Of Cones and Toes

Patrick enjoyed a routine visit to the Cardiologist this afternoon {“enjoyed” may not be the right word…but he was fairly brave and tried to curb his indignation, tears, and requests to “go back to the gold car.”}

P’s troublesome ticker looks pretty much the same as it did in July. While there is no imminent danger, we will need to do something {in coming years} to reduce the amount of blood that regurgitates into the atrium–enlarging the right side of his heart. Dr Rhee feels that a surgical procedure called a cone repair will do the trick. The idea is to move the three leaflets of the tricuspid valve up where they should be and reshape them into a cone.

Before doing a cone repair, the surgeon(s) will probably want Patrick to get older/bigger. In the meantime, they will call us in soon to do a study on his heart to see if he still has electrical pathways in his heart that could cause SVT (rapid heart rhythms). If SVT is still a potential problem, then they’ll do a low-risk catheter ablation to get rid of the SVT pathways. Both the study and the cath procedure would just be overnight procedures (so that they can monitor him after he’s been under anesthesia).

In other news, we are loving our new house (will share photos in the near future) and getting excited to meet the soon-to-be fourth member of our family. My due date is May 1 and so far the baby is healthy and whole. We had a fetal echo done in January to take a close look at his heart–it looked totally normal. The only item of not was that Patrick’s baby brother has 12 toes! The better to kick me  with, of course…

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Jeremiah

My nephew, Jeremiah, was born this morning and is in the NICU. He is a heart baby too, he has transposition of the great arteries (TGA) and a ventricular septal defect (VSD). To further complicate things, he has a congenital diaphragmatic hernia (CDH).

He was only expected to live two hours at best but surpassed the two-hour mark hours ago. We are praying for a miracle.

Jeremiah’s mom, Heidi, is recovering, but to read more information on his diagnosis pre-birth you can visit Heidi’s blog: Gibbering Madness.

My mom sent this update earlier this afternoon:

Hi All,

I just got back from University Hospital. Bryce got to Utah yesterday around 4 p.m., and by 8 p.m. Heidi was in labor. They went to the hospital around 3 a.m., and Jeremiah was born at 4:20 a.m. by C-section. He weighs 7 lb 1 oz and has quite a bit of shimmery light brown hair—that looks curly.

He is in the NICU and has already lived four times longer than they had been told to anticipate. The doctors there are so good at communicating with Bryce. They have spent most of this time trying to get the carbon dioxide out of Jeremiah. It can be as huge of a problem as too little oxygen can. His carbon dioxide numbers have been going down all morning—which is what they’ve been hoping would happen. At one point they were going to use a surfactant to try to get his lungs to “unstickify” and open up more, but when we left, they had decided not to do the surfactant.  They didn’t want to run the risk of making a hole in his lung with too much pressure if they didn’t have to do it.  They have two pulse ox machines going on Jeremiah that report his oxygenation both at the feet and at the top of his body. He is generally around 70% which is good considering his heart has the pulmony artery and the aorta connected opposite of where they should be. He has a large hole between left and right—which is usually problematic. In Jeremiah’s case, it is helping his blood to mix and making it possible for a little more oxygenated blood to get pumped out.  They have Jeremiah being cooled to help prevent brain damage—and maybe other reasons, too. His intubation took 10 minutes, so there is a possibility of brain damage. The doctors said he responded very quickly once they got the tubes in, and they thought with the cooling, his brain might be OK.

I know I was introduced to lots of doctors in the NICU, but I remember no names or titles. Bigwig doc from Primary Children’s was there observing Jeremiah. He was working with Jeremiah’s two in-the-room doctors. They would explain every move to Bryce—who didn’t leave unless they asked him to (during shift change and reports). Bigwig doc was going to call bigwig heart surgeon to discuss the possibility of doing heart surgery today and getting Jeremiah onto ECMO after the surgery. That was never offered as a remote possibility prior to today, so even that possibility is nice to cling to. He still might not make it, but there is that remote chance.  Oh, and by the way, his feet are just fine—not clubbed as they had been told they were. Miracles do happen.

