Surgery date

I know many have been waiting and asking about Lucy's next surgery and we got the call last Wednesday.  Her catherization was what they expected and it was time to go ahead and schedule.

The big date.....April 20th.

We will head down to the hospital April 17th for all her pre-op tests to ensure she is healthy for surgery.  I will do my best to make sure that happens!  If you can't recall her last surgery we did pre-op the morning of surgery and that was dreadful.  Lesson learned.

It's amazing the impact that setting the date can have.  My eyes tear up as I write.  It's not because I am not confident in her team.  Advocate has an amazing team of surgeons, doctors, nurses and care technicians.  As much as we have been hospital free for almost 2 years, setting the date brings me right back to day one.  The memories flood in (not all of them bad)

-standing by her NICU bed waiting for her to get big enough 

- entering the PSHU for the first time 

- meeting Dr. Nater after surgery discussing Lucy's body 

-The hallway packed with doctors after Lucy coded

-Sandy waiting for me with open arms as I sobbed on her shoulder, giving me updates as she could.

-The daily routine of hospital life

-Talking with Jen about her wedding to give my mind a break

-The news we would stay impatient until her next surgery

-The phone call at 9 pm to tell us we needed to be back at the hospital

-Dr. Van Burgen doing CPR as Lucy's heart rate plummeted

-all the set backs

-Graduating to Floor 2 only if we moved into the hospital

-my evening chats with Maureen 

-Dr. Penk telling me I need to try again after the first failed attempt of NG tube placement

-Sitting with Dr. Van Burgen the night before discharge going over our checklist

-going home for the first time after 96 days in the hospital

-All our friends (known and unknown) that prayed with us each step of the way

April 20th we will get up and head to the hospital.  The Fontan procedure will connect the blood vessel (inferior vena cava) that drains deoxygenated blood from the lower part of the body into the heart, to the pulmonary artery by creating a channel through or just outside the heart to direct blood to the pulmonary artery.  At this stage, all deoxygenated blood flows passively through the lungs.  After this surgery Lucy's saturation's will be closer to normal in the high 90's.  The average stay is seven to ten days.  I know it will be different this time.  We are all stronger.  As strong as we have become, sometimes I wish we didn't have to do it.  That I could wave a wand and it would all go away.  But I can't, so we put our faith and trust in God knowing he will carry us through.

3 is the new 2

Our baby girl is three.  I almost can't believe it.

I had the follow-up meeting with the school district about Lucy's evaluation.  When I walked in, there was a look of disappointment across the group of therapists.......because they had wanted me to bring Lucy.  Never did a look of disappointment feel so good.  All of the therapists wanted a little more time to hang with Lucy.  It speaks volumes to her personality.  The results were very good.  She tested at age appropriate skills, with some emerging skills at 42+ months.  Needless to say, she did not qualify for any services.

We started off the month by celebrating heart month and bringing awareness to Congenital Heart Defects by wearing red.

Her birthday week began with making valentines for school.  She got yogurt with sprinkles for breakfast and got to wear the birthday hat at school.

We finished off her birthday with a visit to the bounce house at the mall, cupcakes and presents.  Connor even got in on the fun.  And in full disclosure, I was more excited about her Molly backpack (bubble guppies character) than she was.  She liked the coin purse that was inside much better.

We ended the week with a small pizza party with family.
Lucy brought new meaning to the song......It's my party and I'll cry if I want to!
Apparently when more than 3 people sing happy birthday it is just too much!

This last week is a big week for us.  We attended our last Cardiac Neurodevelopmental Clinic.  We got a great report card.  Keep in mind we stopped all therapies in September, so all progress was made on her own (working with my parents, teachers and us).  Gross motor she tested at 23 months in August, that is over 12 months of progress in 6 months.   Language (both receptive and expressive) shows 48+, the + means that the time allotted for evaluation was not enough to test her full range.  We made it up to 48 months testing questions and had to stop, so who knows how much further she could have gone.  It's exciting to see her grow so much without scheduled therapy sessions.

