Some how this week got by me. Maybe it was cuz her brothers were with Grandpa and Grama and i got in lots of extra cuddle time. I'll try to remember some details about the week. Somewhere in the week they weaned to 3/4 of a liter flow and then down to 1/2 liter flow and also weaned her completely off her prednilizone. We also switched to a different vitamin that she will actually digest and not separate and spit up or discharge through her diaper.
July 12th -Ava is now 6 lbs 6.5 oz.
July 13th - Something happened this day, just not sure what. I'm sure I spent time cuddling with the little miss and daddy fed and cuddled her too.
July 14th was fishing with the pack but do to the early rain no one was brave enough to show up and try to catch fish. Robert helped the Cochran's rebuild their back deck. Me, Abby and Doris supervised. Stayed out of the way and watched. It wasn't complete when i headed back over to feed Miss Ava who got her MMR shot today.
July 15th - Made most of Church skipped out on the last 15 minutes of Relief Society to get in a Nursing session with Ava, she latched a couple times but was mostly interested in being social. She weighed 6 lbs 8.1 oz. and was 17.25 inches long.
July 16th - Ava had a eye exam this morning, got it done early this week, and only had to do it once. Left eye didn't want to dilate well. The boys headed over to visit their cousins, sounds like they are gonna spend the night.
July 17th - Bath night and snuggles with daddy as usual. Dad's been able to get her to drink from the bottle better than mom and the nurses. She really likes her daddy. Grama and the boys spent the night again tonight and are all but Mr. Neale headed back to Grampa's tomorrow.
July 18th - Hung out at the Mini Golf with some cub scouts, they had a good time and were well behaved little boys. even though it was extremely hot. Well all the kiddo's and Grama and Aunt Lynn made it Glendive much later than anticipated Aunt Lynn and a bad day, pick ups not starting (dead battery), had to run to town to get a swather tire fixed, and the list goes on. She got one vehicle picked up and headed home and the kids and Grama headed back to Fallon for the night.
July 5th - Ava is now up to 6lbs. Her Dexamethazone was discontinued today and put on predlyzone. She had a echo on her heart to check up and make sure the steroid use hadn't inflamed her heart. We looked at house in the Castle Pines Subdivision and made an offer. Hope to have an answer on Friday. She took 16mls of her 50 mls.
140 Days - or 4 months 19 days old.
Ava decided to try her own room air trials by removing her cannula. Didn't go as well as she expected.
July 6th - Our Offer on the house was accepted after some negotiating. Ava was weaned to a flow of 1.5 and is doing well with it. She is also getting 3 feeding per day - 1 per shift from Dad and Mom and one from the nurses.
July 7th - Ava finally was given 2 of her 2 months shots. Blake and Zane got new bikes from Walmart since they could not find ones that fit them at the Optimist Club. In exchange for getting new bikes they gave their bikes away to their friends Justin and Riley.
Grampa and Grama Heitz arrived this afternoon and visited with Ms. Ava and the rest of us.
July 8th - Grama and Grampa took us to the Gates of the Mountains. On the return to the Marina the boat Caption and Tour Guide let us get out at Coulter Picnic Area and the boys checked the water out. We headed back early as Zane's foot was sore and Grampa headed on to Helena for his eye apt. on Tues.
July 9th - Ava got to snuggle with Grama Teri (Heitz) although while transfering her to Grama she got a nose full of water and Grama thought we were gonna drowned her. She took almost a full feeding from Nurse Shirley today. Zane had an apt. for his foot the Doctor who was filling in for Doctor Garver gave him a prescription ointment hope that clears up the infection and heals the scratches.
July 10th - Grampa made it back from Helena to pick up Grama and the Boys. They took a tour to White Sulpher Springs and toured the Castle there. Sounds like they had a lot of fun.
Castle in White Sulpher Springs
Before they left Ava transferred from the high flow cannula to the regular flow cannula. She was very helpful and held the little air mask. I got a picture of her doing it but forgot to save it. She is still on a flow of 1.5
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
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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?
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
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
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.
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.
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.
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.
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.
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!
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.
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)
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.
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.
May 30th - Today day Ava had her ROP exam. Right eye showing improvement, left eye at least doesn't need surgery. She still wants to see her again next week and then hopefully a follow up in 2 weeks after that. Not excited about the 3 more weeks of time in Seattle.
Ava has a cameo in another segment on King 5 - Mother's Voice Helps Premiee Thrive the cute kid in orange is Ava and i'm sitting in the chair watching her or the monitor.
