Help for Brynnlee and the Magee Family

Brynnlee was born with a single ventricle heart defect. This will require a series of surgeries to repair and are palliative surgeries, not curative. Ultimately, there is no cure for this type of heart defect. Depending her heart's threshold, she may end up needing a transplant. She had her first surgery (Norwood) at one week old. After many ups and downs and six weeks in the cardiac NICU she was able to return home today.

They have a strict med schedule, and a feeding pump with continuous feeds running. They have to listen to her heart murmur 3 times a day to be sure the shunt in her heart isn’t being clogged and to ensure she has a normal heart rate. They will wake up at 5 AM every morning to do all of her cares which include recording her heart rate, oxygen saturations, weight, feeds, and any vomiting or red flags she may be showing.

The time (right now) between her first and second surgery around Christmastime is called the “interstage” time. During the interstage, babies are very fragile, and some pass away waiting for their second surgery. Doing all of these things everyday and being in daily contact with her care team helps prevent anything major happening at home. They’re able to catch things with this home monitoring program to keep her safe and healthy!

Unfortunately, they are in the interstage with cold and flu season coming up. This makes things a little riskier for her. They plan to attend some of their boys' outdoor football games, go on lots of walks, and maybe a trip to the park and library here or there when their youngest is home with them. They have to limit visitors in the house and be careful letting people touch/hold her, especially if they have any sniffles or have knowingly been exposed to any sickies. A little sniffle for you or I could land her back in the hospital on oxygen or possibly intubated.

As of right now, Amber will not be able to return to work any time soon. Brynnlee requires care 24/7 and is so fragile that she cannot be in a daycare setting. It’s also essential for Amber to be with her because she has learned her in and out for the past 6 weeks. Knowing her normal and her baseline at home will help identify the slightest change that could mean she needs to go back to the hospital or be seen ASAP.

The Glenn repair only has a 5% mortality rate and will sustain her until 2-4 years of age. She will then have the 3rd, and final surgery called the Fontan. After the Fontan procedure, they follow her body's lead and see what it decides to do. Some people make it to their 30’s after this procedure; some need a heart transplant…. It’s just a case-by-case basis on what she will end up needing. Between all of these things, there is a high risk for infection, blood clots, and strokes…. All things that could cause setbacks and lengthy hospital stays. We don’t know what will happen and will have to take things day by day. They will also have multiple trips to doctor's appointments.

Financially, this is less than ideal, but it’s what they have to do right now to ensure Brynnlee is safe, healthy, and getting the proper care she needs. She also asks if you know of any side hustles send them her way. Her husband works at a local school. He will be supporting a family of 7 on para pay and only gets paid once a month. This will be difficult once she is no longer receiving short-term disability, so they are trying to be proactive and find some flexible ways to have an additional income!

In 2019, the Magee's lost their baby Cooper after Amber was in an accident and he was born prematurely. Cooper passed at less than 24 hours old. Brynnlee was born in the same OR that he was and admitted to the same NICU room he was in when he was born. We know her big brother is watching over her.