We will end the week with Lucy's pre Fontan heart catherization.  We will get to the hospital bright and early Friday morning as she is first case.  They will take a better look at her lungs and heart to see when surgery is needed (if she is a candidate).  We will need to stay in recovery for at least six hours and there is a possibility of an overnight.  Wish us luck that there are no surprises and the procedure goes as expected.  We'll update as soon as we get the results.

Goodbye 2016

2016 was a good year for us.
- We welcomed Connor into the family
- We graduated from speech therapy, confidently eating all food orally
- We  excelled at both Neurodevelopmental clinics, testing almost at age level in all areas
- We graduated from Early Intervention, six months early
- We managed an entire year without surgery, hospital stay or any major interruption in our daily life
- Connor started food and taught me that eating can be easy
- We are almost all sleeping through the night regularly

This year looks to be a little more trying.  We head into 2017 with the 3rd of the 3 step surgical procedure to repair Lucy's heart on the horizon.  To say we are not prepared is an understatement.  Our routine cardiology appointment ended with a Holter monitor.  Seeing Lucy hooked up with cords and a little satchel to hold the the battery pack sent me back to our hospital days.  The Holter monitor is a battery-operated portable device that measures and records heart activity continuously for 24 hours.  It has wires with five silver dollar sized electrodes attached to her chest.  It is the first step in preparing for surgery.  The echo give us a snapshot at Lucy's heart.  This device will allow us to see how it is functioning throughout a full day.   

  Our next step will be the catherization.  It will allow the doctors to get a better look at her heart function and lung pressures.  We are scheduling the procedure for the end of February.  It will be an overnight stay in the hospital and our first taste back there.  I know the amazing staff at Advocate will welcome us back with familiar faces (and hugs) and Lucy will be in great hands.
  Amidst the black cloud that is looming surgery, we still have so much to be grateful for and look forward too.  

-a third birthday

-a first birthday

-10 year anniversary

- the big 4-0

We had our school district evaluation.  I meet with the team Thursday to review the results.  It will tell us if she has any delays and would qualify for help through the school district.  I spent the hour in a separate room going over Lucy's medical history.  Who knew a medical resume would be such a handy thing!  I am excited to hear how well she did.  But I have to say, my favorite part was coming back into the evaluation room to hear the therapists tell me Lucy was one of the politest little girls they have ever met.  SO PROUD.




















Connor will be turning one in just under three months.  Oh my.  He is a pro at sitting!  He is also a pro at making very loud noises.   He is anxious to move but doesn't quite want to crawl.  I truly believe if he could skip the crawling and start walking he would.  He loves food.  I mean, he cannot open his mouth big enough and the minute he sees that bottle it is all over.  His first teeth are on the verge of popping through the top gum.  His night time sleeping is getting better and better.  We found a little trick that works wonders.  When he is a little squirmy, holding a pacifier in his hand calms him right down and puts him back to sleep.


Other fun things we did were:

Trotting at the annual Dan Gibbons Turkey Trot.  Connor experiencing the race for the first time!  Helping to feed the hungry across Dupage County

We celebrated Thanksgiving.  GG got to feed Connor.

We had a fabulous Christmas.  We hosted both eve and day and Lucy could not have loved it more.  The attention from the grandparents, aunts, uncles and cousins was her most favorite part.  Staying up later than normal was a close second.  Presents were right up there too.  Connor was not a big fan of the crowds and noise.  I have no doubt he will grow to love it as much as Lucy.

We thank all of you, who have kept us in your prayers throughout this year.  We couldn't be more blessed to have you in our lives.

Happy Tube-Free-versary

We made it!  One full year tube free!