May 28th - Missed Ava's rounds while i was visiting with and saying good bye to Montana friends. They are able to take their cute baby boy home today. Wishing them safe travels. I was told there was quite a discussion as to whether to adjust Ava's vent settings and discontinue the arbutrual (sp?), in the end they didn't mess with her settings (although i would like to see them try to wean her) and the arbutrual was kept, at my suggestion it might be helping since she's been able to maintain her stats with out detstating as frequently as before.
Had fun with Dottie, Renae and Khi while they were here for a short visit, bringing back the milk that was in their freezers and between moving Renae & family out of their apartment.
May 27th - Had some snuggle time with Ava, no new antics from her she was well behaved today. Nurse Susie was happy about that. They did make a move on her vent settings today, praying she has a good gas in the morning and we can continue to work her off the vent.
May 26th - Today was quite interesting. Ava's care stayed its course no major or minor changes. She had an episode of major discomfort at noon cares when the nurse went to check on her incisions so some morphine was given. I had forgotten it was time to get more meds and had to have the doc on staff for the NICU write a prescription for me to pick up from outpatient pharmacy. After snuggling with Ava for about 2 hours I had her put back in her bed and headed down to pharmacy to see about my med's. I returned about 15-20 minutes later. The nurse had started Ava's cares when I'd left and when i got back she say's Ava has a present for you, me thinking cool she had a smidge of poo. Not so fast - Look what Nurse Susie has for me.
This is her piv that was in her hand yesterday and part of today. Nurse Susie had done her cares and as part of that she gave Ava a Tylenol suppository, well even though this makes her tummy not hurt as bad, it makes her mad. Ava was swaddled and Susie noticed blood on her tube that attaches to the vent, thinking she had just scratched herself in her mad rage she unswaddled her as she did so Ava finished pulling off the piv and waved it at her. True story - and she's only 3 months old. Ava also made squeaky noises at noon and again about 7:40 pm today. I heard sounds and thought is that Ava, sure enough when i got up to check on her she was mad and squawking about it all around a tube in her throat.
This was just a distraction technique - She had the night nurses get mommy some cupcakes for her birthday with a card and had them sing Happy Birthday to mom. What a sweetie.
Not to forget my boys they sent me cars birthday cards via email, Blake even sent a me a power point on cool cars he made himself. Then this morning they called and sang happy birthday. Had birthday wishes from family and friends via facebook and phone calls too.
May 25th - Ava is being Ava, she does seem a like she has some discomfort, but as a whole she's doing well. The nurses can her bowel sounds so that's a good thing. Just need to get some action so we can get her back on milk feeds. Forgot to get a picture of the little miss yesterday but the party seemed to be in her room most of the time.
Today her trick was to kink off her PIV line in her foot. She was dislodge the cotton balls meant to deter her and then kink the line with her toe. She did this a few too many times and the line failed thus requiring a new PIV line in her hand to complete her blood transfusion. She broke the tape on the top half where it was taped to a support board, so more tape was applied. Hopefully this will hold.
May 24th - Long morning. Got over to Ava's room about 9 this morning, the staff hadn't even had their huddle yet, it was about 11:30 when we finally rounded. Ava's the life of the party, today she had a nurse in training and 2 RT's in training all in the room at the same time learning, it's a good thing she's in a bigger room. She also had lots of visitors from the staff as everyone is excited to have her whole again and they all want to come by and say Hi.
May 23rd - Ava had went into surgery at 11:20 am this morning, she was 2nd case surgery then 1st then 2nd. She did great, and surgery was complete by 1pm. Although it took some doing for mom to get from 1st Floor Giraffe to 4th Floor Train to talk to the Surgeon as there was a fire drill got an escort from one of the gals at the front desk of Train. We worked our way from Giraffe 4 to Train 4 through the back hallways.
May 22nd - Today Ava is 40 weeks gestation - It's her due date. She weighed 5lbs 1.8 oz. and was 16 inches long. We tried to get good footie prints several times today. Talked to the doctors about her surgery tomorrow for reconnection - reostmois - they will try to use the same incisions and it will take approximately an hour and a half. She is scheduled for around 10 am - as she is the second surgery. Will know more tomorrow.
May 21st - Seems like we're just treading water. They upped her to 9 mls of milk per hour but nothing else changed. She does have a surgery date for reconstruction for Wed morning. I set up a account on gofundme.com as i really want to go home to visit the boys and Robert but tickets are expensive the link to donate is http://www.gofundme.com/oc190 If i can get a cheaper ticket and there is left over donations know that your still helping as although i'm staying at the Ronald McDonald House there are expenses such as meal, medical, and clothes for Ava. Since "Uncle" Ian was her nurse tonight i asked what she weighed and her length. She is 16 inches long and 5 lb. .2 oz. getting to be a big girl for sure.
