tag:blogger.com,1999:blog-62055564622518511252024-03-14T01:22:34.911-05:00The Preemie ExperimentA community of people dedicated to the open discussion of the long term effects of prematurity.ThePreemie Experimenthttp://www.blogger.com/profile/15882375368535807238noreply@blogger.comBlogger174125tag:blogger.com,1999:blog-6205556462251851125.post-61566814707442519362011-11-16T09:37:00.005-05:002011-11-16T10:07:21.248-05:00Happy Birthday Paige!Happy birthday to our dear sweet daughter!<br /><br />Your journey has been one marked by many ups and downs. You've always been a fighter, never giving up. You are my hero!<br /><br />Your Daddy and I are so proud of you. We've watched you grow into this amazing girl, one who takes what life has to offer and runs with it. You are constantly trying to figure out ways to make your body and mind work in the world before you, even when it can be difficult.<br /><br />You never quietly watch injustices being done to others but instead you boldly stand beside those who need your support and show others the right way to treat people. You are such an asset to humanity!<br /><br />You are a WONDERFUL sister. Growing up as an only child, you are the exact sibling to Tyler that I wished I had.<br /><br />We love you Monkey!!<br /><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgIWDLOX_kQ2gr5njUJ_vsNauwb2ZKK9arouDN1KkZBKx34W3SC0XZCkT3gYZTLC_sikdqe801S1BKn5mh7SQ_iDn4rxkOqTRKWRDYxPhzT0Ty3kyyGT-vEa-ZfozJD_ljiMrT7F3lvVys/s1600/Paige+13.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 191px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgIWDLOX_kQ2gr5njUJ_vsNauwb2ZKK9arouDN1KkZBKx34W3SC0XZCkT3gYZTLC_sikdqe801S1BKn5mh7SQ_iDn4rxkOqTRKWRDYxPhzT0Ty3kyyGT-vEa-ZfozJD_ljiMrT7F3lvVys/s320/Paige+13.jpg" alt="" id="BLOGGER_PHOTO_ID_5675609502205151506" border="0" /></a><br /><br /><div style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj7rIlP9XfvTvJgnCnRG2nYX0KMArk6b_zvv21GVpP1TDtGEIGiBKobW7uln4aB8f37aVoKHC2L6FFjmPCzSvDSXoTvO9gXzhHh9ACyHwIqK3wuoP4HAdB6gnFUN_TD71Uy4EOVS7YL4ZA/s1600/Paige+confetti.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 191px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj7rIlP9XfvTvJgnCnRG2nYX0KMArk6b_zvv21GVpP1TDtGEIGiBKobW7uln4aB8f37aVoKHC2L6FFjmPCzSvDSXoTvO9gXzhHh9ACyHwIqK3wuoP4HAdB6gnFUN_TD71Uy4EOVS7YL4ZA/s320/Paige+confetti.jpg" alt="" id="BLOGGER_PHOTO_ID_5675609900408910578" border="0" /></a></div><br /><div style="text-align: center;">Paige-after her confetti shower<br /><br /><br /></div><br /><div style="text-align: center;">I did it! We celebrated Paige's 13th birthday and I didn't cry the entire day!<br /><br /><br /><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi9t1P9nf5NTNWngQrWASqxNVDBtN2Qt6bFeVMg46s5FVr6VgUiOYD5FKi_G7ZDcLQPCnpD2o4Fr5Vb-jgSBUEYjbuT7BOQrdGZrzdD14x3-pp-y6CUSOXNF0v6annXXBE1rvDAN7KtbFI/s1600/Paige+and+mom.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 191px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi9t1P9nf5NTNWngQrWASqxNVDBtN2Qt6bFeVMg46s5FVr6VgUiOYD5FKi_G7ZDcLQPCnpD2o4Fr5Vb-jgSBUEYjbuT7BOQrdGZrzdD14x3-pp-y6CUSOXNF0v6annXXBE1rvDAN7KtbFI/s320/Paige+and+mom.jpg" alt="" id="BLOGGER_PHOTO_ID_5675605627130370002" border="0" /></a><br /></div>ThePreemie Experimenthttp://www.blogger.com/profile/15882375368535807238noreply@blogger.com80tag:blogger.com,1999:blog-6205556462251851125.post-67718867641028346962011-10-26T10:17:00.002-05:002011-10-26T10:43:46.663-05:00Tears, tears and more tearsSince my last blog post a lot has changed in our lives, as it obviously should since I haven't blogged in 10 months. But one constant seems to be that I'm quite teary. It seems that every time I turn a corner something happens that makes me cry.<br /><br />Good tears and bad.<br /><br />Some people may not understand why the act of crying is a big deal to me, others will completely understand when I explain. See, for the past (almost) 13 years I've held my emotions tight. After my water broke (at 23 weeks) and Paige was born (at 25.5) weeks I learned that crying would do nobody any good. I learned to turn off the tears as soon as they would come to the surface. It was difficult at first but became easier as the years went on. I'm not emotionless by any means. I just don't really cry often.<br /><br />But there are the moments in life when something catches me so off guard that the tears start to flow before I can stop them. Sometimes I wonder if all the tears I should have been shedding over the years aren't stored up somewhere in my body. When the faucet gets turned on, 13 years of tears are trying to pour out.<br /><br />Now I can't seem to turn off the faucet. We've had some big changes over the past 10 months, been in some pretty emotion filled situations too. I am constantly fighting off tears. Even as I type this the tears are trying to come out.<br /><br />I'm hoping that by blogging again I can deal with some of these feelings head on.<br /><br />By the way... I've missed you all. Silly, I know. But it's true.ThePreemie Experimenthttp://www.blogger.com/profile/15882375368535807238noreply@blogger.com17tag:blogger.com,1999:blog-6205556462251851125.post-53850702137089316662011-01-11T22:24:00.000-05:002011-01-11T22:27:50.735-05:00Time Flies<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiRQSIvW46rQk3dU3Y7BxiRMycxLMR6iqdpqTkgLzYpnEdnG3gQpaX7xOoEipLaviJUW8KBbXU9wJodMxGrvPGv4NfCLfftJ-3LO8TcBtJZWke8esjFvL5zYRtdQNcunwbrstfY1zZ6hXc/s1600/Winter+2010-2011+004.JPG"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 240px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiRQSIvW46rQk3dU3Y7BxiRMycxLMR6iqdpqTkgLzYpnEdnG3gQpaX7xOoEipLaviJUW8KBbXU9wJodMxGrvPGv4NfCLfftJ-3LO8TcBtJZWke8esjFvL5zYRtdQNcunwbrstfY1zZ6hXc/s320/Winter+2010-2011+004.JPG" alt="" id="BLOGGER_PHOTO_ID_5561135821193725042" border="0" /></a>ThePreemie Experimenthttp://www.blogger.com/profile/15882375368535807238noreply@blogger.com24tag:blogger.com,1999:blog-6205556462251851125.post-46791714387743703372010-03-09T16:21:00.002-05:002010-03-09T16:24:24.786-05:00Research in the area of Prolonged or Chronic Pain in the Newborn<div style="font-family: times new roman,new york,times,serif; font-size: 12pt;"><div> <p class="MsoNormal"><span lang="EN-US">(Sending "thanks" out to Sheila for posting this information)<br /></span></p><p class="MsoNormal"><span lang="EN-US"><br /></span></p><p class="MsoNormal"><span lang="EN-US">Dear parents,</span></p><p class="MsoNormal"><br /><span lang="EN-US"></span></p> <p class="MsoNormal"><span lang="EN-US">I would like to invite you to take part in research concerning prolonged or chronic pain in the newborn. In the last decades much work has been done regarding acute and procedural pain. Prolonged or chronic pain still needs exploration. With the aid of your opinion and the Delphi method we aim at describing the concept of chronic pain in the newborn, including a definition and description of etiologic and diagnostic determinants.</span></p> <p class="MsoNormal"><span lang="EN-US"><span>You can find detailed information about the background and methodology on <a g647370a1="true" href="http://www.ceepain.org/" target="_blank">www.ceepain.org</a><div style="display: inline; cursor: pointer; padding-right: 16px; width: 16px; height: 16px;" c5c5790a3f5f0e7b8="ceepain.org"> </div>. Furthermore, on <a g647370a1="true" href="http://www.ceepain.org/" target="_blank">www.ceepain.org</a><div style="display: inline; cursor: pointer; padding-right: 16px; width: 16px; height: 16px;" c5c5790a3f5f0e7b8="ceepain.org"> </div> you can participate in the first of our three-round Delphi survey. In this first round you will be asked to answer three short, open-ended questions.</span></span></p> <p class="MsoNormal"><span lang="EN-US"><br /></span></p> <p class="MsoNormal"><span lang="EN-US"> </span></p> <p class="MsoNormal"><span lang="EN-US">With kind regards,</span></p> <p class="MsoNormal"><span lang="EN-US"> </span></p> <p>Christ-jan van Ganzewinkel</p> <p>Neonatal Nurse Practitioner</p> <p><span lang="EN-US">Department of Neonatology</span></p> <p><span lang="EN-US">Máxima Medical Centre</span></p> <p><span lang="EN-US">Veldhoven, The Netherlands </span></p> </div> </div>ThePreemie Experimenthttp://www.blogger.com/profile/15882375368535807238noreply@blogger.com14tag:blogger.com,1999:blog-6205556462251851125.post-83325917047096379622010-02-14T10:45:00.009-05:002010-02-14T11:18:19.945-05:00And The Winner Is...Thank you to all who entered, blogged about <a style="color: rgb(204, 0, 0); font-style: italic; font-weight: bold;" href="http://team-spectacular.com/?page_id=456">the book</a> and stopped by <a style="color: rgb(204, 0, 0); font-style: italic; font-weight: bold;" href="http://team-spectacular.com/">Team Spectacular</a> to check out the wonderful work of Scott Wright. I want to thank Scott for not only writing/illustrating a truthful book about life in the NICU but also for providing a copy for our giveaway.<br /><br />And now what you all have been waiting for...<br /><br /><br /><br /><div style="text-align: center;"><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgHC8HvsB7h13zIHxnfcXSq1i-pEv_MIDVfDcuXSW5QaQ_iUL4Z1kWYSzW98HlrTCprRbCb-EfKh0S8dRCBnxe-5QnEeSYbW71-R48au40JcAx8tE5NqlzumgKDobIzh5vZ8G7_hW4dlAA/s1600-h/100_4057.jpg"><img style="margin: 0px auto 10px; display: block; text-align: center; cursor: pointer; width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgHC8HvsB7h13zIHxnfcXSq1i-pEv_MIDVfDcuXSW5QaQ_iUL4Z1kWYSzW98HlrTCprRbCb-EfKh0S8dRCBnxe-5QnEeSYbW71-R48au40JcAx8tE5NqlzumgKDobIzh5vZ8G7_hW4dlAA/s320/100_4057.jpg" alt="" id="BLOGGER_PHOTO_ID_5438126696677536242" border="0" /></a>Paige put all of the entries (49 numbered squares) into the tub that was used to give her a bath in the NICU.<br /><br /></div><br /><br /><div style="text-align: center;"><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgeZ13dX_kNaieOnRr0RFNYTZof2j5DWZRpxmWww_28Br7VdSlE8DOUCPQrwRJv5jBGjP8i52xWB3pNePMPQo9u7ykjXke_jLNpzLaVkMoT16CoqNVqCG54FQ7pcJJTyV8f6c97D1uOFSc/s1600-h/100_4059.jpg"><img style="margin: 0px auto 10px; display: block; text-align: center; cursor: pointer; width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgeZ13dX_kNaieOnRr0RFNYTZof2j5DWZRpxmWww_28Br7VdSlE8DOUCPQrwRJv5jBGjP8i52xWB3pNePMPQo9u7ykjXke_jLNpzLaVkMoT16CoqNVqCG54FQ7pcJJTyV8f6c97D1uOFSc/s320/100_4059.jpg" alt="" id="BLOGGER_PHOTO_ID_5438126954643762626" border="0" /></a>She mixed them up,<br /><br /></div><br /><br /><br /><div style="text-align: center;"><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhHHGm7sO7xdxAAInTxIsrY2Cbz-Wh3LI_psqIOyOEeXbTW3dOqOWNx7QihI0iX0UDE1rir78bMFF8LtuIG-hTZxGywpl-o2VL6oF3EMV1Gy6xLTc7dFT4PGrUAoTznwxoDk8naklfDeso/s1600-h/100_4060.jpg"><img style="margin: 0px auto 10px; display: block; text-align: center; cursor: pointer; width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhHHGm7sO7xdxAAInTxIsrY2Cbz-Wh3LI_psqIOyOEeXbTW3dOqOWNx7QihI0iX0UDE1rir78bMFF8LtuIG-hTZxGywpl-o2VL6oF3EMV1Gy6xLTc7dFT4PGrUAoTznwxoDk8naklfDeso/s320/100_4060.jpg" alt="" id="BLOGGER_PHOTO_ID_5438127206202834866" border="0" /></a>gave them a good shake,<br /><br /></div><br /><br /><div style="text-align: center;"><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhJBX1H_mIcISgb_t8BEHt-uG954qG8mbqD4paHZRoLc7f-MSPQPcVFW0G1zoFyg6B3zIrONZ9CeqafKwzDTWG1V4ERrD5Dlfe90c5CMfM_PuraZyzdgl353tcDmdTUIcyJQtNCLM3pRVQ/s1600-h/100_4061.jpg"><img style="margin: 0px auto 10px; display: block; text-align: center; cursor: pointer; width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhJBX1H_mIcISgb_t8BEHt-uG954qG8mbqD4paHZRoLc7f-MSPQPcVFW0G1zoFyg6B3zIrONZ9CeqafKwzDTWG1V4ERrD5Dlfe90c5CMfM_PuraZyzdgl353tcDmdTUIcyJQtNCLM3pRVQ/s320/100_4061.jpg" alt="" id="BLOGGER_PHOTO_ID_5438127547694409218" border="0" /></a>and picked one lucky entry...<br /><br /></div><br /><br /><div style="text-align: center;"><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjszS8j_LSmdeyCv1NbKwuBtGh-Hn-UD7tEFS-Zec1oFJc7B6gLJwMAwYvOyRc8CB5yEL5jSPr4JQq4wLYXyFyumtxxH1S_Q0ocQ3voP1xNQmFQxSCluO0gufakYW75xDtD-atQ32VCbko/s1600-h/100_4062.jpg"><img style="margin: 0px auto 10px; display: block; text-align: center; cursor: pointer; width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjszS8j_LSmdeyCv1NbKwuBtGh-Hn-UD7tEFS-Zec1oFJc7B6gLJwMAwYvOyRc8CB5yEL5jSPr4JQq4wLYXyFyumtxxH1S_Q0ocQ3voP1xNQmFQxSCluO0gufakYW75xDtD-atQ32VCbko/s320/100_4062.jpg" alt="" id="BLOGGER_PHOTO_ID_5438127910758822514" border="0" /></a>and the winner is...