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.

Friday, March 23, 2012

Ava's Progess & Grampa

March 28th - Upon arriving at the NICU this morning I learned that Ava had to give up her room and moved to another room which she shares with another little baby. She didn't like sharing at first but she got over it. I also learned that during the night around Midnight they stopped her milk feed as she wasn't digesting it all, this is common after surgery for them to take a little extra time getting everything working like it should. At rounds it was suggest that she get the Synagis shot to help prevent her from getting RSV, it won't totally prevent it but will definitely keep her much more protected during the RSV season. She also was ordered a blood transfusion so mommy didn't get any cuddle time. Hopefully I'll get a chance later this evening after cares.

I learned from Dad that the boys did a disappearing act at school and their ride had a hard time finding them. All is well and they were found. Dad took off from work to help locate them and since they didn't get as much playtime as they wanted he let them stay a little longer at the Olsen's.

I know everyone wants more pictures. I'm taking them, just don't have a way to upload them right now. Hopefully when I get my camera cable I'll be able to upload some. I have some on the old phone that will have to wait till we are sent home. Not sure when that will be.
March 27th - Today Ava would be 32 weeks gestational age. She had a good day today. Now 9 days post surgery she is allowed to have milk. She gets 1/2 ml per hour through a feeding tube and is on continuous feed. She is still on the vent tube but seems to be doing well with it, her blood gases have stayed within approved limits and her oxygen saturation levels are low which is good. They did a cystic fibrosis swab today, hope to know more of the results in the next couple of days at rounds.


March 26th - The are discontinuing more of Ava's meds and others are staying for a few more days. She's been stable today and got to snuggle with mom for  2 hours this afternoon. They are doing more testing to rule out cystistic fribosis as the cause of her bowel perforations.

Grampa got released from the hospital today. Grama reports that he wants to do a bunch of things instead of going home and resting up. Hope he doesn't over due it and end up back in the hospital.
March 25th - Today Mom talked to Grampa Heitz and he says that all the pain is gone and that they will be discharging him tomorrow. Had a good visit with Sharon Schmidt as she was in visiting with Grampa Heitz. Told Grampa to accept hugs from Kelly and Patty since I wasn't there to give them myself.

Mom got to have about 40 minutes of kangaroo snuggle time with Ms. Ava. She is so tiny. 2lb's 8 oz's looks tiny just to look at but is even tinier to hold.  Hope she feels up to it again tomarrow afternoon. Mom has an over abundance of milk in the NICU freezer and not sure what to do, have tried the milk banks but thats a no go, tried an online network that didn't work either not sure what to try next.

Mom & Ava snuggling

Cousin's Dana and kids Tyler and Jessica came up to visit and see little Ms. Ava. Mom had requested some items little things like finger nail clippers and some yarn and crochet hooks and they were kind enough to get them for her. They then took mom out and we did a little baby girl shopping and picked up some cute outfits for Ava and some Blankets and socks as well.

Dad looked at houses in Great Falls and Sun Prairie, he succeeded in weeding out a few more prospects. Hopefully we'll find one soon.
March 24th - Ava tried out 3 different CPAP's overnight and then ended up going back on the ventilator that is inserted in her throat after lunch today. She seems to do the best on this one for now. She is getting stronger each day and is up to 2lbs 8oz. she has gained 7 oz. since she arrived in Seattle.  She is quite the little Diva and keeps her Nurse and RT on their toes, should be an interesting night when I deliver milk.

Mom Glenda got a chance to get out and see some of Seattle today as is was a nice day, no rain. Cousin Dottie and her Daughter Ranae, SIL and little Malachi took her down to the pier and then we checked out the Pike Market and got the boys Seattle Hat's and Shirts and a Shirt for Ava. We enjoyed pork on a stick, cinnamon rolls and pirosky's.
 Down by the pier
Pike's Market

Dad Robert, Blake and Zane had a busy day today too. They had swimming lessons, put bags out for Scouting for Food and went and looked at some houses.