May 20th - Ava had a pretty good day, not much to report, as she's still on the vent with the same settings they did up her calories per ounce, no word yet what day surgery will be. "Uncle" Ian the nurse let me hold last night before weighing and measuring, he did that around midnight I'm assuming.
May 19th - Ava continues to make slow progress. She is up to 8mls per hour on feeds, and her vent settings are still pretty much the same. Robert and the boys where gonna have supper with the Girl Scouts. Will be interesting to here all about that tomorrow.
May 18th - Ava was taken to radiology at 9:30 am for her study to determine if she is able to have her ostomy/stoma and fistula reconnected sometime next week, she was back by 10 am. There was a Pulmonary Specialist in the house that came a talked with the doctors about a couple babies including Ava but from what i gather not much was gleamed that they aren't already doing.
Her due date is coming up fast and I thought it would be fun to do a Due Date Certificate - so i spent a good chunk of my afternoon creating just that. (picture later). Will have it filled out on her Due date on the 22nd as a keepsake with her footie prints on it, and maybe even a hand print if we can get one.
May 17th - Today Ava is 92 days old or 13 weeks. She weighed 4lbs 12 oz.
Today wasn't much different other than they cut back on her calories and are trying a 1/2 & 1/2 mixture of a specific formula and breast milk. They did go down on her pressure support on the vent and she seems to be tolerating that, still has a long ways to go. Good news moment was when Ellie her primary resident in training came in and told me that the surgery team has confirmed that they will be reosmosing Ava sometime next week. No date was given but she will be put on the surgery schedule baring any emergency surgeries.
Robert, Blake & Zane spent time with Grampa and Grama Heitz at their hotel swimming and soaking in the hot tub and telling them all about their visit to see Mom and Ava in Seattle, WA.
May 16th - Nothing new to report. Ava is still on the 6 mls of milk no change that. They may try tweeking her settings on the vent, not sure what they will do. I hope something. I feel like a gerble running in place on the wheel.
May 15th - We got filmed today for a breastfeeding premiee segment. I talked about the antiboties and that it reduces her chances of child hood caner and diabete's. Will share a link to the facebook & website when it airs on King 5 news.
May 14th - More of the same, seems like we are little gerbles running in place. She did move up to 6 mils of milk other than that staying the course of antibiotics and keeping current vent settings. I'm told Zane says she's supposed to come home in 2 weeks, I sure wish that would happen, but not likely.
Tommarrow is the big day for the interview for King News to talk about the benifits of breast milk to Premiees, sure hope that all goes well, I've never been interviewed or on TV before.
May 13th - Happy Mother's Day. I got a card from little miss Ava this morning, before rounds, which she was kept at her current settings for everything today.
I got to go on a Chocolate tasting tour and learn about several chocolatiers in Seattle. Bought some raspberry popcorn. After wards we had lunch at the Serious Pie (Pizza) and walked the Pike Place Market, picked out some flowers, got Lea a ice cream cone and bought some chocolates at Frans.
May 12 -Ava was able to chill today. Mommy would have liked to have held her but decided that it was better to let her chill and give the antibiotics do thier magic. I also was able to get some rest as well. They also decided to put her back on TPN and keep her at 5 mls an hour as she wasn't absorbing her milk properly and most of it was going straight through her.
May 11th - Its been a long day for Ava, we had rounds and mommy let her chill in her bed. The afternoon brought lots of excitement as they worked with her to draw blood, took a sampling from her vent tube, and and redid her colostomy bag. She also had a lot of thick secretions in her mouth and a CBC that showed elevated levels which indicated she has an infection. Her work up and bag change took several hours. After they were done mommy and Ava had some snuggle time. On a good note she is back on feeds after surgery and slowly working back up to 11mls.
Today at rounds there was someone who came to observe if the Parents, Nurses, Dr.'s extra work all communicating about the patients care. Definitely got a glowing report as I was asking questions, the nurse was asking questions, pharmacy and dietitian had questions concerns and the Dr. and Resident Dr.s were all listening and communicating.
May 10th- Ava is having laser surgery on her right eye to correct ROP, which began at 11:30 am PST. Hopefully we will be able to be transported back to Great Falls in 4 weeks if everything goes well and we don't have to have surgery on the left eye, we are also hopeful that the surgery doctors will decide to re-osmosis before going home as well.
I'm told Surgery went well and they were done and out there by 2pm. We'll know more when she has a follow up eye exam next Wed or Thurs.
