Adios Amiodarone

Patrick had an appointment with Beth at the heart center today. Gary was the unlucky one who was tasked with weighing, measuring, monitoring, and echo-ing a squirmy, opinionated 7-month-old. Gary was great. Patrick was…difficult. But they were able to get enough information to tell us that Patrick is doing well. Things look the same as last time–the tricuspid valve is pretty leaky but that’s why they did the Glenn procedure. As long as the right side of his heart holds up under the pressure from the regurgitated blood, there may not be a need for more surgery in his future. This is sort of uncharted territory so we’ll have to see how it goes, but the cardiologists seem pleased with how he is doing.

In fact, he has graduated from his amiodarone–a once daily med he has been on since he was born. Amiodarone prevents the SVT (super-high heart rate) episodes that Patrick had a couple of times as a newborn while still in the PCTICU. At this point, P has outgrown the dose he’s been on and since they have been planning to take him off of the drug anyway, it is better to do it now rather than up the dose. It will take awhile to clear from his system, so in a month or so we will start a 21-day ACT monitor again (he had one for the first couple of months last Fall). I’m not that excited for the monitor, but it will be so nice to have the peace of mind knowing that the doctors (and us parents) will be alerted if his heart does something funky. AND we are happy to have him off of one more drug. Now all he will be taking is aspirin once a day for the rest of his life (to avoid any blood clots in his heart–particularly the troublesome right side).

Patrick doesn’t need to go back to the clinic until after we’re done with the ACT monitor–so not for two months! After that we may only need to take him every 4-6 months. How rad is that?

We should be hearing from someone regarding physical therapy–Patrick  is lagging a little on some of his physical development. His sternum is wired together, and you can feel the bumps under his scar. As you can imagine, this makes tummy time a bit uncomfortable. Also, because the Glenn procedure re-routed the blood from his upper-body, a natural bi-product is that his head has gotten bigger (in relation to the growth of the rest of his body). With his head so heavy, he hasn’t quite gotten sturdy in the sitting position. He’s a strong kid, though, and he’ll catch up. He just wants to skip sitting and crawling and go to walking–if he had his way we’d have him standing, jumping, or walking (assisted) ALL the time.

These photos are from his last regular pediatrician appointment–he’s getting caught up on the immunizations we had to postpone during the pre and post-surgery time period. (Tia, Patrick’s nanny, was nice enough to come with me to the appointment. Six needles…three in each leg! He was a trooper, though.)

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Six Months + Cardiac Follow-Up

A week ago our baby boy crossed over to the second half of his first year. What the?!
Here he is in all his 6-month glory:

And a couple of days later…

Also, we had an appointment at the heart center this morning. Patrick is doing well and no longer has any restrictions. Just regular baby precautions. Now we need to help him catch up on his tummy-time and sitting skills. In a couple of months he may get to quite his daily meds. And stay tuned because we get to start solid foods this week!

Our Heart Boys

Patrick had a follow-up appointment at the heart center this morning and they were pleased with how well he is doing post-op. He has gained weight (tipping the scales at 15 lbs 1 ounce) and his “zipper” is healing nicely. Patrick’s head was in the 40th percentile before surgery and despite the amount of blood that backs up in a baby’s head after the Glenn procedure, he is still only up to the 50th percentile for head size. That means he only has “Glenn head” minimally.

Patrick’s cousin, Jeremiah,  is settled at Primary Children’s Medical Center. His lungs are stronger than they had initially thought and they have been talking about ECMO (a machine that will put oxygen in his blood) and surgery today. From what I have heard, they have had some ups and downs, but Jeremiah continues to fight and to surpass expectations. Thanks everyone for your prayers for him. Be strong baby J, we love you!

Our Little Morning Person

Today Patrick is two months old! To celebrate, we took off the pesky old stickers that attached the leads for his LifeWatch ACT Monitor. Now we will box up the monitor, phone, etc. and send them back to the hospital for someone else to use. Bon Voyage!

I will say that it was SO nice to have the monitor for peace of mind and as opposed to noisier alternatives–we are grateful for the technology and even more grateful that Patrick is doing well.

Early this morning I found my boys in the midst of an amicable conversation–and Patrick was quite entertained.

Who has two chins and likes the morning-time?

¡Este muchacho pequeño!

Ten Pounder

Patrick saw his cardiologist, Beth Rumack, last Thursday for a routine checkup. He weighed in at about 10 pounds!

Left: 10 Days Old, Right: 6½ Weeks Old

He has been growing steadily and according to the chest x-ray and echo done on Sept. 30th, his heart has not really become any more enlarged than it was at discharge. Also, the tests showed that his ASD (a hole between the right and left sides of his heart) has actually closed up a bit on it’s own. This might mean that the ASD could be repaired via a heart catheter rather than open heart surgery–which I think could buy us more time before the tricuspid valve repair is necessary.

Patrick had occasionally been trying to sleep longer between nighttime snacks, and Beth told us that we could start letting him do so. She told us that as long as he is getting about 20 ounces of breastmilk per day then he should be fine sleeping through the night. At the time Patrick was only eating about 15-16 ounces a day, but once I started letting him go longer between feeds at night, he really picked up his game. Over the last few days, he increased his intake from about 18 ounces to 24 ounces. So far he has still been waking up once or twice during the night to eat (most consistently at 1 or 2 am), but even that has been so nice for me (he was eating every three hours before). Yay for more sleep! I went from a total of 4-5 hours to a total of  nearly 6-7 hours of sleep each night. Amazing.

Patrick literally changes every day. He is developing so quickly, and we are having a ton of fun with him. He has become a lot more smiley and talkative with his little Patrick sounds.

At 7½ weeks old, Patrick likes to:

  • Keep his legs and arms in constant motion (often in his sleep as well)
  • Kick with his right leg more than his left
  • Have his hands balled up in fists still (although we are starting to see him keep them open occasionally)
  • Grip things in his fist (i.e. our fingers, toys, hair–unluckily for Braden’s chest hair, etc.)
  • Pee in the bathtub
  • Poop on Daddy
  • Hang out on the changing table. He has come to appreciate diaper changes more (he HATED them as a newborn) and he really likes to look around at his toys and monsters that hang by the changing pad. Some of our best conversations take place there–he likes to be sung to, talked to, and to learn new tricks while he’s laying there.
  • Hold his head up. Patrick has the head control of a 3 or 4 month-old (as per his pediatrician).
  • Put a halt to ALL other activities in order to concentrate on going #2.
  • Hold Daddy’s thumb while being bottle-fed
  • Look at himself in his crib mirror and the mirror above his swing
  • Sit in his swing, whether it is moving or not. And he loves to sleep there.
  • Watch the lights on his activity play-mat
  • Follow toys with his eyes when we move them back and forth in front of his face
  • Fight sleep with all of his might
  • Ride in his baby bjorn carrier
  • Take his heart medicine–seriously, he thinks it is super tasty and he’s sad when his daily dose is gone
  • Video chat with his grandparents
  • Sleep on Dad…

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!

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.

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 ♥