Grampa had 2 blocked arteries and the doctors put in 3 stints. I talked to him this evening and he seems to be doing well and is in good spirits. He's had lots of company from the Schmidt family who is all in Billings on the same floor visiting Laurine. Thanks Roscoe & Sharon for beining there for us.

March 23rd - Ava moved to CPAP vent through a cannula. She seems to be overall puffy, even her face is really puffy, I hope they give her a diuretic to help with the puffiness. The inscion area looks infected and seems to be pulling open they are watching this and treating it with antibiotics as well.

Grampa Glenn had a heart attack. He had been feeling pain in his arm and chest and decided to go to Miles City and check it out, they treated him for a heart attack and he was flown to Deaconess in Billings by MedVac from Miles City. He was coherent and Lynn and I were able to talk to him on the cell phone before he was flown out. Mom stayed behind and awaited the doctors call that he arrived in Billings and then headed home for some rest and to get stuff for Dad.

March 22nd

Today Ava is 5 weeks old. She is doing quite well post surgery. She does have a little infection around the incision are they are treating it and keeping a close eye on it. They are weaning her off the morphine and her ventilator settings have been awesome. They do have her on her side to help improve lung inflation on her right side hoping they don't have to increase the pressure on her lungs. She will hopefully start feedings through a feeding tube on Monday.

St. Patrick's Day and Ava's Newest Adventures

March 21 - She's down to room air oxygen level today! Sounds like we will be here for another 2 weeks or so. She can't have milk till 7 days after surgery and then they want her up to 1/2 feedings before they let us go as the want to make sure all is going well and that she won't need to come back right away. First milk feeding would be coming up Monday.

March 20th - There has been no drainage from the chest tube drain so this was not the problem. They re-evluated and have increased the pressure on the ventilator. This seems to be doing the trick, it may have just been that her lung was under inflated and had collapsed. Dottie and Ranae came  to visit and bring my meds. We got out and had some ice cream at Baskin Robins. Ranee took a picture of Ava in her grannie pants - premiee diapers are still huge on her but the x-small premiee diapers don't hold all the pee so that they don't have to constantly change bedding they've put pampers premiee's on her.

March 19 - I was awoke at 2 am by the pager the Doctor on shift suspects that there is fluid on Ava's lower right lung. Her previous x-ray shows the entire lungs well. They took another x-ray as here right arm which has the PICC line is all puffy compared to her other limbs. They think she is getting fluid from that and have removed the PICC line and wanted to put in a Chest Tube Drain. So chest tube drain it is. I got to hold Ava while they took out the open isolete and brought in the closed isolete. It wasn't really holding but you take what you can get.

March 18 - Ava got to have her first airplane ride today. She was flown to Seattle Children's Hospital. This morning at 8 am we recieved a call that we needed to come to the hospital as they felt it neccessary to send her to Seattle as the mornings x-ray showed air in her belly which indicated there was a perferation.

 Heading to the Airport
 Ava's private jet.

Getting Settled into the Plane.
In Seattle at Seattle's Children's Hospital
On March 17th -  The silly leprechaun turned out milk green this morning so we had green cream of wheat and for supper we had green eggs and ham.

We went to Walmart today and Blake and Zane got to pick out her first outfits for when she's ready for clothes. Blake picked out a cute purple outfit with little flowers and Zane's is white and purple that says "Little Sister"

Ava was taken off her feeding tube again, although she's digesting her milk, she's not having bowel movements and so her little tummy was getting very round. No milk left in her tummy and she wasn't bloated this time. They are beginning to wean her off the steroids she's on for her lung development.

