Thursday, April 26, 2012

10 Weeks Old

May 2nd - Opthomology came and did their exam this morning and the Doctor says she's developing ROP, she wants to examine her again next week and if she continues to get worse she will need surgery, which means our trip home just got post poned.
May 1st - They brought in the transport specialist, still may get to go home. Surgery didn't say one way or the other if they would let her go. She has an eye exam again tomorrow hope that goes well. Got to do lots of holding and so far still no new roommate which is nice. She weighed 4 lbs 4.6 oz. tonight. She is up to 9 mls per hour and 24 calories per ounce, they want her up to 11 mls per hour before they will let her go home, but at least she'll be off the TPN would be nice to just be getting her bigger and getting her off the ventilator.
April 30th - Still hinting we might get sent back to Great Falls. I'm ready to go back, but am not sure Ava is quite ready, her stoma/ostomy and fistula both are prolapsed and I don't know if the nurses know how to care for her as well while she is this way. The fact they are prolapsed and so close together makes it interesting to say the least to put a colostomy bag on her that will stay as the fistula usually leaks fluid under the adhesive which then loosens the bag. I'm confident they can help her to develop her lungs and keep her growing. She will be at full feeds on thurs, she is up to 8 mls plus fortified to 24 calories per ounce. Wednesday she has another eye exam, and may get a bronchial inspection as they up sized her tube. All the nurses are like ya! they finally upsized the tube as the leak could not be minimized with positioning even if she would have stayed in the position they put her in. The air leak is now minimized and she is doing better with fewer destats and is able to bring herself back up most of the time.
April 29th - Ava has had her vent tube up sized from a 3 to 3.5. Now we know its not the leak that's causing her to drop her stats, now to figure out the little mystery girl so we can get her of the tube and closer to not needing help breathing. Today Ava and her roommate each had their own nurses since they both were on transport duty, not that they got to go out on transport. She is up to 8mls per hour, and they are hinting we might get transported home to grow just haven't given us a definite time, but maybe in the next week or 2.

She weighed 4 lbs and was 15.5 inches long.
April 28th - Had our primary nurse today, and got the news that we might be able to go back to Great Falls and continue to grow and get stronger at home. This is all dependent on getting to full feeds (11 mls per hour), she's at 7 mls per hour right now, surgery deciding she is ok to go and wait on surgery till she's bigger, and what pulmonary decides as well they have been brought on board to help her develop her lungs. Since she is still on steroids and doing well as they wean the doctor is also weaning her vent settings, which she is tolerating really well, they have gone down on her pressure support and rate and she has had good blood gases as well and not needed extra oxygen support even with the large air leak around the tube.
April 27th - Ava is now up to 6 mls per hour. She loves to be held.

Looking Spiffy in Her purple outfit Big brother Blake picked out for her.

April 26th - Ava is 10 weeks old today, or 36 weeks and 2 days gestation. She is still in her big girl crib. We keep bugging the doc's to send us home to grow there since surgery is not to excited to do the reconnection surgery yet and are now leaning towards waiting the 6 months.  She is up to 3lbs 15.5 oz.  and looks so cute in the little outfit Zane picked out. Tomorrow she'll get to wear Blake's I hope, if i can convince the nurses. She is up to 1/2 feeds at 5mls per hour and they are adding a extra nutrients to her milk.

Friday, April 20, 2012

9 weeks and a big girl

April 25th - Nothing really new to report. They are still trying the to wean Ava off her ventilator. I did get to hold her quite a bit. She was really mad about something and if she hadn't had the tube in her throat the whole NICU would have been able to here her.

The webelos had a field trip to a construction site for part of thier engineering pin requirements. Didn't get to talke to Blake to find out how that went, maybe he'll tell me about it when Ava and I are finally able to go home, whenever that is.
April 24th - Today was better for Ava as she didn't destat as often as she is happy with her steroid, she was a hot body in her onsie, sleeper and wrapped up in her blanket. Took awhile today to get a chance to hold her, but held her in just her blankie trying to cool off the hot body. I asked the nurse today what she weighs these days in pounds and ounces as everything is in grams or kilograms. She is upto 3 lbs 12 oz.
April 23rd - We got a package from Dad all our clothes and one from my friend Rita. She sent a really cute outfit and the most appropriate burp cloth.