<br /><br /></div><br /><br /><br /><div style="text-align: center;"><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhGpBa6zbGUV92IK2gEIm-G61tyYr4j5sg1-Pv-6PiXZa6FTKj1Py4HXN7EgvYt5snk08MDWyEaIu6N7ayUPfAs-8pXLuCVZ_EQzYWsMlesI9NG3NDbVem6Q7hnkG9DNlueQQZhNUqHwHo/s1600-h/100_4063.jpg"><img style="margin: 0px auto 10px; display: block; text-align: center; cursor: pointer; width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhGpBa6zbGUV92IK2gEIm-G61tyYr4j5sg1-Pv-6PiXZa6FTKj1Py4HXN7EgvYt5snk08MDWyEaIu6N7ayUPfAs-8pXLuCVZ_EQzYWsMlesI9NG3NDbVem6Q7hnkG9DNlueQQZhNUqHwHo/s320/100_4063.jpg" alt="" id="BLOGGER_PHOTO_ID_5438128233425177474" border="0" /></a>#35<br /></div><br /><br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgooE0-Kvy7_TXUuC_hOSXMdXwpXLM6UCo1kdxQzmGtZo3QswLZQ-chU6wASNRr-BQQXDOIAAmHxvB302057IG8MvY_BFgZo7co52pMYHI55oCy_YLCqW-msVjg-VhTnBkA9oRY6lBFDKM/s1600-h/100_4065.jpg"><img style="margin: 0px auto 10px; display: block; text-align: center; cursor: pointer; width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgooE0-Kvy7_TXUuC_hOSXMdXwpXLM6UCo1kdxQzmGtZo3QswLZQ-chU6wASNRr-BQQXDOIAAmHxvB302057IG8MvY_BFgZo7co52pMYHI55oCy_YLCqW-msVjg-VhTnBkA9oRY6lBFDKM/s320/100_4065.jpg" alt="" id="BLOGGER_PHOTO_ID_5438128419929822114" border="0" /></a><br />Congratulations to tbonegrl! Please email me @ thepreemieexperiment@gmail.com with your address.<br /><br />Once again, thank you all for supporting Scott with your kind words both here and on your own blogs. After you purchase a copy be sure to stop back here and let us know what you thought!ThePreemie Experimenthttp://www.blogger.com/profile/15882375368535807238noreply@blogger.com11tag:blogger.com,1999:blog-6205556462251851125.post-78433965286599731902010-02-07T11:05:00.008-05:002010-02-07T13:05:47.096-05:00Let The Giveaway Begin!!I am quite excited to be a part of this giveaway. I swore I would never do this on my blog but that all changed the day I saw an on line page from this comic book.<br /><br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://team-spectacular.com/wp-content/uploads/2009/10/l_1600_1200_02AC1722-D614-4E99-B827-B402B4968646.jpeg"><img style="margin: 0px auto 10px; display: block; text-align: center; cursor: pointer; width: 640px; height: 480px;" src="http://team-spectacular.com/wp-content/uploads/2009/10/l_1600_1200_02AC1722-D614-4E99-B827-B402B4968646.jpeg" alt="" border="0" /></a><br /><a style="font-style: italic; font-weight: bold; color: rgb(204, 0, 0);" href="http://team-spectacular.com/?page_id=456">Micro-Preemie Power</a>, by Scott Wright, is a comic book journaling the NICU experience of Scott and Jodi Wright as they find themselves unexpectedly giving birth to a micro preemie. Their son, Morgan, was born 3 1/2 months premature weighing in at 1 pound 8 ounces.<br /><br />Scott writes...<br /><br /><span style="font-style: italic;"></span><blockquote><span style="font-style: italic;">During these dark days I was completely barraged with questions from friends and co-workers. They asked, "How are you? How's Morgan? How's your wife?" I could never tell them the truth. It's not that I didn't want to. It just hurt too much to say, "My son is in the hospital and he may not make it through the day."</span> <span style="font-style: italic;"><br /><br />What I found myself doing after Morgan was born turned out to be an art journal. Everything I couldn't say to my peers began finding its way into my comic strip. I found it therapeutic. No matter what happened to him I wanted people to know his story. I knew that I loved that little guy and I would do anything to protect him. It made me realize I was a superhero just like all the other parents in the world."</span></blockquote><br /><br />I was first introduced to the on line comic strip, a year and a half ago, thanks to my "micropreemie" Google alert. I was hooked on the first one I <a style="color: rgb(204, 0, 0); font-weight: bold; font-style: italic;" href="http://team-spectacular.com/?p=385">read</a>. I sat there, crying, reading the previous entries and then went back to the first one I had read and left a comment explaining that I would gladly promote it on my blog if he decided to turn the strip into a book. So, imagine my joy when I received an email, a year and a half later, from Scott letting me know that he would like to send me a copy of his book!<br /><br />The day my mailbox surprise arrived Paige and I were leaving to go to her 3 month med management psych appointment. I decided that I would read the book while we were in the waiting room. The anticipation got the best of me and I opened the book while stopped at a light. Page 1... tears. Page 2... tears. I knew right then that I would be reading this book after the kids went to bed.<br /><br />I could focus on the illustrations... yes, the illustrations are wonderful, but what makes this book extra special is that it is written through the eyes of a father. At the bottom of the strip, on each page, Scott and Jodi write personal notes. Through these notes you can clearly see the difference in which each parent is experiencing the NICU trauma.<br /><br />And don't be fooled. Although this is a comic book, the content is NOT sugar coated. Inside you'll read about the alarms, needle sticks, not having enough time to research what is being done to your child, leaving your child in the hospital, family, the emotional highs and lows and even death.<br /><br />I applaud Scott for giving the world a REAL view from the "inside" and not a fluffy-feel good depiction. Even the ending has yet another topic that is often dealt with among preemie parents.<br /><br />Now for the fun... Scott has graciously agreed to give away 1 book to a lucky reader.<br /><br />Here are the rules...<br /><br />1. The giveaway begins today, February 7, 2010 and ends midnight (eastern standard time) February 13, 2010. The winner will be announced some time during the day on February 14, 2010.<br /><br />2. ONLY ONE ENTRY PER HOUSEHOLD. You can enter by leaving a comment under this post. Do NOT post your address (you will be asked to <a style="font-weight: bold; font-style: italic; color: rgb(204, 51, 204);" href="http://www.blogger.com/thepreemieexperiment@gmail.com">email</a> it to me if you win). If you enter anonymously please leave your name in your comment as a way of identifying you. You MUST at least leave your first name.<br /><br />3. If you have a blog and you write a post directing people to this giveaway, I will add a 2nd entry in under your blog name! (please <a style="font-weight: bold; font-style: italic; color: rgb(204, 51, 204);" href="http://www.blogger.com/thepreemieexperiment@gmail.com">email</a> me with the link to your blog post) This will double your chances of winning. (You will only get 1 extra entry, no matter how many blog posts you devote to the giveaway-let's be fair people) Your blog post MUST include a link to both <a style="font-weight: bold; font-style: italic; color: rgb(255, 0, 0);" href="http://thepreemieexperiment.blogspot.com/">my blog</a> post and a link to Team Spectacular's on line <a style="font-style: italic; color: rgb(255, 0, 0); font-weight: bold;" href="http://team-spectacular.com/?page_id=456">store</a>, where people can buy the book.<br /><br />4. At the conclusion of the giveaway, I will either have Paige pull a name out of a hat or, if there are too many entries, I will use a site that will randomly choose a winner. I will post the name of the winner on my blog. You will have 48 hours to email me with your address.<br /><br />And since I'm sure I will be asked (my readers have never held back)... I do NOT have any financial gain from this giveaway or any subsequent sales of the book. I am doing this because I truly feel that this is one of the best books out there that gives a honest glimpse of what we have all been through. My hope is that this book finds its way into the hands of the general public so that the face of prematurity is no longer misrepresented.<br /><br />Speaking of sales... Let's remember that this book is written by one of us, a preemie parent. What better way to show our support than to head on over to Team Spectacular's <a style="font-weight: bold; font-style: italic; color: rgb(204, 0, 0);" href="http://team-spectacular.com/?page_id=456">store</a> and purchase a copy for yourself. You won't be disappointed.<br /><br />Many times we have discussed how friends and family do not really understand what we've been through. Here's your chance to show them... buy a copy for them too.<br /><br />My apologies to Scott. No matter what I do I simply cannot get the photo of your book to fit correctly in this post.<br /><br /><span style="color: rgb(51, 51, 255); font-weight: bold;">Let the giveaway begin!!!!</span>ThePreemie Experimenthttp://www.blogger.com/profile/15882375368535807238noreply@blogger.com53tag:blogger.com,1999:blog-6205556462251851125.post-63648412771143835022010-01-24T10:29:00.002-05:002010-01-24T10:39:58.844-05:00Fun Stuff On The Way!I'm still trying to work out the details but in the very near future I will be filling everyone in about my mailbox surprise and holding a raffle of sorts so you can have one of your own.ThePreemie Experimenthttp://www.blogger.com/profile/15882375368535807238noreply@blogger.com7tag:blogger.com,1999:blog-6205556462251851125.post-53892482774775161662010-01-16T09:04:00.003-05:002010-01-26T16:57:33.022-05:00Pregnant Woman Fights Court Ordered Bed Rest***Helen added a <a style="font-weight: bold; font-style: italic; color: rgb(255, 0, 0);" href="http://www.msnbc.msn.com/id/35076853/ns/health-pregnancy/">link</a> in the comments which I am posting here. It is a later article written about the case and goes into much more detail.***<br /><br /><br />http://abcnews.go.com/Health/florida-court-orders-pregnant-woman-bed-rest-medical/story?id=9561460&page=1<br /><br />I first saw this story on a support group but have since seen it popping up all over the internet. I found it to be quite appropriate for discussion here since there have been many times when comments have been posted about how we should treat women/pregnancies where prematurity (or the threat of prematurity) is involved...<br /><br />Personally I do NOT agree with what was done to this woman and reading the article brought back horrible memories of when I was admitted to the hospital 11 years ago. My husband and I were sat down and told that once I entered into the hospital at 23.2 weeks (it was the 2nd hospital that I was taken to. The first hospital didn't have a level 3 NICU) that the health of our baby took precedence over everything else and I would not be allowed to leave until I delivered our child. I wasn't even allowed to leave my room unless accompanied by a nurse. I had to beg the doctor to allow my husband to push me outside to get some fresh air and that was only allowed once (after 2 weeks of being in one room). Even though I felt trapped (overwhelmed, scared, angry, sad, depressed, etc) I was willing to stay. But I can't even imagine what it would be like had I really wanted to leave and was legally stopped from doing so.ThePreemie Experimenthttp://www.blogger.com/profile/15882375368535807238noreply@blogger.com27tag:blogger.com,1999:blog-6205556462251851125.post-75850977981898462992010-01-13T15:33:00.001-05:002010-01-13T15:36:51.167-05:00It Came! It Came!!I received the most exciting thing in the mail today and it's not even my birthday.<br /><br />Stay tuned...ThePreemie Experimenthttp://www.blogger.com/profile/15882375368535807238noreply@blogger.com8tag:blogger.com,1999:blog-6205556462251851125.post-44232667466232674502010-01-03T10:09:00.002-05:002010-01-03T11:30:28.687-05:00Should the Cost of Saving a Preemie...Should the cost of saving a preemie dictate the minimum gestation that a preemie can be resuscitated?<br /><br />This is such an emotionally charged topic but one that I find very interesting when you take your own personal situation out of your emotions and try to look at it from every angle.<br /><br />An <a style="font-weight: bold; font-style: italic; color: rgb(204, 0, 0);" href="http://www.politicsdaily.com/2010/01/02/preemies-health-care-reform-and-the-cost-benefit-conundrum/">article</a> in <a href="http://www.politicsdaily.com/">Politics Daily</a>, written by Joann M. Weiner, brings up this subject (in relation to health care reform).<br /><br />In her <a style="font-weight: bold; font-style: italic; color: rgb(204, 0, 0);" href="http://www.politicsdaily.com/2010/01/02/preemies-health-care-reform-and-the-cost-benefit-conundrum/">article </a>she writes (of an article in the New York Times)...<br /><br /><div style="text-align: left;"><span style="font-style: italic;"></span><blockquote><span style="font-style: italic;">Writing in </span><em style="font-style: italic;">The New York Times</em><span style="font-style: italic;">, Jane Brody told a very </span><a style="font-style: italic;" href="http://www.nytimes.com/2009/12/22/health/22brod.html?_r=1&ref=health">compassionate story</a><span style="font-style: italic;"> of an 11-year-old girl who was born after just 25 weeks gestation, weighing only 13.5 ounces, but who is now, amazingly, an accomplished writer and illustrator. Brody did not cite the costs of the child's neonatal intensive care, other than to say that the infant spent the first five months of her life in a Falls Church, Va., hospital. (It is difficult to find data on such costs; one hospital in </span><a style="font-style: italic;" href="http://www.projo.com/extra/2008/preemies/stories/part_four/story4_a.html">Rhode Island</a> estimated the daily expense at around $2,000, which means that a five-month stay would cost upwards of $300,000.) The <em style="font-style: italic;">Times </em><span style="font-style: italic;">article concludes with a comment by Dr. Michele Walsh, a neonatologist in Cleveland, who says that although it is expensive to maintain "million-dollar babies," it becomes very cost-effective over time: "There is a return on investment when they get out into the work force and pay taxes."