March 16th -

March 15th - Today Ava is now 4 weeks old. It doesn't seem like she's been with us a whole month.

sigh...haven't gotten to see Ava today, by the time i got the boys sent out the door for school, showered and did the mechanical nursing it was time to go to dr. appt. then home for lunch, more mechanical nursing, off to see Ava - but they were changing her oxygen set up, we waited but had to leave for the iep mtg. which took till 3:45 then brought the boys home to get their jump rope for heart donations, dad took them back, and I stayed for more fun mechanical nursing, dad and boys returned, he left to see Ava and i know have 6 more oz. of milk in the freezer, and thanks to Cristen and Roxie we have supper so maybe i'll get over to see ms Ava who is now 4 weeks old (30 weeks & 2 days gestation) during cares at 7:30.

Finally made it over, but not in time for a picture of her on her back all comfy, maybe tomorrow. She is doing much better on the new machine, not sure if you call it an upgrade or a down grade, but she's much happier for now, her numbers came up faster with less added oxygen.

3 Weeks Old

March 14th -Ava is still on the CPAP - but may have to be taken off and put back on a different type for awhile. She is back up to 5mls of milk and doing well with that, she will increase to 6mls tomorrow afternoon

we have a very busy thurs - with Ava care time, a dr. appt., iep mtg. for B. and of course regular mechanical nursing - would any of my GF friends want to help us out by bringing us supper? We're not picky :).

March 12th -
so we thought all was going well with ms ava, but tonight she decided to have one of her moments - i.e. keep the nurse in her room cuz she doesn't want to be good with her oxygen saturation levels. May have to go off the cpap for awhile if she keeps this up. Prayers appreciated

March 9th - She is up to 1lb 15 oz and 12 3/4 inches. She's been on the CPAP machine for 48 hours - YAY! and will start getting milk again tomarrow.

March 8th - Ava is 3 weeks old and growing.

Pinewood Derby Races and Ava

Wow She's been with us for 3 weeks can't believe how time flies

(Mar. 1st - March 7th)
March 6th - Miss ava has has a rough couple of days. last night and Today has been much better. The doctors did decide to put her on a steroid to help her lungs to hopefully start to develop and get her off the current ventilator and on her way to breathing completely on her own. She is upto 10 mil's of milk every 3 hours and they will be increasing it by 1 mil every 12 hours instead of every 24.
March 3rd - District Pinewood Derby Races - Race day. The boys had a good time at the District Pinewood Derby Races. We didn't win but we did our best.

March 2nd - The boys readied their pinewood derby cars, truck and boat for the pinewood derby races and we took them down and entered them.

Zane with his Boat and Car - Blake with his Car and Semi

I know the pictures are sideways but i can't edit them on the SCH computers

March 1st - Ava is now 2 weeks old. We are starting to get a routine of sorts. Dad goes to see her in the mornings and delivers milk if needed, at lunch with Mom and then on his way home. Mom tries to get over in the mornings after getting boys off to school, getting her own breakfast and taking meds, getting through the shower, making phone calls, and adding milk to the freezer. Mom and Dad also go over for Cares at 8pm.

Ava update - I know its been awhile since I gave one. She's is still on the ventilator, no improvement in her lungs as of yet. She is able to digest 4 mls of milk every 3 hours and they increase the milk by 1 ml every 24 hours. She can spend some time on her tummy and she loves that.

Ava and The boys

I will add more here as i have time.
(Feb. 23-Feb. 29th)
Feb. 27 -
Ava Update - Today she's struggled with breathing as she develops her lungs. She had a severe case of lung disease at birth and will struggle more to get them healthy and developed properly. They have been giving her 1ml of milk through here feeding tube every 3 hours up from 1 ml every 6 hours. We're told she likes her milk :).

We enjoyed Blue & Gold with Pack 7. Everyone was asking about little Miss Ava pictures were shared. The food was good and the Presentation of the Flags and Awards was fun to watch. The Tigers had a skit they shared with us too.