The burp cloth is so Ava as she seems to have the RT and Nurse and every other nurse or rt arround coming into her room at day and night some days as she constantly sets off her alarms by dropping her oxygenation levels or heart rate.  I've decided to get some permanant markers or fabric markers and have the staff at both NICU's sign it as a keepsake.

On the medical front. The Pulmonary Care specialists for asked for consult on her to give suggestion on how to best help her to get off the ventilator. They are suggestion the steroid burt (3 days), then weaning her off instead of the cold turkey approach. She started the steroid today. They also want to do a scope of her bronchial tube. She still destats down into the 60's and 70's and is on a high level of oxygen.

I got some holding time in about 2 hours worth, before i had to head to the RM House.
April 22nd - Today was a beautiful day in Seattle. Warm and sunny. Now that Ava is in her big girl bed it is easier to hold her. Still no idea as to when she'll get released back to Great Falls. Now her daily plan says when no surgical intervention is needed, and we know she needs one more surgery for sure but was originally told that would take place in 6 months, until then the major plan includes strengthening her lungs so we can get her off the ventilator and eventually off all air support.

Robert, Blake and Zane are out for a ride in Great Falls, so it must be a nice day there too.


April 21st - Today Ava moved out of her isolette (condo), they opened the sky light to let in more fresh air and she was able to hold her own temp.
 and into a big girl bed. She was able to hold her temperature for 24 hours.
Being watched over by her Brother Zane the Lion, Our friends the Christensen's, and Blake Brother Bear
While mom and fun with Dottie, Ranae and Kye. Ava got a NICU Spa treatment from her favorite primary Nurse Alayne - sponge bath, lotion run and her hair scrubbed and washed and styled.

 I hear tell that the Tiger Scouts visited the Lewis & Clark Museum, Hiked over to the Park along the River and had a Picnic today.
April 20th- She's been a good girl while mom's there, when she starts to drop her stats mom let's her know she's there. She started feeds again at 10 am, fingers crossed she stays on them and starts taking on more milk as the days go by.
April 19th -

Little Ava - 9 Weeks old today.
The Surgeon's gave the go ahead to let Ava start back on feeds, 1/2 ml per hour. otherwise Ava is still doing the newborn thing. She did fairly good today. Only a few minor destats that mom was able to help her out of by rubbing her head. She had a fever about 4pm just before Maxine, Nancy and Kayla arrived for care time. They got to see all the things they do (all the blood draws, just missed the diaper change and temp check), repositioning ectra. After they got to spend some time with Ava we headed down to University Village and found me a umbrella - since its about time i got one for the wonderful rainy weather around here. We also went on a hunt for the perfect bag/diaper bag - found styles I liked but not colors I like. Tried out the food at the Ram Restaurant and Brewery - good food, they were a little over zealous with the cilantro - it was in the coleslaw and the soup as well. 

Ava had a couple brady's during shift change - just letting Julie the nurse know who's boss and one episode of destating overnight that required bagging back up. So since she brady'd and the temp thing the took her off feeds for the night even though she was tolerating them well.

