tag:blogger.com,1999:blog-18065956464252660952024-03-04T23:32:42.375-08:00Austin Josiah's CDH StoryThis is the story of my son who was diagnosed in utero with a Left-sided Congenital Diaphragmatic Hernia.Nicholehttp://www.blogger.com/profile/15980318848671380082noreply@blogger.comBlogger24125tag:blogger.com,1999:blog-1806595646425266095.post-42046046628218804832010-03-29T21:12:00.000-07:002010-03-29T21:15:39.350-07:00Thank you all!Thank you all for your support! Your comments are helping me cope. For my friends who have brought dinners, we truly appreciate them. Some days I don't feel like getting out of bed, yet going to the grocery and/or cooking so this has been a huge relief!<br />
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Many of you are asking if there is something you can do for us. In lieu of flowers or donating towards a memorial, I am requesting people give back to an organization that helped me get through this journey. The Nayeli Faith Foundation covered my stay in S.F. to help ensure I delivered at UCSF and they provided food. This really helped keep focus on baby and not the financial stress. Please send donations to:<br />
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Nayeli Faith Foundation <br />
P.O Box 3192 <br />
Danville, CA 94526<br />
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Other organizations that have also provided us support are:<br />
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<a href="http://www.cdhdonations.org/">http://www.cdhdonations.org/</a><br />
<a href="http://www.breathofhopeinc.com/">http://www.breathofhopeinc.com/</a><br />
<a href="https://www.globalcdh.org/Donations.html">https://www.globalcdh.org/Donations.html</a><br />
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Your donations to any of these organizations, on behalf of A.J., would make me feel good knowing that I am able to pay it forward to another CDH family in need.Nicholehttp://www.blogger.com/profile/15980318848671380082noreply@blogger.com2tag:blogger.com,1999:blog-1806595646425266095.post-88159417765616307312010-03-29T00:20:00.000-07:002010-03-29T00:20:28.158-07:00Austin was born 3/24 at 6:09pm and gone 3/26 @ 12:15amHow does a baby who has people from all over the world praying for him not survive? Not only that but he was a big boy...8lbs 13.5oz and 22in long! The biggest guy in the NICU, yet the sickest. He was suppose to be strong. I really thought he could fight all the odds. This wasn't suppose to be this way. I have all the post delivery pains but no baby! I want to understand why this has happened. I feel like I should have gone to Dr. Kays in Florida. I just feel like something went wrong because A.J. was suppose to make it. I want to feel his little hands and feet, his breath against my neck, his heartbeat against mine. I need him!Nicholehttp://www.blogger.com/profile/15980318848671380082noreply@blogger.com11tag:blogger.com,1999:blog-1806595646425266095.post-23486160877764663142010-03-25T08:15:00.000-07:002010-03-25T14:49:42.341-07:00AJ arrived 3/24 a little after 6pmAfter 16 hours of labor, using cervical softeners, pitocin, and finally forceps to help get this little guy (actually big guy 8lbs 13.5oz) out, he finally made it. It was the hardest labor I've experienced but what else could I expect. This whole journey has been rough and I'd gladly suffer to bring my son into this world as safely as possible.<br />
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A.J. had a rough start from the beginning which was not a good sign. At first doctors didn't think he'd be strong enough to ventilate. After a few hours they did get him on a high frequency ventilator and Nitric Oxide. He took a turn for the worse and they needed to give him blood. Things just kept getting worse so the doctors had spoke to me about letting him go. I had to make a decision after no sleep for 38 hours or food for 24. I told them I wanted them to put him on ECMO to buy us some time. I had really hoped these decisions wouldn't have needed to be made so quickly. The first ECMO machine they put him on had air bubbles, they caught it quickly and suctioned them out, however, it took approximately 40 minutes to get him transferred to a new machine. During this time he had to be revived with chest compressions and will likely suffer brain damage. The only good news so far is that he is on the new ECMO and all the numbers look great. However this was a temporary ECMO so sometime today they will need to transfer him to a permanent one. He is at high risk for bleeding in the brain so they will be doing ultra sounds regularly to check on that. This has been an hour by hour process with many bumps in the road. I still haven't slept much as one could imagine but I hope to have some one on one time with AJ today to connect with him spiritually. I want to do what is best for him and I still feel there is HOPE!<br />
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Here is a picture of Austin Josiah, my hero, before ECMO....<br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhe6QrqsJs6ncuh_oylu8FiarZvDtjGQtwcgRIqENQctUaeoa9DnhK7WPGiNCLXPSImxEdOCWtMRKbMt_mIhmfd7-X5eipFdwUhBxG00vCsiXgYjGL1y4vz_DeFXocKF1dzwjsfi7vBiv1a/s1600/AJ+3_24.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhe6QrqsJs6ncuh_oylu8FiarZvDtjGQtwcgRIqENQctUaeoa9DnhK7WPGiNCLXPSImxEdOCWtMRKbMt_mIhmfd7-X5eipFdwUhBxG00vCsiXgYjGL1y4vz_DeFXocKF1dzwjsfi7vBiv1a/s320/AJ+3_24.JPG" /></a></div><div class="separator" style="clear: both; text-align: center;"><br />
