Thursday 11/6/2014

Word of the day: "weening."  Oxygen pressure weened, oxygen percentage- weened, sedation drugs weened, lipids weened!

All of this makes us closer to our goal of getting Ava off the vent.  She is close but not looking like the end of the week like originally planned.  Probably closer to Sunday or Monday.  To get her off the vent there is a fine balance between sedation drugs, vent settings and how much work she is doing on her own.  

Pretty amazing that you can actually watch the machines to see how much she is breathing or how much the vent is breathing for her.  The nurses refer to it as breathing "over" the vent.

They actually went up on her feeds again to 30 mls every 3 hours.  We are still getting quite a bit back but they continue to say that is due to the vent.  

They have laid out a weening schedule for the sedation drugs.  Today was day one of fourteen.  Obviously they will be making daily assessments and will adjust accordingly.  They do something called a NAS evaluation.  Which is basically an assessment to make sure she is not having too bad of withdrawal symptoms.  Babies show withdrawal symptoms much like an addict would to drugs. 

Ava had some very special visitors today!  Thanks for making the trip Mimi & Papa! Xoxo

Also Ava has been very honest in her evaluation of this entire process. 

The boys have been loving having daddy at home with them the past couple nights.  Ryan had a rough day a daycare today, got bit by another kid, and took a header on the playground which resulted in a bloddy fat lip.  

We can only think of one accident report for Mason in the time they have been there. Ryan is surely making up for it with a school record of 5 since August!  

We are so proud!  

  

Wednesday 11/5/2014

Preliminary reports came back with no signs of any brain bleeds or other concerns in Ava's brain!!!  What a sigh of relief that news was!  They said that we would probably not get the official report until late tomorrow- this is basically the difference of the resident reading the results vs the attendee. 

Ava had a good day after her field trip (to take the MRI).  It was the first time she has left her "pod"/hospital room since she arrived on her birthday day.  She is still on target to get rid of the vent by the end of this week/weekend and continues with the small amount of food (20mls) she is eating every 3 hours.  Still not holding it down so well.  They are not going to increase the food much more until the vent is out.  

Was so great to see Amy, her Mom Terry, Lucas and Kate today!  Thanks for visiting!  Xoxo

Ava is lifting weights!  ... Liezel wants her using her hands for something other than pulling her vent out so she made her some baby dumb bells.  Getting buff!  Looking back at baby pictures I really think Ava is a true blend of both of the boys.  She definitely has Ryan's eyes! 

Tuesday 11/4/2014

One more machine gone!  Ava was successfully weened off the nitric today.  Her blood gas numbers were spot on after they took her off so they carted the machine away.  It feels so good to see the machines and pipelines leading to her dwindling!  

She continues to have problems with eating/puking.  They don't think this has anything to do with her system- because all systems are at full production, if you know what I mean!  Liezel and the docs believe that Ava gagging on the vent that is in her throat.  Because she is a bit fistey - a mover an a shaker - the tube hits her gag reflex.  They are a bit worried she is going to try and pull the vent out so they have started putting mittens on her.  The girl know what she wants! 

Tomorrow they are doing an MRI at 1:00ish.  The MRI is done to check for any brain bleeds or abnormality due to low oxygen levels. Doc Taylor said she appears to be a normal infant with lungs that need to clear but they do this as a matter of protocol before the vent comes out since it is easier to sedate and monitor her this way. 

Doc also said this will not tell us anything of certainty about her long range outcome.  Unfortunately it is hard to see what has been damaged in her brain because babies don't talk, walk, eat, etc like adults.  Although they did say that babies brains are much more plastic and her little brain could learn to work around any trouble spots - should there be any.  It seems like this will be a good baseline to get should she have any issues in the future.  In the event they see anything concerning we would then meet with Neurology Team- but for now we are saying that's not going to happen! 

We were home for the last two days for Big Mimi's wake and funeral- beautiful services.  My Mom took up post with Ava and we had our two favorite Nurses looking over our girl as well.  

Liezel....

Jill...

And #1 Daddy and Husband :)

Monday 11/3/14

You are going to hear a lot of the same progress this week...  Just hoping it continues to trend positively, as she is today.  Docs are continuing to ween the nitric she was at 2 in the wee hours of the morning, they will hopefully take her to a 1 this afternoon and by tomorrow we are looking at loosing yet another machine!  This is a very agressive weeing schedule.  They are pushing her hard because they really want to get her off the vent.  So the doctors have brought in a specifically designed machine that we are told is intended to protect from all sorts of infection and is specially designed for Ava. 

