tag:blogger.com,1999:blog-69786770954365364302024-03-13T07:59:39.448-04:00Our Little VirginiaAlyssa Kenthttp://www.blogger.com/profile/05306014518870193189noreply@blogger.comBlogger286125tag:blogger.com,1999:blog-6978677095436536430.post-85271613511346610082015-07-27T12:41:00.001-04:002015-07-27T12:41:33.376-04:00Our Little Virginia is a Big Sister<div style="text-align: left;">
4 weeks ago today we joyfully welcomed Virginia's little brother into the world! He arrived via a scheduled c-section at nearly full term. Henry George was born on July 29th at 36 weeks 4 days weighing 6 pounds and 8 ounces and 19.25" long. </div>
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I am so thankful for a long, healthy and relatively boring pregnancy thanks to the TAC, lots of precautions, exceptional medical care, and lots of prayers. I did not spend a single day on bedrest and did not make a single trip to labor and delivery until delivery day. Still, it was not easy but it was so very much worth it. </div>
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Henry did spend his first day in the NICU for respiratory monitoring. He really was only there long enough for us to see some of our favorite nurses and doctors. It was disappointing to not hold him in the OR or bring him right up to our room, but we did our best to keep things in perspective and make the best of it. There was a certain beautiful irony to introduce Virginia to her brother in the same place where she fought so tremendously hard for her life. It was where we first became a family and where we became a family of 4. </div>
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We are adjusting well to life with Henry. We have learned that there are still some extra challenges with late term preemies but really those things just mean we are more tired (yawn) and are so so minor in relation to the tumultuous first month with Virginia. Breastfeeding troubles, sleepyness, weight gain, and wonky newborn screenings are the norm for babies born even a few weeks early. We are working through each of these things while getting to know our little guy and adjusting to life at home with 2 kids. Thankfully my Mom has living with us and helping with toddler entertainment, cooking, cleaning, baby rocking, and diaper changing. </div>
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Virginia absolutely adores her little brother and wants to help with everything! She is such a proud big sister and takes her role very seriously :) </div>
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We constantly are catching new Virginia-isms - "look at our cuddly little guy" "he's so cuuuuuuuute" "shh shh shh its ok buddy"</div>
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Henry has made our hearts so full and really is just the sweetest little guy.</div>
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Alyssa Kenthttp://www.blogger.com/profile/11648297430600081935noreply@blogger.com4tag:blogger.com,1999:blog-6978677095436536430.post-22282726488572423202015-06-26T13:22:00.000-04:002015-06-26T13:22:27.693-04:00Homestretch - Pregnancy after my Micro-Preemie<div style="text-align: left;">
I thought I would write a lot more here about pregnancy after preemie. My intentions were mostly selfish- I figured that writing here would again be my therapy, my way to think through things, and my way to deal with the challenges and emotions. Selfishly I haven't needed it, so I haven't found the time to regularly talk about this pregnancy or update the few people who still follow along here. Selfishly I have enjoyed keeping it all to myself, relishing in each day, enjoying all the things that we missed out on last time, and settling myself into the uncharacteristic zen that fills my subconscious during times of uncertainty. </div>
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This pregnancy has really just gone so well. I think there are a fair amount of people that are surprised we have (nearly) made it to a scheduled c-section, but honestly Heath and I are not surprised. We went into this with the expectation that we had done/ were doing everything we could to have a big healthy baby. It meant surgeries, treatments, hard decisions, sacrifices, and lots of appointments but it also meant that we went into this with equal parts bravery and hope. </div>
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There have been a few bumps in the road, a few moments of fear or panic, but generally we have just been counting down the weeks. Passing each milestone quietly with just prayers of thanks. We have a c-section scheduled for this Monday at 36 weeks and 4 days - exactly 12 weeks longer than I was pregnant with Virginia. We are hoping this little guy is ready for prime time, but know we are in the best place possible if he needs any assistance. I am feeling really great and wishing that I could go a few weeks longer, but have come to terms with the timing - knowing that it is the safest time for both baby boy and myself. </div>
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For now I am just enjoying these last few days of having him all to myself. I already know that he is pretty laid back, directionally challenged (breech), likes to give high fives and is a cuddler for sure. </div>
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Thank you all for cheering us on. <br />