I recall the anticipation of pulling the tube last year was filled with excitement and anxiety.  Excited for Lucy to not have a tube up her nose and down her throat.  Excited to not have to rely on a machine to provide her nutrition.  Excited for us not to have to replace that tube every thirty days.  The anxiety came with the failure of this second trial.  Our first trial although unsuccessful gave us information that allowed us to tailor a new plan for Lucy.  This time around a failure meant surgery.  We knew that if we couldn't intake all food orally a g-tube would be necessary.  Surprisingly, the worry wore off rather quickly and by December we were letting Lucy regulate herself.  Measuring everything little thing came to a stop.  However, there are still some residuals from her aversions:
  She still likes to have help when eating.
  She hasn't quite figured out when there is too much in her mouth.
  She still sees mealtime as playtime.

But, she does know when a bite is too big or when she is all done or when she doesn't like a particular food.  She also knows when she eats well, a treat is in her future.

A year in, we have gained three pounds.  We couldn't be prouder of her accomplishment.

Mid October we returned to the cardiologist after a 5 month break.  The week before the appointment we practiced 'echoes' using lotion and a brush.  We talked about laying really still so the doctor could see her heart.  She also gave me one and told me to lay still too.  During the appointment she did exactly that and the echo was completed in a record 30 minutes.  She also sat very still for the EKG and loved all the 'stickers' they let her keep after.  I think Lucy is becoming a pro at this.  When Dr. Husayni came in to discuss echo results, he had 4 residents with him.  Lucy allowed all of them to listen to her heart.  Something which would have resulted in tears in the past.  The outcome:  heart function-good, Aorta-no narrowing, Oxygen saturation-still in normal range.  We earned a three month break at which time we will return to discuss scheduling a catherization to see if Lucy is a candidate for the third surgery.

You read that right....candidate.

I panicked....what if she isn't a candidate, why are we just hearing about this now and what does that mean moving forward.  After discussing with Dr. Husayni, the gist is, there is some criteria for having the Fontan and being able to live the new physiology.  The two biggest are lung pressures and heart function.  If she is not a candidate there are some options, like a modified Fontan.  But until we have the catherization, there is no reason to worry.

In the meantime we are enjoying the fall!
We attended the annual Cardiac Picnic, of course to say thank you to our doctors and nurses.

We goofed around

.

And celebrated Halloween

Connor had his six month check-up.  He is growing like a weed.  He is already up to 15 pounds.  That is quite a ways from the four and a half pounds he started at.  I mean that dollar bill is almost as big as him!

We are talking a lot!  Eating baby food which seems to have halted our bottle feedings.  We are sitting fairly well, with some wobbling.  Connor smiles all the time and for the most part sleeps through the night.  Before Connor arrived we had talked about after our hospital time and how hoped he would be a super chill baby.  And boy did we hit the jackpot.  Cannot wait to see him grow into a toddler and interact more and more with Lucy.

another clinic in the books

First, I want to thank all the people that contributed to our fundraiser for LJ's Healing Hearts.  Whether you attended the event, sponsored, volunteered or donated, each of you played a part in making the event amazing.  We were able to raise over $10,000.  I, for one, cannot wait to see how many more families we can help in the coming year.

Last Tuesday, we doubled up on appointments with Lucy's neurodevelopmental clinic and Connor's four month check up all in one day.  Lucy and I trucked down to  the hospital for her clinic session and it was more good news.  It makes me smile when I think back to her interaction with the therapists.  She was so playful and this time around there were no tears at all, a welcome change from last clinic.  She played, talked and sat through the testing.  All the therapists were impressed with her progress.  At 30 months, Lucy is only behind in her gross motor skills.  Her receptive and expressive language took at big jump up to 38 and 40 month respectively.  It is quite obvious as she jabbers all the time.  A couple of her favorite phrases:

'What do we have here'    ...  when looking at a book or toy
'It's hard for me'               ...  when trying to do a puzzle that is above her age
'Hi.  How are you?'          ...  every time some says hi
'Where can it be?'            ...  when we are looking for something
'Hi buddy'                        ...  her greeting to Connor

