Out of the woods

There is an article circulating on social media called 'Out of the Woods' which details what it means to be a parent of a chronically ill child.  While I don't consider Lucy a chronically ill child, surgical intervention will never truly 'fix' her heart.  The article talks about even on the best of days parents live in a world where they are always waiting for the other shoe to drop.  I would not say we dwell on the bad or are constantly thinking about when something will happen, but you can imagine why appointments can be surrounded with anxiety and worry.  Last year we had three unexpected hospital admittances and one unexpected surgery.

Most of the time I go into an appointment day with the highest of hopes: a three month pass and the reality of her diagnosis: a possible admittance.  Last Thursday we landed somewhere in between.

We arrived a half hour early so we could visit some of our favorite nurses in the PSHU.  We were lucky to see a lot of the nurses we knew from our very first stay were working!  Lucy was unsure at first, but in true Lucy fashion warmed up to the attention quickly.  The nurses even paged the attending cardiologist for a couple of cuddles.  Celebrity status?  I can't decide if that's a good thing to have at a hospital!

We headed to our appointment for a scheduled EKG and echo.  It's been awhile so I wasn't sure how Lucy would handle everything.  She did well with weight, height and vitals.  Then I got her undressed for the EKG and the minute I laid her down she started crying.  We made it through and then moved onto the echo.  More of the same until, wait for it......we played the theme song to the TV show Big Bang Theory.  Weird, right?  Whatever does the trick.  That song and video combo puts her in a trance.  We played it about eight times and then my dad and I needed a break (we moved onto bubble guppies).  But it was by far the easiest echo to get through.  After Dr. Husayni reviewed the echo he came into the room to discuss the results.  He told us that the coarctation of the aorta had narrowed  to it's previous size and we would need to intervene.  They are discussing the case this week and will call with a decision.  He stated that we could probably try a catherization to balloon the aorta (using a bigger balloon) and hope it takes this time.  The catherization should be (using the term ,should be, very loosely) an overnight stay.  Our past would indicate otherwise and like usual we will wait to find out.  Lucy is definitely more aware now so I am hoping if I talk to her about what is happening it will help her cope a little better.

Crafting her pool skills

We continue struggle with Lucy's separation anxiety but we know it is completely normal.  We have started a bedtime routine because going to bed has also been a struggle.  We've added changing to pajamas and teeth brushing.  We are hoping these two things will help her settle better at night.


She always wants what mom has.  I promise the glass was empty and she was supervised!

Prayers surrounding this next hospital visit would be greatly appreciated.  Specifically that it does not impact Lucy's progress in her therapies.  Also, that we are able to get in and out in just one night!

Easter baby

It's crazy to think that at just over a year old Lucy got to attend her first extended family holiday party.  Easter was at my parents this year and Lucy was able to meet some of her great aunts and uncles for the first time.  As usual she was the center of attention and loved every minute.
 

Lucy had her last synagis shot at the end of March.  Synagis is a prescription injection of antibodies that is given monthly to help protect high-risk infants from severe RSV disease throughout the RSV season.  Our synagis nurse Phylis is amazing and loves Lucy.  She has gone to bat for us in helping to get this shot covered (it's expensive!!!).  Lucy however is not a fan......and I guess I can understand why....she always gets a shot when Phylis shows up.  The last shot seemed to be quite traumatic.  Lucy was hysterical at the sight of Phylis.  The following day I took Lucy on some errands and as I took her out of the car, she started crying immediately.    At our next stop, same thing.  When I got home I told Mike, we need to start taking Lucy places other than the doctor!  Since then we have gone on small errands to Target, the mall and walks around the neighborhood.

We had our six month review with Early Intervention.  It was so encouraging to see how far we have come, especially since we have only been having sessions for four months.  We brought on services in October, but due to our November hospital stint, didn't start with any of the therapists until December.  A positioning chair and g-tube surgery were almost deemed necessary in October.  We never needed a positioning chair.  I credit our parents for diligently doing Lucy physical therapy exercises daily.  As of this weekend, Lucy is walking with her push toy on her own.  She will most likely be walking in a month.  Her feeding is progressing well too.  We are focusing on liquid intake.  Our goal after the trial was 1 ounce of water and formula a day.  We are working on consistently taking 3 ounces now (only a month after the trial).  If she can consistently drink 16 ounces of liquid a day we will start discussing another trial.  Hopefully since I have been through it before, I'll be less of a mess.  We also had an occupational therapist come in for evaluation to possibly help with Lucy's sensory issues and some bedtime issues.  The OT said the Lucy is a pretty typical one year old, but she can give us some skills to help with her coping.  One thing that was recommended is social stories.  This would be where we take pictures of people and places and before we leave the house on a trip, we would show Lucy the pictures.  For example, for hospital appointments we could show her pictures of Dr. Husayni, nurse Kelly, the hospital and possibly a room.  The social stories would allow her have an expectation of where we are going and what will be happening.

We go back to the hospital next week for our first appointment since February.  It's the longest span without a visit or stay at hospital at ten weeks.  The week leading up to these appointments can be filled with anxiety because we don't know what can happen.  We only hope to get another three month pass!

When we first found out about Lucy's diagnosis, I knew somehow I wanted to become involved in raising awareness and helping other families.  On June 13th we will take our first steps as we walk in the Congenital Heart Walk, under team 'I Love Lucy'.  We are fundraising to support Adult Congenital Heart Association and the Children's Heart Foundation.  If you'd like to support our fundraising or walk with us,

 
please visit the link below (cut and copy to your web browser):

http://events.congenitalheartwalk.org/site/TR?px=1086479&pg=personal&fr_id=1240&et=iyYWQXE1eb3A3xvGd2c7Rg&s_tafId=1461