</div><div class="separator" style="clear: both; text-align: center;">Here is our first picture together while he's hooked up to ECMO......</div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhV8puCHxbe__Mb5njM3h9QaAZ_ZRNf_dEx2IDfz73sCMbnsspcot1O4dnpytXsNCkkD1wLU8cvH8m3pCxwYkeeQrqk7VDfvCznmPaJf8hU96FV3qAiejyMVqNGjUnq41OCOMi4ymPv1BO1/s1600/Me+%26+AJ.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhV8puCHxbe__Mb5njM3h9QaAZ_ZRNf_dEx2IDfz73sCMbnsspcot1O4dnpytXsNCkkD1wLU8cvH8m3pCxwYkeeQrqk7VDfvCznmPaJf8hU96FV3qAiejyMVqNGjUnq41OCOMi4ymPv1BO1/s320/Me+%26+AJ.JPG" /></a>Nicholehttp://www.blogger.com/profile/15980318848671380082noreply@blogger.com14tag:blogger.com,1999:blog-1806595646425266095.post-90564614911857144482010-03-23T23:24:00.000-07:002010-03-23T23:24:03.699-07:00Settled in Hospital RoomAll settled in the hospital room. The have me on the monitors, IV is in, and they inserted something in me called Cervidil that will soften up my cervix so that it will be ready for delivery. It takes about four hours to work so they'll come back and check on me. After this they may start pitocin, depending on the results.<div><br />
</div><div>We have a pretty big room with an AWESOME view of the city! I am starring at all the lights right now and can't sleep. I am excited, yet scared. Our nurse is great. She is so accommodating it almost makes me wanna move in here...he he he. We just met with the neonatalogist and asked a few questions about what they'll do with Austin once I deliver. He will be immediately intubated and sedated so they can stabilize him to get blood work, x-rays, etc needed to determine how much lung power he will have. I believe his lungs will be better than they expect. I just feel it!</div><div><br />
</div><div>Well I should try and get some rest now just in case I'm in for many hours of labor. Goodnight :)</div>Nicholehttp://www.blogger.com/profile/15980318848671380082noreply@blogger.com6tag:blogger.com,1999:blog-1806595646425266095.post-45733533778526691172010-03-18T18:29:00.000-07:002010-03-18T18:29:35.049-07:00All settled in San FranciscoWe are settled in S.F. now. I had an NST yesterday and another tour of the NICU. There was a baby girl with CDH there that we got to see. It'll be a total different experience seeing our baby there. It seemed kind of crowded this visit. Hopefully they'll make room for A.J. next week :). We met with the social worker and she keeps reminding us of the negative, URGH! I just want to say, "I KNOW but I am not willing to hear that right now"! Instead I stay calm and just focus on positive thoughts. I have no choice. Not even the doctors can predict how well Austin will do. It's so hard to see him so active in the ultra sounds making breathing motions as if he's perfectly fine. I know that won't be the case when he arrives but I strongly feel he's going to surprise many.<br />
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I find myself a little emotional since I've arrived. I had planned to do some tourist stuff but just haven't been up to it, kind of spacey lately. Tomorrow I have another NST and an OB appointment. I am trying to gather up any last minute questions I may have. With my forgetfulness lately, I can't seem to remember what I wanted to ask and, of course, haven't wrote any of it down.<br />
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Next Tuesday evening at 8pm, 3/23, I will be admitted. I can't believe how quickly this date is approaching! I really appreciate everyone's support and PRAYERS. Please please keep them coming! We went to a little burrito spot for lunch today and the lady behind the counter asked about my baby and I briefly explained the situation. She was so sweet and said a prayer with me right there at the cash register. I've never been a big religious person but this experience has definitely brought me closer to God.Nicholehttp://www.blogger.com/profile/15980318848671380082noreply@blogger.com8tag:blogger.com,1999:blog-1806595646425266095.post-20197673894018737882010-03-12T21:22:00.000-08:002010-03-12T21:22:22.904-08:00Last of my appointments in my town, Tracy, CAToday was my last NST and Ultra Sound at the hospital in my city. I think the nurses are glad to be done with my little guy. He is ALWAYS a struggle to get a NST because he moves A LOT. It's never a quick visit for me. I am usually there for 2 or more hours trying to get a good reading for the doctor. It's going to be weird not delivering here because I have got to know the nurses and my OB/GYN and really like them! Next week I'll have two NSTs at UCSF and my first OB appointment with the doctor who will deliver Austin. Hopefully they'll make me feel just as comfortable as the staff here in town. <br />
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During my ultra sound today the tech took a picture that looks like Austin praying. It is precious! That is one great thing about all these appointments, I get tons of ultra sound pictures :).<br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhy0FEHP8-MDLpVyqTpzZm7uLC3a6mkjAU9HkPfy3m-tXEyPdFigDg9nvHwQ6Mg296PWIxWBqPEfO6t648VpGk92g9ijtwfbN3gwaRDWIOlr8OtGHeWKppIW2Egb8K21DxjF_lP3dktVf8U/s1600-h/AJ+Praying.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhy0FEHP8-MDLpVyqTpzZm7uLC3a6mkjAU9HkPfy3m-tXEyPdFigDg9nvHwQ6Mg296PWIxWBqPEfO6t648VpGk92g9ijtwfbN3gwaRDWIOlr8OtGHeWKppIW2Egb8K21DxjF_lP3dktVf8U/s320/AJ+Praying.jpg" vt="true" /></a></div>Nicholehttp://www.blogger.com/profile/15980318848671380082noreply@blogger.com2tag:blogger.com,1999:blog-1806595646425266095.post-69201972579210004292010-03-10T09:38:00.001-08:002010-03-10T09:38:54.259-08:00ONLY TWO MORE WEEKS!<span class="Apple-style-span" style="font-family: Verdana, Arial, Helvetica, sans-serif; font-size: 12px;">Until Austin arrives, boy how time has flown by! The other day I received some sad news about another CDH baby, Baylee Grace, that was born last month who didn't survive or as they say "grew her wings." I cry and pray for her family. I am very aware of the reality of this severe defect, yet I still can't imagine going through what her family must be going through. I have managed to stay mostly positive this whole time and I don't want to lose that.<br />