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Alyssa Kenthttp://www.blogger.com/profile/11648297430600081935noreply@blogger.com0tag:blogger.com,1999:blog-6978677095436536430.post-46221699955098026432015-04-03T15:33:00.000-04:002015-04-03T15:33:25.660-04:0024 weeksA few days ago we officially reached our first milestone of sorts. <br />
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At 24 weeks pregnant I am:<br />
not in the hospital<br />
not on bedrest<br />
working<br />
acting mostly like a typical pregnant woman<br />
craving a margarita<br />
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At 24 weeks this little boy:<br />
has surpassed his sisters birth weight<br />
is very active in the evenings<br />
is very very loved by Virginia<br />
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After a pretty wild and scary first trimester, things have been surprisingly calm. I am hesitant to even write those words. However, I am trying my hardest to conquer my own fears, avoid the self protection and actually try to enjoy this pregnancy. Because hospital bedrest started at 21 weeks with Virginia, we are already getting to experience things that never happened last time. Maternity clothes, strangers acknowledging me as pregnant, glucose tests, and heartburn are all new experiences. I am still waiting for that exhale moment, but I don't think that will truly ever happen. In the meantime we are all just trying to enjoy this time as a family of 3 while we wait for this little boy to grow big for the next 12-13 weeks.<br />
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Virginia is doing great and is so excited for her little brother. She is blossoming at preschool and testing our patience all the time. She has perfected the art of negotiation and tantrums, but is also wonderfully helpful and sweet. She is still receiving OT and PT weekly, where she has been working on stairs, jumping, and improving her core strength and also attends a weekly gymnastics class. We always seem major strides in her gross motor skills in the spring and summer as we spend so much time outside, at the beach and on playgrounds. Here in Connecticut we are still experiencing the winter that wont quit and are anxiously awaiting some nice outdoor weather. <br />
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Alyssa Kenthttp://www.blogger.com/profile/11648297430600081935noreply@blogger.com3tag:blogger.com,1999:blog-6978677095436536430.post-8518097146863569102015-01-28T23:47:00.000-05:002015-01-28T23:48:23.681-05:00one big update<div style="text-align: left;">
So... Its been a few months. This gap was not for a lack of things to write about or a lack of life changes. I could blame it on lack of time or simply being overwhelmed, but thats sorta lame. </div>
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We bought a new house in October and spent 3 months renovating it, finding renters for our 1st home and moving. We are getting all settled into our new digs and couldn't be happier. It was a fun and exhausting process but a labor of love. Our new house truly feels like a home and we can't wait to make many memories here. </div>
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Right around the time that we started the renovations we also found out that we were expecting another baby! It was a long and frustrating but hopeful road to get to this point and we feel so very fortunate. The journey started with getting a <a href="http://virginiakkent.blogspot.com/2013/03/transabdominal-cerclage.html">TAC</a> in March of 2012 and had many twists in turns since then, all in an effort to prepare for as healthy of a pregnancy as possible. </div>
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There are no guarantees in life, especially in pregnancy and child rearing. We knew that, but we also knowingly went into this with open hearts. The idea of pregnancy after a micro preemie can certainly be a scary one, but something we never accepted as scary. I wish I could say that I truly trust my body (I don't) but I do trust that we have done everything we can to make this pregnancy a long and healthy one. There have been many doctors and many opinions that we have carefully sorted through, but now we simply wait and let the weeks pass by. </div>
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prayers, good thoughts, juju, karma ... whatever you throw around, we will take. We are so thankful for our tribe of family and friends who have been nothing but supportive. We are hopeful that this wild ride plays out as long and boring for the next 20+ weeks. </div>
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<br />Alyssa Kenthttp://www.blogger.com/profile/11648297430600081935noreply@blogger.com2tag:blogger.com,1999:blog-6978677095436536430.post-80983941697004798172014-10-22T22:21:00.004-04:002014-10-22T22:21:58.546-04:00Happy Birthday Virginia!3 years ago our lives forever changed.. all for the better. <br />
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Alyssa Kenthttp://www.blogger.com/profile/11648297430600081935noreply@blogger.com1tag:blogger.com,1999:blog-6978677095436536430.post-25920585687801078682014-10-20T23:56:00.001-04:002014-10-20T23:56:22.114-04:00approaching three<div style="text-align: left;">
Virginia will be three on Wednesday. THREE. let me say that again, T.H.R.E.E. years old. How in the world did that happen?! </div>
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She is old enough to understand that it is her birthday and she is so so so excited about it. That alone makes this time, which used to be tinged by much bitterness and pain, so joyous and exciting. </div>