Greg took a couple of pics on his new cell phone while we were at the hospital. I will get Danica to email them to me and I’ll include them here.

Heidi’s Mom has been in California helping with another grandbaby that was born. She hopped onto an earlier flight and should be back in town by 1:30 this afternoon.

As we were leaving the hospital around 11 a.m., Heidi was begging to get up and go see her baby. They had taken her there once in her hospital bed on the way to her room. Her feeling has now returned to her feet, and she thought they might let her go spent 5 minutes or so in NICU. I hope they did.

Heidi and Bryce are both exhausted, so texting or email would probably be the kindest way to communicate with them.  Heidi is in room 2305 at University Hospital. I would guess she’ll be there for 3-5 days, so that lets me know that I’m going to be running back and forth with Isaiah whenever possible.

Thank you to all of you who have been praying for our family!

Love,

Colleen

Double-Double x 8

We had our 36 week ultrasound this morning to do a BPP and growth check on Pedro. His vitals all look good, his heart-to-chest-cavity ratio is holding steady (which is better than getting worse), and they calculated his weight estimate at about six pounds! The pregnancy websites compare him to a honeydew melon or some other kind of melon…I don’t even like orange and green melons. Plus, it was cute for a little while, but comparing my baby to produce is obviously propaganda to get starving pregnant women to eat healthy or something. Like that’s important?!?

(Okay, so I really know that it is essential and I do like many other produce items.)

Still, how much more fun is it to compare Pedrito’s weight to something more practical. Something that can be obtained quickly in all it’s delicious goodness, and delivered by people in funny hats no less. That’s right, weighing in at 6 lbs. makes Pedro about the same poundage as 8.5 Double-Doubles!

P.S. In all honesty, I’ve never actually eaten a double-double. I’m a regular cheeseburger girl. But adding up his weight in weeny little cheeseburgers would be ridiculous…

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!

Parent’s Guide

I signed up to be part of a Yahoo group for the Eller Heart Family Council and it is fun to be part of the community through the notifications/messages that members send out. This morning a “heartmom” sent a message about how she wished that she had known that heart babies can’t really wear zip-up footed pj’s.

I would never have thought of it, but because Pedro will need to have the pulse-ox monitor attached to his foot while he  sleeps, it just won’t work to have footed pj’s that zip up. Now I know not to buy them, and I can still exchange any we DO have for other kinds of sleepers since I haven’t washed any of the clothes yet. (I am pretty excited for that task, though…washing all of the little clothes and putting them away. He’ll be here soon!)

Anyway, I wrote to her (Melodie is her name) to find out about a parent’s guide that she mentioned in her note. She has written up Frequently-Asked-Questions sort of guide with tips and info like the pj’s advice.

If you are interested, you can look at it as well. I found lots of answers to things I’ve wondered about:

What To Expect Heart Parents

I am a little bummed about a certain set of pj’s we have that I’m not sure we can use afterall, but I’m sure Pedro can make up for the lost experience by wearing some as an adult, like his Uncle Jonathan…

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!

Tiny Human Shower

Tara, Lanie and Jessica rock at shower-throwing. I was amazed by their skills and creativity in bringing  my  random theme request (Angels baseball and ROBOTS) together. They created some super cute decor, etc. because for some reason the theme combination is difficult to find otherwise…who would’ve thought?

Here are a few highlights:

Incredible diaper cake that Lanie built. Covered with baseball and robot accessories and topped with a onesie bouquet (also assembled by Lanie herself).

Each layer of the diaper cake contained itty-bitty onesies, bibs, lil' socks, etc.

Adorable and seriously delicious chocolate layer cake (with ganache!) done by Tara and her sister, Leighan Jacobson. Leighan is going into culinary arts, and clearly she'll be amazing at it. I have her contact info. if anyone wants to hire her.

We played a few fun games, ate, and talked. It felt good to do something normal and just be excited. Thanks ladies for all of your extraordinary work and thank you to everyone who attended and/or sent their love. We are overwhelmed by everyone’s generosity and thoughfulness!

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.