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On a happier note, I now have a place to stay in San Francisco next week. Thanks to "Nayeli's Faith" foundation, we will be able to stay locally the week prior to my induction in case I go into early labor. I am very appreciative of the support I am receiving through this foundation as well as other CDH foundations such as Breath of Hope, CHERUBS, and Global CDH. I have learned so much from them and the members. We are truly blessed to have so many people praying for us.<br />
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Thank you all! I will post another update once I get settled in S.F.</span>Nicholehttp://www.blogger.com/profile/15980318848671380082noreply@blogger.com4tag:blogger.com,1999:blog-1806595646425266095.post-70731084937688569322010-03-03T00:20:00.000-08:002010-03-05T17:52:08.956-08:00Baby Shower was GREAT!<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjIyugHDBloJ-x-INRAWVmCU-9onFK2EGSTol4wRC9Qzu_OS12bkeyEuufIqr8kk4v7c8uFw5-CgRQ73xZLrQpywjJ84KkEfHVD5lFPeX9RklDvlA-kUUMsKhxTqrTYNGLI4DdoqiPW-w5F/s1600-h/BS+pic+1.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" kt="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjIyugHDBloJ-x-INRAWVmCU-9onFK2EGSTol4wRC9Qzu_OS12bkeyEuufIqr8kk4v7c8uFw5-CgRQ73xZLrQpywjJ84KkEfHVD5lFPeX9RklDvlA-kUUMsKhxTqrTYNGLI4DdoqiPW-w5F/s320/BS+pic+1.jpg" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjQZVSMnAvX5mT5iuyqIdKHZ-1sirSBLYIDyZD5AprEzuKMvLwQwc_6jD5Zj3QcuCi7EVg4eraAiSxDfymqmCxeJFTQy1VMXIZnD81U5M6Cdh4wNe_dS5KSSM4PzXao_USnSk0-U4w0laLD/s1600-h/Memory+Box+and+BC+Holder.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjQZVSMnAvX5mT5iuyqIdKHZ-1sirSBLYIDyZD5AprEzuKMvLwQwc_6jD5Zj3QcuCi7EVg4eraAiSxDfymqmCxeJFTQy1VMXIZnD81U5M6Cdh4wNe_dS5KSSM4PzXao_USnSk0-U4w0laLD/s320/Memory+Box+and+BC+Holder.JPG" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhmCXHzixOV7kbERz0LPWwyTtrtue6qpia_uMgM4TGUm9vKBHzxkHK3EkO7RX95lOOTcBrAorVzTQpPKJaErOvSN3eQyaNl0EUAzsunXoSr069OIoDOQHXnR6SqsqYHrCU48ls0UeJ2u-Id/s1600-h/diaper+cake.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhmCXHzixOV7kbERz0LPWwyTtrtue6qpia_uMgM4TGUm9vKBHzxkHK3EkO7RX95lOOTcBrAorVzTQpPKJaErOvSN3eQyaNl0EUAzsunXoSr069OIoDOQHXnR6SqsqYHrCU48ls0UeJ2u-Id/s320/diaper+cake.JPG" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjxssOZqiUGWWdh_IDVqC1Wgc3i4Ssg5f1uRIy1jtvZRA8pdytjRTqxbg4DLm_LlOYaPpg2zJunY2ykONuLJ9qIDSTh5TihxJdxXy_OI3HO77iUFCrisHCNSfFNyLGcAR5C1fkkb302FUmq/s1600-h/cake.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjxssOZqiUGWWdh_IDVqC1Wgc3i4Ssg5f1uRIy1jtvZRA8pdytjRTqxbg4DLm_LlOYaPpg2zJunY2ykONuLJ9qIDSTh5TihxJdxXy_OI3HO77iUFCrisHCNSfFNyLGcAR5C1fkkb302FUmq/s320/cake.JPG" /></a></div><div class="separator" style="clear: both; text-align: center;"><br />
</div><div class="separator" style="clear: both; text-align: left;">I had my babyshower Saturday and it was nice. I got some great things for A.J. and it made me get excited for him to be here. I even got a little teary eyed when I saw all the wonderful presents from so many people who care about us. Still trying to figure out where I will stay the week prior to my induction. I only have two weeks before I leave to S.F. Time is flying by.</div>Nicholehttp://www.blogger.com/profile/15980318848671380082noreply@blogger.com2tag:blogger.com,1999:blog-1806595646425266095.post-72363331190236298972010-02-20T21:54:00.000-08:002010-02-20T21:55:52.285-08:00Latest Ultra Sound Picture of Austin Josiah<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgoSkF8e8_L4Bz72bOaJ70Xyn35cRfjDRtS4ZVKkCpxyTkOp7Ae2rEkEy1kVyjHPjPU_j0afWUsM3OSQ0HotRj9JT_f3FI9zAyjrfPnNQtRZ_CACn6h0POPtFmQvjrxJtPULZBMXM236Bjd/s1600-h/AJ+35+weeks.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" ct="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgoSkF8e8_L4Bz72bOaJ70Xyn35cRfjDRtS4ZVKkCpxyTkOp7Ae2rEkEy1kVyjHPjPU_j0afWUsM3OSQ0HotRj9JT_f3FI9zAyjrfPnNQtRZ_CACn6h0POPtFmQvjrxJtPULZBMXM236Bjd/s320/AJ+35+weeks.jpg" /></a></div>A.J. is starting to look more and more like a baby in his pictures. I can't wait to see and hold him :).Nicholehttp://www.blogger.com/profile/15980318848671380082noreply@blogger.com1tag:blogger.com,1999:blog-1806595646425266095.post-41456815837018632912010-02-10T14:07:00.000-08:002010-02-10T14:07:25.163-08:00Ready for Maternity LeaveWell I guess I spoke too soon in my previous post about my fluid levels being great. The last two NSTs show my fluid levels are high. This usually means the baby has abnormalities, which we know he does, so there really isn't much they will do about it for now. I guess it just means I get to feel even more like a whale and AJ has more liquid to play in (which he loves to do). So far I have managed to only gain 12lbs this whole pregnancy, 4 of the pounds in just these last two weeks (its the fluid & baby, right? ha ha). Anyway, these 4lbs have made a world of difference. I can hardly tie my shoes or get up out of our recliner. I'm starting to feel tired more and losing energy. I am so happy that next week is my last week of work. It will be nice to sleep in and only have doctor appointments to attend. I have to try and take advantage of this time before all the chaos begins ;). My mom joked with me and said "watch, you'll go into labor a week after leave." NOT FUNNY MOM!Nicholehttp://www.blogger.com/profile/15980318848671380082noreply@blogger.com2tag:blogger.com,1999:blog-1806595646425266095.post-75111895956328672742010-02-01T23:17:00.000-08:002010-02-02T13:21:14.588-08:00Wonderful video that made me cry yet gives me hopeSofia had the same CDH as my baby. Left Sided with 90% of diaphragm missing with stomach, intestines, and part of liver up. I pray that Austin Josiah will be a fighter like her! <br />