Flag Presentation and the Story Of Cub Scouting by Andrew Cochran

Learning the story and Meaning of the Colors of the Nickerchiefs

Feb. 24 -Ava Grace update - Ms Ava is taking to all treatments and changes very well. Right now they are concentrating on strengthening her lungs. She seems to keep changing machines regularly, she is now off the ventelator that she was on, they had her on a cpap type machine most of this afternoon, as of this evening when dad went for cares it had changed again all to help her lungs grow and get stronger. They have started to give her 1ml of milk every 6 hours to start "waking up" her stomach as they call it. I guess I know what i'll be busy doing in my spare/non spare time. As for me My mom is taking good care of me, and making sure I get the rest i and care I need.

Feb. - 23 - Ava is one week old today.

Picture in On my Phone :(

Our First Week

I will be adding more here as i have time to fill in the voids. Since i have not been keeping up like i should or started when I should i'll try to fill in from my scattered memory and post pictures when I get home.

Pictures are on my phone which i don't have the cord for.

Feb. 22nd -

Feb. 21st - Ava is 27 weeks gestation today.

Feb. 20th - I finally got the go ahead to go home. Robert came and got me arround 4pm. I checked out after going to see Ava. We took the perscriptions for Mom and dropped them off at Walgreens. I got to have supper with the boys, dad and Grama.
Feb. 19th - Mom had a few Visitors - Carolyn and Jerry came up and visited while my mom was there. Had a good visit. Showed them the pictures of Miss Ava. Ron & Kathy Colwell and Cathy Korona came up and visited mom as well. Mom got down to the 6th Floor to see Miss Ava a couple times through out the day.
Feb. 18th - Dad, Grama and the boys came to see Mom and bring her clean clothes to wear. Aunt Marybeth and Cousin Jennifer sent beautiful flowers to brighten Mom's room. Thanks Joyce Hogan for delivering Jennifer's flowers. Bishop Brewer and Brother Giles paid Mom and Dad a visit in the evening. Dad also brought mom the kindle fire and the charger for her phone.
Feb. 17th - Dad was able to take Mom down to see Ava. It's quite surrel to see your little one hooked up to so many machines and not be able to hold them. I was able to get and atleadt touch her. Grampa & Grama Heitz and Aunt Lynn came to see Mommy and Ava for a little bit. Grampa and Aunt Lynn headed to Billings for the MATE show and then on home. Grama is staying to help take care of Big Brothers Blake and Zane until Mom is healed up. A big Thanks to Sister Mecham for bringing supper over for the overwhelmed Daddy and visitors. Blake and Zane hung out with Andrew and got to go Rollerskating. They had a lot of fun skipping school.
Feb. 16th - Ava Made her enterance into the world. See previous post for all the details.

Thursday, March 22, 2012

Ava's Story

February 16, 2012

Ava Grace Burton was born on February 16, 2012 in Great Falls, Montana to Robert & Glenda Burton she joined her 2 brothers Blake and Zane. When she entered the world at 4:26 pm she weighed 1lb 7oz and was 11 1/2 inches in length.

Her story beings when I went in for a routine Dr.'s Appointment on Thurs. Feb. 16th at 10 am. I had the previous day been congested and had sinus pressure as i was starting to come down with a cold. The nurse in training at the Ob Clinic checked my blood pressure and it was high so he asked the nurse he was shadowing to recheck, she to got a high reading. Not sure the exact numbers just know the top was in the 200 range and the bottom in the 100's. The called the Dr. who was at the hospital delivering another baby. They sent me over to Benefis to be monitored. I called Robert to let him know i was being sent to the hospital for observation. I was admitted to Delivery and hooked up to a fetal monitor to monitor baby (didn't know it was a little girl yet), don't tell the boys they said they were having a little sister all along. They continued to monitor me and ordered an ultra sound on the baby about 2 in the afternoon. I called Robert to see if he wanted to come over to see the ultra sound since the 2 before he had not been able to make. He said he'd get through the shower and head over - he had stayed home from work as he was still getting over the cold i was coming down with. He managed to get through the shower and upstairs but sat down on the couch and fell asleep.