</span><br /></blockquote></div><br />That last sentence... that's where I'm stuck. Really stuck. <br /><br />First off... the cost of raising a preemie can be far more costly than the NICU bill. I know of families who have hit their life time insurance cap before their child was 5. That would have been us had my husband not changed jobs (a job change made necessary because of our insurance issues). Preemies, post NICU, have years worth of specialist visits, therapies, tests, labs, equipment, hospital stays, shots (shall we discuss how expensive RSV injections are), mental health specialists (which is not well covered by insurance and largely paid for by parents) and medications.<br /><br />Paige is now 11 (born at 25.5 weeks weighing 1 lb 12 oz). I cannot even begin to estimate that cost for our situation but I can tell you that it has exceeded the cost of her NICU bill. For many years she never went a week without seeing a specialist or therapist. After age 5 the weeks turned into months but she still never went more than a few months without having something jabbed into her to run some test. This went on for many years. So, when looking at the cost of prematurity on society, let's not stop adding it all up when they leave the NICU.<br /><br /><span style="font-style: italic;font-size:85%;" >(On a side note... On New Years Eve I was sitting at my computer trying to think of something witty to write as my status update on Facebook when it hit me... Paige had not seen any medical specialists in 2009. None. I couldn't believe it. I got up from my computer and combed through the calendar... She saw her pediatrician once (regular kid stuff), had her teeth cleaned twice (regular kid stuff) and had both flu vaccinations (regular kid stuff). That's it. Oh boy did I ever cry. My poor child had endured 11 years worth of appointments (labs, visits, tests, etc) and finally had a break. Although she still has regular appointments with various mental health specialists... there were no medical doctors in her life for an entire year. I know it won't last (as puberty can bring back some of the issues that have subsided) but it was worth celebrating.</span>)<br /><br />Secondly, what about all of the preemies who will never work? Since the above quoted neonatologist can justify the dollars spent as an investment... where is the return on the investment then? <br /><br />And to answer my own question... the cost of saving a preemie has never been a deciding factor to me when discussing resuscitation limits based on gestation. But I've been left with a few questions rattling around in my brain now that deserve further consideration.<br /><br />(I'm going to open up the comments to allow anonymous comments)ThePreemie Experimenthttp://www.blogger.com/profile/15882375368535807238noreply@blogger.com38tag:blogger.com,1999:blog-6205556462251851125.post-16430362376928331592009-12-10T21:24:00.003-05:002009-12-10T22:52:51.500-05:00Looooong Overdue UpdateI'm not even sure where to begin or if I'll include a full update. Let's just start and see where it takes us...<br /><br />I think I'll start by talking about homeschooling. It has turned out to be the best thing we've ever done for Paige. If I would have tried to write about it the first year we started, this post would have a completely different feel. It took some time to figure out what homeschooling style was right for the both of us. But, here we are in year 2 of homeschooling and Paige is a completely different child.<br /><br />To back up a bit... Paige was in public school from age 3 (special ed preschool) through 3rd grade. Intellectually she has never had a problem keeping up. As a matter of fact all of the testing showed that she was consistently scoring a few years ahead in math and at the end of 3rd grade she tested to be at a high school level reading. Socially, though, she was crumbling. Not only does she suffer from OCD and anxiety issues, she is a literal child who is extremely gullible. She was still tattling and never seemed to understand why kids didn't want to be around her. She is such an outspoken child and had no problems speaking up when she felt wronged-something that is not cherished in public schools. Then there is the fact that we are atheists living in the bible belt. When she found out that "under god" was not part of the original pledge (something that she found out on her own) she refused to say it and would stand her ground when questioned. Top all of that with the fact that she was the reason why her class never won perfect attendance (thanks to all of the doctors visits relating to her ongoing health issues) thus giving the kids yet another reason to tease her. She would be in tears virtually every day when I picked her up from school. She felt trapped and I didn't blame her. By the end of 3rd grade the decision to homeschool her came quite easily.<br /><br />So here we are, year 2 of homeschooling and Paige is thriving medically. She has gained 15 pounds and approx. 4 inches in just over 18 months! My little Paige, who was always under the 5th percentile on the growth charts is 75 pounds at age 11!!! She is rarely sick and her OCD is under control (I'll talk more about it later).<br /><br />Academically she is still quite advanced in reading and language arts. She loves science and can talk your ear off about history. But, as is the case within the preemie community, she is showing strong difficulties in math. Over the years I had heard other preemie parents talk about how their child was on target in math until they hit 4th grade and this seems to be the case with Paige as well. She is in the "5th grade" but still working on 4th grade math. This is one of the many benefits of homeschooling.<br /><br />Socially she still struggles. We are starting to feel that she always will. Last year she was in a play, in our local theater, where she played a townsperson. She came alive! She is super animated which came in handy for this years production... Seussical the Musical. She was cast as one of the Whos. She had a blast but still didn't really make any friends. She often makes comments like, "I don't know why no one likes me." Thankfully she has a good friend that live across the street. Their friendship is so important to Paige.<br /><br />I'm often asked if we'll send her back to school. As of now, the answer would be a strong "no". I am not anti public school. It just wasn't right for Paige. Tyler, on the other hand, can't wait to go. He just wants to ride the bus (what else do 3 year old boys like-lol). I'm not sure what we'll do when he turns 5. He is quite the technology smarty pants for his age. He loves the computer and even has his own homepage, which he can sign into himself. He knows how to get to his bookmarks and knows which games are on what site. He has started to read, can spell his name but can't write it yet. He can count and even do simple addition. He loves to sit near his sister while she is doing school and has picked up so much from their interactions. I'm fearful that he will be bored in school. If he hasn't outgrown his life threatening peanut/tree nut allergy then we probably won't send him to public school.<br /><br />I am quite passionate about homeschooling so if anyone has any questions, please feel free to ask. While I realize that it isn't right for everyone, it has changed Paige's life for the better.<br /><br />Medically Paige is doing wonderful. I can't even remember the last time we've seen a specialist. I know she is not out of the woods. Puberty has started and we are watching her like a hawk for signs that her seizures have returned. Since she has gained in both weight and height, we've been cleared by endocrinology. She does still have issues with constipation but now that I'm the one controlling what she eats (and not relying on cafeteria food), it's a lot better. Her headaches have all but disappeared. We have changed pediatricians and finally found someone that took her oral health seriously. Paige has holes in her teeth from acid reflux but since her PH probe was normal, her previous docs ignored the problem. Our new doc was appalled and immediately put Paige on reflux meds which is also helping her stomach aches.<br /><br />As for her mental health... she is doing so much better. When I look back and re-read old posts I can still feel the pain we were experiencing because her OCD was so hard to control. She is still on 2 meds for OCD and anxiety but now that she is no longer in school the meds are able to help her keep her stress level under control. When new stress is added to her life (like acting) her mental health issues become harder to manage. But, instead of removing the stress, she is able to face it head on and cope quite well. She no longer picks her skin on a regular basis but it is something that she has to work hard on.<br /><br />As for me... well that's a different story. Now that the majority of the stress (related to Paige's medical/mental health issues) has diminished, I seem to be having a harder time coping. I think the stress was keeping me going. Boy that sounds funny as I'm re-reading it. But I don't have any other way to account for these feelings. PTSD?? I find myself waiting for the other shoe to drop and can't seem to shake that feeling.<br /><br />Although homeschooling was the best thing for Paige, it ended up altering life in a way that I was not prepared for. My friends had always been the other moms and we got together during school hours. That all is gone now. As I mentioned above, we are atheists living in the bible belt. I have not found a local homeschool group that will allow us to join so I tend to feel a little left out of the world. I'm not completely without friends but it has definitely changed. I still feel strongly that it was the best thing we could have done for Paige and I stand by my decision. I honestly would do it all over again. I just wish people weren't so closed minded so we could share in the homeschool experience with other local families.<br /><br />So, that's about where we are... in a holding pattern... enjoying life without all of the stress we used to have but keeping both eyes open.<br /><br /><div style="text-align: center;"><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh4-HuINTlrxnBc9_14Z_yIodR4GWf8N0fssDHOK7amD_6CWB19AElRtcOjv8Td1tPY1GwimtoMzSt3qT51MRKRR5p6kOagZTYYRLaWU2fim3URsEzhQVtc_rbhsUxjJibTkTB2yxSn4E4/s1600-h/100_3871.jpg"><img style="margin: 0px auto 10px; display: block; text-align: center; cursor: pointer; width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh4-HuINTlrxnBc9_14Z_yIodR4GWf8N0fssDHOK7amD_6CWB19AElRtcOjv8Td1tPY1GwimtoMzSt3qT51MRKRR5p6kOagZTYYRLaWU2fim3URsEzhQVtc_rbhsUxjJibTkTB2yxSn4E4/s320/100_3871.jpg" alt="" id="BLOGGER_PHOTO_ID_5413820287617602706" border="0" /></a><br />Visiting with Santa<br /><br /><br /></div>ThePreemie Experimenthttp://www.blogger.com/profile/15882375368535807238noreply@blogger.com18tag:blogger.com,1999:blog-6205556462251851125.post-41736414337798519892009-10-01T13:08:00.002-05:002009-10-01T13:23:22.772-05:00Viability-Through the Eyes of a NICU Nurse(an update about us will be coming soon... I promise)<br /><br />The following post was written by a NICU nurse, who blogs anonymously at <a style="font-weight: bold; font-style: italic; color: rgb(255, 0, 0);" href="http://realityrounds.com/">Reality Rounds</a>.<br /><br /><h2><a href="http://realityrounds.com/2009/09/15/is-letting-a-21-week-premature-baby-die-considered-health-care-rationing/" rel="bookmark" title="Permanent Link to Is Letting a 21 Week Premature Baby Die, Considered Health Care Rationing?"></a></h2><blockquote><h2><a href="http://realityrounds.com/2009/09/15/is-letting-a-21-week-premature-baby-die-considered-health-care-rationing/" rel="bookmark" title="Permanent Link to Is Letting a 21 Week Premature Baby Die, Considered Health Care Rationing?">Is Letting a 21 Week Premature Baby Die, Considered Health Care Rationing?