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VIDEO MEMOIRS

home at last

5/13/2016

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Update: We're comin home!!
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Boarding Room

5/12/2016

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Mom and Merv took a big step towards home this morning. We were a little more open about what we'd like to see happen with him and they decided to let us move to one of their "boarding rooms" with him in the NICU. There's a nice bed (see ya later parking lot camping), sink, private bathroom etc where it's just us and the baby. We take charge of all his cares, monitoring, feeding etc. as like a "trial" run to make sure he, and we, do well the rest of today and tonight and then hopefully tomorrow he'll be discharged. He will be discharged with oxygen. He's still de-sating a little I guess but if we choose to try and get him off oxygen before he leaves it could likely be another week!! Nothing is guaranteed here, meaning if anything alarming happens today or tonight he won't be home tomorrow. The main thing is if he has any extended episode of apnea or bradycardia (stops breathing, or heart rate drops real low). We don't think that will be an issue but Merv has been known to hold his breathe too long to send a message.

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homeward bound

5/11/2016

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So there's not a whole lot to update everyone on but Merv's been eating so well. In the 70's, 80's, or 90's (ml's) all day. He hasn't been de-sating (oxygen levels dropping) and he's acted really healthy. Carly and I camped in the back of my truck in the hospital parking lot last night so she could get up and go right in to feed him every feeding. It was fun and I don't think we freaked any other campers out too bad...as we were the only ones. It's actually a really good time of year to camp at Timpanogos Regional. Not busy at all! We found a really good spot right next to some green grass where the street light was mostly covered by a tree so it was actually dark. Well dark-ish. Anyways, hopefully Merv'll be home with us by Friday. He's passing all the tests with flying colors but they still want a little time to monitor him.

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phenomenal

5/10/2016

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Update: First let me just say he is CHANGING. He's like a new baby both in behavior and looks haha I think it might be cause newborns always lose a little weight but his face has totally thinned out, or like become more defined (still very chubby though!). He's so cute. And health wise he's been doing really phenomenal. Still on oxygen but that's not too big a deal. He's been eating so well and that's usually something that keeps babies in the NICU a long time. He's supposed to eat 65ml a feeding and he's had a few in the last 24 hours where he ate in the 70's it has been so exciting considering how little he ate at first and how hard it was to get him to latch. We had a visit from an occupational therapist who worked with Carly for about an hour on breast-feeding and it helped so much. Plus Merv has just gotten better himself. Things are good. Still not sure when he's coming home, but it couldn't be too much longer I'd think.

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he's a fighter

5/8/2016

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Mervin is doing very well. He's kept his temperature up, breathing strong, oxygen levels high and starting to eat from Carly a little better. He's on day 6 of 7 of his antibiotics. The new hurdle now will be to get him eating all the food he needs so that we can remove his feeding tube. That's going to be a challenge and I guess is usually the most common reason babies take a while to discharge from the NICU. We don't have s timeline for his discharge but our goal has always been by Tuesday. The whole eating thing may keep us here longer but time will tell. In the meantime, nap time looks a lot like this:

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superb

5/7/2016

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So today's update: Merv's doing superb. His labs were still a little elevated (for the protein test thing they do he needs to be below .2 and he's at a .6 ...still he was at like a 3 a couple days ago so huge improvement)  unfortunately so he definitely is going to have to be here for at least seven days as opposed to 5 days like we were hoping. It stinks but we're just happy he's improving. I wouldn't be surprised if he was ready to come home Tuesday. He's breathing great..A 1.0 on Flow and normal 21% oxygen and we're hopefully going to wean him completely off over the next 24 hrs. Because his Flow is nice and low Carly is breast feeding him now and Merv's learning to work for his food rather than just getting it pumped into his tummy. And let me tell, he's not a fan:) Clinically (like his behavior, look, etc) he's doing phenomenally better. Acting and looking like a healthy baby. He's honestly so frickin cool and we can't wait for people to spend time with him. A few more days and we should be there. Keep praying he makes positive strides!

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not so little miracle

5/6/2016

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The doctor just called me with results from the ultrasound. It was all good news. The mega cisterna magna (a little extra fluid in the back) is still there but he considers it a "normal variance" since everything structurally looks totally great. Fluids are draining, ventricles aren't swollen etc. So no action required now and no anticipation of problems.
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How it all shook out

5/3/2016

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​Hey guys, so an update. Mervin was doing very well after birth but his condition has deteriorated slightly and he's been transferred to the NICU. They noticed some rapid breathing and nostril flaring so they did some quick tests and found his oxygen levels were low. They followed up with a chest X-ray and discovered some fluid in his lungs. He seems to be doing alright and Carly is staying (mostly) composed. She's so great. Biggest change here is we can only put 4 people on a visitation list and can't change that list for the duration of his stay in the NICU. Mom, Dad and Carly's parents are who Carly wanted. Of course anyone can come visit Carly separately in her room (and I think she'd love the support) but for now not Merv.  It's sucky I know, but wanted to let you know.

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    This is a daily log and pictures of Merv and his miraculous arrival and fight of a lifetime to overcome challenges and resume good health following his birth.

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