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Her celebrations started on Saturday the 18th with a party that included 12 of her 2-3 year old friends and their parents and continued last night with a trip to the NICU to visit her night nurse and deliver some gifts for the babies currently fighting their battle. We continued today with a little celebration at preschool and we will finish up on Wednesday with just the 3 of us.. just as it all started. </div>
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What was not lost on me was irony that we started this string of celebrations exactly 3 years from the time that I went from "stable bedrest" on maternal special care to "imminent delivery" on labor and delivery. Those days are a complete blur thanks to 5 days of magnesium but with brief moments of such clarity. Moments that I will never forget. </div>
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Those 5 days were physically very difficult, but that paled in comparison to the mental anguish. In those moments I knew that every hour made a difference but I also knew that realistically we were in an unbelievably precarious position. There was a cloud of nervous anticipation so very thick in that labor and delivery room that week- it was veiled by hope and positivity but was honestly heavy and exhausting for everyone. </div>
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I thank god every day that Virginia and I had the strength to make it those "extra" days, but always wish it could have lasted longer. always. </div>
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That pain is part of her story and those 5 extra days are part of the celebration. So we celebrate. We also hug a little tighter these days, sing a little louder, and laugh a whole lot more. I wish that 3 years ago I could have known how joyous these 5 days of celebrating would be. </div>
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Virginia's first friends - October 2011 Yale NICU babies</div>
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night nurse Amy and those famous NICU doors</div>
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We also celebrated by buying a new house ;) </div>
<br />Alyssa Kenthttp://www.blogger.com/profile/11648297430600081935noreply@blogger.com1tag:blogger.com,1999:blog-6978677095436536430.post-59042732396687219332014-09-07T22:33:00.000-04:002014-09-07T22:33:57.828-04:00perception and memories<div style="text-align: left;">
We are in the throes of potty training. It is a delicate balance teetering toward a power struggle with my very feisty and stubborn girl. The tactic changes almost daily. There are stickers, praise, bribery, and yes sometimes ultimatums. One day last week as I was trying to get Virginia to focus on going number two, I agreed to play music for her on my iphone while she sat on the potty. Pharell's 'Happy' didnt get it done, neither did Katy Perry's 'California Girl.' The next song up was Phillip Phillip's 'home' which is our anthem of sorts, mostly because we have made several slideshows to that song. She immediately recognized the song and had a big smile on her face. Then she kept repeating a long phrase which initially I couldn't make out. After her expression became more serious I finally realized that she recognized the song as the one that is set to her slideshow. What she remembered though was "baby getting boo boo fixed at doctor." Mind you these are never words we have used while watching that video with her. The few times we have watched it we have always told her that the tiny baby in the pictures was her, that she was very small and sick, and that we loved her.</div>
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Clearly those images and that song stuck with her, but not in the same way that it has stuck with Heath and I. She clearly knows that the baby in the photos in the first half of that video was sick but she has no idea that it was her. She also clearly does not remember the 2nd half of the video where she is able to recognize more recent photos of herself. </div>
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It is a huge relief to me that at nearly 3 years old her memory is only that of sympathy and concern for the baby in the video. That she does not consciously or subconsciously remember anything from that time. We will always be open with her and we hope that she only ever looks at those photos and feels powerful for how far she has come and thankful for the medical care and prayers that saved her. I know those photos will always foster mixed emotions for Heath and I, but also believe that the same photos will empower her to be the mightiest and best person that she can be. </div>
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The same goes for this blog. I have always been cognizant that one day Virginia may read her story here. It has been a fine line to straddle and the older she gets the more aware I am of how she may feel about her story being 'out there.' I can only hope that she views these words in the same way that she views those earliest photos. I can only hope that she is proud of how resilient and blessed she is. I can only hope that she continues to do amazing things and changes peoples lives for the better. </div>
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And....She never pooped on the potty that afternoon.</div>
