Are you part of the NICU club? Do you have a child who is still struggling with the effects of being born too soon from preeclampsia? Share your concerns and stories here among parents who have been there.
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Re : Heartbroken...

Postby jacobkaden » Wed Jul 23, 2008 06:31 pm

Nikkole, we were "on the edge" of losing Jacob more times than I care to count, both in the NICU/PICU and at home with many bradycardic episodes. We were often given the "grim stats" and many times told that his lungs were in rough shape. Jacob was also vented for about 64 days. What saved him is his determination to live, his love of food, growth and most of all, lots of love and prayers. Ethan has all of these qualities and more! The good thing about lung tissue is that it does heal and regenerate over time. If he can just keep growing, he can still make it - hugs.

I'm just wondering if coughing up his secretions was the only reason they could not extubate him, is a tracheostomy a possibility? He can still be vented via a trach. With a trach, you can suction the secretions out via a suction machine. Many of my online friends have preemies who had chronic lung disease and ended up needing a trach and a ventilator to come home. Of course, it's not ideal and it brings a whole different stress, but a trach saves lives & has definitely saved Jacob's. His lungs recovered, but he needed the trach for other airway issues related to being a preemie. In time, with growth and development, the trach and vent can be removed. I think the general practice is not to consider a trach until after a baby's due date, as it's so unpredictable how a preemie will develop, esp in those early NICU days and a trach, as mentioned brings a whole different stress to your lifestyle once you get your baby home. The big difference being, you have a baby to bring home!

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jamie w
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Re : Heartbroken...

Postby jamie w » Wed Jul 23, 2008 04:43 pm

Everything I type I just keep erasing because there is nothing to say to make it better. Please know we all are praying for the both of you daily and we will continue. Ethan is strong, as are you, and my prayer is that you will both continue to fight as you always have. HUGS, PRAYERS, STRENGTH, COURAGE, AND LOVE all sent out your way...

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Re : Heartbroken...

Postby caryn » Wed Jul 23, 2008 03:34 pm

Nikkole, you must be in such shock. Please let us know if there's anything you need, and know that we're all thinking of you and Ethan.

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heather j
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Re : Heartbroken...

Postby heather j » Wed Jul 23, 2008 03:30 pm

Wrap your hands around whatever hope you can find and hold it for all it's worth, Nikkole. You deserve a network of people to hold you up in real life right now, but you have every single one of us as stand-ins in the meantime. We're praying and pulling for you and Ethan *every* single day.

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Re : Heartbroken...

Postby jana m » Wed Jul 23, 2008 03:17 pm

I cannot even begin to imagine how you feel right now. What about another opinion? Maybe a doctor who has never seen or taken care of Ethan before can give a fresh perspective? A fresh set of eyes is so helpful sometimes.

Please don't give up hope. I know how hard it must be for you to stay positive after everything you have already been through and what you are going through right now. Ethan has already proven how strong he is and so I am going to continue to hope that he can pull through and grow!

Lean on us. We are all here for you, so lean on us.

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Re : Heartbroken...

Postby aundapenner » Wed Jul 23, 2008 03:12 pm




(((strength - again)))

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Re : Heartbroken...

Postby amanda » Wed Jul 23, 2008 02:49 pm

Oh Nikkole -
I'm so sorry that had you had that news - it is truly heartbreaking. I so hope that Ethan shows them wrong - that he continues to grow and that he gets stronger by the day. I'm sorry that I don't know what else to say - I just want you to know that I am thinking of you and Ethan.

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Re : Heartbroken...

Postby ozierja » Wed Jul 23, 2008 02:31 pm

I am so sorry; I just don't know what to say. Praying for you!

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Re : Heartbroken...

Postby 4evermyangel » Wed Jul 23, 2008 02:18 pm

Please know that you and Ethan are in our thoughts and prayers daily.

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Re : Heartbroken...

Postby patty » Wed Jul 23, 2008 02:05 pm

I can't imagine how hard this is for you. Please don't give up hope. We are all praying for Ethan and you every day!

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