Good Samaritan

 Lucy and I ventured out for our second solo trip.  It was just a quick run to Target to pick up some things I needed for dinner.  Lucy was off her feeds and I knew she could manage a half hour off oxygen (more on that later) so it was just Lucy in her car seat, me and my purse.  We got to target and I scurried around picking up the few things we needed, still very nervous to take her out and about.  We get through check out and she is still taking in the sights.  At the car, I placed my purse on top of the car and got Lucy out of the stroller and into the car, then I packed up the stroller in the trunk and hopped into the car to hurry home.  Yep, you guessed it.  I pull into our condo parking spot and my purse is not anywhere in the car.  I had driven off with it still on top of the car.  Freaking out, I turn around hoping that it is possibly still laying on the pavement close to where I parked.  No luck.  I must have had a look of panic on my face because as I walked into Target and up to the service desk, the lady  looks at me and says "Elisabeth Shannon?"  In which I respond, "yes!  Did someone turn in my purse?"  Low and behold, there it was and I breathed a sigh of relief.

So thank you to the kind person that found my purse and took it to the service counter.  The time, energy and money you saved me along with what would have been many tears is much appreciated.

We had the Early Intervention therapists to our house on Friday.  The developmental therapist said there were some physical delays and she would refer a physical therapist to come out to evaluate Lucy.  The speech therapist saw over a thirty percent delay, but said that for Lucy to be eligible she would need a delay in two areas.  We will wait to see if the physical therapist can see a thirty percent delay as well.  Lucy is really close to sitting so we are pretty excited, but maybe we should hold off practicing until the PT can see her.  Yeah right! 

 

If she ends up not being eligible, we will look into a private speech therapist, because I am having no luck with dips, the bottle or a sippy cup!  I definitely could use any help if we want that tube off any time soon.  We have gone up on bolus feeds, which is exciting.  She is up to four a day, then back to continuous feeds overnight.  In a week we will increase to five a day.  Once she is tolerating these, we will look to increase the volume and decrease the time.  Lucy takes her feeds over an hour and we give them every three hours.  It is nice to have her unhooked for two hours.  As we decrease the time, she will be off the machine even longer.

The oxygen has officially defeated me.  I have to admit I've cried a couple times in the last week.  As of my last post we were doing six hour tests off oxygen and everything seemed to be on track.  Last Thursday our home nurse came and she told me while we are doing tests to remove the cannula as it blocks her nasal passage.  When removed it can help to improve her numbers.  Unfortunately it seemed to do the opposite.  This past weekend I did two tests with the cannula off (it was nice to see more of her face).  After two hours, I checked her saturation, she was at 65.  I freaked out!  I watched the pulse oximeter for another five minutes and it didn't go higher than 70.  I immediately put her back on oxygen and didn't continue with the test.  This happened again at the next test, we have decided to give her a break.  We adjusted her oxygen to a little higher than one sixteenth of a liter.  We will watch to see if her saturation gradually increase, then we will think about trying again.

We see Lucy's cardiologist this week, so we will discuss our next steps.

Lucy is always pulling at the cords on her face, so I gave her an extra NG tube to play with.  It seemed to do the trick.  She was occupied for a full ten minutes.

 

Oxygen support

I am quite a few days late this last post, but time sure does seem to slip through my fingers tips. Our last appointment was over two and a half weeks ago, I guess maybe days late is a little generous.
We had an echo and it showed the digoxin is working.  There was increased function in her right ventricle which is huge!  We want that to continue increasing so that the chances of Lucy needing a transplant get smaller and smaller.  Doctor Husayni also decided to stop the captopril (a blood pressure medication).  Long term side effects of this medication can be a dry cough.  Since most of her throwing up (which has continued daily) is cough induced the thought was if we stop the medication, then the cough stops and she will stop tossing cookies two to three times a day.  We have yet to see a change in her cough but are really hoping and praying another week or two will make the difference.  We were going to make another change to medication, but I asked if we could work on removing oxygen.  The doctor was on board and so the slow progression to remove oxygen begins.

  Since the appointment we have gone from a half liter of oxygen all the way down to a sixteenth.  Just like everything we do with Lucy, it is slow and steady.  We started at a quarter, right after the appointment and each week we decrease a little more.  During the decrease we have also been doing some tests off oxygen.  We do anywhere from three to six hours off and hook her up to the pulse Oximeter to check her saturation.  I was so nervous for the first test that I was checking every half hour.  Now I can go about two hours before checking.  Yesterday we did six hours off and at the end of the six hours she was still reading 82 percent.  We will most likely get to remove oxygen all together within a week.  Let's just hope we don't have to go back on it.  That was the main reason Mike and I decided not to push for removal right away.  We didn't want to remove it and then a week or so later go back on and have to be on another month.  I will say moving from the concentrator (which sounds like a generator) to oxygen tanks was a very pleasant one.  We can actually hear ourselves think!

A sneak peak at what Lucy will look like without the cannula.  Is that a cheek I see?

The bolus feeds have been going well too.  We hit a little snag mixing in formula as our milk supply is decreasing and in another month we will need to move to full formula.  Who knew that baby formula could be hard on their tummies.  Does that even make sense?  We are now doing two bolus feeds at 70 ML and we have increases her continuous feeds to 30 ML/hour.  This coming week we will be adding another bolus feed and have requested the next steps in the feeding plan.  It is quite exciting to see her progress and hope she will be able to be unattached from the feeding machine for more than an hour at a time.

This past week I met with our care manager at early intervention, we went over some basic information and she put in the order for the therapists to come see Lucy.  Next Friday the developmental therapist will come out for her assessment.  The assessment will determine if Lucy is eligible for treatment.  I can't decide which way I would prefer the assessment to go.  If she isn't eligible that would mean she is on target for her age.  For developmental, I could really go either way, but I am praying she'll be eligible for speech therapy.  Obviously it's not for talking, but for eating.  I just know I could use all the help I can get for Lucy to start eating by mouth.  We should know in the next two weeks for sure.  Once the assessment is complete they would then determine how many visits she would need on a monthly basis.  So next week should be a big week for us.  Maybe I can get my act together to post an update in a reasonable amount of time.  Wait and see!


I'm working hard on tummy time

I smile all the time, just make funny noises!

And I can sit, with some support.  Soon maybe on my own!   Oh and sometimes we play dress up in my fancy clothes.

Monthly birthday pictures

We did not get professional pictures after we left the hospital, but we have been taking plenty ourselves.  Here is each month since birth.

February 13th

March 12th

April 13th

May 13th

June 13th

July 13th

August 13th