Elegarth Posted March 16, 2015 Share Posted March 16, 2015 A few months ago, one of NPO senators, Laws and Bylaws (also known as LAB or Paul) discovered he and his wife had issues to have kids. So they made a lot of sacrifices and got themselves an InVitro fertilization and she was then pregnant with twins, which was probably the happier moment of their lifes. On 12th of March, the boys were borh, 4 and a little bit months earlier, and with the obvious health complications this brings. Here is a brief of the current status of the babies: March 12th Ezekiel Quinn (horizontal) was born at 1:49 AM 12 March 2015. He weighed 1 lb 13 oz. Noel Marcus (vertical) was born at 1:50 AM 12 March 2015. He weighed 1 lb 10 oz. March 13th Brain ultrasound shows some cranial bleeding for Ezekiel. While it isn't currently super horrible, it's not a good thing either. Ezekiel has some bruising, which while not severe is a risk for some other jaundice-related symptoms. It seems to be healing. Both have PDA (http://www.nhlbi.nih.gov/health/health-topics/topics/pda) but it should be OK for the next couple of days. It needs to resolve though. And soon. March 14th Ezekiel Quinn has a small (not disparaging his diminutive self) pulmonary hemorrhage. The normal solution would be ibuprofen to help with the clotting, but because he has cranial hemorrhaging, that could compound his problems. It seems to have stabilized a little as I write this, and he's getting a blood plasma injection. Unfortunately his blood pressure is also kinda high, which gives the doc some additional concern. It'd be great if Ezekiel would just stop giving us all a heart attack. Ezekiel, I'm looking at you. Don't make me come over there. March 15th Ezekiel is 'stable' at the moment (minimal adjustments needed to oxygen and IVs), but has displayed indications of seizures. He's on a head monitor at the moment and has had some spikes indicative of some seizure activity. We are just sitting here watching him and hoping/praying things are ok. Tomorrow, a neurologist will review the head monitor reports and provide more insight on his condition. He will also have a new brain ultrasound to establish whether the the bleeding has stopped or not. Doctor asked us to start thinking about what point to either tell the staff to proceed at all costs or pull the plug. While we aren't at the point where that decision had to be made, he wanted us to prepare for that. Still not sure what to make of that - we are already emotionally compromised and this is just that much more to deal with. March 16th Noel is doing great so far, no major concerns. Minor infection signs but already being treated. Ezekiel is still critical. He's having seizures still, and now has lactic acid buildup which indicates his organs are having trouble keeping up. The doctors are saying his tiny body probably can't handle issues with any more organs. The social worker is asking us to consider whether we want a cremation or burial if something happens. We aren't ready for this They are in dire need or your help. This is not a joke nore a scam. I have been supporting LaB through the internet, which isn't much, and they need both your support and some assistance. If you can find in your heart the small part that will drive you to help them, please do so here: http://www.gofundme.com/teambabydj ANY little bit you can add will help, and I'm sure Paul and his wife Sarah will be ever grateful. I'll keep praying. Thanks Comrades. Llamas 1 Link to comment Share on other sites More sharing options...
Darkesia Posted March 16, 2015 Share Posted March 16, 2015 (edited) Done. I had no idea Paul was under such stresses. Seems like yesterday he was deciding between the seminary and Air Force. Give him my best, please. Edited March 16, 2015 by Darkesia Pinned topic Link to comment Share on other sites More sharing options...
Elegarth Posted March 16, 2015 Author Share Posted March 16, 2015 I will Dark, for sure. Link to comment Share on other sites More sharing options...
Llamas Posted March 16, 2015 Share Posted March 16, 2015 This is... absolutely terrible. I sincerely hope that the children get better and make it through this, and it's disheartening to see this happen. I wish them the best. Link to comment Share on other sites More sharing options...
Ike Posted March 17, 2015 Share Posted March 17, 2015 I don't want to say too much or I'd come off as insincere- this is terrible, I hope they get better. Link to comment Share on other sites More sharing options...
Elegarth Posted March 17, 2015 Author Share Posted March 17, 2015 An update Ezekiel's cranial ultrasound was reaccomplished this morning with a video component (for the neurologist's benefit). They told us the bleeding is marginally worse. When we got back into the NICU to see him this evening they also said his seizures have stopped but there is also negligible brain activity at this point. It's unclear for now if that's due to medication or the acute brain injury he has. His left hemisphere is completely unresponsive and the right hemisphere needs stimulation before activity starts to register. The lactic acid buildup has slowed but there is still high volume he's got to metabolize. Things are not very pretty right now. While Noel responds to interaction (kicking, moving his hands, trying to suck on the nurse's gloves), Ezekiel does nothing when we speak or touch him. Ugh. All the feels. So hard to adult. Link to comment Share on other sites More sharing options...
Darkesia Posted March 17, 2015 Share Posted March 17, 2015 </3 Link to comment Share on other sites More sharing options...
Ike Posted March 17, 2015 Share Posted March 17, 2015 I hope they can pull through, even in the worst of times. No one should have to go through this. Link to comment Share on other sites More sharing options...
Ike Posted March 18, 2015 Share Posted March 18, 2015 Someone made a five hundred dollar donation. Whoever that is, they get serious respect from me. Elegarth and URAP 2 Link to comment Share on other sites More sharing options...