She has started fighting it quite a bit- meaning she is pushing back on the help it is giving her.  This creates a double edge sword.  They are happy to see she is breathing well on her own but then she still needs help in some aspects with the oxygen pressure... If they are able to continue this aggressive schedule they say she could be off the vent as soon as the end of this week!  She will step down to a cpap machine.  We are thrilled about this news- sounds silly but we still have never heard her cry.  Because the vent goes straight down her throat her vocal cords cannot connect.  Just can't wait to hear what those pipes sound like!... You might be hearing different from me in the next couple of months, lol! 

Her stats have been a bit more elevated- not in a scary range- just at a point that we know she is really ticked off that she still has a tube down her throat.  But st this stage of the game being ticked off is good.  Because she is moving around her blood circulates better.  It is hard to see because we know when she is crying but we really can't do much to comfort her other than talk to her.  

Matthew and I don't really know what to do with no kids around.  Feels so odd.  Kind of a timewarp.  We went to a movie last night- a very normal person activity!  

Ry guy was busy this morning.... Oh its just VASELINE!  Sorry Kendra!!!!

Sunday 11/2/14

Mommy got to hold Ava again this afternoon!!  She was wide awake until Mommy got her hands on her then she fell right asleep. 

So we have established that Sarah will be the only one that gets to put her to sleep each night!!  

The only problem that we have found with this agreement is that Daddy may get lonely because as much of an effect as Mommy has on Ava -- Ava seems to have the same effect on her...

Feedings have gone very well over night. They decided to give them to her on an IV pump vs. just feeding by gravity. This helps to give the same amount just over a more prolonged period.  Not sue if this is a major help or not, but since they started doing it this way the nurses are not pulling back and residuals which means she is digesting it all. 

They have just gotten a formal order placed by the docs to completely ween her off the nitric by midnight Monday!!  

They have weened the pressure on the vent to 5 because she continues to "breath over" the vent. Basically her lungs have healed well enough that she is pushing air back to the ventilator instead of it giving her air. This is a very good sign!!  

The boys are having another great weekend with thier cousins. It never does get any easier to drop them off knowing we will be leaving them for a while, but 

Kendra and Gregg have been an amazing help throughout this whole experience. We truly beleive that the boys feel just as at home with them as they do with us!!  

Hope everyone had a Happy Hallowween and a great weekend!!  We are hoping and praying for good days in the weeks to come!!

Saturday 11/1/14

Ava has contined to make good progress today and she has been the talknof the NICU. 

It is very apparent she knows our voices and can tell when we are in the room or at the bedside. We have become very familier  with the ventilator settings and all the different adjustments that will continue to be made.  The current goal though is to get her weened off the nitric oxide machine which can only be lowered 1% every 24 hrs. 

During rounds tonight the doctors said they were very happy with how her stats we showing and would like to pull a blood gas to see if her levels are ok to weening the nitric twice in one day. 

They have also begun feeding her the breastmilk again but started slowly with 10 ml for now. So far -- no pukage!!  They have also started her on nexium every 12 hrs which does two things -- helps with keeping any ulcers in her tummy from forming and helps with and acid reflux she may have.  Got to love the purple pill!  

We are still very optimistic about how she continues to progress. One doctor on rounds said last night that there may be a chance if she continues the way she has been the ventilator could come out as early as mid week this week!!  Which means a flood a pictures of us getting to hold her!!! 

Keeping our fingers crossed!

Out like a light!!! Xoxo

Friday 10/31/2014

Happy Halloween!!!

Matthew and I got to head home together for the first time in two weeks.  We took our super heroes trick-or-treating around the neighborhood and got to see the Olde Oak Crew for a while as well.  So nice to be home and have some normal family time!  Nana got to spend some quality one on one time with Ava while we were home, thanks Mom!

Ava is 2 weeks old today!  She is doing really good.... After several x-Rays they have decided that the puking is either a side effect from the medicine (she has been on a ton) or that she has reflux (Ryan also had this- common baby issue).  All x-Rays came back "inconclusive" - which in their book means no big issue is happening.  

We also had some awesome news on her echo.  Doctor Taylor (the resident) says that her Pulmonary Hypertension is resolved at this point.  This was the problem with the pressure inside her lungs.  A refresher - you need to have a lower pressure in your lungs than the rest of your body so that the blood and oxygen can travel outward through your body.  So, for now, this major issue has been resolved. This means that we can continue weening completely off the nitric.  Which we are down to 5 (from originally 20).  We will ween by 1 each day.  Possibly 2 if her stats continue to look good!

On a very sad note, Matthew's grandmother passed away unexpectantly yesterday afternoon.  She had knee replacement surgery about 2 weeks ago and they believe that she threw a clot.  She was an amazing lady that lived a great life constantly surrounded by family.  She had 9 children, 24 first grandchildren and Ava was her 21st great-grandchild!  The pic below is from the 2013 Benoit Family Frolic at the family farm... I believe the count was 71 people!  

Ava Jane has one more angel looking over her tonight... "Big Mimi you be greatly missed!!! 

Xoxo