Moosie giving Ava a hug. She didn't like it much, especially that he was as big as her. She is 15.5 inches long and about 4lbs 11 oz. @ 12 weeks and is tolerating feeds of 11 mls per hour @ 28 Calories per ounce.
May 9th - Well Ava's prayer and mom's weren't answered the way we wanted. She will have laser surgery on Thursday to help correct the ROP in her right eye. Her left eye does not need surgery at this time. This new development will keep us in Seattle for at least another 4-5 weeks, longer if we later need to do surgery on her left eye as well.
Ava although tolerating the 12mls of milk per hour is not absorbing all and it is causing her to have very wet stool, so they decided to go back down to the 11mls per hour.
On another note King County News will be interviewing me next tues on what/why I believe in breastfeeding and the benefits to Ava as a preemie. Not sure when it will air and hopefully I can get a copy or link to the aired interview.
May 8th - Ava is now on full feeds milk wise and calorie wise that will probably happen tomorrow. Today's funny for rounds was discovered after wards, and will be shared tomorrow with Ava's team. Just as rounds started i received a call from a Montana number, but put it on silence. After wards I called the number back to find out it was one of the nurses from Premier Pediatrics - Dr. Garvers office wanting to know if we were following up on the eye exam. We did discuss that she is scheduled for an eye exam again on Weds. so i was able to tell the nurse that yes we had been following up and that she was to be seen on Wed.
Little Ava - Looks like she's saying a little prayer - hope its that she gets her plumbing hooked back up soon and that her eye exam goes well tomorrow.
May 7th - Well no big events here in Seattle, WA. Ava is now 4lbs 11oz and still 15.5 inches long. She has been moved up to 11 mls per hour on feeds, almost full feeds. Feels like we are in a holding pattern here, as we haven't a clue what surgery's plans are, we are waiting the results of Wed.'s eye exam, and no progress or attempt has been made to get Ava closer to getting off the ventilator.
Grama called just before I was headed to rounds to tell me about Grampa using to short of clippers and giving himself a reverse mohawk, to short to go out in public. This was shared at rounds as the doc wanted to know what was so funny.
We heard that Blake, Zane and Dad had a good time at the Cub Scout cookout at the Wills home cooking hot dogs and smores.
May 6th- Today's big event was that Ava was moved up to 10mls per hour and the TPN taken off. I had made the comment to Nurse Sara last night that Ava's stoma(ostomy) and fistula were trying to reconnect themselves and some how Dr. Ryan McAdams got wind of it and thought it quite funny. Ava weighed 4lbs 6 oz. last night. As it is Sunday Ava will get her full work up tonight and we'll find out weight and length.
Before - with Medline pump & tpn/pump on pump pole
After with only the milk pump and the medline pump - more space
And yes we do have a window with a view - mostly of the new addition to the hospital, but you can see some trees too.
May 5th - Ava is still on 9mls of milk up 28 calories per once. Same vent settings. She destats quite regularly even when mommy is holding her, but is able to bring herself up most of the time without being given extra oxygen. She had her favorite nurse Alayne today, but didn't see her much as she was busy with the other little girl in our shared room.
May 4th - Ava has been opening her eyes more and more often, but usually at night when i can't take pictures, but i was able to get some cute ones today before she had to be re-taped. When I came back from lunch today my nurse asked if I'ld be interested in being interviewed for a special on breast feeding and benefits. Apparently one of the Seattle news stations media persons contacted the media relations at Seattle Children's Hospital wanting to interview a mom in the NICU so they contacted Ava's Doctor's who decided that Ava and I were the best ones to talk to. So we agreed and Lisa will be contacting me sometime Monday about setting up a time.
May 3rd -Ava is now 11 weeks old. We had a busy day Rounds which it was decided to keep her at She is still on 9 mls of milk per hour 24 calories per ounce. Pulmonary came and did a bronchial scope with a teeny tiny camera to see if she had floppy airways as they say. She passed with flying colors for NO floppy airways, so still no closer to figuring out how to get her off the vent tube. Thanks to a wonderful lady by the name of Linda Childs I was able to go pick up some groceries and use one of my WIC coupons. Maxine, Nancy, Kayla and Maddy came down from Mt. Vernon for a visit and brought me the most awesome diaper bag! I'll have to take a picture of it and explain it more later. We we're gonna try the Melting Pot restaurant but it was a 45 minute wait to get a table, so we decided we'd try it another time when we could get a reservation first. Instead we had Thai food across the street, since we had already had the car parked and it was raining it sounded like a great choice, which is was.