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<object height="300" width="400"><param name="allowfullscreen" value="true" /><param name="allowscriptaccess" value="always" /><param name="movie" value="http://vimeo.com/moogaloop.swf?clip_id=5626814&server=vimeo.com&show_title=1&show_byline=1&show_portrait=0&color=&fullscreen=1" /><embed src="http://vimeo.com/moogaloop.swf?clip_id=5626814&server=vimeo.com&show_title=1&show_byline=1&show_portrait=0&color=&fullscreen=1" type="application/x-shockwave-flash" allowfullscreen="true" allowscriptaccess="always" width="400" height="300"></embed></object><br />
<a href="http://vimeo.com/5626814">Sofia's CDH Story</a> from <a href="http://vimeo.com/user1024596">Jen Miller</a> on <a href="http://vimeo.com/">Vimeo</a>.Nicholehttp://www.blogger.com/profile/15980318848671380082noreply@blogger.com0tag:blogger.com,1999:blog-1806595646425266095.post-25808623668076121682010-02-01T18:58:00.000-08:002010-02-14T21:24:52.245-08:00Twice a week NSTFor two weeks or so now I have been going to the hospital in town to have a Fetal Non-Stress test (NST) done twice a week. NST is a non-invasive test performed in pregnancies over 28 weeks gestation. The test is named “non-stress” because no stress is placed on the fetus during the test. <br />
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Since I go into the hospital every Tuesday and Friday after work, I've been getting to know the nurses very well (too bad I won't be delivering there). When I arrive I try to peak around to see if any new babies have arrived. I just love newborns! The nurses weigh me (YUK) and then take me to a delivery room where they attach two belts to my abdomen. One to measure fetal heart rate and another to measure contractions. Movement, heart rate and “reactivity” of heart rate to movement is measured for 20-30 minutes, however, it's been taking longer since my baby moves a lot and its hard to get a full 20-30 minutes of constant heart rate. Last Friday I was there for 2 1/2 hours because they did an ultrasound in addition to the NST to check my amniotic fluid level. I was getting impatient and wanting out of there....can only imagine how bad it's going to be when I'm actually having AJ and having to be in the hospital with him for a very long time. Good news is my fluid level and NSTs have been great.<br />
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I am getting eager to start maternity leave. As I push week 32, I am noticing my energy level has dropped. I love to cook, however, I haven't even desired to do that lately. I also wonder if it's depression because I am not having a typical pregnancy. Usually at this time in a pregnancy, one would be decorating the nursery, picking out strollers, etc. I am doing some of that but there is so much more focus on the CDH that it's hard to maintain the "normal" excitement.<br />
<a href="http://s763.photobucket.com/albums/xx277/nkenton/?action=view¤t=AJ-1.jpg" target="_blank"><img src="http://i763.photobucket.com/albums/xx277/nkenton/AJ-1.jpg" border="0" alt="Photobucket"></a><br />
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AJ 34 WeeksNicholehttp://www.blogger.com/profile/15980318848671380082noreply@blogger.com0tag:blogger.com,1999:blog-1806595646425266095.post-26623246686248600622010-01-22T21:04:00.000-08:002010-01-23T20:16:43.600-08:002nd UCSF Appointment - NICU tourToday we went to UCSF for my follow up appointment. I had another ultra sound and AJ is approximately 3.7lbs now. He is growing quickly! After the ultra sound we met with a social worker and a neonatal specialist to discuss the care for AJ after birth. I guess they have to be very upfront but it sure does sound hopeless sometimes when they talk. I realize my baby has a very severe CDH but it would be nice to hear just a little bit of hope. Towards the end of the conversation the social worker started to come around and sound more positive. I think they finally got the picture that I'm not trying to hear the negative. I know the odds and have mentally prepared myself. I now want to focus on what can be done to save my child!<br />
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When we toured the NICU, we were surprised. It wasn't as bad as we thought. I have spent so much time reading about CDH babies that are real sick so I was prepared to see them in person. There were two babies with CDH in the NICU today. One baby was on the ECMO. He was lying there lifeless because while on the ECMO, they give the baby medicine that basically paralyzes him so the lungs can rest. The other baby had been there for 10 weeks. He was born premature and only weighed 3.5lbs at birth. Today he was 7lb 4oz. and had a nasal cannula and feeding tube. He looked great! I was shocked that a CDH baby born so soon would look so good. I'm not sure the severity of either baby as the parents weren't present to ask questions.<br />
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After the tour I met with one of the fetal team members. Unfortunately they had two emergency fetal surgeries today so I didn't get to meet more of the team. We discussed the date I would come in to be induced, March 23rd at 8pm. Hopefully all goes well and I will be delivering March 24th. I will be 39 weeks at this point. I hope to stay in S.F. the week prior just in case I go into early labor. The social worker said I wouldn't check into the Ronald McDonald house until after delivery. I have to check with her again to see if there is any way I can stay the week before as well so I don't have to pay for a hotel. I'm sure it'll depend on availability.<br />
