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

home in 4!

With every hospital stay I learn something new.  This time I learned two things

1.  If at all possible don't have the pre-op appointment on the day of surgery.
2. Versed is our friend

 Unfortunately because Lucy had pink eye, we had to schedule our pre-op appointment for the morning of surgery.  We packed up and left the house at 6 am.  Our pre-op was scheduled for 7 am and surgery was schedule for 12:30 pm.  After the exam, labs and x-ray we had about three hours.  Lucy confined to a bed in a small room for three hours, man o man.  The anesthesiologist came in around 12:30 pm (they were late).  We went over some information, then they asked if we wanted to give Lucy some medicine before sending her into the operating room.  We opted to give her some Versed.  It was the first time she had sedation medication prior to a surgery.  It was hilarious!

The nurse came out after surgery had begun to tell us everything was going as expected.  She also commented on Lucy's demeanor ......she was just chilling and looking around as they were preparing for surgery (another plus of versed).  We received one more update from the nurse when the surgery was complete.  She said it would another fifteen minutes but we could head over to the PSHU waiting room and she would come get us when Lucy was situated in her room.  By 5 pm we were in her room.

The surgeon performed end to end anastomosis where a lateral thoracotomy incision is made toward the back of the patient’s left chest. The patent ductus arteriosus (PDA), if present, is ligated (tied off with suture). Clamps are placed on the aorta above and below the narrowed segment, so that blood can still flow to the upper body and head. The coarctation segment is cut out and the two ends of the aorta are sewn back together.

Lucy came out of the OR with one chest tube and on oxygen.  Also, based on her history we are back on Tolerex!  The doctors wanted to allow the lymph's to heal, so we will be on this awful formula for a month.  Lucy was definitely not a fan of the oxygen cannula.  Friday night we had to give her some more sedation because she kept trying to rub it off her face.  Everything else about our hospital stay was as normal as can be (can you believe you are reading that!).  Thursday and Friday she slept most of the day.  Only waking up to drink a little water and snack on some goldfish.

Saturday Mike and I split time so one of us could be with her at all time.  Saturday morning they removed oxygen and told us one more day with no drainage from her chest tube and we could pull it and go home.  Saturday night a room on floor 2 opened up, so we packed up, moved down to our new room and prepared to go home.  Sunday morning the cardiologist and surgeon came in to pull the chest tube and informed us that Lucy's potassium was high and that we might have to stay an extra night.  NOOOO!!!!
They would decrease one medication then retest around noon.  If everything was good we would be discharged.   Thankfully the second test was good and by 3 pm we were headed home just four days after surgery.  Just a note that we beat the average hospital stay of five days!

Lucy took a two hour nap when we got home.  When she woke up she was happy as a clam to be home.  We have a six week restriction on picking her up under her arms (which is so hard!), but other than that, no restrictions.  By Monday she was crawling, pulling herself up and climbing up the stairs.

We have a surgical follow up in a week and we will see if we can start decreasing some of her medications from surgery.  We'll also see how the hospital stay impacted her.  As of now, she cries every time we lay her down, even diaper changes!

We can't thank everyone enough for their prayers.  Lucy did amazing and we are so proud of her!

delayed

Surgery has been rescheduled.  Last Friday I spoke with the nurse that was going to do Lucy's pre op appointment.  She said if Lucy shows any symptoms that would indicate she is getting sick to call.  Lucy needs to be healthy going into surgery in order for recovery to be as short as possible.  I didn't worry about it since Lucy hasn't been sick since she came home a year ago.  Sure enough early Monday morning at about 1 a.m, as I was trying to rock Lucy back to sleep.  She seem rather warm.  I took her tempurature and it was 100.3 degrees.  At that time I called the cardiologist to see if there was anything we should do.  He said to keep an eye on her tempurature and look for any other symptoms.

Monday was a lot of sleeping, crying and tylenol.  Tuesday we made it to the pediatrician where she confirmed an ear infection and put Lucy on antibiotics.  Lucy will be  antibiotics for ten days.  You guessed it.....surgery is delayed.  They would like her healthy for a week after her antibiotics are done.  We have tentatively scheduled surgery June 4th.

Lucy had some trouble settling in her bed on Sunday night when her fever spiked, so we brought a pillow down to the family room and we snuggled on the couch.  All day Monday and Tuesday she did more lounging (mostly sleeping) on the couch.  Even sick and puffy she still looked adorable.

and I managed to sneak a smile...hope she can get back to her normal smiley self soon.

number 5

We will head back to the hospital after a five month break for surgery.  We got the call from Dr. Husayni last Thursday afternoon after the conference.  He said the team went back and forth on which path to take, but ultimately settled on surgery.  This will be number five.  We were really hoping to stay out of the hospital in 2015, but we are prepared to do whatever it takes to keep Lucy as healthy as possible.

The narrowing of the aorta is restricting blood flow and putting extra stress on her heart and the team felt that a catherization would only delay surgery.  This will be the first time we are not admitted prior to surgery.  On Monday afternoon we will head down to the hospital for a three hour pre-op appointment.  They will do blood work, x-rays, etc.  I assume it will not be a fun afternoon.  Then Thursday we will pack up for an undetermined hospital stay.  Of course I asked what the average recovery time is.....Katie (Dr. Ilbawi's nurse) says, I can give you average, but you know Lucy marches to the beat of her own drum.  We can pray that this time, she can make the average recovery time and be out in five days!

I tear up as I am writing this, not because we need surgery, but because I don't want to be in the hospital.  The hospital sucks.  It messes with Lucy's schedule.  It is exhausting and stressful.  It isn't home!  It is amazing how five months can feel like forever!  When I counted how long since our last discharge, hard to believe it was only five months....November 30th.  I think my biggest fear is how Lucy will do now that she is mobile.

Back to surgery, so there are two approaches to fixing Lucy's aorta.  Not being in the hospital, has one disadvantage.....I don't get to sit down to discuss exactly what is happening.  The surgeons will either (in lay men's term) cut out the narrowing and reattach the aorta or they will patch the narrowing to remain larger.  They will decide what approach to take in the operating room.

Prayers specifically for the following would be greatly appreciated
-Lucy's medical team as they operate and care for her
-Lucy to cope with surgery and the change in her routine
-Lucy to recover quickly
-For Mike and I to handle this unexpected hospital stay with grace and patience

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