Keeping Mom&Dad close to Emerson

Update 6/16/23

After two weeks of bringing love, light, and joy into our hearts and lives, Emerson James Kirstein passed peacefully on June 16th at 3:32 PM in his Mama's and Daddy's arms.

Annie and I want to thank everyone from the bottom of our hearts for the endless outpouring of love and support everyone has shown in this heartbreaking time.

We will likely be unresponsive to texts and calls for a while as we navigate the next few days. Thank you in advance for your understanding and patience with regards to our privacy and need for quiet reflection.

All of our love,

Evan and Annie

Update 6/16/23

Emerson started clotting overnight and increasing levels of Heparin aren't helping. Doctors think he is in early stages of liver failure, making him no longer a candidate for transplant.

We will be moving Emerson to comfort care sometime later this afternoon. This is the hardest choice we have ever had to make. Thank you so much for your endless love and support during this time.

All of our love,

Evan, Annie, and Emerson

Update 6/15/23

Emerson is recovering from his final diagnostic procedure. Unfortunately, his Dr's confirmed that there is no chance for his heart to recover to a viable state, and a transplant is 100% necessary.

They are meeting to get the transplant listing formally approved this afternoon or tomorrow.

All our love,

Evan, Annie, and Emerson

Update 6/11/23

Update on Baby Emerson:

Emerson is back in his room from his procedure. Annie Rolfe and I just spoke with the chief pediatric cardiology surgeon who is heading Emerson's case.

Due to damage sustained during one of the two cardiac events, Emerson's heart is no longer viable to sustain life.

The doctors who have been in charge of Emerson's case have presented us with 2 options. List for transplant in the hopes of a viable newborn heart being available, or let him pass.

We are going to give him every single chance and opportunity we can. His doctors are prepping the paperwork and process to list for transplant, but the odds are incredibly slim. ~1000 babies are in need a year with ~80 hearts donated, before factoring in match requirements.

Thank you everyone for the massive outpouring of love and support, please keep Emerson in your thoughts and prayers, and please understand if Annie or I don't respond to messages right away.

Baby Emerson Update: 6/10/23

Emerson has had 2 instances of cardiac arrest the morning after surgery. The surgeons had to reopen his chest bedside and Emerson has been put on an ECMO machine (life support) for a few days to give his heart and lungs a chance to rest while they attempt to identify the underlying cause.

Since then, he has come out of sedation from his emergency bedside open heart surgery and is making small movements of his extremities and mouth, as well as spontaneously opening his eyes and seems to give signs of recognition when we talk to him. Additionally, they put him on an EEG and confirmed that there are signs of brain activity and no seizures, which is a great sign.

They are keeping him under mild sedation/pain management for his comfort while he's on the ECMO for the next few days.

All of our love,

Evan, Annie, and Emerson

Annie and Evan's baby Emerson was just born this week. He needs to stay in New Orleans, but the expenses of keeping Mom and Dad close by are an out of pocket one for them. Consider helping as you can. ❤️❤️

A few updates: a battery of specialists are evaluating him this week, from MRI and CT scans, to Genetics scans, to basic labs.

He's on a ventilator right now helping him breathe adequately.

He is on a host of medication for different needs, also on TPN (IV Nutrition).

Mom and dad haven't been able to hold him out do skin to skin yet due to the need for the umbilical lines.

Surgery will be scheduled for sometime later this week or early next week.

This is what we knew about his condition before his birth. More updates will come.

Baby boy has Hypoplastic Left Heart Syndrome (HLHS). Basically, the left side of his heart is under developed.

Beginning the week after birth, he's going to need 3 major open heart surgeries to redirect the blood flow in his body so the right side of his heart will be responsible supplying blood to both his lungs and his body. There may be additional procedures and surgeries needed in between, he may eventually need a heart transplant, and there's a higher risk of cardiac complications, organ failure, and developmental delays, than in the general population.

The 3 procedures he will need were developed in the late 70's/early 80's - and mortality rates for HLHS have dropped significantly since. The hospital we're going to has roughly half the mortality rate after the first procedure than the national average and has a "single ventricle clinic/program" dedicated specifically for patients with congenital heart disease (CHD) & issues like this.

It's been a lot. Evan and I have done a hardcore deep dive into researching HLHS and CHD, and unfortunately there's literally nothing we can do right now except try to keep him healthy and growing until it's time, and then trust the surgeons' and doctors' to do their part when he arrives. We haven't told many people until now because we were hoping for more answers but after our appointment this week it's clear that there are several factors that the doctors just won't know until Emerson is born and they can evaluate him in depth.

What we do know:

1. Emerson will need a lot of time in the hospital.

2. Surgeries occur at or around 1 week, 6 months, and 3 years.

3. The maternity leave at home getting to know our new born will likely be spent at the hospital full time

4. There's no reason why we can't do a "natural" birth, but they also want him born at a "convenient" time so more help is readily available, on shift, and prepared for his arrival.

5. He will begin being evaluated within minutes of birth and will be given medicine through an umbilical IV almost immediately to keep parts of his heart that would normally close after birth, open.

6. Baby boy is a STRONG kicker and loves Daddy's voice.

7. He also kicks until I talk to him some days, especially at night before bed or first thing in the morning.

8. Apparently he cuddles with his placenta quite frequently (as in almost every ultrasound)

9. His growth rate is on track, and while so parts measure a bit smaller they're all still within a normal growth curve.

10. We both love him so much already and are going to do what we can for him, whatever that looks like, but it's definitely been difficult accepting that he has this issue and there's so much unknown that's downright terrifying for both of us.

Please, if you have questions about HLHS and/or CHDs... Google it. I don't know that either of us have the spoons to answer and explain repeatedly. The doctors haven't given us anything not available on Google that changes his outcome at this point in time.

If you want to help, our biggest needs will be someone to watch the dog & cats, and maybe help cleaning the house/feeding ourselves after he's born. A lot of our time (the entire first month at least) will be spent in the CVICU and/or NICU in NOLA, which is roughly a 1.5 hour drive. We haven't quite figured out what that is going to look like yet.