</a></h2> <p class="date">Posted by <a href="http://realityrounds.com/">realityrounds</a> on September 15, 2009</p> <p>No, it is not. Let me explain. There is an inflammatory article published in the <a href="http://www.dailymail.co.uk/news/article-1211950/Premature-baby-left-die-doctors-mother-gives-birth-just-days-22-week-care-limit.html">UK Mail Online</a>; Ms. Capewell, a 23 year old mom is claiming English doctors let her 21 5/7 week infant die only because they were following national perinatal guidelines. If only he was born at 22 weeks, she insists, they would have tried everything to save him and admitted him to the Neonatal Intensive Care Unit (NICU). Ms. Capewell, who has had five miscarriages, said the guidelines had robbed her son of a chance of life. She said: “When he was born, he put out his arms and legs and pushed himself over.” The article mentions the 2006 case in the United States were a 21 6/7 week infant, Amillia Taylor, survived after doctors mistakenly resuscitated her, thinking she was actually 22 6/7 weeks gestation. The infant is now two years old and living with her family in Florida. Ms. Capewell states, ‘Thousands of women have experienced this. The doctors say the babies won’t survive but how do they know if they are not giving them a chance?” Following her experience, Ms. Capewell has set up a web page <a href="http://justice4jayden.webs.com/">Justice for Jayden</a> urging a change in the British legislation:</p> <p><img class="aligncenter size-medium wp-image-2825" title="article-1211950-0655C917000005DC-243_468x400" src="http://realityrounds.files.wordpress.com/2009/09/article-1211950-0655c917000005dc-243_468x400.jpg?w=300&h=256" alt="article-1211950-0655C917000005DC-243_468x400" height="256" width="300" />The website states:</p> <p><strong><em>I had a little baby boy called Jayden on 3rd of October 2008. Sadly I had gone into labour too soon and he was born just halfway through my pregnancy. When I went into labour I was told he would be born dead, disabled and his skin would most likely be peeling off, in actual fact he was perfect. As you can see from his pic he was born alive, he was responsive and lived without help for nearly 2 hours. ReguardleJss of this doctors refused to come and see him let alone consider helping him. This is down to government legislation stating that babies born before 22 weeks are not viable and are not to be helped. Now I’m asking for your help in changing legislation so other families don’t have to suffer unnessisarily.</em></strong></p> <p>My heart goes out to this mom who lost her infant and suffered multiple miscarriages. I can’t imagine the pain she must have felt when she lost her child. As a NICU nurse I must disagree with her on her assumptions of care for an infant born with such extreme prematurity. The doctors were just in their actions. It would have been an extreme <strong>injustice </strong>to Jayden to attempt to resuscitate one so premature. There is a term in medical ethics called <strong>Benevolent Injustice</strong>. Below is an abstract of an article written by Brenda Barnum, BSN, RN, for <a href="http://journals.lww.com/advancesinneonatalcare/Abstract/2009/06000/Benevolent_Injustice__A_Neonatal_Dilemma.10.aspx">Advances in Neonatal Care</a>, that talks about this concept:</p> <p style="text-align: center;"><span style="color: rgb(0, 0, 255);">There is a little-recognized cohort of NICU patients whose outcomes are the result of a benevolent injustice in their healthcare course. Many of these infants are saved by technology; however, they are left both medically fragile and medically dependent, and many of them are required to live in a medical facility. Many of these babies never get to go home with their parents. This emerging cohort of patients may evolve from the difficult ability to prognosticate outcomes for neonates, overtreatment, and acquiescing to parental demands for continued aggressive care. Neonatology is an unpredictable process and one that is never intended to harm, but carries with it the potential of devastating consequences, thus creating a benevolent injustice.</span></p> <p>From reading the UK Mail Online article, and more importantly reading the over 600 comments on this topic, it has made me painfully aware of the ignorance, naivete, and anger the public perception is of caring for infant’s at the edge of viability. Nowhere in the world, including the United States( which arguably had the most advanced technologies when it comes to NICU care), is it routine to resuscitate infants below 23 weeks gestation. In the United States, guidelines for initiating resuscitation vary from 23-24 weeks, and 450 to 500 grams. These guidelines vary by state. Contrary to what Ms. Capewells web page states, it is not “government legislation” that dictates whether an infant born before 22 (really 23 weeks) will be resuscitated and admitted to the NICU. It is the physicians and staff at the delivery. If we are called to a delivery for unsure dates between 22-23 weeks, (the NICU team does not attend deliveries between 21-22 weeks) we first counsel the mom on what will happen and give her as much information as possible, regarding outcomes and survivability. Her choices are to do nothing and provide only comfort care, to start resuscitation until the baby “declares” himself, either by improving or decompensating, or request a full blown resuscitation. The physician’s at the delivery will assess the infant and it is ethically and legally appropriate to withhold or stop a resuscitation on such an extremely premature infant based on how the infant presents himself.</p> <p>Infants born at 22-23 weeks gestation have a 1-10% chance of survival, with the high end requiring the most advanced NICU care possible. Of those survivors, greater than 95% will suffer profound neurodevelopmental impairment <a href="http://www.nichd.nih.gov/about/org/cdbpm/pp/prog_epbo/epbo_case.cfm">NICHD/NIH</a>. By profound neurodevelopmental impairment, I do not mean the child will have a learning disability, or need to walk with canes, or have mild cerebral palsy. I mean the child may suffer from intractable seizures, need a feeding tube because of being unable to swallow, have varying degrees of blindness and deafness, have spastic quadraplegia and be wheelchair bound, never speak, never crawl, never walk, never run, etc.</p> <p>I have cared for many infants at the edge of viability. It is always emotionally draining. There is no justice to it. The extreme measures involved to keep a 22-23 week infant alive is staggering, and it is ugly. I once had a patient who had an IV placed on the side of her knee due to such poor IV access. When that IV infiltrated, I gently pulled the catheter out, and her entire skin and musculature surrounding the knee came with it, leaving the patella bone exposed. I have seen micro-preemies lose their entire ear due to scalp vein IV’s. I have watched 500 gram infants suffer from pulmonary hemorrhages, literally drowning in their own blood. I have seen their tiny bellies become severely distended and turn black before my very eyes, as their intestines necrose and die off. I have seen their fontanelles bulge and their vital signs plummet as the ventricles surrounding their brains fill with blood. I have seen their skin fall off. I have seen them become overwhelmingly septic as we pump them with high powered antibiotics that threatened to shut down their kidneys, while fighting the infection. I have seen many more extremely premature infants die painful deaths in the NICU, then live.</p> <p>Ms. Capewell claims her 21 6/7 week preemie was able to “push himself over,” and was “born perfect.” An infant born this prematurely does not have the musculature to expand their chest wall in order to breathe, let alone “push” themselves over. Jayden may have been “born perfect” for a fetus, not for a viable neonate. His eyes were still fused and his skin was gelatonous. He was born too early. We do not have the technologies to save an infant as young as Jayden. Trying to save him would be an experiment in futility. An experiment on an actual human life.</p> <p>What really struck me most in the UK Mail Online story, was the comments left by readers. Many of them were Americans. They tried to twist this story as a fight against health care reform and that not saving a 21 weeker was rationing care. I will not go into politics here. I will say that comparing not saving a 21 week fetus to rationing health care is a ludicrous argument. It has nothing to do with trying to save money. It has everything to do with humanity, and morality, and justice.</p> <p>RR</p><p>**********</p></blockquote><p></p>And, as expected, the author received nasty comments, which prompted <a style="font-weight: bold; font-style: italic; color: rgb(255, 0, 0);" href="http://realityrounds.com/2009/09/17/nicu-nurses-are-baby-killers/">this post</a>.<br /><br /><p></p><blockquote><p>I wrote a controversial post about resuscitating infants at the edge of <a href="http://realityrounds.com/2009/09/15/is-letting-a-21-week-premature-baby-die-considered-health-care-rationing/">viability</a>……and now, I am paying the price for it. Being a NICU nurse is hard. You could probably tell from many of my posts that caring for infants, especially those with unknown outcomes and prognoses, can be an ethically and emotionally draining experience.</p> <p>I love my job. I love saving the lives of neonates. I love the skill it takes to care for the most critical of patients. I love being a part of groundbreaking treatments that impact the lives of infants. I love nurturing the tiniest of human lives to slowly grow and blossom and thrive due to my expert care and touch.</p> <p>Yet to those who do not know, who can not possibly understand, I am nothing but a baby killer.</p> <p>Because I, with my many years of experience caring for the extremely premature, do not believe that extraordinary measures should be taken to resuscitate infant’s below 23 weeks gestation, I am labeled a heartless baby killer by the anonymous punditry of the internet bloggers.</p> <p>It is disheartening to think that there are people out there who believe NICU nurses ,who do not advocate that every premature baby be resuscitated no matter the gestational age, are inhumane, insensitive bureaucrats who only think about the reimbursement of a bed space.</p> <p>For us NICU nurses on the ground, this is a disgusting load of crap to have to hear. Below are some comments left on various blogs and threads regarding my post and how I felt about resuscitating infants at the edge of viability:</p> <p><em><strong>“Perhaps we should ask the opinions of some people who were once babies who were preemies and survived and see what they think about the whole business.<br />I have a feeling they will tell you they don’t remember a thing. And if they do, I am willing to bet they are glad they went through it.<br />It is all a ploy. Playing on peoples’ fears of pain and suffering to, as Scrooge said, “decrease the surplus population.</strong></em><br /><strong><em>I am scared for the future.”</em></strong></p> <p><em><strong>“It sounds to me as if some of you are looking for an excuse not to spend the time, effort and expense on children who “probably won’t make it anyway”. I don’t believe it’s about compassion at all. I think it’s about inconvenience and money.”</strong></em></p> <p><em><strong>“This is just disgusting….he was moving, breathing, and those little bastard doctors did nothing? They should all go to prison for murder and assault on the mom!”</strong></em></p> <p><em><strong>“Some, no, MOST families want to try, and YES we know preemies need a lot of care, at first. So, you and the NICU nurse say set them aside and let them die. Cruel and unethical?Sorry but your extravagant links show the exception and NOT the rule. YOU are cruel and unethical to deny care to these little ones.”</strong></em></p> <p><em><strong>“Sorry it means more work for the doctors and nurses but this is Life at its most innocent and helpless and deserves a chance. We defib flat liners over and over, we try and save life, not set it aside to wither away and die.”</strong></em><br />I have dedicated my life’s work to the care of infants. I have invested blood, sweat and tears in the care of infants, including those at the limits of viability. I , like all NICU nurses, have real, hands-on experience of caring for these micro-preemies. We know what caring for these babies entails, and what the outcomes will most likely be. We deserve a voice.</p> <p>Because the majority of NICU nurses do not agree with the concept of resuscitating any infant born alive, no matter what the gestational age, this does not make us heartless baby killers. It makes us realists. It makes us compassionate. It makes us heroes.</p> <p>RR</p><p>********</p><p style="text-align: left;">Thanks to <a style="font-weight: bold; font-style: italic; color: rgb(255, 0, 0);" href="http://www.kevinmd.com/blog/2009/09/letting-premature-infant-die-considered-health-care-rationing.html">Kevin MD</a> for posting it on his blog.<br /></p><p><br /></p></blockquote><p></p>ThePreemie Experimenthttp://www.blogger.com/profile/15882375368535807238noreply@blogger.com96tag:blogger.com,1999:blog-6205556462251851125.post-27586738972743037822009-07-19T08:58:00.004-05:002009-07-19T09:37:16.144-05:00Where did that come from?I've shed many tears since Paige was born. Through the NICU period, her first few birthdays, milestones, through the feeding issues, after doctor appointments, through procedures, watching her in various stage performances (ballet, piano, gymnastics, plays, etc) and on and on.