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sleepingdeep 
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 Topic: New frag, came early
Posted: March 25 2016 at 1:00pm |
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I cant imagine going through this. You are a stronger person than i could ever be. Your family is in mine's prayers. Your son sure is a fighter.
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rastareefer
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Posted: March 03 2016 at 10:47pm |
good to hear 
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badfinger
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Posted: March 02 2016 at 9:17pm |
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Update from yesterday:
After removing the wrong fortifier from the milk, today he ate from the bottle 36ml. So that's way more than ever before
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Shane H
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Posted: March 02 2016 at 8:01am |
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Good luck to you all. Hang in there.
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rastareefer
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Posted: March 01 2016 at 10:51pm |
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Best of wishes to ya stay strong!
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Fatman
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Posted: March 01 2016 at 9:03pm |
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Tough times, my prayers are with you.
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Adam Blundell
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Posted: March 01 2016 at 8:19pm |
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Oh man I can't imagine going through this.
Adam
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Come to a meeting, they’re fun!
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badfinger
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Posted: March 01 2016 at 8:03pm |
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Sorry its been sooooo long.
It's been 110 days and he is still in the NICU. Probably will be for 1 or 2 months more.
He had his takedown surgery and the surgery went well but coming off the ventilator was harder than expected. They tried once and he "code blued" in 30 min.
The doctors all say the lung issues will pass. But it's getting past that point that may take awhile
He is having a hard time eating on his own, bottle or breast. They are barley starting to try both since his oxygen needs are getting better.
He has bad acid reflux, and they say a "g tube" for feeding will be necessary. We are trying to fight them on it.(when I have reflux I don't want to eat either).
We found out today that for the last 2 1/2 weeks ( same time as reflux issues started getting bad) that the milk bank was putting the wrong fortifier in his milk and it's more harsh than the other one he should be getting. So this may be the issue why he can't eat by mouth yet and why the reflux is sooo bad.
Anyways, it's a waiting game and we sit there while other people come and go. Itso a hard waiting time and to think it may be 30-60+ more is even harder
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bstuver
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Posted: January 07 2016 at 10:00pm |
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I'm so sorry it has to be heartbreaking to watch and feel. I hope things start to look up for your little family.
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Jackie Stuver
"wait these aren't the happy Hawaiians oompa doompa godly heaven on your face zoas? I dont want them then. lol!" Ksmart
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badfinger
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Posted: January 07 2016 at 9:15pm |
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UPDATE:
Last few days, haven't been the best. I dont know it seams like everything went backwards. They tell us he may have a large heart. They tell us he had to go back on cpap.They tell us he had a rough day.
Most days have always been up and up, then since 2 days ago it has been down. I try to see the best in all this but January 28th is rapidly approaching(his proper due date) and it's all going backwards.
Sometimes I write on this so I read it, and see what has happened since I don't have Facebook or a blog.
To end on a positive note, he is not critical or anything just having issues. I hope they all stay here when we leave with him... my wife hopes by valentine's I am hoping by the end of March now. He still has 1 more surgery to repair his intestines. And then heal
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Fatman
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Posted: January 02 2016 at 10:16pm |
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Great news! Thanks for the update.
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badfinger
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Posted: January 02 2016 at 12:17pm |
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UPDATE:
its been awhile since i have updated, so i wanted to give an update.
The day after i last posted, he had to have 2 more blood transfusions. They determined that since he was born so little that his body was not making his blood at the rate it should.
Last night we got told they are starting to measure his head, every day instead of once a week. Why? I dont know, brain swelling? brain bleeds? maybe its cause his head is growing 3 centimeters more than it should. But hey my wife and i both have big heads so i am not too concerned. My wife just told me in the past week it has grown normally, so the doctors believe that one nurse miss-read the measurement
But in between those two days, things have been going upwards and well enough. As of today he weighs 4lbs 4 ounces, he was moved into a crib and out of the isolate. He is still on high-flow oxygen, and occasionally has desats.
