My big boy may not be able just grab something and put it to his mouth like most kids but he is learning that and until then he is figuring other ways to get what he wants. He did this, he got it between his arm and chest and worked it up there and by scooting around a bit. He is one smart boy and determined and that determination is gonna be he greatest tool in his life. You cant make someone determined. When he was born and in the nicu the drs told us at 3 days old lincoln had pch pontocerabeller hypoplasia. They determined this by an mri it was devastating news, they said he had no chance of living past infancy and would probably die very soon within days wks. Pch is a horrible diagnosis and it has to be carried by both parents to have it and of course that is terrifying not only for lincoln but for our other children and family who are still having children or havent yet. I couldnt help but automatically thinking about how horrible it would be if taylor and ezra were sick or became sick or gone and how grateful i was that they were ok and at the same time im devastated my beautiful baby boy who is the most innocent person ever is going through this and that my family will never be together.my poor boy it was like we were in a nightmare But i was grateful he was mine and he was alive and fighting to be alive and they told us the news and just said sorry theres no hope. hes gonna die theres nothing you did wrong it just happens and dont be selfish and prolong his miserable life, and they left and they completely had no hope they always said to let him go before we became attached like he was an animal.and most drs wrote him off right away before meeting him most never looked at him or studied him they went by the chart and diagnosis and everyday he got stronger and he was so alert and we had an amazing bond w him from the beginning and it grew every day we knew him so well i knew everything about him i know if hes getting ready to desat before it happens what sets that off every little beautiful face he made and that although there was some serious problems and even though he was intabated and had to be horribly uncomfortable from that there was a very determined boy who loved and fully trusted his mommy and daddy and i knew that it was my place and responsibility to be his voice, his advocate and i will be his fighter and i will do what i know he would want and what he needed and my instincts w him have always been right every time and i knew he was there and that he could do it and have a happy life not just keep him alive for us because that would be selfish, but that he wanted to be there. The respitory therapists knew it and most nurses knew it to. But we very quickly realized they would not save him if we werent there and that they were waiting for us to say we were done and we told them if thats what your waiting for its not gonna happen and some rts told us the drs were stalling and holding out when there were options for him to breathe that drs never discussed about trachs. Well the drs said we were being selfish and that trachs are a nightmare and that it would scare my other kids. Well we finally told them hes getting it get on board and when the pulmonary team finally were told about him and came to meet him they were kinda pissed about what we were told and that it wasnt at all what they thought he would be. During our meeting w all his drs together they were last ones to speak and they said that they think he was a good candidate for a trach and he actually had great lungs and that Lincoln was doing all his brething on his own just needed an airway and that it was upper airway and they would bypass the problem and not only that they said it didnt match any of the pch cases they had or heard of and that lincolns cerebellum was not as small as they said and werent worried at all about him w it. After the meeting they came back to us and said he is not trying to breathe he is breathing and that we made the right choice. And every day he proved the other drs wrong every step of the way and he never had to be sedated or have any pain meds even w his surgeries he was a little bad ass.lol. Even with right hip dysplasia no pain med. He had surgery and just flourished came right off the vent and had no sleep apnea which they were positive he would. At the time we were told he was the best he would be and any day he would start deterating and it would be absolutely horrible and he that couldnt be further than the truth when he got home everything changed he was so happy and comfy and blossoming and a couple wks later they called w genetics results and the test was negative for pch we were so happy, relieved,confused,and also very pissed at the drs and i am more now. How dare they try to force that on us and to not give him a chance. And deny taylor and ezra their baby brother. They were so wrong and so sure they were right. Thank god for his pulmonary drs and ent drs. And thank god for modern medicine because he wouldnt be here w out his trach but they are so easy to take care of and not at all what they said they were like. Yes bad things can happen w them and we have had horribly scary times and situations but it is a beautiful thing not a nightmare. One nurse said no matter what decision you make you will always doubt it, and i have never for a second doubted it not even when there are hard times the scariest times, i know with all of my being that we made the best choice. Ive always been insecure and not sure of alot but at this time in my life and now more than ever i am absolutely positive i know how to take great care of my kids and that i know whats best for them. I also know how incredibly lucky i am.so blessed to have 3 perfect kids and the most amazing man who is my best friend and best father and in it all the way Nathan Couch. Today i turned 30 and every year i get so depressed on my bday but not today,29 was hardest and best at the same time i learned more this yr than i ever thought possible and it has changed me and set the foundation for my future. I am starting my 30s knowing my purpose in life and is to be w my man that i love and to raise our crazy babies and to give them all the love in the world and to be their advocate and its only getting started i will protect them as much as i can and i will never give up on my kids. I will spend my life making sure lincoln is getting the best care and taking care of him. We made the choice to give him life and i will spend mine giving him the best possible life. Tomorrow starts an exciting new chapter in our life big one for our little mr he is starting at the Perlman center and i know this will give him and us the tools we need. And support. I start my 30s determined.goodbye 20s.
Posted on: Tue, 02 Dec 2014 00:48:05 +0000
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