Our Hero

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Oh-Cho

Patrick is 8 Months Old!

He loves pureed veggies {and a few select fruits}.

He has 3 teeth, and one on the way.

Our little dude is now able to sit without assistance and {rarely} tip over.

When motivated, he can roll to retrieve desired objects.

Patrick looks longingly at his stroller or the front door whenever they catch his eye…he loves to be outside. He pats the grass to hear the noise it makes. He rubs his feet in the lawn, amazed by how it feels. He tries and tries to sneak a leaf into his mouth. How frustrating for him that we never let him quite get one there.

He cracks me up when he concentrates so intently on new objects…

{We try not to think about how sad he will be when it gets too hot for his many walks each day}.

I think his eyes have decided to be brown.

He still loves his daddy.

The sentiment seems to be mutual ♥

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.)

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!

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

No Place Like Home

Patrick was finally discharged last Wednesday, Feb 2nd. Happy Groundhog’s Day to us!

On a side note, Patrick’s Aunt Aubrey also came home from Brazil that day–she had been serving as a missionary for over a year and a half. A good day all around.

Here he is with Dr. Lane, one of the Pediatric Intensivists, and Dr. Nigro, Patrick’s heart surgeon:

Ready to roll out:

Patrick rebounded really quickly with the feeding tube (NG tube) in the hospital–we were able to keep his belly full. Unfortunately, it was a bit TOO full most of the time and he had a lot of trouble keeping the food down. I don’t think he like the Portagen any better in reverse…

I had to put the tube in to prove that we could handle it at home in order to get discharged. Here I am using my lovely plastic stethoscope to make sure the tube is in the right place. If I could hear air “popping” into his stomach when I pushed it through the tube then we were good to go.

We were pretty excited when one of the Nurse Practitioners suggested that we try Enfaport, another non-fat formula. It is new or not-as-common or something like that. Patrick likes it much better and although he came home with a feeding tube–it came out the next day and we have not needed to put it back in. He is eating on his own, and getting closer and closer to the amount of formula they would like him to have each day (about 25-28 ounces).

We are also allowed to give him breastmilk now as long as we remove all of the fat. We thought Patrick would be delighted to have breastmilk again–but he didn’t really react much. Maybe it isn’t as delish without the fat? I can’t blame him. At any rate, he likes the Enfaport just fine so we are sticking with that to play it safe. After this month his lymphatic system should be well enough to go back to our regularly scheduled feeding program of the fatty-fat milk.

Patrick is thriving at home and we are so grateful for all of the prayers and support that got him (and us) through this adventure. I can’t even tell you how nice it was to have people feed us, visit us, write/comment, and I am still amazed by Patrick’s fantastic grandmas who helped care for him in the hospital. Thanks to them I was able to spend some nights at home in my own bed, leaving Patrick in good hands. He is one loved little dude!

Patrick’s bedtime schedule is still a little out of whack from the hospital, but that is a small price to pay for his heart to be working so much better ♥.

Too Smart

We have their attention today because P is so miserable. He refuses to eat the formula, so we finally let them put in a feeding tube. As much as we hate it, it is better than starving the poor kid. He’s onto our tricks and won’t be convinced to eat the nasty Portagen.

Here he is asleep with a chocolate dribble down his cheek. The nurses had us try mixing chocolate syrup into the Portagen to improve the taste…it helped a little at first, but now he will probably just hate chocolate milk forever.