Abram was diagnosed with hydrocephalus, which is extreme swelling in the brain, at 30 weeks gestation. We were told by doctors that I wouldn't carry to term and that it would be a good idea to start planning his funeral. (What fantastic bedside manner!) I spent the next few hours crying and bringing to memory every single ounce of caffeine I drank, times I had used hair spray, and houses that I visited that had cats and therefore a kitty litter box. It couldn't be real, but it was. I told my husband, Ben, that the only way I'd consider making arrangements is if I at the same time was able to write a letter to share at Abram's wedding. I never made it to the funeral arrangements.
After 5 weeks of torture we had seven tests come back stating that Abram tested negative for any chromosomal abnormalities. I cannot tell you how much rejoicing took place in our hearts and our home that night! Our son's life expectancy just sky rocketed!
later we would find that it was an x-linked trait, which in short means that while my coming into contact with kitty litter and hair spray didn't cause it, my genes did.
Abram was born 3 days before my scheduled c-section. His head circumference was 52cm (!!!), he weighed 10lbs, and was a beautiful 21 inches long. We were so amazed and in love with this miracle, our little king. In the first hours of life his eyes were open and he was smiling. He went into surgery 2 days later. They placed a shunt in the center of his brain and strung the drain through his abdomen. Recovery was extremely hard on him. It took weeks for him to eat on his own, but after 4 weeks of living in the NICU Abram and I came home. We are now reunited with his big sister and my husband and we are loving learning what it's like to be a family of four.
We still have many hurdles to face. Shunts fail often and while he is still a baby and unable to communicate he will need EXTRA care. He came home on a monitor, we have home health care nurses out at the house once a week, he has physical therapy and occupational therapy once a month, as well as a first steps program to help with any disabilities he may have. We are not sure what to expect as far as "quality of life". We were told his disabilities could range from never being able to walk or talk or a slight learning disability. It is a long road ahead, but we couldn't think of any other little guy more deserving. He is the perfect fit for our family and we are so in LOVE!
Recently we have had a lot of friends and family contact us asking how they can help. Right now we are looking at astronomical medical bills between my delivery, Abram's surgery, and all of the genetic testing that still needs to be done. We are trying our best to trust the Lord and stay focused on what really matters. Financially right now we are just trying to keep our head above water. Any donation you can make will help. And we are willing to work for it. Ben is very handy and I have experience with event coordinating, floral design, and cleaning homes. Thank you for considering us in our time of need.
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