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Old 09-06-2012, 12:25 PM   #21
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Re: Well he's here!

Please try to keep us updated. I know DS is hardly a priority in a situation like this but I find myself obsessing about how people are doing!

Praying for you and your little one mama. He's such a beautiful little boy <3

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Old 09-08-2012, 10:53 AM   #22
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Update. Still on the oslilating ventilator but off all blood pressure meds now and slowly weaning off the oxygen and nitrous. He is getting stronger all the time. The have also backed off on his morphine so he is awake more. Now basically waiting to go on to a regular ventilator or CPAP mask. Still haven't been able to hold him but one day closer all the time. Hopefully we will be able to start feeding him soon but just waiting on gut tones and some other things first.

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Last night they took out his iv line in his hand because it wouldn't flush anymore but he also doesnt need it at the moment so he is happy to be able to wave his arms around. Hopefully we are going to continue in the right direction so we can head home within the next couple weeks.
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Old 09-08-2012, 03:06 PM   #23
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Re: Well he's here!

Thanks for the update! Glad to hear that things are gradually improving. It sounds like a scary experience! Keeping your little guy in my thoughts.
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Old 09-08-2012, 06:21 PM   #24
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Re: Well he's here!

Oh that poor sweet baby - so glad he's getting better even if slowly. Hope you get to hold him and feed him soon!
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Old 09-08-2012, 11:01 PM   #25
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So happy to hear a positive update!
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Old 09-17-2012, 07:51 PM   #26
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Update for those still here. My baby boy now has a name Sawyer Anthony. He is now 14 days old, off the ventilator and doing well. He is finally tolerating feeds that equal a little over 2 ounces and today was the first day they have allowed me to nurse him and he is a pro already. Now just to work on the whole suck, swallow, and breath issue. But he will get there. As soon as he takes all his feedings by mouth for 2 days in a row we can go home. Soooo looking forward to getting out of the NICU. It has been a long couple weeks and I am ready to get back to my family and daily life. My hubby got to hold him for the first time yesterday and he had a hard time heading back to work today. He is also IV free as of today so no more IV lines to worry about. It's such a relief to slowly get rid of machines and equipment. He was diagnosed with what the call Persistent Pulmonary hypertension which is common in big babies that are white males and born early. The nurses call it wimpy white boy syndrome and many babies with it are sick for a long time. Fingers crossed he won't have any brain damage but the doctors are assuming he will have developmental delays of some kind in the future that they will be watching closely until he is older. It will be a long road but he will make it. Looks like 15 years ago 50% of babies with this problem died so the odds are a lot better now but still not something I would want to go through ever again. 1 in 700 are born with it so it is really common. I will try to post a new picture soon.
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Old 09-17-2012, 09:14 PM   #27
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I'm glad he is doing better and headed in the right direction! Home! Continued prayers for him and you!

I hope you don't mind but I update the other Mamas on facebook because most of them don't check DS anymore.
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Old 09-17-2012, 11:45 PM   #28
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Glad to hear the update, and you are in my thoughts and prayers. And I love his name!!!
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Old 09-18-2012, 07:39 AM   #29
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Re: Well he's here!

DDC

Praying he gets stronger each day ((hugs))
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Old 09-18-2012, 09:56 AM   #30
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What a beautiful name - love! So happy to hear the good news!!!
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