Help Baby E Fight Through Recovery After Life-Saving Open-Heart Surgery.

My name is Holly Nielsen, I am the Nana of the most precious granddaughter that was diagnosed with congenital heart defects right after she was born. I am creating this fundraiser for my son Conner, Estee my daughter-in-law, and their precious baby girl. Baby E was born on September 5th, 2025, weighing 7 lbs 14 oz and was perfect.

About 14 hours after she was born, the hospital pediatrician detected a heart murmur. She had also failed two oxygen tests, had an increased heart rate and developed a low-grade fever. Because of these urgent concerns, she was immediately admitted to the NICU, where she stayed for the next five days.

During that time, doctors discovered something no parent is ever prepared to hear. Baby E had two ventricular septal defects (VSDs)~ two holes in the walls of her heart.

After leaving the NICU, her first weeks at home were filled with constant monitoring and weekly cardiology appointments and echocardiograms. By her second week, she was already on Lasix and then potassium was added as her heart and lungs worked overtime.

She began refusing breastfeeding and required bottles of breast milk fortified with powdered formula to add desperately needed calories. She would gain a few ounces only to lose them again. She developed a cough, became easily fatigued... sleeping a lot more than an infant would. These were all signs that her tiny heart and lungs were struggling.

Congenital heart defects, especially VSDs are the #1 birth defect in infants, but many families have never heard of them until it happens to their child. We hope that by sharing her story, we can help others recognize these signs early. Congenial heart defects like VSDs aren't always seen on ultrasound.

On Thursday, November 20th, Baby E underwent an extremely difficult and delicate open-heart surgery at just 11 weeks old. To save her life without this surgery she would have continued to deteriorate.

Once the surgeon had her chest opened he found~

* The upper VSD was extremely large and rare (largest VSD he had ever seen or repaired measuring 30mm.

* The lower VSD was smaller but difficult to reach, positioned between the aorta and pulmonary arteries.

* Surgeons had to cut into her heart muscle to attach the patch for the largest hole.

* She spent 3 hours and 46 minutes on the heart-lung bypass machine — an unusually long time for an infant VSD repair

She has been in the PICU since surgery, still sedated, on a breathing tube, multiple medications and supported by what we hope is a temporary pacemaker.

Since her operation, she has experienced oxygen instability and heart rhythm issues, including episodes of de-saturation that required her heart to be shocked back into a safe rhythm. A feeding tube was placed to begin waking up her stomach and intestines so she can slowly start receiving nourishment again.

Her recovery is expected to be long and fragile, with many unknowns. This is a marathon not a race!

Conner works full-time and has a part-time job, we don’t know when he will be able to return to work. That will depend on when she can come home. No parent should have to choose between being at their critically ill baby’s bedside and being able to support their family.

Your donations will help ease the immediate burdens created by this medical emergency and allow her parents to focus completely on their baby girl’s healing.

All donations will help support~

* Lost wages during Baby E’s PICU stay, her stay in Urgent care once she's able to be moved there and for some time so her parents can adjust to her being back at home. Also when Conner is back at work he will be able to take time off to attend her post surgical check ups

* Additional costs at UVA

* Post-surgery care and home and recovery needs

* Uncovered or unexpected medical expenses

* Supplies, equipment, or support needed once she returns home, at this point we don't know what that could look like or the timing as to when it will happen.

Baby E is a fighter she's one tough little girl! She has shown more strength in 11 weeks than most of us show in a lifetime.

We are all praying for a smooth, uneventful recovery and for her to have a long, healthy life ahead.

Whether you donate, send prayers, or sharing this fundraiser it would mean more to our family than words can express. Thank you from the bottom of our hearts for your support and prayers!

Updates~ As of today 12/13/24

Baby E has had some set backs and complications that are sometimes expected with an extremely complicated open heart surgery. Since her open heart surgery 3 weeks ago she also unfortunately has had another open chest surgery that was also successful! Her breathing tube was removed on Thursday!!!! Which was also her 3 week mark from her first surgery!!!! Finally after those long 3 weeks Conner and Estee were able to finally hold their little girl for the first time!!!

Her recovery is moving in the right direction and it's one day at a time, everything that is removed~ from monitors, oxygen and medications is done very very slowly because over the last 3 weeks she has become dependent on everything.

Today she was finally able to move into her "Big girl crib" mommy and daddy have been right by her side holding her, comforting her and loving her. She still has quite the battle but all of that is just proving how tough this little girl is! Please continue to donate, share and spread education about CHD.

Please understand, to protect her we will not be posting any pictures of her for the public.

Much love from Baby E and family!