Olivia updates

Normally I don’t update twice in one week but our little Miss decided she would show off last night and started saying new words.  So it was time to do a “what Olivia is up to” update!

Words
She’s been not saying too much we can understand.  But last night as I was taking the picture for the website and Little Hearts calendar I said “Olivia, say cheese!” and she responded with “CHEESE!”  and then I tried “Please” because it sounds similar and she said that as well!

So she can say:
Please
Cheese
Baby (not regularly)
Mama
Dada
Mommy
Hi
Bye
num-a-num (eat, food, etc)

Fine motor skills

She’s started to take an interest in coloring!  She has been sitting with the big kids during art time at Diana’s and coloring up a storm. She will also color when we go out to eat. We just need to keep an eye on her because she thinks it’s funny that I react in a big way when she puts the crayon in her mouth (YUCK!)

Olivia has mastered blowing kisses. It’s the sweetest thing!

Already picking up older men
I was driving her to Diana’s this morning and we were at a red light.  Out of the corner of my eye I see this truck and the driver is waving at Olivia!  I look over and there’s a man in his 30s waving to her in the backseat from his box truck! I tried to get her to wave back but she was tired and not in the mood to perform.  He then looked at me and said “she’s CUTE!” I said “Thanks” and we went on our way.

So proud of her big sister
Last night was the observation night at swimming for Maddie.  Olivia sat on my lap during class and waved, clapped and pointed at Maddie the entire 20 minutes!  She was so proud of her big sister!  Plus Olivia’s “teacher” for the “parent and me” swim class  was helping out during Maddie’s class so Olivia was making the connection.  It was so sweet to see Olivia waving and Maddie smiling so big in return.

RSV prevention appointment

Arnie took Olivia to the marathon RSV prevention drug trial appointment on Monday, October 24.  Here’s how it went:

Arnie arrived around 2pm.  Before they did anything, Renee put a numbing cream on Olivia’s hand to help numb the area before the blood draw. Olivia spent a lot of time attempting to take off the tape but was unsucessful.  45 minutes or so were spent going over the consent form.  Arnie felt it could have gone quicker had Olivia been a bit less demanding but she’s 15 months so it’s to be expected.

Her exam showed that she weighed 21 lbs, 9 oz and her oxygen sats were 82%.  Although her lungs sounded quite clear, because she’s been nursing a cold for a week or longer, they chose to do an RSV test on her.  They sprayed saline in her nostrils and then sucked a bunch of junk out to be tested.  Olivia was not too pleased with that part of the appointment.  They noticed that Olivia’s right ear seemed a bit red, as if she had a minor ear infection.

After the RSV test came back negative, Renee was able to get the blood draw done on the first try! I believe that’s a first for Olivia who normally gets poked multiple times before they get a “good” vein.

She received both shots at the same time (one in each leg).  She cried for a minute and then was fine.  They kept an eye on her for a bit after to make sure she was fine before sending them on their way around 6pm!

I thought Arnie would be crabby for having been there all day but he said Renee and Dr. Wolkoff made it pleasant for both him and Olivia. Olivia got TWO new toys! A blue carebear that has a bell/rattle in it and a driving console toy. Both new right out of the box.

They both said she is HIGHLY intelligent because of her precociousness and her ability to do things most children her age couldn’t do. Renee had used her keys to open a cabinet in the room. Olivia reached for the keys so Renee gave them to her. Olivia walked right over to the cabinet and attempted to use the keys to open it! She also was using Renee’s photo album (attached to her keys) as if it were a phone – putting it up to her ear and saying “hi”.  They were also impressed that Olivia can maneuver her sippy cup into the holder on the side of the diaper bag.

All in all it went extremely well.

Renee called me today (10/26) to check on Olivia.  She again commented on how intelligent she was. She asked how Olivia did that night and since. I told her that Olivia had a rough night on Monday evening (for Olivia anyway).  She had a rough time going to bed and so we gave her some tylenol assuming her legs might be sore from the shots. Then Olivia woke up around 2AM and was super fussy. She normally sleeps straight through. It took a few sips of milk, a diaper change, a dose of tylenol and some cuddles and hugs from Mommy to get her back to sleep (with a blanket).

Our next appointment will be Tuesday, November 22 at 8AM.  This time I’ll get to take her :)

Pregnancy post Fontan

Now we don’t need to worry about Olivia even thinking about becoming pregnant for many, many years. However, we have been told that single ventricle patients are discouraged from getting pregnant because of the risks associated with their hearts.

