{"id":120,"date":"2009-03-04T16:07:00","date_gmt":"2009-03-04T16:07:00","guid":{"rendered":"http:\/\/www.sweetgirlies.net\/2009\/03\/04\/sick\/"},"modified":"2009-03-04T16:07:00","modified_gmt":"2009-03-04T16:07:00","slug":"sick","status":"publish","type":"post","link":"https:\/\/www.sweetgirlies.net\/?p=120","title":{"rendered":"Sick!"},"content":{"rendered":"<p>I don&#8217;t even know where to begin with this post&#8230;it makes me so angry I can&#8217;t even think straight.  Somebody who posted to the comments section of my blog quite frequently turned out to be a fraud.  She claimed to have lossed a daughter earlier this year and sympathized with the pain Jake and I are going through.  I don&#8217;t have the time or energy to research every commenter, besides, I &#8216;know&#8217; most everybody who visits this blog, but apparently the entire story was a fake.<\/p>\n<p>Why would anybody want to go through this sort of pain?  I just don&#8217;t understand why!  There are so many things I wish I could do over; so many things I wish I hadn&#8217;t seen; so many things I would have preferred to have lived my whole life without knowing.  The next few points might be graphic so don&#8217;t read if you don&#8217;t want to.<\/p>\n<ul>\n<li>I wish I had more warning when Carynne&#8217;s heart stopped beating.  I thought there was something wrong with her monitor so I started fiddling with her toe sensor.  I woke Jake up and by the time he came in, I realized it wasn&#8217;t her monitor, it was her.  I told him I couldn&#8217;t see her chest rising with her breaths.  He didn&#8217;t believe me and then he noticed it too.  He started giving her CPR when I called 911.  Even though they pronounced her dead at the ER, we both believe she died here on the playmat with her sister.  Her stomach emptied onto Jake&#8217;s mouth when he was giving her CPR.  The smell of her formula on his skin the rest of the day made him upset.<\/li>\n<li>I wish I had been with her when she died.  I knew something was different during this trip to the ER because they wouldn&#8217;t let me ride in the ambulance with her, they made me ride in the police car.  By the time the policeman got me to the ER, the doctors were waiting to tell me that she had passed away.  I fell to the ground.  It didn&#8217;t seem real.  Sydney had been sick and honestly we expected her to go first.  Carynne gave us absolutely no warning.  But, that was her style&#8230;very quiet and calm.<\/li>\n<li>I wish Jake had been with me in the ER.  Because an infant died at home, they required Jake to stay at the house and make a statement for the homicide detective.  After I called 911, I called Sonya and screamed something into the phone about coming over.  She and John came to the house in record time, but I was already gone to the ER.  She dropped John off with Jake and came straight to the ER.  She told them she was my sister so that she could get back to see me.  When she came in, she saw Carynne lying there with me crying over her.  I wish that Sonya didn&#8217;t have to see that&#8230;I wish that she didn&#8217;t have to remember that image because it is such a painful one for me and I don&#8217;t want it to be for her.<\/li>\n<li>I wish that we hadn&#8217;t pushed Sydney as hard as we did.  When we first got diagnosed in January one of the first things we did was write up and sign DNR forms for both of the girls.  This meant that we didn&#8217;t want to have machines do artificial breathing for them.  Well, we essentially did the breathing for them the last two weeks.  I think that the deterioration of the disease happened so quickly though that we didn&#8217;t realize what we were doing.  When we were diagnosed on Jan. 23rd, the girls were put on oxygen only during naps and bedtime.  Once we got the oximeters, we realized that they were not getting adequate oxygen during the day as well.  At that point, we put them on .5 liters full-time, then 1, then 2, and so on.  By Feb. 23rd, the day that Sydney died, she was only able to maintain between 85 and 90 percent oxygen at 6 liters.  From what we&#8217;ve been told, 6 liters is too high for a baby to be on&#8230;it is like being on CPAP, which is what we didn&#8217;t want (hence the DNR).  There were times that she would &#8216;crash&#8217; and we would turn her oxygen way up&#8230;once all the way to 12.  I feel so guilty for that now because I don&#8217;t know if that was hurting her.<\/li>\n<li>I wish that I didn&#8217;t question whether or not Sydney had any brain damage.  Because she was hovering in the 80s so much the last few days I think she might have had some brain damage.  