Primary Children's Visit 2

This appointment was not as big of a roller coaster as the first visit.  I find that I get better each day, still have rough moments but overtime all things heal right?

They did another Echo Cardiogram & again we went into the little room to talk.  We had a different Cardiologist & I think I like her better (too bad I can't remember her name!).  Maybe it was because she didn't tell us the bad news, just answered all the questions from the first time.  I'll post the questions & answers in case you want to know too...

One of our first questions was what are the percentages of making it to the final surgery we know the odds of surviving the surgery, we want to know the odds of actually making it to the final surgery.  She said it is about 55-60%

What's the average oxygenated blood after the final surgery.  Low 90s a normal person is about 98.  The child will have energy & will want to do everything their siblings are doing.  A lot of times mom's ask if there's anything they can do to SLOW them down :)

What medications are the babies going to be on?  Aspirin always, Lasix after surgery to help get rid of excess fluids, might go home with it twice a day & then through clinics weened off.  Antacid sometimes babies are more acidy because of the feeding issues than a typical infant.  Then if there are additional complications high blood pressure etc usually case by case infant can be on additional medications if needed.

Since the child will be on aspirin how concerned are we going to be about bumps & bruises? My toddler today fell of the chair on the tile, how big of a risk to HLHS child would that be?  Usually on just aspirin there rarely is a bleed in the brain that is life threatening, however sometimes the kids need to be on additional blood thinners.  The Aspirin makes it so the blood isn't as sticky/doesn't clot as fast, but shouldn't be to big of a deal.

We have a dog...  Oh good I think dogs are great for kids, we have dogs visit the hospital all the time.  So we can keep the dog?  However stress reasons we still may be looking for a new home...

I am NOT a germaphobe, how much am I going to have to change?  Sounds like if the 7 year old is going to school things can lax a little after the final surgery right?  Basically if you have a cold don't come in the house. Cold are going to happen, don't let the kids wipe their nose & then touch the baby much like we would with any other brand new baby.  Thank heavens we're due in March & near the end of RSV.  They will be immunizing for everything they can to keep the baby healthy, the period between the first surgery & the second (3-6 months) seems to be the most crucial for good health!

I really want to nurse my baby if at all possible.  She's seen a total of maybe 7 mom's that leave the hospital breast feeding out of the 100s she's seen.  A lot of times the baby burns as many calories as they take in breast feeding.  Mom's milk is the best for the baby, but I would plan on pumping.  If you can stick with pumping there's a good chance that after the 2nd surgery you can breastfeed.

Are all 3 surgeries open heart?  Open heart no just the first surgery, the others are open chest, but can work outside of the heart.

What role does the community Pediatrician play at the start?  A friend told me you guys call weekly between the first & second surgery for weight.  The pediatrician & us will be in communication a lot, we like to have a bigger role during the crucial period, because we cross off everything that could be wrong with the heart first & then go to regular infant problems.  The pediatrician will provide all the immunizations.  PCMC will provide us with a scale to take home & the we return it when we come in for the 2 surgery.  Kind of nice!

We asked so many questions that we failed to ask if things still looked good & if there were any other complications.  Guess we know what we'll be asking in February.  Figure if there was a major problem she would have confronted us about it.

We also got a book all about CHDs & the medications they could be on, the machines we might see etc & in laymen terms! Kind of excited to have that as a resource!