I came across this on one of the message boards I post at:


Anaesthesia
Volume 60 Issue 11 Page 1137 - November 2005
doi:10.1111/j.1365-2044.2005.04334.x

CASE REPORT
Caesarean section following the Fontan procedure: two different deliveries and
different anaesthetic choices in the same patient L. Eid1, Y. Ginosar2, U.
Elchalal3, A. Pollak4 and C. F. Weiniger5

Summary

The Fontan procedure is performed for patients with a hypoplastic right
ventricle, and pregnancies following this palliative surgery are likely to
increase. We present a parturient with the Fontan physiology who successfully
underwent two consecutive caesarean deliveries; the first under general
anaesthesia for emergency surgery and the second under regional anaesthesia for
elective surgery. We suggest that pregnancy and delivery do not typically
adversely affect maternal cardiac status in these patients. Attention must be
paid, however, to fetal loss, prematurity, growth retardation and associated
cardiac congenital malformations for which insufficient data exist in the
literature in this patient population.

I emailed this information to Olivia's cardiologist to see what her take was. She responded with the following:

Here is what I found in the medical literature last time I searched this topic
(a few years ago):

The largest, most often cited study of pregnancy in Fontans was published in
1996, looking at 33 pregnancies in 21 single ventricle mommies. There were
13 miscarriages, 5 abortions (10 or 15 years ago, these women were often
counselled that pregnancy put their own life in danger) and 15 live births,
ranging from 28 weeks gestation to full term. No maternal mortality, one
complication (arrythmia). The big difference between these patients and
our current "crop" of Fontans, is that most of them had their Fontans as
teenagers or young adults, so they lived with cyanosis for many years before
getting fixed.

A more recent article (2001) reports 4 "successful" pregnancies in 3 Fontan
patients. The babies were all premature (26-35 weeks), there were some maternal
complications (arrhythmia, ventricular dysfunction, and fluid build up) but all
were medically managed - no mortality.

So, bottom line..... Cautious Optimism! I expect in 20-30 years, Pregnancy in
Fontans will be much more common place and not so scary. By then we will figure
out how to optimize the outcome for mom and baby.

So with medical advances, Olivia's chances of becoming a mom herself are very good! :)

Flu Shot Appointment / Updates

Flu Shot Appointment

CHECK!  We are all vaccinated. Whew!  While Arnie had to deal with some resistance at our clinic on Friday, he dealt with it beautifully so I didn’t have to.  What a guy!

At the appointment Monday evening Dr. Friedman wanted us to check with Dr. Heller to see if she felt Olivia should receive the adult dose of the pneumonia vaccine (“Pneumovax”) at her 2 year checkup.  Dr. Friedman was pleased we are doing the Drug Trial for RSV prevention (“Numax”).   We requested and received a refill on Olivia’s amoxicillan prescription.

A 44 year old “single ventricle”

While waiting for our appointment in the doctor’s office Monday evening, we ran into a woman who is 44 years old and has a similar anatomy to Olivia’s!  She was there with her teenage daughter. She overheard us talking to another woman about Olivia and commented for us to “not worry because she’ll grow up to be an old lady”.  We knew immediately this woman had some insider’s knowledge since normally we deal with shock, horror and / or sympathy when people find out about her.  She looked very healthy and couldn’t even remember what surgeries she’s had – it’s been that long!  And she has been pregnant 5 times!! It’s possible!

“Olivia, what does a doggy say?”

We were in the waiting room at Dr. Friedman’s office and they had on the 101 Dalmations movie.  I said to Olivia “what does a doggy say?” And she responded with “woo! Woo!”  Close enough for me! :)

A year ago today

A year ago today Olivia had her first cardiac cath at CCMC.

That’s all for now. I hope all is well with everyone!  Next update will be after Olivia’s first Numax vaccination on Monday, October 24. Hopefully Arnie takes good notes so I can get all the information documented here.

RSV / Flu Shots

Another fall, another go around regarding RSV prevention.  While I don’t want to wish away Olivia’s toddlerhood, I look forward to the day when she’s old enough to not need these shots.

When we last covered this topic I was in the process of getting Dr. Friedman’s office involved in getting Olivia’s synagis.  I have spoken with both nurses, BC/BS of IL (insurance) and Professional Health Care (pharmacy providing the Synagis).  Long story short, Professional Home will not be shipping synagis until the last week of October. Hmm, if I can get the same (or better) drugs for free via CCMC for the same timeframe – I’d rather go with FREE.  Saving the insurance company approximately $10,000 in drug costs and myself about $1200.

I spoke with Renee Richard today. She’s the nurse in charge of the RSV drug trial at CCMC. She is getting her supply by October 19.  Arnie was already taking a half day on Monday, October 24 so we scheduled Olivia’s first appointment for that afternoon.  I’ll  be so relieved when we finally have the first dose in her.

Flu Shots

By Monday evening the entire Belfonti household (minus the cats) will have been given their flu shots.  Arnie and I have appointments at a local grocery store for Friday, October 14. And Olivia and Maddie are scheduled for Monday, October 17 at Dr. Friedman’s office.

Cardiologist Appointment / updates

Yesterday was Olivia’s appointment with the cardiologist.  We last saw her in June.