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Here's a video clip of AJ yawning.<br />
<embed allowfullscreen="true" allownetworking="all" height="361" src="http://static.photobucket.com/player.swf?file=http://vid763.photobucket.com/albums/xx277/nkenton/VID00004.flv" type="application/x-shockwave-flash" width="600" wmode="transparent"></embed> <br />
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Definitions:<br />
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CDH - Congenital Diaphragmatic Hernia<br />
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LCDH - Left Sided Congenital Diaphragmatic Hernia<br />
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LHR - Lung to Head Ratio<br />
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NICU - Neonatal Intensive Care Unit<br />
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ECMO - Extracorporeal Membrane Oxygenation - A heart-lung by-pass machine that takes over the work of the heart and lungs.<br />
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NASAL CANNULA - A special tubing that is used to give oxygen through the nose, making holding and feeding easier.<br />
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NG-TUBE - Nasogastric Tube(aka feeding tube) - A plastic tube inserted through the nose into the stomach or intestines to aid in digestion when baby cannot eat by mouth.<br />
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</a>Nicholehttp://www.blogger.com/profile/15980318848671380082noreply@blogger.com2tag:blogger.com,1999:blog-1806595646425266095.post-75383356355562094862010-01-21T15:44:00.000-08:002010-01-22T18:10:28.160-08:0030 weeks - baby shower planning30 weeks now...WOW!<br />
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I remember with my other two children, my pregnancy seemed to last forever. Much different experience with this little guy. Time is just flying by! I assume that is because I know he is safe inside me and a part of me doesn't want him to come out because I know that is when all the scary stuff comes. Well I can't think about that. I need to enjoy these last two months. I've decided to have a baby shower next month, Feb. 27th. Even though I have family members willing to put it together, I can't help to get involved since I enjoy planning events. Plus, this will be my first baby shower where I know the sex of the baby. It's going to be a lot of fun!Nicholehttp://www.blogger.com/profile/15980318848671380082noreply@blogger.com2tag:blogger.com,1999:blog-1806595646425266095.post-81987782690112635352010-01-20T10:04:00.000-08:002010-01-20T10:15:55.126-08:00A night in pain - not related to pregnancyLast night was a rough night. My stomach started burning and then the pain moved into my back. I couldn't sit or stand comfortably. All I could do was pace and take deep breaths. I took some Tylenol and tried to relax but my body just wouldn't let me so I decided to go to the ER. Being pregnant does have it's perks! In the ER I was seen right away, nothing I've ever experience before! I was given some pain meds which eventually kicked in and calmed me down. Then the OB nurse came in to check on baby. I've had this severe stomach pain twice prior two being pregnant but in the last week, it's happened twice! Before I was given meds for an ulcer and then had an Upper GI but by the time I had the Upper GI, either the meds worked and got rid of the ulcer or there wasn't ever one and they just contributed it to Acid Reflux. They've even checked my gallbladder in the past and it wasn't that either. This time the pain was worse, maybe because baby is pushing on things, I don't know but it was unbearable and I never want to feel it again. The doctor came in and basically said stomach pain could be a variety of things and gave me some mylanta......typical ER experience for me! The burning was still present even though the pain meds helped the severity of the pain, especially the back pain. He then gave me a pill that prevents stomach spasms and another dose of mylanta, this time coated with some numbing substance. These seemed to help and I was able to rest. Good news is baby was okay through all of this. His heart rate was normal and I wasn't having contractions :). I knew it wasn't the baby but didn't know if the severity of the pain I was in could effect the baby. Guess I'll add this problem to the list of appointments I need to make. Fun never ends.....Nicholehttp://www.blogger.com/profile/15980318848671380082noreply@blogger.com1tag:blogger.com,1999:blog-1806595646425266095.post-68581150920926614872010-01-14T10:16:00.000-08:002010-01-20T10:35:42.835-08:00Where to deliver? Who to trust with my baby's life?This week has been rough for me as I'm trying to decide where I want to deliver. Earlier in the week I called UCSF and Stanford to get stats for their 2009 CDH deliveries. The nurse at UCSF was able to give me stats right away. She said last year they delivered 20 CDH babies, 11 survived and out of the 11 only 1 had an LHR of less than 1.0. This information was not very uplifting. The nurse at Stanford said she would get back to me and it's been two days and still not response :(. I am also trying to get into Stanford to meet with the pediatric surgeons, however, they said they are waiting for approval from my insurance. My insurance covers me at both hospitals so I'm not sure what the hold up is but this is definitely swaying me away from going to them.<br />
