Reality Check

We have been getting so excited for Pedro to arrive, and our preparations and anticipation distract us from worrying too much. Afterall, we really won’t know what will be needed until shortly after he is born. So, we are optimistic. Sometimes being optimistic makes it somewhat bitter to swallow any news other than “things look the same” or “he’s doing fine”. We find ourselves secretly hoping that one of these days the doctors will pronounce Pedro’s heart miraculously healed or something.  I know, I know, in denial much?

We made a visit to St. Joe’s this morning for a fetal echo and consult with Dr. Diab. As before, they could see that Pedro’s tricuspid valve is leaking significantly and that his heart is enlarged. Dr. Diab indicated that Pedro’s heart fills (or will soon fill) the majority of his chest cavity. Dr. Diab suspects that Pedro will need immediate surgery to put a shunt in, but it will all depend on how things function once he’s born. Apparently one of the benefits of the shunt would be that his heart would rapidly shrink down and be a closer-to-normal size. I believe the main purpose of the shunt, though, would be to make sure that enough blood can get to the lungs.

On Friday we will meet with the surgeon, Dr. Nigro, again, so we’ll have a chance to learn more about what would be entailed in the shunt procedure.

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Take Heart

We had a fetal echo at St. Joe’s on Wednesday and met Dr. Alboliras, one of the Pediatric Cardiologists at the Heart Center there. He was pretty positive about everything, and got a good look at Pedro’s whacky ticker. Although the right side is enlarged, Pedro’s heart rate is still good and circulation to the lungs, etc. is still normal. Dr. Alboliras indicated that the regurgitation is only moderate at this point and he feels confident that we will be able to go full term!

Dr. Alboliras also said that Pedro’s tricuspid valve (particularly the long leaflet) looks amenable to surgical repair–meaning it’s fixable, in his opinion. As always, we will have to see how Pedro does once he makes his debut. He will probably be in the NICU for at least a week or two while they stabilize (if necessary) and monitor him.

All Roads Lead to Nigro

Yesterday I had a consultation with Dr. Jedeikin from the Arizona Pediatric Cardiology group (affiliated with the Phoenix Children’s Hospital) for a second opinion/option kind of thing. We were tempted to cancel the appointment because we feel so good about the St. Joe’s group, but we decided that we should see what Dr. Jedeikin  had to say. You know, due diligence and everything.

Dr. Jedeikin seems really great. (And I’m not just saying that because I like his South African accent…) He is very, very passionate about hearts and cardiology. He did a fetal echo and went over Ebstein’s Anomaly with me again. I always learn new things about the heart, and I came away in awe of all of the many facets of a human heart–how do all of those parts work perfectly in most people?!

Dr. Jedeikin’s assessment and approach to Pedro’s case is pretty much the same as those we’ve heard from the other doctors involved. He hopes that immediate surgery will not be necessary, and has pretty much the same plan for monitoring our little guy’s heart–both pre and post delivery. He had good things to say about the Phoenix Children’s Hospital (PCH), but apparently he could work with us even if we choose St. Joe’s for delivery. He encouraged me to deliver at St. Joe’s since that is where my new OB delivers (rather than switch OB’s again in order to deliver at the hospital near PCH). From this I concluded that both hospitals are a good choice, and we just need to pick the one that we feel most comfortable with. They both have Level 3 NICU’s.

Probably the most interesting/encouraging part of this consultation was that Dr. Jedeikin would involve Dr. Nigro for the surgery aspect. Dr. Nigro seems to be the go-to guy for surgery in these cases, regardless of which hospital we go to.

So, since:

  1. the hospitals are comparable
  2. we get Dr. Nigro either way
  3. the Pediatric Cardiologists are excellent either way

…we are free to choose the hospital and Pediatric Cardiologist(s)  that we feel the best about. We still appreciate that at St. Joe’s I would deliver and recover at the same hospital where Pedro would be in the NICU. We also feel like the program with the St. Joe’s cardiology group is a better fit for us–much more supportive and user-friendly. Also, once you meet Beth, the nurse practitioner, it’s a no-brainer. She is off-the-hook amazing.

Although it did not change our mind, I’m really glad I went to see Dr. Jedeikin. Now we can feel even more confident about our decisions, and I appreciated learning more about Pedro’s heart. Here are a few things I now understand after meeting with him:

  • The tricuspid valve is made up of three leaflets, one of them is the ‘Septal leaflet.’ Pedro’s septal leaflet is dysplastic–which means it is gnarly, thickened and crumply. The other two leaflets are doing all of the work to open and close the valve as best they can–which is why one of the leaflets is longer and floppier, it’s trying to cover the Septal leaflet’s territory too.
  • Dr. Jedeikin did not think that Pedro’s Septal Leaflet would be fixable because it is so dysplastic.
  • If surgery does become necessary, it is possible that they would move the leaflets closer together so that the functional leaflets can adequately close the valve with each heartbeat.
  • He didn’t go into all of the details, but if it becomes necessary to surgically re-route Pedro’s heart so that it operates with a single ventricle scenario (not preferable), there are a few different procedures:

Blalock-Tuassig Shunt

Starnes Procedure

Glenn Procedure

Fontan Procedure

{Pedro could need all, none, or some combination of the procedures. We have heard a little about these procedures before, but had not learned all of the names yet. I’ll activate hyperlinks if I find good descriptions for them.}

Oh and, Pedro’s new trick of the day was rolling. The sonnographer laughed with me this time when Pedro would roll away while they were trying to record his heart. Then he would roll back and punch the ultrasound wand. He definitely has a little personality already ♥

Meet the Surgeon

Here I am getting more rotund, these were taken this morning right before we visited St. Joe’s again:

Our activity of the day was to sit down with Dr. Nigro (\nye-grow\)  in order to get to know him and play 20 Questions. I think we got really close to 20 Questions–but they didn’t give us a prize or anything…Bummer. Dr. Nigro has extensive experience handling similar cases of Ebstein’s Anomaly with successful outcomes. The only fatalaty he has seen was a result of an unrelated illness, and not from the surgery itself.

Dr. Nigro was very encouraging. He talked about the range of severity of Ebstein’s in babies like ours, a spectrum that goes from the severe end to the mild end. At the mild end the babies seem like any other baby when they are born (on the outside). Dr. Nigro feels that Pedro will probably be closer to the mild end and he is hopeful that surgery won’t be necessary right away. He compared Pedro to a little girl who was born with a similar case of Ebstein’s and she just barely had her first surgery (and they hope her only surgery) at about 17 months. Compared to surgery as a newborn, surgery after the first year sounds much better.

Dr. Nigro also feels that the Fontan procedure , where the plumbing of the heart is re-routed to skip the faulty valve, will not be needed for Pedro. He seems hopeful that Pedro’s leaky valve will be repairable. Whether or not it takes multiple surgeries will depend on how early surgery is required and on how well Pedro does with it.

All around, we enjoyed meeting Dr. Nigro–especially because in addition to being capable and professional, he has a good sense of humor. We had read his bio beforehand and knew that he had done his residencies at USC. So, of course, Braden’s first question was sports related–and Dr. Nigro just ran with it. Is humor a basis for selecting a hospital and a surgeon? Nope.com. But it’s nice to feel a connection with them anyway.