Jeffries Family-Help Baby Winter

Our family was so thankful to welcome our beautiful baby girl, Winter Nichole on November 20, 2017 and her birth was wonderful but we found ourselves within 48 hours in the Neonatal Intensive Care Unit. Winter was twitching and having seizure activity and she had to be admitted. After an EEG they noticed Winter was having abnormal spikes in brain activity. Doctor's have more questions than solutions and today at 24 days old (as we write this) we still do not have any answers. In the last three weeks Winter twitches non-stop and has had 3 major episodes where her breathing completely stops and her body turns dark blue. All we can do when this happens is to just watch her to make sure she stays safe and starts breathing, if she doesn't we go to the emergency room. She has endured numerous scans and now is on high dose medication for seizures which comes with additional fears of residual complications down the road. As parents, we can never sleep--literally we cannot let her sleep in her bed without watching her every move. We have to keep a constant vigil on Winter. As her mom I do not even want to take a shower or turn my back to cook dinner because in a matter of seconds a seizure could take her away. We only eat things we can grab because neither one of us has the energy to cook a full meal. As we juggle time with Bentley, our five-year-old, we had a BIG scare with him 3 weeks ago. He had a severe asthmatic attack resulting in a call to 911. When medics arrived his oxygen levels were so low he was taken to the hospital to do breathing treatments. Over the next several days his breathing was labored and he had to go see an asthma specialist. He is on medication but the stress still remains of a relapse. The layers of stress are beginning to take its toll on our familiy. There are times as parents we just cry. Outside of our four-walls we do not want to burden others with the care of our children. At this time we cannot just hand Winter off to a sitter, because the level of vigilance required is so extensive and the liability so great, the cost would be prohibitive. As a result it all falls to us, her parents, and it is impossible to provide the necessary vigilant care and go to work. FMLA protects my husband's job but there is no compensation. Unfortunately, short-term disability does not apply. 
(A note from Dad) 
As a man it is difficult to admit that we need help. I  want to provide for my family and right now that means Be There. We have had many friends reach out to us about how they can support us and right now prayers and any  monetary support to get us through this season would be humbly received and utilized to survive. Our basic bills including our Mortgage, utilities, insurance, phone, etc...are about $1500.00 per month. This does not include the costs of groceries, a newborn or the additional medical costs. 

Thank you in advance for reading our story, we appreciate you.
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Organizer

Brooklyn N Richard Jeffries 
Organizer
Kansas City, MO
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