Star Patient

We have been having good days over here in the PCTICU. Patrick just had his echo this morning, so we’ll see if his PDA has closed and if his pulmonary artery looks good.

Patrick is no longer on any IV meds or nutrients, so they were able to take out the IV that was inserted through his umbilical cord stump on the day he was born. Now that he no longer has that line, we are allowed to pick him up and hold him at will. It has been awesome for us to have that new freedom and to be able to cuddle him a little better.

Patricks sats (aka the amount of oxygen saturation in his blood circulation) have been really good–we’ve even seen it get close to 100%. Depending on what the doctors see on the echo, they have been talking about us going home as early as Monday! We will definitely go home with a pulse ox monitor, but it sounds like we may only have to have it on periodically throughout the day. Patrick has a prescription for medication that should prevent heart arrhythmias (his heart rate has spiked a couple of times this past week), and we will need to fortify breast milk with special formula for a higher calorie diet.

Diet will be our main concern, I think, for awhile. We’ll have to try and get this kid to gain weight and grow. He doesn’t eat as much as they would like him too. Other than that, they are calling him a star patient and they seem really pleased with how he is doing.

Thanks everyone for your prayers, we’re getting excited to take him home!

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Second Opinion

It’s easy to forget that something as serious as a heart defect can be pretty subjective. Especially when observation of the problem can only be done via ultrasound. But depending on their experiences and what they see, the experts seem to come away with different assessments and expectations. Happily the surgeon, Dr. Nigro, and Beth, our fantastic Cardiac Nurse Practitioner, immediately told us this morning that they are pleased with where Pedro is at.

Even before saying hello almost, they reassured us that Pedro’s heart has only increased in size by about 10% over the last few months that they’ve been watching. While it is definitely enlarged, they estimate that it is only taking up about 52% of his chest cavity, which means his lungs have not been inhibited in their development. They anticipate that he won’t have the major breathing problems that some heart babies do at birth. AND they don’t think he will need surgery immediately. Their preference, in any case, will be to try everything else first to stabilize Pedro at birth and let him grow a little older before surgery.  Even if he is struggling, hopefully he can “eek by” until he is bigger and stronger. (Yes, the surgeon said “eek”).

In any event, we have a better idea of what to expect. Delivery should be normal, with a little extra monitoring, and just like other babies Pedro will be cleaned up and checked right there in the labor & delivery room (under a warmer). Then they’ll bundle him up for us to hold him! If he is doing okay, we should get a little bit of time with him before Braden goes with him to the NICU (which is on the same floor as L&D). He will be in the regular NICU for about 24 hours or so and then he’ll be transferred to the PCICU (Pediatric Cardiothoracic ICU). He’ll be in the PCICU about a week or week and a half. IF he does end up needing surgery right away it will be within the first week. In that case he’ll be in the PCICU for a few more weeks than he would otherwise.

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.

Where’s the Beef?

They did a growth check at my last doctor’s appointment (Thursday, 8/5) and calculated Pedro’s weight at 5lbs. 9oz.! Based on my reading, baby’s generally gain up to an ounce a day from here on out, fattening up for their arrival. Pedro shouldn’t grow much longer, just beef up a bit. If he is gaining an ounce a day (and if the calculation is accurate), then he already weighs more than I did when I was born! {I was 5lbs. 11 oz.}

We are definitely excited that Pedro is doing well overall and getting fat & happy. It was amazing to watch on the ultrasound as Pedro practiced breathing–they turned on the colors that show the direction of fluid movement and I could see sporadic clouds of color around Pedro’s mouth. No wonder he gets the hiccups all the time!

More Showering ☂

I work with seriously great people at ASU! Pedro will have a few adopted aunts to entertain once he’s here. In the meantime, they made use of Braden and I for entertainment with some hi-larious games/activities at a baby shower they threw for us last week.

Braden was able to get away from work for a couple of hours to join us on campus. As soon as he arrived, they had him put a balloon up his shirt…

Braden found some good uses for  his balloon baby:

Other  times, the belly seemed to impede him a bit…I wonder what that’s like? Must be so frustrating not to be able to reach things, etc…

At the end of the shower, Braden ‘gave birth’ to his balloon by popping it–inside was the answer to one of the door prize questions: “What was Braden’s birthweight?” The answer is 7 lbs. even. It is sort of looking like Pedro will surpass his father in that department–the little guy was already 4lbs. 9oz. last Friday! He could be over 5 lbs. by now with about 6-7 weeks left to go!

Besides fun parties, things have been going well otherwise, too. Pedro has passed each Biophysical Profile (BPP) and seems to be doing really well in spite of his heart issues. They have even scaled back and are only having me come in once a week, instead of twice. For BPP’s  they check 4 different criteria to see how he is doing overall: 1. Fetal Movement, 2. Fetal Breathing (aka oxygen flow to all the important parts), 3. Quantity of Amniotic Fluid, and 4. Fetal Heart Rate. If it were a graded test, and not just pass/fail, I wonder if they’d give him an A+ for movement. This kid rarely holds still!

