[update 6/5/23]

Chloe was blessed with the gift of life from a selfless and courageous family on 5/19/23. She went into surgery 5/20/23 and came out 5/21/23 after 12 hours in the OR. Over the past several weeks, Chloe has done amazing, defying all odds. Small and expected speed bumps aside, Chloe's heart is beating strong and she is working towards going home with her family soon. Although the process of recovery may take several weeks, her family sees the light at the end of the tunnel and is eagerly awaiting her return home.

Their primary concerns right now are typical parenting needs for the first time...ever! Finding childcare and baby-proofing their home that hasn't seen Chloe in over a year.

The family is overwhelmed by the love and support of Chloe's community! Please consider donating as they are excitedly, nervously, and gratefully awaiting Chloe's return HOME after over 400 days in the hospital.

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This August, my best friend Mackenzie and her husband Jay welcomed their beautiful baby girl into the world, Chloe Harper Clark. They are now a loving family of four! While this new chapter is meant to be full of sleepless nights and new struggles, these last few months have been extremely challenging given Chloe's medical complications. Jay recently shared their journey on social media.

"Nothing in this world prepares you for having a sick baby... The stress, the helpless feeling, the countless calendar days, weeks, months spent in the hospital, balancing work, taking care of your spouse, taking care of your other kids, taking care of yourself, taking care of the house, bills, meals on the go, and the fact that your entire life gets put on hold so that your little baby can get better...

For anyone that doesn't know, Chloe has a congenital heart condition. They define it as Tricuspid Atresia, Hypoplastic Right Heart Syndrome. In a nutshell, where a normal heart has 4 chambers, Chloes heart has 3 and one of those 3 (the right ventricle) is less than half the size its supposed to be.. There is also no wall separating her left and right atriums...

Kenzie and I have known about this since her 20 week ultrasound. While the doctors had a game plan consisting of 3 planned surgeries, not every patient like this is the same… Chloe has had other complications as well that have complicated things along the way… Shortly after birth, the doctors found a Diaphragmatic Hernia. Where a small hole in Chloe's diaphragm caused negative pressure in her chest to literally suck her little liver up into her chest. This was surgery #1, and went perfectly (problem solved), but seeing your little baby girl lying there on a ventilator after surgery is honestly one of the hardest things I have ever had to see in my life… After this surgery, Chloe was actually doing so well, the doctors were thinking she may be able to skip her first planned heart surgery altogether and send her home to grow! This turned out not to be the case...

Just as the doctors were beginning to consider discharge, Kenzie noticed some blood in her poopie diaper. After an X-ray, it was confirmed she was developing NEC (Necrotizing Enterocolitis). A very serious gut infection that if not caught as early as we did, she may not have survived… This prompted an immediate halt to all feeds and gut rest for a minimum of 10 days with heavy antibiotic treatment.

During this time the doctors had changed their minds about Chloe skipping her first heart surgery and decided that once she got her feeds up they would proceed with the surgery, PA (Pulmonary Artery) Band surgery. This surgery required her little chest to be cracked open so that they could attach a small band around her Pulmonary Artery to help regulate blood flow between her upper and lower body. Too much blood in either direction would either cause fluid to build up in her lungs, or starve her brain of much-needed oxygen… This had to be placed at just the right tightness so that she had equal blood flow.

After surgery, we were moved from the NICU to the CICU and Chloe was brought into the room with a breathing tube and they kept her intubated longer than the first time around 2 days… This on top of the gut rest from before the surgery, caused her digestive system to go to sleep. She was feeding, but nothing seemed to be moving along in her intestines like it should. This was probably the most uncomfortable we have seen her. The amount of pain she was in from the dissension was definitely intense. She hadn’t had a bowel movement in almost a week. So once again the doctors stopped her feeds until they could figure out what the issue was. They had taken multiple x-rays and could not see anything, so they decided to do a contrast enema. Which also did not show anything definitive, but turned out to be quite therapeutic, because she took a massive dump not long after.

With her bowels moving again, they began increasing her feeds slowly to be sure we gave her digestive system enough time to get back to normal function. At this time, the doctors were also concerned the PA band might be a little too tight because her O2 saturation was hovering near the minimum threshold to where they wanted it to be (between 70 & 80%). Chloe was dipping into the 60s quite often. They decided to take her to cath lab to take some measurements of the blood flow through the band. If it was too tight they would then insert a balloon to open it up a little to increase the flow. They decided at her size they wanted to leave it alone and not do anything further.

After another week or so Chloes O2 started to average out and she was doing well enough that after 2 months in the hospital she was finally getting discharged and coming home home for the 1st time!

We were sent home with meds, an O2 monitor, and oxygen in case her O2 dropped. Kenzie and I were of course thrilled just to have her home. But Chloe on the other hand was a bit overstimulated and wasn’t feeding as well as she was while she was in the hospital. 3 days later she had her follow-up. We mentioned she was having trouble taking her full bottles, so the doctor decided to admit her back to the hospital for monitoring. A week later she was sent back home to try again since she was once again feeding as she should.

Once home, we reduced some of the stimulation and added a little patience when giving her feeds which helped a lot. She was taking full bottles and gaining weight, which was the main goal. She needed to gain weight before her 2nd planned heart surgery called the Glenn procedure. The Glenn procedure sends blood from the upper body directly to the lungs. This way, the single ventricle only has to pump blood to the body (and not to the lungs), so it doesn’t have to work as hard. Chloe needs to be around 9 lbs before they could safely do this procedure.

Chloe was home for about 2 weeks, feeding well and gaining weight when we noticed she had some blood in her stool a couple of weeks ago. With her having a history of NEC, we were told to bring her straight to the ER ASAP. Where once again she was admitted for monitoring. They stopped her feeds for a day, took some x-rays, and ran labs to make sure NEC wasn’t back. Thankfully it wasn’t and was likely just a fissure or she is allergic to something in her milk. She was kept in the hospital again for another week before she was sent home last Sunday evening.

Fast forward to today, Chloe's bloody stool seems to be going away, doctors have put her on 100% formula. But now her blood saturation is getting low. We started her on oxygen last night and while it was helping a little, it was still having dips in the 60s. So here we are back in the CICU and Chloe was just hauled off to cath lab to possibly insert a balloon to inflate the PA band… and that's where we sit at this moment. Waiting on her to come back hopefully with good news from the doctors."

Chloe's heart surgeon ultimately decided to proceed with surgery with the end goal of getting more O2 back in her system as her pulmonary artery was not letting blood flow through to her lungs to oxygenate her body. This is the same surgery Chloe was just cleared as "recovered" from a week ago. Chloe came out of surgery this morning. Mackenzie and Jay were told she did well, but they know that oftentimes the hardest part is during the first 48 hours post-op.

***

I cannot even fathom the amount of stress, fear, and heartbreak that Mackenzie and Jay have felt these last several months. Between Chloe's mountain of medical bills, her surgeries/procedures, her two months in the NICU, and everything else in-between. Chloe hit the absolute jackpot when it comes to parents - she has two of the best people caring for, protecting, and loving her, but they are struggling.

Please consider donating if you are able. All funds will go to Chloe's medical bills and expenses and help her family with their bills as they are consistently missing work so they can be there for Chloe. If you aren't able to donate, please keep Chloe in your thoughts and prayers...she's got a long journey ahead of her.