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Getting baby Joseph closer to home

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We never planned to even think of a GoFund me account but was recommended by the hospital and family to do so. My husband and I delivered micropreemie twins at 25 weeks in May of this year.... our little girl is finally home on oxygen and doing well after 122 days of horrible NICU stay.  Joseph jr only weight 1 pound 13 ounces at birth and Cadence weighed 1 pound 9 ounces. Both measuring 13 inches long. Our little boy Joseph jr. has unfortunately been through the ringer medically... he suffered a level 4 brain bleed to the left side of his brain and level 3 to the right side, bowel perforation on the 8th day of life, severe chronic lung disease which caused him to be intubated up to about six weeks ago with multiple failed attempts causing him to need to be resuscitated twice, organ failure,  he’s had two holes in his heart, also known as PDA and PFO, he’s had five GI surgeries, ostomy, dysmotility, etc. the list could go on. Joseph has had two brain surgeries, with the last being a shunt placed in his brain to remove the cerebral spinal fluid off the brain, hernia repairs, laser eye surgeries, etc. medically the list could continue. We have been asked multiple times to let him pass away, but he keeps proving everyone wrong, including the surgeons. We have had to get a second opinion multiple times just to keep him alive. 
We have had to be his advocates against teams of medical staff that give us text book prognosis for him.
I must return to work on the 1st of November  in order to provide for our family of now six kids .... I will thankfully be taking five weeks off whenever Joseph DOES get to discharged. My husband and I have spent an excessive amount of money in the past five months of transportation and living fees coming to San Francisco every week, child care expenses for our other children so that we could be down here with the twins, etc.
Now that I am returning to work we will no longer be able to come down and see Joseph in San Francisco,  so we have requested that we have Joseph transferred to a hospital almost  two hours closer to us so that we can see him and so that his twin sister can come be with him more often... unfortunately the health insurance will not pay for a non-emergency medical transfer. On top of all of this, Joseph has been attempting to bottle feed for ONLY two weeks and not coordinating well yet and does not have the strength yet to complete a bottle. The hospital is only giving him 15 minutes to take as much as possible and the rest they are gavauging into a tube in his nose. The doctors and speech therapist are trying to insist on a Gtube placed in his stomach to feed him. I have said no because he LOVES bottle time and tries so hard. He loves his pacifier too. Unfortunately they are not agreeing and feel that only 2 weeks of attempting to eat is long enough... so this is ANOTHER reason we need to get him transferred to a NICU in Santa Rosa to get the second opinion and potentially a more aggressive intervention. Joseph is more thank likely to be diagnosed with Cerebral Palsy and is already showing signs of stiffness. Our goal is to get him transferred closer to home so I can come down and see him after work and work on feeding him, and get him home so that physical and occupational therapy can start early intervention therapy with him to give him the best outcome on life, and hope he can walk when he’s older. 
We did not expect to be told we would have to pay for an ambulance fee of almost $8k total to have Joseph transported closer to us and to get the second opinion he needs.

Organizer

Tamara Renee Lyons
Organizer
Kelseyville, CA

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