Elegarth Posted March 19, 2015 Author Share Posted March 19, 2015 Latest update Parents are stable, all vital signs point to extreme exhaustion. Baby Noel is doing great. His ventilator got switched out today for a more traditional ventilator (in an attempt to get his lungs to work the normal way). He loves it. Doctors are pleased as punch with his progress. Baby Ezekiel's status breaks my heart. His condition is 'stable' but he's still critical. The brain ultrasound from this morning (18 Mar 15) showed no additional bleeding but also had no indications of a positive trend. They pulled his cranial function monitor (CFM) today because it wasn't measuring anything important (it had been there to help the doctors find out if the seizures were still happening). Today (18 Mar 15) they started a dose of an aggressive steroid in hopes that it will help with the lungs and brain healing. The drug is known to induce mental development issues (though the doctors admit the studies are 15 years old and with a dose 80% higher than that administered today). At this point, the damage to the left hemisphere of Ezekiel's brain is chronic - the neurologist indicated that without a miracle, Ezekiel will have issues with controlling the right side of his body (the severity of that lack of control remains to be seen). Every doctor we've spoken to has had serious/grave looks and not held out much hope for Ezekiel's long-term quality of life. Fortunately, the boys are both alive, and they're both stable. And I have confidence that God can do things that doctors cannot - heal damaged tissue, restore damaged skin cells, and repair internal organs that are weakened and exhausted by Ezekiel's sickness. And I don't want the healing for my own emotional benefit, I want Ezekiel to be healed because the doctors would have to acknowledge the miracle. God doesn't have to heal Ezekiel, and I'll just have to find a way to be OK regardless of the outcome. Pray for us. The emotional and physical strain on all of us (including extended family) is incredibly difficult. For those who have messaged, emailed, called, made meals, cleaned things, run errands, etc - you guys are amazing. We notice everything you say/do and while we may not always have the ability to respond or say something right away we deeply appreciate and are grateful for your thoughts and prayers. To those who have donated to the long-term care fund for our sons, we thank you for your investment into our children. It means so much to us and we're humbled by your generosity. Sarah and I will never forget this experience, and we are glad you have continued to be a part of it, even if we can't communicate with you face to face. Link to comment Share on other sites More sharing options...
Ike Posted March 19, 2015 Share Posted March 19, 2015 It's good to see that the situation is getting (marginally) better. Seizures have stopped, condition is at least stable, I hope with all my heart that this story has a happy ending. URAP and Little Sealand 2 Link to comment Share on other sites More sharing options...
Ike Posted March 25, 2015 Share Posted March 25, 2015 So is there an update? I'm hoping for a happy ending. Link to comment Share on other sites More sharing options...
Elegarth Posted March 25, 2015 Author Share Posted March 25, 2015 I wish there was a happy update... so due to lack of happy ones I was sort of avoiding but here it is, in summary. Noel keeps improving day to day and seems to be stable and out of any danger. Ezequiel on the other hand is in critical condition... his belly started to turn green and they had to make a minir surgery ans discovered he had a blockade intestine... they removed a piece and connect the ends through the skin... and then they discovered a huge amount of bile and bowel fluids were still lodged and they needed to make a major surgery. He looks grayish and the aftermath of the surgery was some red flow from his breathing apparatus - from his collapsed lung. In the last two days they also discovered gis brain bleeding seems to have restarted abs the medical team is consulting options with the neurologist tomorrow... I do not want to say tge situation os worst for Eze but I wish with all my heart he can still improve somehow Link to comment Share on other sites More sharing options...
Darkesia Posted March 26, 2015 Share Posted March 26, 2015 It's breaking my heart. Llamas 1 Link to comment Share on other sites More sharing options...
simple country Posted March 26, 2015 Share Posted March 26, 2015 It's very sad to hear of this. I don't have any money to give but send my prayers to them. Link to comment Share on other sites More sharing options...
Ike Posted March 29, 2015 Share Posted March 29, 2015 It's been four days and I fear the worst. Any updates? Link to comment Share on other sites More sharing options...
Elegarth Posted March 29, 2015 Author Share Posted March 29, 2015 None. Or well, he does about two a day but still the same: Noel improves, Zeke remains critical but stable. He has had no crisis in a few days which is good. Link to comment Share on other sites More sharing options...
Elegarth Posted April 6, 2015 Author Share Posted April 6, 2015 Paul informed me that Ezequiel passed away earlier today. Peace be with them. Link to comment Share on other sites More sharing options...
Darkesia Posted April 6, 2015 Share Posted April 6, 2015 Poor little thing. Send them all my love. Link to comment Share on other sites More sharing options...
Llamas Posted April 6, 2015 Share Posted April 6, 2015 Requiscat in pace. I'm so sorry this happened. Link to comment Share on other sites More sharing options...
Consular Posted April 7, 2015 Share Posted April 7, 2015 Ahhhh, that's a sad thing. May wherever Ezequiel is now be a kinder world than the last. Elegarth 1 Link to comment Share on other sites More sharing options...
simple country Posted April 8, 2015 Share Posted April 8, 2015 Rest in peace, Ezekiel. Elegarth 1 Link to comment Share on other sites More sharing options...
Ike Posted April 16, 2015 Share Posted April 16, 2015 Damn it, I don't come on these forums nearly as often as I should. A tragic and unfortunately expected end. Link to comment Share on other sites More sharing options...
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