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.

Ultrasound & Echo – 30 Weeks Pregnant

Pedro was nice to the ultrasound tech today and he even let her  take some images of his face! I think he liked her because she said nice things about his cuteness. Braden thinks that the tech was just sneaky/stealthy (read: she didn’t push very hard) and therefore Pedro did not detect anything to attack. Whatever the reason, we are happy to see his wee little mug:

And here is his weapon of mass destruction (my ribs cringe at the sight…)

The tech calculated his weight at 3lbs. 9 oz. Apparently that is more than a large jicama, but less than a pineapple (if you like to  think in terms of produce, and who doesn’t?) A pineapple is much cuter than a jicama, but I doubt either of them would be as good-looking as Pedro is going to be in his Angels gear and various duds from the grandmas and others. (thanks ♥)

Now about his heart.  Today they could see that the right side is significantly enlarged. The regurgitation of blood from the right ventricle back into the right atrium is causing the atrium to fill up and expand. While it is no surprise that this is happening–everyone had hoped it would be later in the pregnancy (or not at all, please!)

I *think* this next image shows the problem. I could be way off because we weren’t looking at anything in particular when the doctor told me about the enlarge-ness. But I believe these measurements of his heart show a large circle to capture the circumference of the whole heart, and a smaller circle around the right side of his heart:

We’re still crossing our fingers for a full term baby. Starting after my St. Joe’s ultrasound next week, I’ll go into the OB’s office twice a week so that they can keep a close watch.

In the meantime, it’s a really good sign that Pedro is so active and it should be easy to tell if his heart starts slowing him down. I’m not so sure that this little dude would let anything deter him from his regiment of kick-boxing and aqua aerobics, but I’ll notice if he does actually get quiet.

This last image is just one that I thought was interesting–it shows the blood flow to and from Pedro via the umbilical cord:

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 ♥

Help me OB-one

This morning I met my new OB, Dr. Blumrick and he is great—very personable and optimistic. Also, very chatty, which is nice in some respects. He set a goal for delivering Pedro after 39 weeks (so sometime after Sept. 9th would be ideal). Dr. Blumerick was pleased that Pedro’s Right Atrium is still the normal size, and besides the Right Ventricle, the other parts of the heart are all in the 50th percentile for size. So his heart overall is just the right size—not too big and not too small.

He also told me that when my former OB did bloodwork on June 10th to check for Gestational Diabetes (which I don’t have-yay!), my platelet count was at 140—so we are getting even closer to a normal range and rising. A small win, but a win nonetheless.

And what would a doctor’s visit be without an ultrasound?—so we did that again as well. Does this image look a little even more blurry than usual?

Yep. That’s because he refused to hold still. Pedro kept kicking and wiggling when he wasn’t supposed to–and wouldn’t budge when they needed him to move into a position that would make things more visible. Oi! We are in for it with this kid!

Dr. Solomon, a Maternal Fetal Medicine Specialist, did part of the ultrasound. She explained more about hydrops: when the tricuspid valve is regurgitating blood, the leaked blood can sometimes pool up and cause fluid to be where it shouldn’t. If untreated long-term, this could cause heart failure. If untreated short-term, it could cause damage to the surrounding organs, most notably the lungs. We vote “no” on hydrops, and so far we have every reason to hope that we’ll get through the pregnancy without them developing.

Fetal Echo – 26 Weeks Pregnant

It has become an interesting mix of dread and excitement when I go to these appointments now. I still love, love, love to see my baby. The highlight of this particular visit was that Pedro had become quite the kicker (or elbow-er, headbutt-er, whatever he can throw at you-er). It was probably more entertaining for me than for the poor ultrasound technician when Pedro would kick the ultrasound wand. The kid’s got good aim!

Despite Pedro’s burst of activity, the technician and then Dr. Nyberg were able to see that the condition had progressed and our Pedrito was diagnosed (officially) with Ebstein’s Anomaly. By this point, his tricuspid valve was more obviously misshapen. As a result, it had become floppy and leaky. Apparently, blood is only supposed to be on a one-way track through the heart—in the right side of Pedro’s heart the blood is traveling in both directions.

The Fetal & Women’s Center has an amazing Doctor/Patient Care Coordinator, Susan, who worked with me via email to set up consultations with the cardio groups at both St. Joseph’s and the Phoenix Children’s Hospital. It will be important for us to deliver at a hospital with a NICU—even if Pedro doesn’t need surgery right away, he will definitely need to be monitored closely. Susan also sent me some information and arranged for me to transfer to the Center’s OB for my regular pregnancy visits. (My original OB does not have privileges at either of the hospitals with a NICU.)