Thursday, April 12, 2012

2 months

April 18th - Today Ava has still destated, but brings herself back up if mommy givers her a head massage. Mom spent most of the morning stroking her little head, she is normally a leave me alone girl. No surgery until she can keep her oxygenation levels up.
April 17th - Today they put a new picc line in above the old picc line, they didn't put it in her head which mom is thankful for. IR took her at 3pm and it took about 2 hours for the procedure. She is still destating into the 40's, 50's and 60's when she's not sedated. She likes extra pressure support on the ventilator.
Blake called and misses his mom and sister. He would miss school just to come see us.
April 16th - Last night was the same - lots of destat's and brady's and not even being on her tummy seemed to help. She did this all day today too about every 15 minutes her title volumes would fall and then so would her saturation levels the nurse would bag her back up and 15 mins later all over again. They messed with vent settings, they gave her morphine and ativan to help calm her nothing seems to work.  They sadated her to put in the new picc line and she stayed stable for an hour, the longest she'd gone all day. When i left at 10pm she had started to extend the time between desaturtation's hope she's over that hump. She still is getting lasiks to help unload the extra fluids as well as got a blood transfusion today, althought they are wanting lots of labs, so she'll probably need another bloold transfusion when they are done drawing blood for labs. Today was 60 days of life (2 months)
April 15th - Ava is still destating down into the 50's and 60's and needs bagged to bring her back up. She doesn't like being on her back, prefers her tummy, but she needs to spend time in other positions besides just her tum-tum. They have played with her vent settings multiple times trying to find what works for her (or what she'll work with) as she tries to get extra little breaths in or clamps down (holds her breath). They also put her back on a morphine drip for comfort level and to try and settle her down. They would like to pair her and another little guy but both of them are requiring extra care, they do pretty well with their own nurses, but when having to share they both seem to act up. Hopefully tomarrow will be a better day.
April 14th - Well we had a setback - Feeds lasted till about midnight and then she seemed to be having a tummy ache so off feeds till after surgery now. Still trying to figure out why she spiked a temp. Also she was stacking breaths so they sedated her, this helps her to relax and evens out her breathing. It brought down her CO2 levels and kept her off the oscillator for now, she still may end up on it if they can't wean her settings. All this going on so mom hasn't gotton to hold her after Dad left. Once she stablizes hopefully I'll get to hold again soon. Praying she has a good night tonight.

Sounds like the boys are feeling somewhat better, Roxie brought them Supper - thanks everyone who is taking care of my boys while i'm in Seattle with little Ms. Ava.

To keep myself busy, I worked on making a headband for Ava, will try it on her tomarrow, and see if i can figure out how to make flower accessories for it too. Thanks to Dana for providing me with yarn and crochet hooks.
April 13th - Yah! After waiting till noon for rounds, we learned we could start feeds today. 1ml an hour continues feeds. She was doing pretty good, a little more in her tummy than they would have liked around 8pm, but will she how she does later this evening.  Hopefully her tummy will kick in and do what its supposed to do and she'll also have bowel movements as well.
My poor little boys stayed home sick today with fevers and chest congestion, hope they get over it soon.
April 12th - Ava is 8 weeks old today. She is 3lbs 7 oz. She is 34 weeks and 2 days gestational age as well. She is still struggling with getting her lungs to grow and do their job, and we have not started feeds again. The surgeons say 2-3 still before surgery and are considering letting her start feeds before surgery but have not given the go ahead yet.  I'm getting flustrated with all the mechanical nursing and being such a good producer that I have to dump it all as there is not enough space in the freezers and once they start her on feeds they will use fresh not frozen.

Little Miss Ava 8 weeks Old
Here froggie something to hold besides her vent tube

I pray that they decide to do the surgery earlier so we can work on getting her up to 1/2 feeds and are able to go home sooner. As it stands if its 3 weeks till surgery we'll still be here 6 weeks from now.

Saturday, April 7, 2012

Easter Week

April 11th - Ava spiked a temp last night so today they ran a whole bunch of tests and she saw about everyone possible to determine if she had an infection and where it was. They did a complete ultra sound work up on her tummy checking out the kidneys, liver, gallbadder you name it. No red flags from the ultra sound or the blood test results. They also gave her some stuff to loosen anything left in her bowels and she had 2 doses of lasiks as well.

For Dad and the boys is was back to the same ole routine, or a version of it anyway.

