Pre-op appt with Dr. Heller

Olivia weighed in at 9lbs, 3 oz. Michelle (4th year medical student) said that Olivia is growing better than they could hope for a heart baby. She’s in the 50th to 70th percentile for weight!!!  Breast milk seems to agree with this kid.

Oxygen levels were in the mid 70’s.  Heart and pulse rates were where they need to be and “very good”.

She did an echo and the shunt looks great.

We need to schedule another followup for 6 weeks

She gave me a copy of a letter she sent to Dr. Friedman about Olivia to give to the anethesiologist which I will type in when we get back from this surgery – it confirms the “defect” that will make Olivia’s Fontan (3rd surgery) so much easier

Visiting nurse appt / Weight Check

According to Alison’s scale, Olivia weighed 8 lbs, 12.5 oz. Which is a 4.5 oz gain from last week. Oxygen levels were mid 70’s (I don’t have my notes with me right now).  I was concerned with the little weight gain for the week so I scheduled a followup weight check with Dr. Friedman for later in the day.

Olivia weighed 9 lbs at the Dr office! Dr. Friedman said she’s gained 23 oz in 18 days which is fantastic for a “healthy” baby – never mind a heart baby!  We no longer need to mix the formula as high calorie when supplementing with formula.

While I was at the doctor’s office we made some adjustments to Olivia’s meds.

Zantac is now 0.9 ml 2x a day. (used to be 3x a day which is a nightmare as she hates the med)

Amoxicillian is now 1 ml 2x a day down from 1.5 ml 2x a day – but she increased the concentration from 150 mg / ml to 250 mg / ml. This will increase as Olivia grow

Random Thoughts

Just wanted to update on how we’re all doing.

FANTASTIC is the best way to describe it. Olivia is such a great baby.  Cries when she’s hungry, wet or when you are messing with her (changing her diaper, giving her a sponge bath, changing her clothes).

She sleeps so well – she’s up between two and three times a night for feedings.

Arnie and I were talking in the car … we often “forget” she’s sick because she is doing so well. Not that we’re lax with her, just that we don’t treat her like she’s made out of glass.  We were so prepared for the worst and it seems we’ve gotten the best.

Maddie Rose is loving being a big sister. She wants to help with everything – from handing us the diaper to giving Olivia a bottle.

So that’s all from here for now. We have a VNA appointment tomorrow and a few visits from friends at the end of the week.

Consult with Dr. Hechtman

Surgery will take 90 minutes.  Basically the surgery is “plastic surgery” to relocate the bowels to significantly reduce the chance of her bowels twisting which would cut off blood supply to the intestines which is very, VERY serious.

She will not lose any intestines with this procedure. They will remove her appendix while in there as it is on the wrong side.

They will do the surgery with a regular inscision as lathroscopic could mess up the pressure in her heart.

Average hospital stay is 4 to 5 days. We will be back in the PICU after due to her heart issues.

Most risk is related to her heart.

She will have a nose tube for a few days after to handle the stomach bile until her intestines start working again.

Risks: infection, bleeding.

Surgery is scheduled for 9/1/04.

Weight Check

Olivia had another weight check with Dr. Friedman this morning.

She weighed 7lbs, 9 oz! That’s a 3 oz gain in 3 days which is where they want her to be (Average weight gain).

We talked about vaccinations as the visiting nurse had some concerns about “live viruses” being introduced to Olivia’s system and her not being able to fight them off. Dr. Friedman said they aren’t live viruses. We will plan on giving Olivia her vaccines as early as possible – so our next appointment is August 30th which is 6 weeks.

She gave me a refill for the amoxicillan.

Two questions I have to ask Dr. Heller:

What’s the formula mg. per Kilo for Olivia’s amoxicillan?
Does she agree that we do the vaccinations early?

I need to call and schedule a pre-op visit with Dr. Heller.

Cardiologist Appointment

Olivia weighed in at 7lbs, 8.4 oz.

Her oxygen levels were a bit low for my liking. 68-72%. But Dr. Heller said Olivia has been known to bounce around with her oxygen levels so she’s not worried about it.

Dr. Heller did a ultrasound so Maddie, Arnie and I got a good view of Olivia’s heart. And we got to hear it :)

We had a chest xray done and her lungs are A-OK – so no more Lasix!

We go back in a month.