On Tuesday April 16, while at work I received a video of Marley’s breathing. It was concerning. From what I could tell she had increased work of breathing meaning fast shallow breaths and nasal flaring. I was concerned and asked for them to call an ambulance. She was taken to Children’s in Minneapolis with lights and sirens and brought immediately to the trauma room.

One thing about the trauma room is everything is extremely fast, but scary as there are MANY people in the room and they are all working on my tiny little baby. 

The Doctor we had seen during our previous admission was called to assess and decided within 5 minutes she needed to be intubated.

Today marks day 27 intubated and on a ventilator.

We are almost 4 weeks into this hospitalization and have been told it will not be a short intubation or hospitalization.

When people get a respiratory illness you lose some lung tissue and then when you are healthy again you rebuild it. Marley unfortunately has gone from illness to illness to illness with no healthy time in between and so she has been diagnosed with Severe Chronic Lung Disease as her lungs have deteriorated and now being referenced as “premature lungs”.

This has been an extremely difficult hospitalization even though it is our 8th hospitalization. She has been hospitalized somewhere between 4 1/2 and 5 months during her short 5 1/2 months of life.

She is in the ICU on the cardiovascular floor which we are thankful for being we just had a month long hospitalization there and are familiar with the team.

I (Ashley) have made a very difficult decision to take FMLA for now, because our sweet baby girl needs me. This decision did not come easy as I was just promoted to store manager of our South Minneapolis location just 2 days before her heart surgery.

We are working with the ICU do goes, pulmonologists, cardiologists, PT/OT, orthopedics for her helmet, hematologists, infectious disease and a few more very diligently to make sure she is getting the best care and progressing at her pace.

We thank everyone who has reached out, prayed, sent meals and even those who have come to the hospital to sit with me as the days are long, hectic, sometimes scary and most of all extremely isolating and lonely.

Please continue to pray for our sweet baby Marlene and our family while we navigate through this hospitalization.

🩷 Ashley & Michael

PS I have added photos, however, this is a warning that you can see the breathing tube so if you get queasy, I would opt out of looking at these photos.