I will try to get better about doing daily updates instead of continuing on one as i know these tend to be very long.
April 10th - Ava is 34 weeks gestation today and is over 3lbs. Today at rounds we learned the surgeons want Ava to grow bigger so they can reconnect her bowels as the ileostomy wants to close on its own. So that means Mom and Ava will be at Children's Hospital indefinitely. Dad and the Boys are headed back to Great Falls this evening they left at 5:50 from the RMH, mom will miss them, but it will also be nice to get back into a routine of sorts.
 Dad spent most of the morning with Ms. Ava (3 hours)
 Can't you tell she loves being held by Daddy.
Tiny Little Lady
 Blake saying by to Ava
 Zane saying by to Ava
The boys saying good to their little sister Ava
They didn't really want to leave Mom and Ava in Seattle for several more weeks. I don't blame them, I hope the weeks go by quickly and we are able to go home sooner than we think.
April  9th - Dad & Blake spent time with Ava and then went and got Zane some Tylenol and cold meds. Zane and I hung out in the room and watched cartoons when he wasn't sleeping. Ava may get to start on feeds tomorrow. Mom went up and spent time with Ava after everyone went to bed. Ava's roommate moved out so now she has the whole room to herself right now. There are currently about 13 babies in the NICU, they can have up to 19.
April 8th - Easter Sunday was spent visiting Ms. Ava - Dad spent lots of time holding her. The boys and I hung out in the computer lab and watched TV in our room. The Ronald McDonald House had 2 groups come serve meals. All in All we had a pretty good Easter Sunday.
April 7th - I know I should post each day rather than by weeks but this way I don't have to come up with a post name every day. Today we are hanging out the the hospital for the most part. Dad is getting to hold Miss Ava while the boys and I are checking out the computer lab. Blake took pictures of Dad and Ava. I was trying to update with pictures from my phone now that I have a cord but these computers won't let me.

 Dad & Ava - Photo by Blake
April 6th - Today we went and saw Ava in the morning. Blake loves to see his sister. At rounds it was discussed that Ava was doing well enough that they would transition her to the conventional ventilator in the afternoon.

The boys checked out the sibling playroom - we need to learn their schedule better, they apparently needed volunteers if we weren't there. We picked up tickets at the Ronald McDonald House for the Aquarium and met up with Maxine.

She took us down to Alaskan Way where we boarded a the Argosy for a tour. We saw many ferry boats ferrying people from many locations along the waterway (water highway), as well as Bald Eagle, Sea Lions, the Skyline and HUGE CARGO Ships, we also saw the Healy ice cutter that helped to deliver fuel to Nome, AK.

After departing the boat and purchasing our boarding pictures, we had an ice cream cone and then headed to the Aquarium. They got to touch star fish and other fish, see otters and sea lions.

We returned to the hospital so we could all get our Ava fix, she and her condo had moved to another room while we'd been gone, she has a roommate again, in the room next to our first room. There isn't any room for a chair, so it will be interesting to figure out how we are going to get dad some snuggle time with his daughter.  She had be changed over to the conventional ventilator and looked more like our cute little girl as she had lost a lot of her fluids.

Since we were all hungry we checked out a retro diner that had great burgers and shakes. The mini jute boxes didn't work, which was a bummer.

April 5th - Robert, Blake and Zane arrived at the Ronald McDonald House at 9 am this morning. We got them settled into the room and took a quick tour. We walked to Children's Hospital. Blake and Zane were allowed to see Ava for the first time. Blake said she was tiny and cute, Zane thought she looked like a cute doll. 

Ava has been doing great and they have been able to start working on getting her off the oscillator. Hopefully they will be able to wean her to a conventional ventilator tomorrow.

After rounds we headed back down to the Ronald McDonald House for lunch. Dad went back up to the hospital to sit with Ava. Mom and the boys stayed behind and they got to Easter Egg Hunt, Dye Eggs, and Decorate a Easter Cookie.

I don't think Blake was ready for how little she is.
Dad came back in time for supper provided by a group serving the House. We then had the opportunity to go to the Flight Museum.  It was a long day and everyone was ready for some serious sleep.