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I also emailed a doctor I read great things about, Dr. Kays, who is the Chief Pediatric Surgeon at Shands Children's Hospital in Gainesville, FL. I know this is VERY FAR from where I live but his stats show a 92% survival rate for CDH babies. He emailed me back stating he was in the process of bringing all of their data up-to-date (over 200 cases) but gave me the following info:<br />
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<blockquote>Last death in Aug '09, a child with chromosomal defect who was not repaired and had support withdrawn. Death before that was a 32 week preemie with CDH. Of their last 34 consecutive cases, 30 patients survived to discharge. These patients had the full gamut of severity from mild to very severe. He also stated he does NOT select his cases. 95% of his patients are prenatally diagnosed, and they take everyone who wants to come, mild, severe, whatever. Therefore their survival data are not biased by selection.<br />
</blockquote><br />
Now who could not look into this? It makes it so hard having this information on my shoulders. On one hand I feel like going to Dr. Kays will give my baby the best chance at life, on the other hand, UCSF is a wonderful hospital and is capable of making sure my baby has the best care. Going to Florida would mean coming up with money to go now for an initial consultation and then going back in a couple weeks to live for however many months it'll take to get my baby healthy enough to travel home. I also have my other two kids to think about and who need me and family/friends I will need for support as well.<br />
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What does a mother do? I'm so afraid that if I choose UCSF and baby doesn't survive, I will be thinking I could have saved him by going to Florida.Nicholehttp://www.blogger.com/profile/15980318848671380082noreply@blogger.com0tag:blogger.com,1999:blog-1806595646425266095.post-47901897053606617862010-01-12T17:56:00.000-08:002010-01-19T15:12:45.787-08:00Appointment with my regular OB/GYN & the High Risk OB/GYNIt had been a month since I last saw my regular ob/gyn. She went over my records from Stanford and said, "I'm so sorry Nichole" and she started to get teary eyed. Of course this set me off and we were both sobbing. She listened to the baby's heartbeat and went over some lab results I had. My Vitamin A and protein levels were low. She ordered some more blood work to check my glucose levels again.<br />
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I will continue to see her monthly until I fully transfer to Stanford and/or UCSF. I still need to tour the NICU facilities at both hospitals and meet with the pediatric surgeons at Stanford.<br />
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At the High Risk OB/GYN's office, they did another growth ultrasound. Baby is growing at normal rate, he's approximately 2 1/2 lbs now. I can't believe in just two months he'll be a full size baby! My stomach is going to really be popping out soon.<br />
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So far I've only told a couple close friends/co-workers at work (besides my boss) that I'm pregnant. It will be interesting to see how long I can go before it's just obvious. Who knows, I might be out on maternity leave before anyone finds out :). With everything that's going on, I haven't been enthusiastic about telling others. I try to stay buried in my work to prevent myself from crying. God knows I do enough of that at home. It's sad that I'm feeling this way but it's just still to hard to deal with.Nicholehttp://www.blogger.com/profile/15980318848671380082noreply@blogger.com1tag:blogger.com,1999:blog-1806595646425266095.post-67011720315632607552009-12-23T23:12:00.000-08:002010-01-19T14:10:29.287-08:00UCSF AppointmentUCSF emailed me my agenda for today's appointment. I have a fetal echo at 10am, an ultrasound at 1pm and then meet with the doctors at the Fetal Treatment Center when complete.<br /><br />The fetal echo was similar to the one I had at Stanford. It took a while for the tech to get all the views she needed for the doctor. Finally the cardiologist came in and briefly said "Baby's heart looks good, just squished" and left. Remember I still haven't had a doctor sit and have a one on one conversation with me about this defect and what all these things mean. I figured since I was going to meet doctors today that I would get that chance so I took what he said and ran off to my next appointment. The ultrasound went as normal. The tech had to do all the measurements again that had already been done at the high risk office and Stanford and I was patient. I was glad that they weren't making me do another MRI today because these appointments were taking a long time and I was feeling tired by now. After the ultrasound I went to the Fetal Treatment Center and was sent back to the ultrasound because the doctors wanted to see something. This time the doctors were present in the ultrasound. They were looking at the space between the baby and the placenta to see if there would be room to safely to perform fetal surgery. The space was very narrow. After we all went to a conference room (me, my mom, the ob/gyn, and one of the pediatric surgeons). The ob/gyn took the time to draw a diagram on the board to show me what is taking place inside my baby. FINALLY someone is talking to me in detail. I knew most of the info he was telling me but it was nice to have a professional tell me rather than reading stuff off the internet. What I didn't know were MY baby's stats. I was told that baby has an LHR of .74 and that baby's with LHR 1.0 and above have a 50% chance of survival, and baby's with LHR of .6 or below never survive. So my baby is somewhere in between. This news and the fact that baby has no sign yet of a left lung and barely any right lung wasn't good, however, I still see hope for survival!