - love it hoped he'd share but he didn't). 

Made a stop at the NICU to return some items and say hi to Ava's doctor and nurses. Spoke with Doc. Ridel who said to give Ava lots of hugs when i get back (which i plan to do) and is hoping she can come home soon too. 

Had a great visit with my best friend as well, called her and wished her a Happy Birthday a day late since I didn't have time to do that on her B-day yesterday. 

Picked up our 1st bountiful basket which had broccoli, lettuce, garlic, avocado's, tomato's, pineapple, nectarine's, bananas and oranges. The boys took mom out to the Best Wok for supper and Blake and Zane ate with chopsticks, they did quite well, I'm not that talented. Quick trip to the store for ice cream to make Pineapple/orange milk shakes - which were very good by the way.

Ava has been a good girl she got to have 1ml per hour of milk. Her plumbing is starting to work all on its own and I'm told that the NICU nurses were very grateful for the cleaning staff to wisk away Ms. Ava's garbage :). Her aromatic diapers were wafting into the hall.

Robert worked on cub scout advancements. 
June 1st - I got to fly home it was a long day. I had to be up and at'um by 4 am so I could make sure i had everything and to greet my shuttle to the airport at 4:50 am. It showed up at 4:40 so I had to hurry some things along. I made my 7:15 am flight to Salt Lake City and then due to the overbooking issues on the 11 am Great Falls Flight got my ticket changed to the 11:06 am flight. Robert graciously came to Helena on short notice and we made it back to Great Falls in time to take part in the 4th Grade Wax Museum. Blake was William Clarke.

William Clarke (aka Blake) 
This wax figure melted as soon as he saw his Mom - His little brother was quite excited too. After school and catching up to all they had been up to, we went and looked at a couple houses - we really liked one of them except we can't figure out where our freezer would go as there is no garage and not enough room in the laundry room for it. 

Ava had a pretty good day. Still no feeds, but she is starting to have more bowel movements and lots of gas so we are encouraged that soon she'll start to work up her feeds.
May 31st - Today Ava is 3 1/2 months old. She weighs over 6 lbs and is starting to be more alert. For now she's a night owl. The Doc's didn't change any of her vent settings or start her on feeds as surgery wanted to wait another day. Hopefully they will start feeds tomorrow. We had a good cuddle session this evening. She definitely does not like to have a wet bum. She did have some poo in her diaper this afternoon which is great as she's been a gassy girl which is a great sign that all is working as is should. She can also make noise around her tube sounds more like a squawk but its sound so we know her vocal cords are working.