Let the countdown begin

In just under month Lucy could be tube free for the first time in her life.  In just under month Lucy could no longer be machine dependent for some of her nutrition.  In just under month I may no longer have to sew loops onto her shirts.  Yes, we are gearing up for another NG tube trial.  Our last trial was seven months ago.  Lucy did better than expected, but by day three she was crashing and burning.  She did not have the stamina to intake all calories needed orally.  We placed the tube back on day four and started focusing on her drinking.  In the last two months we have decreased her tube feeding from  four feeds of  190 mL (six ounces) to three feeds of 160 mL (5 ounces) each.  As we have decreased the tube feeding we have seen her drinking increase from 30 mL per day to almost 150 mL.  In the next three weeks we will look to decrease another 60 mL (2 ounces) each week in hopes that when we pull the tube she will hardly be dependent on her tube feeding.  The official date is October 30th.  I can't wait to see this face again! And the plus is we'll get to dress up for Halloween and take pictures with no tube on her face.  It really is the little things!

The last benefit doing the trial on Oct. 30th is we have a cardiology appointment the following Thursday.  If she does good, we can go to the appointment and have Dr. Husayni take a look and make sure we are clear to continue a tube free life.  If the trial doesn't go well, we will discuss g-tube surgery at the appointment.  All prayers welcome for a successful trial.  I should probably add prayers for less crying from mom as well!

Other than that we have just been doing normal things like play dates (with BFF Jack):

The Advocate cardiac picnic (she also rode the ponies, but I don't have a picture of that)

 She got this bear from the picnic and absolutely loves it!

And the zoo

and of course hair styling.....what's a girl to do without pigtails.

Feeling Normal

I can't believe it's been over month since my last post.  But as you know, no posts mostly means no major issues.  We are basking in the world of normal.  I have been thinking a lot about our first couple months home and I sometimes wonder how we did it all.  Oxygen, continuous feeds, two hour bedtime routines, daily weighing, oxygen saturation checks and questioning every little thing that seems not so normal.  Now we are down to weekly weigh-ins and oxygen SAT checks, plus medication only twice a day.

But my most favorite change is definitely our bedtime routine.  I used to have to rock Lucy to sleep,  about two hours, most of which was screaming.  By the time she was asleep, I was so exhausted.  Then we upgraded to rocking for a half hour, then about an hour of in and out of the room crying and rocking.  Next was setting her in her crib and sitting in the rocker in the dark for half hour to forty five minutes, then trying to tip toe out.  But now....we finish the nightly tube feeding, change into pajamas, play for a half hour and set her in her crib and walk out.  I can't believe how far we've all come.

At the beginning of August we went back for our Cardiac Neurodevelopmental Clinic.  Our first was at 12 months old and this one puts us at 18 months.  We made great progress in most areas.

Here are her report cards:

Area:                                                         12 month                    18 month
                                                                   report                         report

                                                                           Testing Level
Cognitive (play skills)                              10 mo.                         14 mo.
Fine motor                                                8 mo.                            8 mo.
gross motor                                               7 mo.                           11 mo.
Receptive language (understanding)       10 mo.                         21 mo.
Expressive language (talk)                       9 mo.                           15 mo.

Dr. Vanbergen and therapists were impressed with her demeanor, she was fast to warm up to all. Her progress in most categories was great.  There were two concerns, fine motor which showed no progress and feeding tube.  They suggested we transition from developmental therapy to occupational therapy to focus on improving fine motor skills.  The feeding tube was a concern because g-tube surgery cannot happen after the fontan due to the possibility of being on blood thinners and we can't have the surgery too close prior to fontan in order to allow healing.   Since we are delaying her 3rd stage surgery until she is three, we have some time.  This news pushed all of us into high gear.  I filled our speech therapists in following the clinic and we have decided it's time to start pushing Lucy to eat on her own.  I truly believe if the tube is not out by our next clinic appointment in February, we will have to have g-tube surgery.

We will be working with speech and nutrition to systematically ween Lucy from her tube dependency.  We have started by decreasing her 4 pm down to only two ounces.  We have seen some slight improvements in her liquid intake.  Lucy is consistenly taking in about 200 mL (or 6.5 ounces) a day.  Doesn't seem like much, but back in March when we shifted our focus to her drinking Lucy was at about an ounce a day.  My hope is we will be close to pulling the tube around Thanksgiving, but only time will tell.

After clinic, we had hour two month check up with cardiology.  All looked good.  Lungs were clear, the switch to pediatric formula seems to be working.  We were granted a three month break and do not have another follow-up until November.

We will also have our yearly early intervention meeting this month.  We will discuss all her progress and decide what services will need to continue and what we can start to decrease.

The other big news is we have started to look into some day care options.  We feel that it would be very beneficial for Lucy to spend some time around other kids.  I don't think we would place her anywhere until we have mastered her feeding, but it's possible as early as next spring we will be there.  As you can see below.....being with other kids puts a smile on her face.

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.