Sweet Baby Hannah Grace

4/5-Hannah is still holding strong. Her blood pressures have been elevated so they took her for another CT scan and it was unchanged. She received a round of plasmapheresis yesterday and they will re-evaluate today if she needs it again. So now, it seems that it has all come to a standstill, which is great because she has stabilized some, but hard for Kerry and Devin. It's a hurry up and wait situation. Little Hannah is a fighter and is exceeding the odds. Your continued love, support and prayers are so appreciated.

*Written in the words of Hannah's Daddy*

4/5/24 Update- Good Morning to Hannah’s fan club. Hannah continues to be the precocious, confident, and resilient force of joy we all know. Her substantial stroke affected the right brain and the neurosurgeon states the left brain looked better than expected. She should be able to still talk and use her right hand to write. Kids are resilient and the left brain can take on functions of the right brain over time, especially with kids. Outcomes are still unknown until she wakes up. Signing the neurosurgery consent was a trepidatious experience. If over intervention is done, it could condemn her to a horrific quality of life when supportive measures would have let her go in peace. It’s heartwrenching to weigh my needs vs Hannah’s best interests. I have a lot more empathy for those having to debate controversial issues and outcomes in life. Hannah gave us a little scare last night with blood pressure possibly being a brain bleed, but luckily it is just her fighting to live. I was able to do great self care when brothers from Freemasonry stopped by. They provided humor, reprieve, snacks for the parent room and generous financial support. It’s a blessing to have fraternal type support in your life. There have been countless offers of support and generosity which Kerry and I are eternally grateful for. One excellent doctor said he looks forward to the day she can give him the middle finger for ever doubting she would make it. Hannah is a powerhouse institution and has such an incredible presence for good. Hannah would be so excited that her tribe loves her and will want every message read to her eventually. God bless you all…..one day at a time, until tomorrow!

Surgery Update 4/4-She is out of surgery, it went better than expected. Her left brain was pink, and her right brain had an area of injury, they won’t know the extent of how it will affect her for a while. She is an anomaly, they have consulted teams across the country for neurology, and infectious disease. They were able to do the LP during surgery and so far that looks clear but they are keeping the antibiotics and antivirals on for now. She should not be alive right now, she is an absolute miracle. We don’t know if she will survive this, but doing surgery was the best choice.

**4/4 UPDATE** So Hannah had a rough night. They did a paralytic vacation yesterday and she was able to blink her eyes and move her right side, but it was noticed that her left side was not moving much and there was significant weakness. They decided to give her mannitol to help the body get rid of fluid around her brain. They performed a CT Scan which showed that Hannah had a stroke after her cardiac arrest and there is still significant swelling around her brain. She is going into surgery today to perform a bone flap to allow her brain to swell while they try and get it under control. Kerry and Devin remain at Hannah's bedside as they watch their little girl fight and show strength beyond measure.

**UPDATE 4/2**Hannah is still on ECMO and they still plan to keep her on ECMO for now. She is now on CRRT (slow, 24 hour a day dialysis) and is on vasopressor medication. Vasopressors help keep her blood pressure high enough to perfuse her vital organs like her kidneys, liver, brain, lungs, heart. They are doing a continuous EEG to monitor for any seizure activity. So far, so good! She had some bleeding around her ECMO cannulation site and from her nose, so they gave her some platelets to help her clot faster. The MRI revealed swelling and fluid around her brain and one side is more swollen than the other. They are planning to do a lumbar puncture for further testing once she is off ECMO. She is still critical, but everyone is hopeful for her recovery. Keep Kerry and family in your Prayers and of course, Sweet Baby Hannah Grace. Your generosity has been overwhelming and I know that Kerry is unbelievably grateful for the phenomenal outpouring of love, prayers, and generosity.

**3/31**Hi, as you may know, Kerry and Devin's daughter came into this world as a fighter and has overcome so many obstacles to be on this earth from the moment she was born. She overcame those obstacles and fought her way out of the NICU as an infant and has been a happy, healthy, sweet baby Hannah Grace since then. On 3-31 (Easter Sunday) Hannah was found unresponsive at home with a high fever and having seizures. She was brought to the ER where she was intubated and flown out of the local ER to Lurie's children's hospital for better management of her care (pediatrics). She underwent her MRI, but during her MRI, she suffered a cardiac arrest and required 20 minutes of resuscitation. Her little body is fighting so hard but it is tired and so they are giving her a rest and putting her on ECMO (cardio/pulmonary bypass). Kerry and Devin will be at sweet baby Hannah Grace's bedside (as they should be) to support her and they will need help. Please help in any way you can. I know they will appreciate it so much and it will ease the stress they are dealing with at the most difficult time any of us could ever imagine.