The baby was measuring 23 - 24 weeks instead of 26 weeks. A team of doctors came in and said that I need to deliver the baby that day. It was close to 3:40 pm and about time for the boys to be getting home from school, I asked the doctors if there was time for my husband to find someone to come stay with our boys and for him to come to the hospital since we live 2 blocks from the hospital. They said that would be fine but he would need to get there as soon as possible. I called  Robert and told him  that he needed to call Grama Cathy to come get his boys and to come to the hospital ASAP. While he was doing this the nurse prepped me for surgery. When Robert got there the Doctor's quickly briefed him handed him his scrubs, and wheeled me into surgery.

Little Miss Ava was then brought into the world - they quickly showed her to us and then began working on her, once she was ready to go down to NICU dad followed her down. I was the sewed up and taken to recovery. I was not able to go see her till Friday before Grama & Grampa Heitz and Aunt Lynn arrived.

The Grandparent's were informed of her arrival by Dad. The boys spent the night and most of Friday with their friend Andrew.

Pictures to be Added later - to be continued

Much needed Burton Update

September 2011 to March 2012

Ok its been quite a while since I last blogged. Lots has happened. I'll try to sum up what we've been up to.
I'll add pictures later.
We've been busy, we got to take a boat ride through the Gates of the Mountains, the boys have been busy with school and cub scouts. Selling lots of Popcorn in Sept. and Oct.and then delivering it all in November.

Zane had his 7th Birthday in Oct. he and a couple friends went swimming then we headed over for ice cream cake at the DQ.

Blake celebrated his birthday similarly with a swim party with friends and ice cream cake after wards.

We learned in late November that the Stork would dropping us a new little bundle due on Grampa Chezum's birthday the 22nd of May. Much speculation at to whether the newest addition would be a girl or boy and whether they would indeed arrive as scheduled ensued as we told family in Dec. and Jan. 

We enjoyed Thanksgiving and Christmas at home, a mild winter with no snow really for Christmas.

Grama and Grampa took all the Grandkids on the North Pole Express out of Lewistown in Dec. All the kid and adults had fun traveling to the North Pole on the Train. They enjoy playing in the pool and hot tub at the motel as well. They spent most of their time in the hot tub as the pool was VERY COLD.

The boys had their Christmas programs the week before school let out and this year we had to go a different day for each boy.  Due to conflicting schedules we did not make our annual Christmas trip to Grama and Grampa Heitz's. We also wanted to go to Grama and Grampa Burtons but that didn't pan out either.

In January Scouts resumed with Blake and Dad working on outdoor skills and practicing them at the Winter. Klondike up at Camp Rotary near Monarch Montana.

The boys learned to ski and got to go several times during Christmas Break and throughout January. Blake went with his 4th grade class and they both went during the District BSA learn to ski days.

Jan also included the making and racing out our pinewood derby cars. A family effort went into making the 1st-3rd place overall Trophies. The numbers were on sale at Micheal's and I was able to find a 1 and a 3. There were no 2's so we turned a S into a 2. The 3 decided to disappear before we could use it, so we returned to Micheal's for a B, the 1st B broke so we ended up getting a third B to turn into a 3.  The boys built their Derby Cars and raced them at the Pack Pinewood Derby we held at the Missouri River Manor. We had a couple residents come join us.

February brought Little Miss Ava Grace who was 13 weeks 5 days early. More about her later. We also had the Pack Blue and Gold with a cool presentation from Cubmaster Robert Burton and a neat opening ceremony by Andrew. We had good food, the boys earned lots of belt loops, awards, pins and camp certificate money.

The 1st of March brought District Pinewood Derby and the racing of Pinewood Derby Cars, Semi Trucks, and Boats. The boys are also working on their swimming belt loops and pin at swim lesson every Sat. and will get to participate in Scouting for Food the last 2 Saturdays in March.