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Portia - posted on 07/12/2012 ( 2 moms have responded )

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I just wanted to introduce myself and the reason I'm here.

My name is Portia and I am a mother of 5 beautiful children and I've been married to their father for 10 years (this October). On January 2nd this year, I gave birth to what the doctors call a miracle baby. She was only expected to be with us for 4 hours. She has the same condition that took my son's life 2 years ago. Although, there's not a specific name for it, she has a trach due to a small airway, she has a very small tongue and the protective lining to protect her from choking as she swallows, does not exist for her. So she has a feeding tube and both these things are looking to be permanent. As my husband and I fought to save our baby girl's life, the hospital vowed to do nothing for her, they were only going to give her hospice care, but if she had difficulties they wouldn't intervene. We went as far as attending an Ethics' Committee meeting at the hospital and lost. The only thing that saved her was that I went into the hospital the day after New Year's. My doctor or the other disputive doctors were not on call. So I came in contact with a doctor who treated me and my baby as any other woman.

I begged the neonatologist to do whatever he could to save her. He did and now as she attends her appointments and the docs see her, they are simply AMAZED. In fact, her last ER visit, the doc fought back tears as he told me how he was proud to know such a strong woman (me). He told me that I made the best decision to fight for her. Long story short, 4 hours turned into 6 months!

While we still don't know the full extent of her disabilities, day by day is a journey. Elyse has a Apnea monitor, a feeding pump and a suction machine. When she sleeps, she has to have a humidifier on. We are allowed to have her off of her Apnea monitor an hour a day. However, on the brighter side of things, she is doing so much better than expected.

With all of this going on, I only have 1 "friend" who understands somewhat of what I am dealing with. I don't know where I'd be without the daycare her pediatrician and NICU doctors basically forced me to look into! The daycare is staffed with Nurses and aids, so I can drop her off 5 days a week from 7a - 5p. This allows me the much needed break to be with the other kids. Other than that (I know I am not) I feel so alone. I have an amazing family and friends, but none of them can help in the ways I REALLY need them!

My husband and I don't sleep a lot because anything could happen at anytime. So this is me ... us! Looking forward to meeting and sharing with you!!

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Portia - posted on 07/16/2012

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Hello Jodi

Thanks for the warm welcome! Glad to hear that Colton is doing great after going through so much. I have been afraid of a lot of things lately. But over the weekend Elyse had her first big outing. Up until yesterday, her outings consisted of doctors, daycare and sometimes the grocery store. We took her to church, McDonald's and to the park!!! Sometimes I get so overwhelmed, I feel like crying. I love that little girl more than life itself and I am so happy she is here with us.

I have heard of down syndrome, but I don't know much about it. What is the full diagnosis of your Colton?

Portia

Jodi - posted on 07/14/2012

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Hi Portia! I hope belonging to a group that has a variety of children with special needs will give you some comfort. The story of your daughter's beginning is so heartbreaking. I feel that doctors took an oath and they did not live up to it in her case!!! It just feels me with outrage!!! I am glad to hear that your daughter is going well. I truly feel that God gives us these children to teach us valuble lessons. Although there are days when we just need a break. None of use are without flaws and we need to reach out to others and give comfort and understanding. My son, Colton, has Down syndrome and was born with a club foot, closed tear ducts, 2 holes in his heart and a defective mitrovalve. After casts, leg braces, eye surgery and open-heart surgery he is doing great. He will soon be 8 years old! So I do understand your fear of something happening to her during the night. Just try and tell yourself that her day will be a lot better if you are well rested. Please keep in touch and let me know how she is doing. Love, hugs and prayers.

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