<br /><br />Her early birthdays were hard. It wouldn't take much and I would be a ball of tears. Equally as difficult were the years of procedures and doc visits. As soon as she would be safely tucked in bed I would fall apart, thinking how unfair it was that she had been through so much, especially when there was no end in sight.<br /><br />As the years go by the tears of sadness or tears surrounding the remembrance of struggles come less and less, to the point that they are virtually non existent now. Every once in a while those tears come out of nowhere and catch my off guard.<br /><br />That is exactly what happened on Friday. I took Paige (and my MIL's hubby) to a health and fitness expo. Paige loves any and all things medical so I thought it would be a great experience for her and a wonderful homeschool opportunity as well. What I was not prepared for was the fierce emotions that would literally take my breath away and leave me scrambling to hide my tears from Paige. What caused this reaction? I managed to snap one picture before I had to stop and try to regain some composure.<br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgaTVvDKiKReGQL4Rp-swpOV87P34qiWfeHFYIvXHY13yrptw78-Lw-mMqsYRqznr-CY3mXxglmTCQOU0TkjQ_93zlAtfUW-5KJVnYJyBkKlQuef54ETCRVTplzOPMNmaakxGHViiuq3k0/s1600-h/100_2450.jpg"><img style="margin: 0px auto 10px; display: block; text-align: center; cursor: pointer; width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgaTVvDKiKReGQL4Rp-swpOV87P34qiWfeHFYIvXHY13yrptw78-Lw-mMqsYRqznr-CY3mXxglmTCQOU0TkjQ_93zlAtfUW-5KJVnYJyBkKlQuef54ETCRVTplzOPMNmaakxGHViiuq3k0/s320/100_2450.jpg" alt="" id="BLOGGER_PHOTO_ID_5360174763797137090" border="0" /></a><br />Right before I took this picture I turned to my MIL's hubby and said, "Wow, doesn't that bring back memories?" as we were looking at the monitor (on the left in the pic). I swear I was transported back into the NICU. I felt sick. I felt the tears coming so I opened my eyes real wide, hoping to dry them out quickly. I kept telling myself to breathe but it wasn't working. The background noise started to sound muffled and my lips were tingling. Then it hit me; I was in the beginning of a panic attack. Geesh! 10 1/2 after the NICU and it came back that easily. Even as I am typing this post, the tears are there.<br /><br />I was able to regain composure in enough time to actually listen to Paige asking such wonderful questions to the doctor that was operating the Simm baby. When she asked, "Is the blue light coming out of the baby's mouth supposed to signify lack of oxygen?", I almost lost it all over again. But, then the doctor praised her for her question and she turned to me with this bright, proud smile and I proudly smiled back, giving the thumbs up.<br /><br />The best part was that Paige never realized what had happened to me.ThePreemie Experimenthttp://www.blogger.com/profile/15882375368535807238noreply@blogger.com19tag:blogger.com,1999:blog-6205556462251851125.post-80901062200618446752009-07-15T15:07:00.004-05:002009-07-19T09:37:36.056-05:00Unimpaired Outcomes for Extremely Low Birth Weight Infants at 18 to 22 Months**After talking with Helen, I have decided to make a separate post out of this study, which Helen cited in the comments of the previous post, as to make sure it doesn't get lost in another topic.**<br /><br />Helen Harrison writes:<br /><br />I have just seen a study In "Pediatrics" from the NICHD entitled "Unimpaired Outcomes for Extremely Low Birth Weight Infants at 18 to 22 Months" which contains some rather shocking (to me, at least) information, indicating that current outcomes are even worse than I thought.<br /><br />[Gargas, Vohr, Tyson et al. Pediatrics 2009:112-121.]<br /><br />This study looked at outcomes (both by gestational age and birthweight) of 5,250 children born weighing less than 1000 grams between 1998 and 2001 in NICHD study hospitals in the US.<br /><br />"Unimpaired" was defined as Bayley Scale scores equal to or greater than 85, a normal neurological exam, normal vision, hearing, swallowing, and walking.<br /><br />This study offers a new perspective on outcomes since "mild" (and sometimes "moderate")disabilities -- which most of us parents would consider fairly severe -- are lumped in with "normal", "unimpaired" outcomes when neonatologists and other professionals give outcome information to parents.<br /><br />This is, as many of us have learned the hard way, highly misleading.<br /><br />So the NICHD researchers set out to record just how many children were actually free of impairment by the criteria above, at age 18 to 22 months.<br /><br />We parents also know that 18 to 22 months is much too early to determine some pretty devastating outcomes of prematurity -- autism, for example -- so even these numbers may be overly optimistic.<br /><br />Here's what they found:<br /><br />Less than 1% of children born weighing less than or equal to 500 grams survived to be normal(that is, "unimpaired" at 18-22 months).<br /><br />From 501 to 600 grams it is about 5% unimpaired;<br />701-800 grams about 15 % unimpaired ;<br />increasing to 24% for infants 901-1000 grams.<br /><br />By gestational age: <1% at 23 weeks are unimpaired;<br />< 5% at 24 weeks;<br />about 15% at 25 weeks, and<br />about 24% at 27 and 28 weeks.<br /><br />(I'm reading some of this from a graph so I can't cite exact percentages.)<br /><br />After 27-28 weeks gestational age, infants born at 1000 grams or less are small for gestational age as well as premature -- an additional risk factor -- and the percentages of unimpaired decline again, so that, for example, less than 20% of children born at 31 weeks weighing 1000 grams are unimpaired.ThePreemie Experimenthttp://www.blogger.com/profile/15882375368535807238noreply@blogger.com25tag:blogger.com,1999:blog-6205556462251851125.post-24578046518402817672009-07-11T14:32:00.003-05:002009-07-19T09:38:35.253-05:00Thoughts From A Pregnant Preemie<div style="margin: 1ex;"> <div><p> <span style=";font-family:Calibri;font-size:100%;" >Just to provide a little background, I am 26 years old, and I was born at 29 weeks gestation weighing 3lb 13oz. I was in the NICU for nearly 100 days before being brought home. My mother also had a second daughter two years after me, who was born too early to survive.</span></p> <p> <span style=";font-family:Calibri;font-size:100%;" >From the day I found out I was pregnant, I felt my joy and excitement tempered by worry. My mother had preeclampsia and recent studies have suggested a hereditary component which might put me at a higher risk of delivering my child prematurely. </span></p> <p> <span style=";font-family:Calibri;font-size:100%;" >I feel like most people don’t understand the challenges that I have faced as a preemie, since it has left no visible scars on me. As a result, no one seems to understand why I am terrified that my son will make an early entrance “because look at you, you’re just fine.” Either they don’t understand what kind of issues preemies can suffer from and think they’ll be just like a full term baby only smaller, or they think I’m being paranoid and shouldn’t be borrowing trouble.</span></p> <p> <span style=";font-family:Calibri;font-size:100%;" >I’ve never found that hiding my head in the sand solved any problems, and I want to be as prepared as possible in case my son does need to make an appearance early. It’s true that there have been tremendous strides in the care of premature babies since I was born, but the media tends to gloss over the real facts like survival rates and disabilities, while focusing on the ever-smaller miracle babies who pull through. I wanted to make sure I understood all the hard facts so that if there were any decisions to be made, they wouldn’t be based on emotion or popular misconception.</span></p> <p> <span style=";font-family:Calibri;font-size:100%;" >It really frustrates me though when people simply don’t understand the reality of having (or being) a preemie. They see the success stories, or are assured by doctors that preemies catch up by age two. No one seems to pay any attention to the ones that don’t. It makes me so angry when I see women in their third trimesters (or even second trimesters!) talking about how they can’t wait for the baby to be out because they are so uncomfortable, or begging their doctors for an early induction. At least in my mind, my baby’s health is far more important than any amount of pregnancy discomfort that I will suffer; I will gladly endure whatever’s necessary to keep my son inside me until it is safe for him to come out. Will it be difficult? I am sure it will be. Pregnancy is no picnic for most women, but who ever said that being a parent was easy? It’s all about making the best decisions you can for your child, and that means putting his/her health ahead of your comfort.</span></p> <p> <span style=";font-family:Calibri;font-size:100%;" >On a pregnancy message board I frequent, they have a tradition of celebrating “V-day” when they reach 24 weeks, or viability day. It makes me so frustrated to read those posts because most of the women seem to feel that once they’ve reached that point, they are safe. Their children will be fine, just a little small. I wish there was some way to show them the reality of a 24 week preemie, the heartache of the NICU roller coaster, and the possibility that their child still may not survive or be severely disabled. It boggles my mind that people can truly believe that a fetus just barely halfway through a normal pregnancy would be just fine if born.</span></p> <p> <span style=";font-family:Calibri;font-size:100%;" >Am I being negative? I think that I’m being a realist. Some children who are born as early as 24 weeks may suffer very few visible effects of prematurity, or they may not appear until adulthood. I can testify to that. But the majority of babies born this early in pregnancy will have lasting issues and many will die; I don’t see that as a milestone worth celebrating.</span></p> <p> <span style=";font-family:Calibri;font-size:100%;" >I’m currently in my 26<sup>th</sup> week of pregnancy, and aside from having a few scary moments in the first trimester when we thought we were losing the baby, I’ve had a fairly normal pregnancy so far. Due to my family history, I’m being carefully monitored for any warning signs. Every time I feel my son kick or move inside me, it’s the most wonderful feeling in the world. I would do anything to keep this little one safe and healthy, and in the womb until he is fully developed and ready to be born.</span></p> <p> <span style=";font-family:Calibri;font-size:100%;" >I just wish there was some way to help more people understand what a serious issue prematurity is. Kudos to Stacy for helping to show people that there is another side to prematurity other than the warm fuzzy one that the media chooses to publicize.</span></p> <p> <span style=";font-family:Calibri;font-size:100%;" >When I was a little girl, my mother always told me not to wish my life away when I said I wanted to grow up faster or be older. Now that I am pregnant with my son, that comment rings even truer for me.</span></p><p>Susan<br /></p><p><span style=";font-family:Calibri;font-size:100%;" ><br /></span></p><p style="font-weight: bold; font-style: italic;"><span style=";font-family:Calibri;font-size:100%;" >**Note from Stacy... Ok, before you click on "publish your comment" please keep in mind that the person who was brave enough to share her thoughts with all of you is PREGNANT, in a high risk pregnancy no less. Do NOT sling drama her way. If there is a topic within her post that you would like to discuss further, please post your request in the comments or email me and I will gladly make an entire post out of the topic.**</span></p><br /></div> </div>ThePreemie Experimenthttp://www.blogger.com/profile/15882375368535807238noreply@blogger.com30tag:blogger.com,1999:blog-6205556462251851125.post-13911873200328256602009-07-08T07:14:00.003-05:002009-07-08T08:37:52.032-05:00Thank YouOver the past few days I've typed and re-typed this blog post many times. I can't seem to find the right words to say what's on my mind and in my heart.<br /><br />I have appreciated all of the emails that I've received. <span style="font-style: italic;">See, even that isn't sounding right. Appreciated? Does the meaning of that word really convey what I'm feeling? Is the word strong enough? I hope so.</span><br /><br />I had always hoped that this blog would help someone that needed to not feel alone; someone who may be wondering why their child had not caught up and they were beyond the magic age of 2 or 3 or maybe someone who was dealing with raw emotions that were scary. But, the blog went way beyond my expectations which became evident by the number of emails I have received since going on hiatus.