On a daily basis she cracks us up.  We are coming out of a rough patch of extra crying and neediness as a result of Connor's presence.  I don't think it fully hit her until I went back to work part time that she was going to have to share grandma and grandpa's attention.  What I think helped her out of it was my cousin Mackenzie coming over to spend some quality one on one time with her.  Every week she looks forward to it and they get a couple of hours to play and goof around!  It is a great bond that is developing and I can't wait to see how it grows!  We are also settled into a nice routine which has helped as well.  Connor is on feeding schedule of four bottles a day.   We get him up at 10 pm for his last bottle of the night and he sleeps through the night, for the most part.  He weighed in at twelve pounds, eight ounces and is finally on the growth chart at his check up!  He's making much quicker progress than Lucy and at the rate we are going will weigh more than her (22 lbs) in no time.  We talked a little about feeding and what's next on the horizon....this is all new to me.  We get to start rice cereal in a couple of months and add in fruit and veggie purees.  Tummy time is going well and he is lifting his head up.  I am excited to see all these milestones, but man, thinking about having two mobile kids is quite scary.  He is also quite a talker...I can just imagine the conversations these two will have.

We will update in October after Lucy's cardiology appointment and Connor's six month check up.
A couple pictures to hold you over until then:

Lucy loves the water....pool, puddles, bath  any and all things water

He is starting to develop quite the personality

maternity leave

As I return to work after my full time maternity leave is up, I can't help but compare this time from my leave with Lucy.  In all honesty, I thought this time around would be a cake walk, it wasn't.  It was just different.

Days with Lucy were exhausting both mentally and emotionally while Connor napped and fed.  Lucy was cared for by an awesome staff, while I slept through the night at home.  Connor's night schedule is not something to be desired.  Almost eight weeks in and I am still trying to adjust.
Lucy's crying was so stressful (even in the hospital).  I can still remember my back just getting tight at the first sound of hysterics.  Connor's crying is bearable during the day, but at night I still can't handle it.  I am sure most of that comes from our experience with Lucy.  Lucy's feeding was an exact schedule while I am still trying to figure out Connor.  The nice thing is Connor is getting easier a lot quicker than then Lucy.

What I have come to find out though, is whether your child is chronically ill or healthy, a hospital stay is like jail.  A chain around your ankle making it almost impossible to leave.  Although Connor's stay was much much shorter, those same feelings arose.  I had so much trouble leaving his room, even though I know it's healthy for me.  Even worse is that this carried over when we left the hospital just like last time.  It was hard to do anything except sit at his side. Slowly that has changed and aside from lack of sleep, maternity leave at home is pretty great.

I was even able to squeeze in a newborn photo session.  Here are some of my favorites

We had Lucy's cardiology appointment and it was another great one!  The whole way to the appointment we practiced what she would say to her cardiologist.  He walked in and with a little prompting she said, 

"Silly doctor, my hearts just fine"

And to my surprise, she wasn't far off.  She was amazing during her echo with no tears and for the most part sat pretty still.  Her results:  no appointments for six months.  I can still hardly believe it as I type it.  We don't go back to see the cardiologist until October.  OCTOBER!  All issues are unchanged from her last appointment.  We talked a little about her 3rd surgery and we are still looking at next year.  I definitely am not ready for it.  I think about keeping her confined to a bed and one room and I can just hear her saying, "walk around.  walk around out there".  Maybe by the time she is three we will have some fun activities that can keep her sitting for eight plus hours a day.  But let's be honest, sedation is going to be our best bet!

We are really excited to enjoy the summer with only one trip back to the hospital in August for the neurodevelopmental clinic.  We are hoping that she is caught up in all categories and we can look to stop all therapies.  In May, we unofficially graduated from speech and nutrition because we are officially eating like a two year old.  Praise God!  It's been quite a road, but I am happy to be here.  In each moment you never seem to think you'll get there, so it is nice to look back and see her milestones and be grateful for each one.  We will be looking to move our annual Early Intervention meeting up to the end of August and hope we can graduate from the program all together.  

Lastly, an updated family photo.  We got this one much quicker!