Update

After 74 days Brenna is now home!!❤️

Donations are still needed as I'm still unable to work. Brenna can't be in daycare as she has a week immune system and getting sick could cause new leaks from forming.

Brenna requires 10 different meds every day, multiple times per day.

She needs to eat every hour to maintain her needed calorie intake.

She has OT, PT and speech therapy every week on top of our weekly 1-2 trips back to Wilmington for appointments, which is 65 miles each way.

❤️

If you know me you know I DON'T LIKE ASKING ANYONE FOR ANYTHING.

I've worked my butt off for years and I've built everything I have by working! I've never asked for hand outs.

I'm going to swallow my pride and do this for my children.

As most already know, my 12 month old Brenna Sue Alisabeth was taken to AI DuPont Children's hospital in Wilmington Tues July 30th. We discovered she had a chest full of fluid (chyle) so much that it collapsed her left lung, pushed her esophagus and heart all the way to the right side. She wasn't able to breath and was placed on a BPAP to help her breath.

A CT showed a major problem. Her lymphatic system wasn't working and the Chyle (fluid) was draining in her chest. She has surgery Tuesday night to insert a chest tube. They drained over 13 ounces of fluid from my sweet babies chest.

We spent 3 days in the ICU before moving to the regular room.

On day 7 she had another surgery to replace the chest tube, a MRI, lymphangiography & a biopsy done.

They discovered her lymphatic system is worse then they expected.

She was diagnosed with complex lymphatic anomalies.

Genetic testing is being done to determine if she has a PIK3CA mutation gene.

Her lymphatic system is leaking chyle (fluid) in her body.

She needs additional tests and procedures done to determine. One being going in and locating the leaking area or areas and hopefully closing them. She will need multiple surgeries before we can leave the hospital and go home. We are expected to spend the next few weeks here in the hospital and possibly months.

This is a rare condition and something Brenna will need to deal with her whole life.

Now here is the dilemma...

We live I'm Felton DE, she is in the hospital in Wilmington. With traffic it take 1hr 20m - 1hr 50m each way. I've been staying in Wilmington with her, and Dad traveling back and forth when possible. Gas and tolls are getting really expensive and he does work 10+ hour shifts.

I now have to choose between working and going home to see my son Bryce. It's been 5 days since I've seen him, which is longest I've ever been away from him.

I'm not able to do both and unfortunately I can't afford to not work.

I just went through 6 months of maternity leave which drained my savings. I just started working part-time (driving Uber/Lyft)

The bills don't stop because Brenna is in the hospital. I'm only asking for enough help to cover one month bills plus give us enough to get back and forth from Wilmington to Felton.

I need to be here with my daughter and I need to go home and see my son. I can't do these things if I'm out working!

This is very unexpected and honestly I don't know how I'm going to make it though all this. I've worked so hard for everything I've achieved and I feel like I'm so close to losing everything! I'm trying my hardest to keep it all together but idk how much more I can take!

Pushing my pride to the side and I'm asking for anyone who is willing to donate.

I appreciate everyone and love you all so much

Brenna update: 8/7

Discussing long term care for Brenna.

The medication she will need to be on, for the rest of her life comes with side effects. The most major side effect will be a weaken immune system.

Her getting covid, flu or any major sickness could kill her!! She might not be able to fight it off.

It really just hit me that this is a life long journey, and a huge change to all of our lives.

The only way to prevent her from getting sick is to live like we did during COVID but for the rest of our lives.

Me driving Uber/Lyft can't continue. Germ City!!

She will need regular blood work and regular quarterly checkups.

Any fevers she will need to be seen by a doctor.

New leaks can and most likely will appear throughout her life.

A lot of visits to AI DuPont hospital.

We have to move!

We have to find a new home closer to Wilmington. It only makes sense.

My children are always my priority. I will do what is necessary to keep them healthy and good.

8/8 surgery #3 didn't go as planned and they couldn't locate her leak. She goes Thursday for surgery #4 in hopes of being able to find her leak.

If the leak doesn't get found my baby will not make it!

Her liver isn't doing good.

Her albumin is extremely low even after 4 transfusions and now we are doing around the clock transfusions in hopes of seeing a increase.

She is extremely swollen and uncomfortable.

Please keep praying for my baby. God can't have her, she is mine!

I'm truly scared she may never leave this hospital.

Day #20

Thursday she had surgery #4. They were able to locate her leak and glue it.

She spent 2 days back in the ICU and 12 hours on a ventilator.

3 days after surgery she is running a fever and fluid is filling up in her chest again.

Running more tests in hopes to getting answers.

She developed COVID again and chicken pox due from her recent vaccines

Aug 30th, 32 days here at the hospital.

She's had 6 surgeries so far. Today they discovered she had a blood clot in her neck. She is currently in surgery to remove that clot.

She now has 3 chest tubes draining fluid non stop. She is currently draining as much as a liter of fluid daily.

Brenna was also found to have a new leak which will require her 7th surgery next week.

9/6

She had two unsuccessful surgeries trying to remove her blood clot

During her 2nd attempted surgery she ended hemorrhaging. Her body went into shock, blood pressure was only 34/22 and she needed a blood transfusion IMMEDIATELY, which doesn't happen fast unfortunately.

She was on a ventilator for 3 days before waking up.

She developed a fever of 104.3 and was given ice towels to try lowering it.

Day #41

God started working and fixing her.

We informed her blood clot is gone! Doctors words "it's a miracle, I don't know how it happened"

Her chest is clear and not holding much fluid, she is draining everything out.

Her lungs are both inflated and doesn't appear to have lung disease as suspected.

They removed one of her chest tubes and she only has two!

She is feeling a lot better

She will be having another surgery this coming week to hopefully locate and fix her current leak in her Lymphatic leak.

She losing a lot of weight. She is currently 13 months old and only weight 16 pounds .

9/15

47 days in the hospital. She is now leaking and draining 2.5 liters of fluid daily.

So much fluid she is having issues maintaining nutrition. Her sodium is struggling and is very low which is causing her to sleep a lot.

Is is draining everything she needs out of her chest tubes.

She will be having another surgery this week.