<br /><br />Thank you.<br /><br /><span style="font-style: italic;">Simple words-are they strong enough? There I go again. I'm not going to try to find any other words or else this post will never reach the blogosphere.</span><br /><br />Thank you to everyone who has written to me. Please don't take my lack of response as a lack of appreciation. Please. I've run through a gamut of emotions and needed to let it all soak in. I am so thankful that the blog has helped so many and I still read those wonderful emails when I need to be reminded that there are good people out there.<br /><br />What I was not prepared for when I started this blog was the anger and negativity that would be directed toward me and those who comment here. My skin has thickened over the past 2 1/2 years of blogging with each and every insult and rude comment that was thrown at me. But, that thickness becomes paper thin, still to this day, when the attacks are directed at others. It was easy to walk away from blogging to avoid that gut wrenching emotion that takes over my entire being when people start being nasty to each other.<br /><br />Easy to walk away... yes. Easy to stay away... no.<br /><br />I will be posting an entry from a guest blogger in the next few days. It was her story that brought me back to blogging. I am asking everyone to keep an open mind. Not many of my readers can say they have ever been in her shoes-not completely. You'll see why. Her words are important. Every parent of a preemie, especially preemie girls, should read her words carefully. Every pregnant woman should take note. Above all else, I am asking that everyone be kind to her. There will be topics in her post that warrant further discussion which I will gladly make a separate post so the drama will stay separate. I will not allow drama to be thrown her way!ThePreemie Experimenthttp://www.blogger.com/profile/15882375368535807238noreply@blogger.com21tag:blogger.com,1999:blog-6205556462251851125.post-28367615995107713332009-05-18T15:40:00.003-05:002009-05-21T12:44:06.144-05:00Goodbye For NowAfter watching the video that <span class="blsp-spelling-error" id="SPELLING_ERROR_0">TPD</span> posted (which has been removed) on my blog, which I feel is a serious threat, I am going to stop blogging for the time being until I can figure out what I want to do.<br /><br />It's a sad day for me. Over the past 2 years I have received so many emails from people who have been helped by this blog. I have made some wonderful friends as a direct result of this blog as well.<br /><br />It took one jerk to ruin it all.<br /><br />Thank you to everyone who has been with me through it all.<br /><br />Helen, I am so very sorry that this happened to you! Thank you for all that you've done for us parents over the years!ThePreemie Experimenthttp://www.blogger.com/profile/15882375368535807238noreply@blogger.com51tag:blogger.com,1999:blog-6205556462251851125.post-85057336365611202562009-05-18T14:43:00.004-05:002009-10-22T08:20:44.394-05:00Moving OnAfter cutting through all of the bullshit (sorry-I'm in a mood), it seems that most can agree that resuscitation should be a personal choice. Agreed?<br /><br /><span class="blsp-spelling-error" id="SPELLING_ERROR_0">Ok</span>.<br /><br />If the conversation was to end there, most would be able to take a deep breath and go on discussing the long term impacts of prematurity and how they may affect ones life and the lives of the family.<br /><br />Wait. Then we'll get stuck because some people don't like the way the statistics are compiled. Some believe that it doesn't tell a whole story and some believe that certain issues shouldn't be considered a disability.<br /><br />So, we argue about statistics and we move on.<br /><br />Wait. We'll get stuck again because some people don't like it when parents discuss how hard life can be. For some reason an open discussion of our daily lives leads some to think that you don't love or value your child.<br /><br /><span class="blsp-spelling-error" id="SPELLING_ERROR_1">Ok</span>.<br /><br />We'll all change and start only talking about the happy, happy, joy, joy parts to our lives. Would that make everyone happy? We'll all just stop talking about the long term issues that our kiddos endure or will face in the future. No more honesty.<br /><br />Guess what? The issues will still be there. Our kiddos will still have seizures, constipation, mental health issues, <span class="blsp-spelling-error" id="SPELLING_ERROR_2">CP</span>, blindness, social issues, intellectual difficulties, etc. Marriages will still fail. Families will still struggle financially. Parents who were told that there child will catch up by age 2 or 3 will be wondering how they failed their child because he/she is still behind.<br /><br />Our silence will solve NOTHING! Does it mean that we love our children any less because we openly <span class="blsp-spelling-corrected" id="SPELLING_ERROR_3">discuss</span> the issues? I'm still baffled why people think it will. I love my children, with all of my being. I've devoted my life to them and their happiness. (if anyone doubts this... try homeschooling your own child and you'll see how much I love Paige-<span class="blsp-spelling-error" id="SPELLING_ERROR_4">lol</span>) Just because I talk about how prematurity has affected all of us, does NOT mean I love her any less!<br /><br />I don't mind the argumentative nature of the comments but what I cannot stand is the nasty bickering.<br /><br />We will all disagree at times. Get over it. State your point and move on.<br /><br />As for attacking Helen. She is merely the <span class="blsp-spelling-corrected" id="SPELLING_ERROR_5">messenger</span>. You may not like what she has to say but she backs it up with statistics, none of which she compiled. She is merely the messenger!ThePreemie Experimenthttp://www.blogger.com/profile/15882375368535807238noreply@blogger.com5tag:blogger.com,1999:blog-6205556462251851125.post-49130749793576103362009-05-14T18:38:00.004-05:002009-05-14T19:47:47.783-05:00The Financial Impact of Prematurity-In The MediaSome of the on line preemie support groups, and various blogs, have been turned inside out this past week due to some recent media coverage of a few preemies.<br /><br />First up... The Freemans. They were featured on a recent episode of <a style="font-weight: bold; font-style: italic; color: rgb(255, 0, 0);" href="http://www.thedoctorstv.com/main/show_page/205">The Doctor's</a>. Their blog (seems to be mostly authored by Dad) is quite popular among preemie blogs. Kayleigh was born 3 months early in June of 2008. The show featured their story due to the financial impact that prematurity has played in their lives. They were doubly hit when the economy crashed and they were on the verge of losing their home. Many of us have been in that situation. I've been very open about our financial hardships, beginning with the NICU bill that was not covered by insurance and continuing for the past 10 1/2 years of medical bills due to on going care. Their story is NOT unique.<br /><br />So why the buzz in the preemie world? Well, they used their blog to solicit donations all the while never disclosing how the money was being used. Some have commented that they never sent thank you's after they've received said donations. I am not one of those who donated so I don't feel qualified to comment on any of the above.<br /><br />What I do know is that many of us are one more procedure away from being completely broke. Unlike decisions we make on our own medical care, as parents we cannot chose to withhold a medicine or a procedure because we cannot afford it. They are our children and we do everything we can to improve their quality of life.<br /><br />I think the frustration in the preemie world over this family is that "their story" is "our story" too. Many of "us" need help but no one is beating down the door and tossing cash our way. Some people felt that the family was still spending money on extras (getting nails done, etc) and they shouldn't be doing so since they were receiving donations. (Since I don't know how those extras were paid for I also won't be commenting on it)<br /><br />Some states have wonderful resources such as SSI and medicaid. But what about those who live in states where income is used to determine if you qualify? What about those who live in states without waivers? What about all of the bills incurred after the NICU? Co pays? Medicines? Living on one salary because your preemie cannot be in day care? It all adds up.<br /><br />All in all the show did a fairly good job of showing what life is can be like for people without insurance (or under insured) when a crisis hits.<br /><br />At one point Dr. Sears talked about a late night encounter he had with a father in the NICU. The father was questioning whether or not it was all worth it.<br /><blockquote>"I know as doctors and pediatricians we try to do everything we can do for these little babies but sometimes we forget what happens outside of the hospital, what the cost can be for the whole family. This reminds me of a story. I was spending the night in the neonatal intensive care unit with a family a few years ago and very similar situation as your guys (pointing to the Freeman's). The baby born 3 months premature, barely over a pound and you know, the child was only a few weeks old and had all of these procedures and surgeries. The dad came in in the middle of the night and we were sitting there together and the dad just kind of broke down and he said, "You know, is this going to be worth it? You know I don't know if we can pay for all of this." and seeing their little baby go through all of these things and not knowing and probably even doubting if there is even going to be a good end to all of this. It's just really tough." </blockquote><br /><br />At that point I held my breath. He seemed choked up, like he really wanted to say what was on his mind. But it ended there and I let out a sigh. Although it wasn't the right time for that kind of discussion (being that it was a show on insurance), I really wanted to hear what was on Dr. Sears' mind.<br /><br />As for Kayleigh... she passed away on May 11th, having never left the NICU. You can read her blog here... <a style="font-weight: bold; color: rgb(255, 0, 0);" href="http://kayleighannefreeman.blogspot.com/">http://kayleighannefreeman.blogspot.com/</a><br /><br />Next up (in a few days) will be a post about the People Magazine article on the 6 micropreemies. Please hold the comments until then as I'm sure you all will have a lot to say once you hear what I have to say.ThePreemie Experimenthttp://www.blogger.com/profile/15882375368535807238noreply@blogger.com82tag:blogger.com,1999:blog-6205556462251851125.post-52937453077983052532009-05-06T14:22:00.003-05:002009-05-06T15:11:04.856-05:00Stacy, where are you?Lately, I've gotten a few emails asking that very question. They coincide with facebook posts to my wall asking, "what happened to TPE?"<br /><br />First, I need to apologize to those who I have not responded to. I am reading my emails and appreciate every one's concerns. I'm so thankful for everyone who follows this blog and I don't want my absence to convey a different message.<br /><br />Second, an explanation is warranted. Part of the reason for the lack of posting can be attributed to the fact that homeschooling takes up most of my free time. In the near future I'll be devoting a post on the subject of homeschooling and we can all discuss that further.<br /><br />Another reason why I haven't been chatty on the blog is due to the stress of our current situation. Both hubby and I have been bit by financial and medical issues that sucked the energy out of me.<br /><br />But in all honesty, the biggest reason for my absence is the sadness I have been feeling with regard to the world of prematurity. I am an optimist and can be found looking for the bright side or upswing in every situation. I'm always looking for the study or the report that shows promising information in regards to outcomes. They aren't there. This past month, within the preemie community (bloggers and people on the on line support groups) the sadness was overwhelming. We saw the death of older children due to complications from their early birth. Other parents were left wondering how this could happen, thinking that their child was safe once they were out of the NICU. Pregnancies ended early and resulted in parents making decisions to not resuscitate. New preemie parents are joining the groups in record numbers. Parents of toddlers are wondering what they may have done wrong because their child did not catch up by age 2 (like they were told in the NICU). Parents of older children are realizing that their child will not be making the recovery they had held out hope for. Children receiving diagnosis's of CP was more than some parents could handle. Marriages are falling apart due to the stress of having a child with special needs.