<br /><br />The pediatric surgeon spoke up about my options. I had made it clear that I didn't want to terminate so we didn't even discuss that as an option. She had mentioned comfort care. Basically they would do whatever to keep the baby comfortable and not put him on machines, etc. to fight for his life. She mentioned that sometimes we go through everything we can to keep these babies alive and it still doesn't work. And even if the baby survives, it may not have a good quality of life. I took in everything she said but knew in my heart that I just wouldn't be able to live with myself if I didn't keep fighting! Since it was the day before Christmas Eve, there weren't any other team members there to speak with so the conversation fell short and I drove home in deep thought. I kept wondering...."Why is this happening to me?" "Why must I make a decision for another beings life?"Nicholehttp://www.blogger.com/profile/15980318848671380082noreply@blogger.com0tag:blogger.com,1999:blog-1806595646425266095.post-35166328240870074422009-12-22T16:08:00.000-08:002010-01-19T13:12:07.631-08:00AmniocentesisToday I went in for my Amniocentesis. This is something I've never experienced before and wasn't sure what to expect. I was very scared. The nurse thought I was scared of the needle but that wasn't it at all. I was more afraid the procedure would cause me to go into premature labor and making chances of survival even worse for my little man.<br /><br />The needle went in and felt as I would have imagined. What I wasn't expecting was the thump and pressure of the fluid coming out into the tube. It was a strange feeling and I jumped a bit. I started to cry, again not because of the pain but because of the fear of going into labor. I was also very emotional because I was there going through this alone.<br /><br />Good thing it didn't take long and their weren't any complications...whew!!! Now I am home resting for the rest of the day while I await my appointment at UCSF tomorrow.Nicholehttp://www.blogger.com/profile/15980318848671380082noreply@blogger.com0tag:blogger.com,1999:blog-1806595646425266095.post-22054860793643314452009-12-17T17:04:00.000-08:002010-01-19T13:08:53.533-08:00Initial contact with UCSFAfter crying it all out, I decided to fight! I researched for hours online about this defect and gathered as much information as possible. I read a story of a baby "Abram Friend" who was born in Cincinnati who also had LCDH and what steps the surgeons took to save him. I was impressed. I also researched fetal surgery and decided to make an appointment at UCSF to pursue it. I called UCSF and spoke to the nurse about my situation. She took my information and said that I was too far along to have the fetal surgery since I was going to be 28 weeks during Christmas week and the surgeon was out for the holidays until Jan. 4th. Also, to have the fetal surgery, you had to have an Amniocentesis w/results prior to surgery which I hadn't had. I was very sad and again feeling all hope is against me.<br /><br />Then I remembered that my due date from Stanford was quite a bit earlier than the other doctors' had for me. So I called UCSF again and this time got another nurse. This nurse was AWESOME! She had me get all my records from this pregnancy faxed over and appeared to be looking into my case further to see if there is anything they can do. In the meantime, I decided to go ahead with an Amnio just in case this nurse was able to work something out for me. The nurse also set me up to meet with the surgical team at UCSF the following week (day before Christmas Eve). I was impressed how quickly she was able to get things done. It was nice to feel like someone is working for you and not against you. So now I have an appointment for an amnio Dec 22nd and an appointment at UCSF Dec 23rd. No time to think about Christmas!Nicholehttp://www.blogger.com/profile/15980318848671380082noreply@blogger.com0tag:blogger.com,1999:blog-1806595646425266095.post-53442844336317309772009-12-14T16:59:00.000-08:002010-01-19T13:03:22.850-08:002nd Visit with High Risk OB office (MRI results day)As I was getting ready for my appointment to meet with the high risk doctor who referred me to Stanford and did my first level II ultrasound, the phone rang. It was the Pediatric Radiologist from Stanford. He told me that he received my fetal MRI results and it's worse than they thought. Most of the baby's liver is up in the chest as well as the stomach and intestines. Since the liver is a dense organ, it doesn't allow any room for the lungs to develop. He mentioned I could terminate the pregnancy if I chose to but the only place that will do terminations this far along is in L.A. Just by him saying that, I lost it. I felt like there was no hope. I was crying so hard that I couldn't hear anymore nor talk. I quickly got off the phone and cried until my appointment which was a couple hours away.<br /><br />By the time I arrived to my appointment, I was numb. The doctor who saw me was not the same doctor I saw last time and didn't seem to have his information correct. For example, he said heart was squished to left and thought maybe the hernia was a right sided hernia, etc. etc. I told him that Stanford called with the results and confirmed heart squished to right and hernia was left sided. I was now confused and didn't know where to go next.Nicholehttp://www.blogger.com/profile/15980318848671380082noreply@blogger.com0tag:blogger.com,1999:blog-1806595646425266095.post-47472347780191484492009-12-09T19:21:00.000-08:002010-01-19T11:24:51.137-08:00Stanford AppointmentHad my appointments at Stanford today. First an ultra sound with the tech and then three high risk ob/gyns joined to take a look. Doctors could see the stomach up in the chest and see that the heart was squished all the way to the right side of the chest, however, they couldn't see any other organs up there. One doctor said for the heart to be squished so much that there must be more up there and that the MRI would show us.