One of the nurses did a neurological exam at the very end and she was completely unresponsive.  This makes me so very sad.  It was at this point that we decided to pull her oxygen.  She laid on a pillow on my lap and I just held her.  Jake held her hands and we talked to her and told her it was ok to stop fighting and that her sister needed.  Sonya turned off all of the phones and locked the front door.  The whole house was quiet except for the sound of my sobs.  She took her last breaths in my arms and I just sat there and held her and kissed her head.  Sonya called Sean and he came over.  I wish he hadn&#8217;t seen her laying there in my arms because I think it really disturbed him.  About an hour after she died, the funeral home people came to pick her up.  Apparently, because we hadn&#8217;t called 911 and because she was a hospice patient, they didn&#8217;t need to do a police report.  The two men came into the house and Jake and I carried her out in the cold to the back of their vehicle.  They had another body in the back in a body bag.  I was so upset that she would be riding to some warehouse with a stranger.  I just felt so empty and alone for her.  I asked the men to make sure that she was put by her sister so that they could be together.<\/li>\n<li>I wish that I didn&#8217;t have to explain our decisions to people.  No, we are not burying our children, we are having them cremated.  Jake and I have always said that we wanted to be cremated rather than buried so it was a pretty easy decision to do the same for the girls.  The most convincing reason why we wanted to have them cremated is because we don&#8217;t know if we&#8217;ll continue to live in this house, let alone this city or state, and we wanted to make sure that we&#8217;re always with them.  Megan suggested that I get a locket where I can put some of their ashes and then get it soddered (sp?) shut.  My parents got me one for my birthday and I am going to have their initials engraved on the front before I send it to get it soddered.  That might sound morbid to some people, but I can&#8217;t even begin to explain how hard it is to be away from them.  I think it is some sort of motherly instinct to always be near your children and protecting them and it has been so hard for me to just be away from them physically.  After the funeral on Saturday, I just stood over them because I couldn&#8217;t leave.<\/li>\n<\/ul>\n<p>So, I guess the whole reason for this post is to try to show how real this pain is.  I wouldn&#8217;t wish this on my worst enemy and for somebody to be so attention-hungry to make up such a story is beyond words to me.  One of the most positive things I have learned during the last few months is how good people are.  A few bad apples won&#8217;t tarnish my opinion that people truly are good and I hope it doesn&#8217;t yours either.  The outpouring of love and support we have seen is amazing and I can&#8217;t even begin to say thank you to everybody who is thinking of us, praying for us, doing our dishes, fielding our phone calls (you know who you are Jess and Sonya) and working so hard to wipe this devastating disease off the map.<\/p>\n","protected":false},"excerpt":{"rendered":"<p>I don&#8217;t even know where to begin with this post&#8230;it makes me so angry I &hellip; <\/p>\n","protected":false},"author":2,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[1],"tags":[],"class_list":["post-120","post","type-post","status-publish","format-standard","hentry","category-uncategorized","latest_post"],"_links":{"self":[{"href":"https:\/\/www.sweetgirlies.net\/index.php?rest_route=\/wp\/v2\/posts\/120","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.sweetgirlies.net\/index.php?rest_route=\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.sweetgirlies.net\/index.php?rest_route=\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.sweetgirlies.net\/index.php?rest_route=\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/www.sweetgirlies.net\/index.php?rest_route=%2Fwp%2Fv2%2Fcomments&post=120"}],"version-history":[{"count":0,"href":"https:\/\/www.sweetgirlies.net\/index.php?rest_route=\/wp\/v2\/posts\/120\/revisions"}],"wp:attachment":[{"href":"https:\/\/www.sweetgirlies.net\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=120"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.sweetgirlies.net\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=120"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.sweetgirlies.net\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=120"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}