<br /><br />Is this past month any different than all of the months in the previous 10 years since Paige was born? No. And that is what has me down. Day after day, month after month, year after year the cycle continues. What has been learned from all of early births? Why are statistics not improving? There are times when it just gets me down. <br /><br />I will be back soon. I just need time to recover. I started to feel that there was no use to continue this blog. I have changed nothing. (pretty sad that I thought I could actually make a difference when the problem is so huge) Then I realized that there is still so much I have to say. I started this blog because I was outraged at the fact that parents were being told that their preemie would catch up to his/her peers by age 2 or 3. Those of us in the trenches know this is not true and I feel, now more than ever, that something needs to be done about this. There are still parents blaming themselves for the outcome of their preemies. This should enrage you all as it does me. <br /><br />Thanks again to all of you who have written to me to ask, "Stacy, where are you?" I'll be back soon and with the help of all of you, we will once again bring light to the subject of the long term issues related to prematurity.ThePreemie Experimenthttp://www.blogger.com/profile/15882375368535807238noreply@blogger.com61tag:blogger.com,1999:blog-6205556462251851125.post-55863972528672112942009-04-05T14:23:00.004-05:002009-04-05T14:38:30.235-05:00Adult Preemies Needed for ResearchI received an email from an adult former preemie asking if I wouldn't mind posting a request on my blog. Not only do I not mind, I am grateful to see research being done into BPD and honored to help in any way that I can.<br /><br />Let's help him out... pass along the info to any adult preemies you may know. Please note... they are looking for former preemies even if they do <span style="font-style: italic; font-weight: bold;">not</span> have BPD.<br /><br />****<br /><br /><blockquote>Hi Stacy,<br /><br />My name is Steve Laurie and I got your name and contact info from Helen Harrison and wanted to email you and introduce myself. My twin brother (Tim) and I were born at 25 weeks back in 1980 and have miraculously survived with few complications due to the prematurity. I am now a graduate student at the University of Oregon studying lung function and one of the aims of our lab is to look at adult survivors of bronchopulmonary dysplasia. This follow-up work has not been studied and we are interested in the lung function of these individuals.<br /><br />We are currently recruiting subjects to participate in our study (see attached flier) and would like to see if is possible to post our flier on your site. I am also trying to send an email out through the former preemie yahoogroup.<br /><br />Please let me know if this is something we could do or if you have any questions regarding what we are doing, how we are doing it, what we hope to accomplish or even just questions about my story as a preemie.<br /><br />Please do not hesitate to contact me via either email or phone, I look forward to hearing from you.<br /><br />Thanks so much,<br /><span style="color:#888888;"> Steve<br /></span><br /><br />--<br />Steve Laurie<br />Department of Human Physiology<br />University of Oregon<br />Eugene, OR 97403<br /><a href="mailto:slaurie@uoregon.edu" target="_blank">slaurie@uoregon.edu</a><br />541-346-0822 (lab)<br /></blockquote><br />******<br /><br />I then asked Steve to comment on his outcome with regards to his own prematurity. Here is his reply...<br /><br />****<br /><blockquote>Hi Stacy,<br /><br />Thanks for the reply! Our lab has a number of things we work on surrounding lung function, some dealing with preemies, other aspects that do not. Currently there are three grad students in my lab and while we each have a project that is "ours" that we each head up, we all work together on all of the projects. Technically speaking, the preemie project is not mine, although all that really means is that when it comes to the contact person it is Ximeng (pronounced Simon), who sits right next to me in our office :) That being said, I obviously have a keen interest in the success of the project and so am doing whatever I can to get it up and running. Once the actual data collection begins, we all contribute to all the projects because they are such an undertaking.<br /><br />Additionally, we are working on putting together a study to look at lung function of preemies that are still kids (5-15 years old) and see if putting them onto an exercise program can help their lung function before going through maturity. This project is still waiting for approval from our human subjects committee, but as that develops, I will let you know.<br /><br />I'm not sure how much information is given out to parents regarding lung function of their preemies, but I can give you a brief idea of what we are interested in. Basically, with the advent of surfactant in the early 1980s (my brother and I were some of the first to get it) it has dramatically helped the long term lung function of these kids. However, as the lung is not completely developed when these kids are born, it finishes it's development while these kids are on oxygen and it is the high oxygen levels that actually stunt the lung's growth and consequently limit their overall lung function later in life.<br /><br />My brother Tim and I were born in 1980 at Children's Hospital in San Francisco (see The Premature Baby book by Helen Harrison, we're in there) - I was 2 lbs even, Tim was 1 lb 16 oz. I remember growing up and going back for follow-up appointments until we were in our early teens and remarkably, we have nothing wrong with us. I think a lot of it is luck for being born at the hospital we were at; I know our parents said they were signing experimental treatment forms on a weekly basis! Actually, the only thing we do exhibit that is abnormal is that our lung function is slightly compromised due to the high levels of oxygen we were on while in the NICU for 3 months after being born.<br /><br />I graduated from UC Davis in 2004 with a degree in exercise physiology, my brother from Loyala Marymount University with a degree in television production. I am actually a long distance runner and was a 2x All-American while in college, but have since moved up to the marathon where I just missed qualifying for the US Olympic Trials in 2008. I hope that parents of new preemies can see how lucky my brother and I have been and maintain hope that their preemies, despite the odds against them, can turn out healthy and have extraordinary lives too.<br /></blockquote><br />****<br />Here is the flyer that was attached...<br /><div type="HEADER"> <p align="right">Classroom and On-line flyer</p> </div> <p class="western" align="center"> <span style="font-family:ArialMT, Arial, sans-serif;"><span style="font-size:100%;"><span style="font-size:130%;">Subject Recruitment</span></span></span></p> <p class="western" align="center"> <span style="font-family:Arial-BoldMT, Arial, sans-serif;"><span style="font-size:100%;"><b>Paid Pre-term Research Subjects Needed.</b></span></span></p> <p class="western"><span style="font-size:100%;"><b><span style="font-family:Arial-BoldMT, Arial, sans-serif;">Study population: </span></b> </span> </p> <p class="western"><span style="font-size:100%;"><span style="font-family:ArialMT, Arial, sans-serif;">Healthy, non-smoking males and females age 18-49 yrs. Subjects born preterm (<u><</u>32 weeks gestational age) with or without Bronchopulmonary Dysplasia, males and females age 18-49 yrs. </span></span></p> <p class="western"><br /></p> <p class="western"><span style="font-size:100%;"><b><span style="font-family:Arial-BoldMT, Arial, sans-serif;">Study description: </span></b> </span> </p> <p class="western"><span style="font-size:100%;"><span style="font-family:ArialMT, Arial, sans-serif;">This study is designed to examine long-term heart, lung and breathing outcomes resulting from preterm birth. It will be conducted over the course of 4 visits. <u>First visit</u> will involve resting saline contrast echocardiography to examine your heart, an array of lung function tests, and a VO <sub>2max </sub>test. <u>Second visit </u>(for study population only) will test your lung function before and after administration of a fast acting bronchodilator. <u>Third visit</u> will involve total lung volume measurements, breathing gas mixtures with varying concentrations of oxygen and carbon dioxide, and a lung diffusion capacity test. <u>The final visit</u> will involve two exercise tests breathing different levels of oxygen, arterial blood samples and saline contrast echocardiography will be performed to examine heart and lung function. </span></span></p> <p class="western"><br /></p> <p class="western"><span style="font-family:Arial-BoldMT, Arial, sans-serif;"><span style="font-size:100%;"><b>Relevance to subjects born premature:</b></span></span></p> <p class="western"><span style="font-family:ArialMT, Arial, sans-serif;"><span style="font-size:100%;"><span style="font-size:130%;">It is our hope that this study will provide a fundamental understanding of the long-term heart and lung outcomes of premature birth. </span></span></span></p> <p class="western"><br /></p> <p class="western"><span style="font-family:Arial-BoldMT, Arial, sans-serif;"><span style="font-size:100%;"><b>Study Location: </b></span></span> </p> <p class="western"><span style="font-family:ArialMT, Arial, sans-serif;"><span style="font-size:100%;"><span style="font-size:130%;">The study will be conducted in the University of Oregon, Department of Human Physiology, Cardiopulmonary and Respiratory Lab, located on the 2nd floor of the Center for Medical Education and Research Building (722 E. 11th st.) on the Sacred Heart Medical Center campus. </span></span></span></p> <p class="western"><br /></p> <p class="western" align="center"> <span style="font-family:Arial-BoldMT, Arial, sans-serif;"><span style="font-size:100%;"><b>Subjects will be compensated for participation in this study.</b></span></span></p> <p class="western" align="center"> <span style="font-family:Arial-BoldMT, Arial, sans-serif;"><span style="font-size:100%;"><b>If interested, please contact</b></span></span></p> <p class="western" align="center"><br /></p> <p class="western" align="center"> <span style="font-family:ArialMT, Arial, sans-serif;"><span style="font-size:100%;"><span style="font-size:130%;">Ximeng Yang B.S.</span></span></span></p> <p class="western" align="center"> <span style="font-family:ArialMT, Arial, sans-serif;"><span style="font-size:100%;"><span style="font-size:130%;">xyang1@uoregon.edu (541) 346-0822</span></span></span></p> <p class="western" align="center"><br /></p> <p class="western" align="center"> <span style="font-family:ArialMT, Arial, sans-serif;"><span style="font-size:100%;"><span style="font-size:130%;">Andrew Lovering Ph.D</span></span></span></p> <p class="western" align="center"> <span style="font-family:ArialMT, Arial, sans-serif;"><span style="font-size:100%;"><span style="font-size:130%;">lovering@uoregon.edu (541) 346-0831</span></span></span></p> <p class="western" align="center"><br /></p> <p class="western" align="center"> <span style="font-family:ArialMT, Arial, sans-serif;"><span style="font-size:100%;"><span style="font-size:130%;">Department of Human Physiology</span></span></span></p> <p class="western" align="center"><span style="font-family:ArialMT, Arial, sans-serif;"><span style="font-size:100%;"><span style="font-size:130%;">1240 University of Oregon 122 Esslinger Eugene OR 97403</span></span></span></p>ThePreemie Experimenthttp://www.blogger.com/profile/15882375368535807238noreply@blogger.com18tag:blogger.com,1999:blog-6205556462251851125.post-47374236536769016822009-03-31T14:16:00.003-05:002009-03-31T14:22:57.667-05:00Paige Wonders....Paige: "Mom, I've been thinking about what kind of doctor I want to be. What kind of doctor deals with the most blood, guts and bodily fluids?"<br /><br />Me: "A nurse"<br /><br />Sending love to all my nurse readers out there! lol<br /><br />A few minutes later Paige comes out and tells me she wants to be a surgeon. This isn't the first time we've heard her say this. We always try to balance our answer with reality (she has very mild CP and shaky hands) while not squashing her drive. <br /><br />"Well, maybe I'll stick with my original idea and create a preemie doctor field."<br /><br />You do that sweetie!!ThePreemie Experimenthttp://www.blogger.com/profile/15882375368535807238noreply@blogger.com13tag:blogger.com,1999:blog-6205556462251851125.post-23350207011201647922009-03-26T09:45:00.006-05:002009-03-30T06:33:29.883-05:00ABDUCTED CHILDREN****Update March 30, 2009**** First I want to thank everyone who took a moment to look at the pictures of Jack and Duncan. The boys were found but sadly they were not found alive. There are no more details at this time.