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

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!