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Fatman
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Posted: December 15 2015 at 7:41pm |
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Sorry you are having these struggles. Best to you and your wife and prayers for your baby.
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badfinger
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Posted: December 15 2015 at 6:51pm |
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Update:
The past week has been ok, he has still been having his brady-desats, but they have been mostly self resolving.
They are still thinking they may need to do another blood transfusion, but are waiting. Or at least the last I heard they are waiting, maybe I should ask my wife.
He had an ultrasound done on his head yesterday and the results are he still has a level 1 brain bleed/ hemorrhage or a premi brain, they can't tell a difference in an ultrasound. So they will do a cat scan in the next while.
He has been putting on weight, and growing lately so that's a good sign.
It will still be along road, but it's baby steps (no pun intended). I am thankful he is healthier than other babies there. He is still the smallest baby up there also.
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Baghtal
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Posted: December 06 2015 at 10:35am |
Best of luck for everything.
Those Dr's at PCMC are amazing and are some of the most competent and compassionate people in the industry. You're in good hands.
Please keep up with the updates. I hope all ends well
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I like to think that the moon is there, even when I'm not looking at it.
~Albert Einstein
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jdinchak
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Posted: December 06 2015 at 10:01am |
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You have had an amazing outlook and positivity through this. Reading the description of your week sounded horrible and I was not even involved. Hoping for a great week!
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180G Mixed Reef Tank
170G Dart Frog Tank
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badfinger
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Posted: December 06 2015 at 7:59am |
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Update:
Wednesday-Wednesday was a ruff week, he had 2 blood transfusions, put back on antibiotics, had to get fluid taken from around his spine 3 times to check for meningitis. Had a lot of brady-cardia and de-saturations. Plus had to have Infectious Disease team come in and do ultrasounds and blood work.
Infections Disease team told them to take him off antibiotics because he didn't have anything wrong, and all other tests (meningitis, UTI, pneumonia etc) came back negative.
The blood transfusions helped alot and his brady-desats are less and less. If they do happen, the DR's and nurses don't have to intervene much anymore.
Since about Thursday, he has been doing slowly better, putting on a little weight, he is at 1010 grams (2 lbs 3ounces).
My wife wants me to mention, she has got to hold him a few times also. usually they were short times cause he wasn't responding well, but Friday night she go to hold him for 2 hours.
Every parent at the NICU says, it's a roller coaster with ups and downs. So hold on to the good days
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Reefer4Ever
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Posted: November 28 2015 at 9:05am |
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Prayers hopes and wishes are being sent your way. Thank you for the update we have been wondering how things are going.
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90 gal reef w/refugium
24 gal softie tank
11 gal nano anemone tank
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badfinger
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Posted: November 28 2015 at 8:42am |
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I figured I would update this for everyone:
On Monday, they wanted him to make a stool. Since he hasn't since birth. And he did! Bad part, he stooled, 5 or six times in a day to where they cut back on his feedings. I didn't put last time, he has a ostomy bag on him because of the surgery, so part of his intestine is outside his body in the ostomy bag.
On Wednesday, night he started to have brady-cardia spells. Where his heartbeat would drop into the low 40-70 bpm. His blood has also been de-saturating (loosing oxygen). They put him back on a noose cannula for oxygen.
The part that worries the DR's is he was off oxygen for 7 days, and now needs to be back on it. They have ran a bunch of tests to see if there is infection, but everything is coming back ok, which means they don't know why it's happening.
He is a little low on red-blood cells, but they are hoping he makes them on his own, so he does not require a blood transfusion.
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bstuver
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Posted: November 25 2015 at 11:50pm |
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Congrats on the new little one. My thoughts are with you guys and yes please let us know if you need anything. And keep us posted:)
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Jackie Stuver
"wait these aren't the happy Hawaiians oompa doompa godly heaven on your face zoas? I dont want them then. lol!" Ksmart
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