We drove up early because we wanted to stop in and meet a family that our cardiologist had “referred” to us.  Their daughter had her second heart surgery on Monday.

Since visiting hours aren’t until 10AM we had to do a bit of a song and dance to get into the ICU. We checked in at the front desk and told them we wanted to stop up to say hello to the nursing staff on the floor.  That got us in.

Oh how weird it is to be back at CCMC, especially on the 3rd floor where the PICU is located. Arnie said as soon as we stepped off the elevator he felt his heart jump and his pulse race.  Mine did as well.

We first stopped over at the nursing station and saw Jess (who used to be a night nurse), Kathy (who has been with us every single PICU visit from day 2 of Olivia’s life), Emily and Claire. They all oooh’ed and aaah’ed over Olivia who wasn’t too sure what was going on and kept her “serious” face on the entire time.  Then I asked them if Kim (mom to heart baby Noelle) was available.  She was and we got to peak in on Noelle. Oh, she’s just precious! And Kim was so nice! I wished I could have stayed and chatted but I knew we were pushing our luck and so we scampered out before getting thrown out.

Next was our appointment with Dr. Heller. Oh, how I LOVE this woman!  She was wearing the pin Laura (Lily’s mom) & I got her (three people holding hands with hearts on them).  Olivia looks GREAT. They did an EKG and it was perfect. Olivia didn’t fuss at ALL with all those stickers on her and wires.  Then they weighed her.  21 lbs, 2 oz! And she’s 29″ tall.  She gained 1 lb, 2 oz and grew 3/4″ since July!

Her heart and lungs all sounded great according to Dr. Heller.  She had a hard time getting an oxygen read on her but the machine wasn’t cooperating. Finally we got a read of 83% which is higher than the 80% she read back in June.

Dr. Heller did an echo on Olivia as well. Everything looked great and she noticed “mild regurgitation” from the valve which she said did not worry her.

I asked about the Fontan (3rd surgery) – she said we’re no where near ready to even think about that. She has to be over 30 lbs and she’s just doing great so it’s not even on the horizon.  Music to my ears!!!!

We don’t go back until MARCH of next year! That’s 5 months from now!  And so far out that they don’t have next year’s schedule yet.  I need to call and make the appointment next month.

Clinical Drug Trial (RSV prevention)
We had an appointment with Renee from Clinical Trials to go over the consent form for the Drug Trial for the RSV prevention drug.  That all fell through unfortunately, although it wasn’t for the reason I had expected.

There are two children in the PICU with RSV.  This is very early for RSV season. Normally they don’t start vaccinating until November. (However, Olivia’s first synagis shot was October 18 last year so the season started early last year as well)

The drug company can’t guarantee that they’re going to have the drug trials ready for the week of October 17.  Renee was concerned that Olivia needs to be vaccinated now and not in 2 more weeks (or more depending on how long it takes to get the drugs shipped and ready).

So Renee suggested we start the ball rolling with Dr. Friedman’s office to see if they can get us the shot earlier.  Renee said we’re perfect for the study, however her first priority is keeping Olivia (and all the kids) healthy and out of the PICU for the winter. She felt that was in Olivia’s best interest medically.  Olivia really took to Renee – climbing on her and hugging her. I’m disappointed that they won’t be seeing each other every month, but I completely understand and appreciate Renee’s concern for Olivia’s health which is the number 1 priority of everyone.

Synagis
So now we’re on the fun rollercoaster of getting the synagis shot approved for another year.  Arnie and I both talked to Dr. Friedman’s office yesterday. And today I spoke with Dr. Friedman’s office, the insurance company and Professional Home Care (who is the supplier of the Synagis).  At this point Professional Home needs to call our insurance company today and we might be able to get Olivia the Synagis as early as next week.

We’re hoping to be able to have the visiting nurse meet one of us at Diana’s (daycare).  It’s very close for either of us to get there and would save some time off from work.  I will have to check with the visiting nurse to make sure that works for them.

More teeth!
Olivia’s finally got all four molars in. She now has 12 teeth! 4 in front and two in back on the top and bottom.

Big girl at daycare

Earlier this week I went to pick up Olivia and was in for a shock.  Olivia had taken a nap with the big kids!  Diana has a bedroom dedicated to the baby’s nap room (has a crib and pack & play in it).  Olivia had been napping in there with Jenna.  However Diana has been having problems with Jenna screaming when she wakes up which then wakes up Olivia.  So Diana decided to try Olivia on the sleeping bag and she’s done exceptionally well! For the meantime Olivia’s using Maddie’s princess sleeping bag but I’ve ordered Olivia a “nap mat” from Lillian Vernon.

Feeding
Olivia is now demanding that she feed herself everything. We have to bring two spoons to the table – one for Olivia to feed herself and one for us to feed her. She’s growing up so fast!