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