<br /><br />After that I had my fetal MRI. This was scary. I had never had an MRI so I wasn't sure what to expect. They put me into this huge machine and I had to lie completely still for an hour. They kept having me take deep breaths in and hold it for short and sometimes long periods of time. I handled it well but it's not something I'd want to do again.<br /><br />Next I had a fetal echo-cardiogram. By this time I was irritated. I felt I had been poked and prodded at so much already and I was hungry and tired. First a trainee looked at the baby's heart, then after an hour or so he got his supervisor, then the doctor, then the director of the department came in. They seemed to struggle getting a view of the pulmonary artery, however, all other components of the heart were working fine so they assume that one is as well. I will have to have another echo-cardiogram though to confirm. I was impressed how they didn't give up and tried their best to get all the data possible.<br /><br />I was at Stanford Hospital from 9am - 4:30pm. I was hoping to meet a pediatric surgeon and see the NICU but it was too late and I just wanted to eat and get home. At this point, I still haven't had a doctor sit down with me and explain this defect in detail. I think each doctor probably thought the other doctor had done so. However, I had already read so much online that I didn't necessarily "need" that talk but still felt it should be done. I go back to the other high risk doctor who is closer to home from me next week. Hopefully he'll have the MRI results by then and I can get some more information on "my" baby's condition.Nicholehttp://www.blogger.com/profile/15980318848671380082noreply@blogger.com0tag:blogger.com,1999:blog-1806595646425266095.post-5055257625752446662009-11-23T22:18:00.000-08:002010-01-19T14:31:39.940-08:00Level II Ultrasound<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgvPdhaB3-m67Kq4oHEgJZ9DFHkOjQDePoX2whyphenhyphenisM-0VGi6gUR97CjNZnzXlqL3rVubW5UzpmPcWst7mVsxeWZQ-AMBbsal4I8KVAtlqqrf4SiiErmDwy2f0X8cwAMoWgrB3AmnY7FN8zI/s1600-h/IMG00309.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgvPdhaB3-m67Kq4oHEgJZ9DFHkOjQDePoX2whyphenhyphenisM-0VGi6gUR97CjNZnzXlqL3rVubW5UzpmPcWst7mVsxeWZQ-AMBbsal4I8KVAtlqqrf4SiiErmDwy2f0X8cwAMoWgrB3AmnY7FN8zI/s320/IMG00309.jpg" /></a><br />
</div><div style="text-align: center;"> AJ kissing the placenta<br />
</div><br />
Today was my appointment with a high risk pregnancy doctor for my level II ultra sound. I am 23 weeks. It was confirmed baby has a Congenital Diaphragmatic Hernia. Ultra sound showed stomach up in the chest area. Dr. is referring me to Stanford for follow up testing so that does tell me this is a big deal.<br />
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I'm still learning about this "never heard of" defect and have so many questions. I'm not sure if I should be worried or not. From what I've read online, some cases are okay and some or deadly.Nicholehttp://www.blogger.com/profile/15980318848671380082noreply@blogger.com0tag:blogger.com,1999:blog-1806595646425266095.post-43640650171354299562009-11-13T22:00:00.000-08:002010-03-03T00:15:50.368-08:00When I found out my baby was sick<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjc-IHv3u5e90gKbT5JhE4ucKUXDZfNtk22YC5C7BUa37It-N9HIvD3j-zxA3-lbaCbPT_9z3tHwm6ig7XKSZRIlzjAeRwtxoVbJcAg7cyCpEKHNlv5UXp7P484QtoI5ZciRBFGjp7mvxdg/s1600-h/AJ+Wee+Wee.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" kt="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjc-IHv3u5e90gKbT5JhE4ucKUXDZfNtk22YC5C7BUa37It-N9HIvD3j-zxA3-lbaCbPT_9z3tHwm6ig7XKSZRIlzjAeRwtxoVbJcAg7cyCpEKHNlv5UXp7P484QtoI5ZciRBFGjp7mvxdg/s320/AJ+Wee+Wee.jpg" /></a></div>Today I had my ultra sound to find out the baby's sex. IT'S A BOY! Which is what I wanted and already felt I knew since I had a dream I was having a boy.<br />
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A few hours after my ultra sound, my ob/gyn called me. It was a Friday afternoon (Friday the 13th at that!) and she wanted me to come see her Monday. I just knew something was wrong and demanded she tell me over the phone. She then told me that it looks as though baby has a hernia but we'll need to have a level II ultra sound to confirm....and not to worry. Well of course I WORRIED and researched fetal hernias online. I saw some references to Congential Diaphragmatic Hernia but thought, "No, that can't be the same type of hernia she's referring too?" I was thinking more along the lines of a testicle hernia or something like that. But I was still anticipating my appointment for the level II ultra sound to confirm.<br />
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What is Congenital Diaphragmatic Hernia (CDH)?<br />
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Congenital means "born with" and a hernia is a problem where something goes through a hole it is not supposed to. The hole is in baby's diaphragm. The diaphragm is a muscle that helps us to breathe and keeps the organs in the abdomen from going into the chest cavity.<br />
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This link provides a good description of CDH:<br />
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<a href="http://www.childrenshospital.org/az/Site476/mainpageS476P0.html">http://www.childrenshospital.org/az/Site476/mainpageS476P0.html</a>Nicholehttp://www.blogger.com/profile/15980318848671380082noreply@blogger.com0