***<br /><br /><br />While the majority of the posts on my blog are dedicated to prematurity (with the occasional teasing of my husband), this blog post will be dedicated to 2 children who are missing.<br /><br />Their family needs your help.<br /><br />Please take a moment to look at the information and study the pictures. Please do NOT assume that you won't be able to help because of the location of the abduction. Many abducted children are taken far away from the point where they were taken. Also, just because these boys were taken by their father, please do NOT assume it is not as serious as a stranger abduction.<br /><br />If you would like to help, you can print posters from the following link:<br /><a style="font-weight: bold; font-style: italic; color: rgb(255, 0, 0);" href="http://www.ncmec.org/missingkids/servlet/PubCaseSearchServlet?act=viewPoster&caseNum=1117673&orgPrefix=NCMC&searchLang=en_US">National Center for Exploited and Missing Children</a><br /><br />For more information you can visit:<br /><a style="color: rgb(255, 0, 0); font-weight: bold; font-style: italic;" href="http://www.myspace.com/helpfindduncanandjack">http://www.myspace.com/helpfindduncanandjack<br /></a><br />If you are on Facebook you can join the group<br /><h3>"the official bringing jack and duncan connolly home safe group"</h3><br />If you have any information, no matter how small, please contact<br /><br />The National Center for Missing and Exploited Children at<br /><span style="color: rgb(255, 0, 0);font-size:130%;" ><b>1-800-843-5678 (1-800-THE-LOST)<br /><span style="color: rgb(0, 0, 0);"><br /></span></b></span><center><span style="font-size:100%;"><b>Family Abduction</b></span></center> <!-- MKPAGE=Poster4.jsp --> <table border="0" cellpadding="5" width="100%"> <tbody><tr> <td valign="top" width="25%" nowrap="nowrap"> <span style="font-size:100%;"><b>DUNCAN CONNOLLY </b></span><br /> <img src="http://www.ncmec.org/photographs/NCMC1117673c1.jpg" width="192" height="240" /><br /> <p> <span style="color: rgb(255, 0, 0);font-size:100%;" ><b>DOB:</b></span> <span style="font-size:100%;"> Oct 17, 1999</span><br /> <span style="color: rgb(255, 0, 0);font-size:100%;" ><b>Missing:</b></span> <span style="font-size:100%;"> Mar 8, 2009</span><br /> <span style="color: rgb(255, 0, 0);font-size:100%;" ><b>Age Now:</b></span> <span style="font-size:100%;"> 9</span><br /> <span style="color: rgb(255, 0, 0);font-size:100%;" ><b>Sex:</b></span> <span style="font-size:100%;"> Male</span><br /> <span style="color: rgb(255, 0, 0);font-size:100%;" ><b>Race:</b></span> <span style="font-size:100%;"> Asian</span><br /> <span style="color: rgb(255, 0, 0);font-size:100%;" ><b>Hair:</b></span> <span style="font-size:100%;"> Brown</span><br /> <span style="color: rgb(255, 0, 0);font-size:100%;" ><b>Eyes:</b></span> <span style="font-size:100%;"> Brown</span><br /> <span style="color: rgb(255, 0, 0);font-size:100%;" ><b>Height:</b></span> <span style="font-size:100%;"> 3'6" (107 cm)</span><br /> <span style="color: rgb(255, 0, 0);font-size:100%;" ><b>Weight:</b></span> <span style="font-size:100%;"> 66 lbs (30 kg)</span><br /> <span style="color: rgb(255, 0, 0);font-size:100%;" ><b>Missing From:</b></span><br /> <span style="font-size:100%;">BLOOMINGTON<br /> IL<br /> United States</span> </p></td><td valign="top" width="25%" nowrap="nowrap"> <span style="font-size:100%;"><b>JACK CONNOLLY </b></span><br /> <img src="http://www.ncmec.org/photographs/NCMC1117673c2.jpg" width="192" height="240" /><br /> <p> <span style="color: rgb(255, 0, 0);font-size:100%;" ><b>DOB:</b></span> <span style="font-size:100%;"> Apr 10, 2001</span><br /> <span style="color: rgb(255, 0, 0);font-size:100%;" ><b>Missing:</b></span> <span style="font-size:100%;"> Mar 8, 2009</span><br /> <span style="color: rgb(255, 0, 0);font-size:100%;" ><b>Age Now:</b></span> <span style="font-size:100%;"> 7</span><br /> <span style="color: rgb(255, 0, 0);font-size:100%;" ><b>Sex:</b></span> <span style="font-size:100%;"> Male</span><br /> <span style="color: rgb(255, 0, 0);font-size:100%;" ><b>Race:</b></span> <span style="font-size:100%;"> Asian</span><br /> <span style="color: rgb(255, 0, 0);font-size:100%;" ><b>Hair:</b></span> <span style="font-size:100%;"> Brown</span><br /> <span style="color: rgb(255, 0, 0);font-size:100%;" ><b>Eyes:</b></span> <span style="font-size:100%;"> Brown</span><br /> <span style="color: rgb(255, 0, 0);font-size:100%;" ><b>Height:</b></span> <span style="font-size:100%;"> 3'4" (102 cm)</span><br /> <span style="color: rgb(255, 0, 0);font-size:100%;" ><b>Weight:</b></span> <span style="font-size:100%;"> 62 lbs (28 kg)</span><br /> <span style="color: rgb(255, 0, 0);font-size:100%;" ><b>Missing From:</b></span><br /> <span style="font-size:100%;">BLOOMINGTON<br /> IL<br /> United States</span> </p></td><td valign="top" width="25%" nowrap="nowrap"> <span style="font-size:100%;"><b> </b></span><br /> <img src="http://www.ncmec.org/photographs/NCMC1117673x1.jpg" width="192" height="240" /><br /> </td><td valign="top" width="25%" nowrap="nowrap"> <span style="font-size:100%;"><b>MICHAEL CONNOLLY </b></span><br /> <img src="http://www.ncmec.org/photographs/NCMC1117673a1.jpg" width="192" height="240" /><br /> <span style="font-size:100%;"><b>Abductor</b></span><br /> <span style="color: rgb(255, 0, 0);font-size:100%;" ><b>DOB:</b></span> <span style="font-size:100%;"> May 20, 1968</span><br /> <span style="color: rgb(255, 0, 0);font-size:100%;" ><b>Sex:</b></span> <span style="font-size:100%;"> Male</span><br /> <span style="color: rgb(255, 0, 0);font-size:100%;" ><b>Race:</b></span> <span style="font-size:100%;"> Asian</span><br /> <span style="color: rgb(255, 0, 0);font-size:100%;" ><b>Hair:</b></span> <span style="font-size:100%;"> Black</span><br /> <span style="color: rgb(255, 0, 0);font-size:100%;" ><b>Eyes:</b></span> <span style="font-size:100%;"> Brown</span><br /> <span style="color: rgb(255, 0, 0);font-size:100%;" ><b>Height:</b></span> <span style="font-size:100%;"> 5'8" (173 cm)</span><br /> <span style="color: rgb(255, 0, 0);font-size:100%;" ><b>Weight:</b></span> <span style="font-size:100%;"> 175 lbs (79 kg)</span><br /> </td></tr> </tbody></table> <table border="0" cellpadding="5" cellspacing="0" width="100%"> <tbody><tr><td valign="top"><b>Duncan and Jack were allegedly abducted by their father, Michael Connolly on March 8, 2009. A felony warrant for Kidnapping was issued for Michael on March 9, 2009. They may still be in the local area or they may travel to Hoffman Estates, Illinois in a grey Dodge Dynasty with license plates A326109. The photos shown above are a representation of what the vehicle may look like. Michael may go by the alias name Gung Yer Lee.</b></td></tr> </tbody></table> <table border="0" cellpadding="0" cellspacing="0" width="100%"><tbody><tr><td width="20%"><img src="http://www.ncmec.org/orglogos/NCMC_en_US.gif" oncontextmenu="return false;" width="145" height="90" /></td> <td align="center" valign="top" width="80%"> <span style="font-size:130%;">ANYONE HAVING INFORMATION SHOULD CONTACT</span><br /> <span style="font-size:130%;">National Center for Missing & Exploited Children</span><br /> <span style="color: rgb(255, 0, 0);font-size:130%;" ><b>1-800-843-5678 (1-800-THE-LOST)</b></span><br /> <span style="font-size:100%;"><hr width="30">LeRoy Police Department (Illinois) 1-309-888-5030</span></td></tr></tbody></table>ThePreemie Experimenthttp://www.blogger.com/profile/15882375368535807238noreply@blogger.com7tag:blogger.com,1999:blog-6205556462251851125.post-19287721717408905922009-03-11T20:55:00.004-05:002009-03-11T21:43:07.910-05:00Paige's Knowledge of Her Own Medical HistoryOver the past 2 years we've covered the topic of "how much should you tell your preemie about their medical history" a few times. I believe it's a personal decision but with Paige we have made her a part of her own care since day one. She has heard her medical history countless times and can pretty much repeat it on her own. She knows her current meds including dosage. We never drilled this information into her head. She has just heard it so many times that it is 2nd nature.<br /><br />If you would like to read the previous blog posts/comments on this topic, you can do so <a style="font-weight: bold; font-style: italic; color: rgb(255, 0, 0);" href="http://thepreemieexperiment.blogspot.com/2007/11/how-much-should-you-tell-your-preemie.html">here</a> and <a style="font-weight: bold; font-style: italic; color: rgb(255, 0, 0);" href="http://thepreemieexperiment.blogspot.com/2007/05/knowledge-of-birth-history.html">here</a>.<br /><br />Recently we changed doctors from a family practice doc to a pediatrician. I filled out all of the paperwork ahead of time (it's not a simple task when you have a preemie) and was less than thrilled when the doctor proceeded to ask all of the same questions that I had answered on the extensive paperwork. I was answering them as cheerful as possible, as to not start off on a bad note with the new doc, when Paige spoke up...<br /><br />"Wait Dr. XYZ, I do have an allergy to medicine. Mom, why did you tell her that I'm not allergic to anything?" <br /><br />I tried to hush Paige with the usual finger to the mouth but it didn't work.<br /><br />"Mom, duuuuuh! I can't believe you missed something! hehe" (she always thinks it's funny when she realizes that I have made a mistake-loves to rub it in my face too-lol)<br /><br />I shot her the glaring eyed mom look and then put my finger up to my mouth to hush her again. I figured she was talking about a reaction she had to a seizure medicine where she lost the ability to walk and see colors-after only one dose. "Paige, your reaction to the carbamazepine was due to an overdose on the doctors part. It was not an allergic reaction."<br /><br />I looked up at the doctor, still trying to smile through the questions that I've already answered.<br /><br />"Mom, I'm seriously allergic to Omnicef! DUH! Remember my full body hives? Remember those steroid shots I needed? Remember the doctor telling you to make sure I never have any 'cillins'? Remember Mom? " She then breaks out into hysterical laughter, turns to the doctor and says, "Maybe you better ask me the questions from now on."<br /><br />At that moment I was reminded of why we have always included her in her care. I was proud of her (even her snarky attitude-lol). I watched, in awe, while she answered the rest of the questions on her own (completely accurately I might add). She is such an amazing child!<br /><br />I beat myself up over the fact that I forgot such an important bit of information. My facial expressions must have made it obvious too because the doctor leaned over, patted my shoulder, and said, "It's ok. You taught her well."<br /><br />Ok, yes I learned a lesson. Asking those questions, despite the fact that I had answered them already on the intake form, was a good thing. I will never complain about that again!ThePreemie Experimenthttp://www.blogger.com/profile/15882375368535807238noreply@blogger.com22tag:blogger.com,1999:blog-6205556462251851125.post-5698663671423874682009-03-04T14:24:00.002-05:002009-03-04T14:47:55.682-05:00Hemangiomas and PrematurityOver the years I've seen discussions on preemie support group sites about hemangiomas. Since this is not a condition that my children have ever dealt with, I never bothered to research it. (I do remember there being a few preemies in the NICU with Paige who also had hemangiomas.)<br /><br />Recently I noticed that someone found this blog while searching for information on "hemangiomas in preemies". While I found it interesting that there may be a correlation, I never put much thought into it.<br /><br />Today I was reading<span style="font-style: italic; color: rgb(255, 0, 0);"> </span><a style="font-style: italic; color: rgb(255, 0, 0);" href="http://rlbatesmd.blogspot.com/2009/03/propranolol-for-hemagiomas.html">a friends blog</a> and there it was again... the topic of hemangiomas (and the use of propranolol). I was surprised to read that they are common in premature infants. <br /><br />I was even more surprised when I set out to investigate a bit further. There are many journal articles out there on the correlation between prematurity and hemangiomas.<br /><br />Here's one on the possible association of hemangiomas and ROP...<br />http://pediatrics.aappublications.org/cgi/content/abstract/peds.2007-0803v1<br /><br />Here's an article about the possibility of hemangiomas being linked to low birth weight...<br />http://healthlink.mcw.edu/article/1031002941.html<br /><br />I know this information probably comes too late for the person who found my blog while searching for info on hemangiomas and prematurity but I thought I would still put it out there in case anyone else needs it.ThePreemie Experimenthttp://www.blogger.com/profile/15882375368535807238noreply@blogger.com7