Friday, May 25, 2012

Steps closer to going home.....

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 29th - Not much to report. Still not started on feeds. Got in lots of cuddling time. She's a little chunk though she weighs 6 lbs 1.8 oz.
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.

Friday, May 18, 2012

3 months

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.

Ava and Mom before surgery.
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.
Ava's Due Date Certificate :)

 Ava on her Due Date

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 as i really want to go home to visit the boys and Robert but tickets are expensive the link to donate is 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.

Thursday, May 10, 2012

4 more weeks?

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.
Then had some cuddle time with Ava this evening.
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.

Friday, May 4, 2012

7 Weeks in Seattle and Counting

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.

 Her onsie says My Daddy makes me smile
 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.

Bright eyed little girl, during the day even.
See my friends see I have my eye's open.
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.