love-hate

I have a serious love-hate relationship with the NG tube.  It has it's benefits.  The biggest is allowing Lucy to get food without exerting much energy.  We all know Lucy started way behind in the size department and growing can be one of the most difficult things for heart babies.  As much as I want her to eat and drink on her own I have no doubt she would not be as big as she is without it.  At almost a year and a half she is eighteen and a half pounds.  Other benefits include feeding her while she sleeps (although we try hard not to), giving medication and keeping her hydrated if necessary.

But somehow, the hate overshadows it all.  Placing the tube and changing the dressing.  That's it.  That's the hate.  I can't tell you how much anxiety I get as we approach each thirty day mark to change the tube.  I dread it.  I procrastinate.  I make excuses to not pull out the tube.  And every time, Lucy does it for me.  Perfect example,  we are five days over our thirty day mark (it's okay, the nurses have said some parents change it every 90 days) and I am finding excuses.  We finish her night feeds, take a bath and are putting on pajamas when she throws up.  Her tube came partially out and I was able to push it back in, but another wave and the entire tube was out.

It was like Lucy saying 'oh no you don't, it's time to change it'.  Begrudgingly, I took the dressing off and got her back in the bath (cause there was puke everywhere).  We let her sleep tube free through the night, but not without snapping a few pictures.

We had her one month post surgery follow-up with cardiology a couple weeks ago.  Everything is looking good.  Her heart function is good, the aortic repair is healing nicely.  Her oxygen SAT have been in the low 90's.  We were given the go ahead to switch off Tolerex a week after the appointment.  At that time we switched from infant to pediatric formula and I can say it is nice not to have to mix formula anymore.  We go back in a month to check for chyle or any fluid in the chest and then we are hoping for a three month break.  That would put us into November, woo hoo.
I did ask about her third surgery and when we would start discussing scheduling and we got some more good news.  Dr. Husayni wants to give Lucy some time to heal from the last two surgeries.  We will be able to wait until she is three.  This means that we will have over a year and a half to be at home.

The biggest change coming out of this surgery was definitely her water consumption.  Lucy is now drinking on average 3 to 4 ounces of water and 2 ounces of milk by mouth.  We are working on a plan to systematically ween Lucy off her tube.  We have started by decreasing one of her four feeds by one ounce in hopes to promote more drinking by at the next meal.  It would be an amazing present to have Lucy tube free by Christmas.  This time around we are not pushing anything.
Surgery did set us back a month in terms of physical therapy.  We hoped to be walking by our next neurodevelopment clinic, but when she's ready she'll figure it out.  I am interested to see the evaluations of the therapists who haven't seen her for six months.
We will be there next week for the clinic.

Continued prayers for feeding progress and as always for her heart function.

In less than two weeks we are hosting the 2nd annual Have a Heart fundraiser on August 8th at Joe's Bar on Weed Street.  Please join us for a fun afternoon of drinking, raffles and silent auction.

2nd Annual Have a Heart

Last year, family and friends came together to raise money for our family to help with medical bills.  The support was amazing and the event was a hit.  The fundraiser made huge difference to our lives, allowing us to focus on Lucy.  I can't imagine our lives without the support of everyone.

All details are below.  We hope you can join us!

If not, please consider making a donation at
www.youcaring.com/lucy-shannon-363540

Any little bit can help.

some little things

I had intended to make a baby book for Lucy, but it appears that life got in the way.  So as it stands now, this blog is her baby book.

As she celebrates 17 months, whoa, I thought I would detail some things she has accomplished and some funny antics.

She crawls.  She has two paces.  Her regular pace which gets her where she wants to go and her sprint which gets her to whatever door is open before we can close it.
She walks assisted with her sit to stand walker or one handed with any adult
She climbs up stairs, all by herself.
She follows simple commands......go get your pacifier, put the blocks in the bucket
She can identify objects by name...soccer ball, walker, Sophie and many others.
She can identify body parts.....head, hair, nose, teeth, feet, hands and ears
She can identify animal by name and sound.....cow, chicken, horse, pig and dog
She says mama, dada, baby and ni ni.
She will eat almost any food, except fruit.....fresh or freeze dried, it's a no go.
She drinks out of a sippy cup.  Most of the time she forgets to breath.
She swings and oh how she loves it!
She loves the mirror.

Now on to the funny.

What you say                                         What Lucy does
'Lucy go boom'                                    She will head butt you.
'Lucy go Ni Nite'                                 She will immediately lay down, for a second.
'Oh my gosh'                                         She will put both hands to her head
Bump it                                                She will High Five your fist.
Give hugs                                              She will grab and squeeze hard
Give kisses                                           She will lean in, open mouthed
'Dancing, dancing'                               Swings right arm across her body
'how much do you love gramma'         Burst immediately into tears