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<br />Alyssa Kenthttp://www.blogger.com/profile/11648297430600081935noreply@blogger.com0tag:blogger.com,1999:blog-6978677095436536430.post-64556773640974502542014-08-07T21:59:00.000-04:002014-08-07T21:59:42.508-04:00When breastfeeding can't come naturally - World Breastfeeding Week<div style="text-align: left;">
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Like many mothers of premature babies I had the odds stacked against me. Producing breastmilk would be no easy task but I was told it was of critical importance to the health of my baby who weighed about as much as a bottle of coke. </div>
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<i>I was only 25 weeks into my pregnancy. My daughter was not ready to be born and my body was not ready to produce breastmilk. </i></div>
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<i>My body was in shock. 4+ weeks of bedrest, a traumatic C-section delivery, and some serious internal hemorrhaging meant that my body had other things to tend to.</i></div>
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<i>I had to establish a supply with a pump. Every 2-3 hours, 24 hours a day. </i></div>
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Odds meant nothing to me though. We had already defied some odds and succumb to others. When I realized that providing breastmilk to Virginia was literally the only thing I could do for her for the foreseeable future, it became my most important job. An immensely tiring and painful job.</div>
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The monotony of assembling the cups, tubes, and plugs, followed by pumping a few drops, labeling bottles with time and date, cleaning said parts, and putting everything away was a far cry from the natural and instinctual experience that I had expected through the breastfeeding process. Nothing about pregnancy and motherhood at that point was what I expected, but the difference was that by providing breastmilk for Virginia I was providing her with the only natural thing left. </div>
<div style="text-align: left;">
<br /></div>
<div style="text-align: left;">
There were many moments where I doubted my ability to continue to pump. Clogged ducts, low supply, and stress all made me doubt whether I could continue the 7-8 time a day ritual. Thankfully I had a wonderfully supportive husband, some amazing nurses and lactation consultants, and a beautiful growing girl to keep me going. </div>
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<br /></div>
<div style="text-align: left;">
Then we got lucky. Virginia turned out to be terrible at handling a bottle. Like, really really bad. And scary. She choked, she desated, she turned blue, and she passed out. But she did none of that when we tried nursing. It was sort of shocking to everyone, including me and was just what I needed to keep going. And just what she needed in order to learn how to eat orally. </div>
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<br /></div>
<div style="text-align: left;">
For a full year both Virginia and I got to experience the most natural thing for us as mother and baby. It healed us and allowed us to bond. Breastfeeding ultimately went beyond the essential nutrition and antibodies that were so essential to her health while she was so very tiny and sick. She gave back to me just what I gave to her in those early days ... hope and healing.</div>
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the results of several months of hard work.</div>
<br />Alyssa Kenthttp://www.blogger.com/profile/11648297430600081935noreply@blogger.com0tag:blogger.com,1999:blog-6978677095436536430.post-49428189365477499072014-07-24T00:18:00.001-04:002014-07-24T00:18:29.995-04:00Mom Confessions<div style="text-align: left;">
I trick Virginia into getting out of the house by telling her that I see our neighbors cat. </div>
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<br /></div>
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Sometimes I just smile and nod when I can't hear/understand Virginia. </div>
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I have zero desire to potty train her. And she needs to be potty trained for preschool in September.</div>
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<div style="text-align: left;">
Breakfast is still painfully slow. If I am in a rush or just can't handle the morning torture we go to dunkin donuts. Somehow a donut get eaten without 4893572 distractions and I make it to work on time. </div>
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God bless ipads and elmos world. </div>
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God bless Daniel Tiger too.</div>
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God please spare us of Caillou.</div>
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Virginia can count to 10 in spanish and I cant. </div>
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She now knows when I skip pages in books. And calls me out on it. </div>
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Virginia still sleeps in a <a href="http://www.amazon.com/SleepSack-Cotton-Wearable-Blanket-Medium/dp/B001PGKPNK/ref=sr_1_1?s=baby-products&ie=UTF8&qid=1406175363&sr=1-1">sleepsack</a>. Yes she is too big for them. Yes I panicked when I realized that she could unzipper them herself. My plan for keeping her in her crib until she is 14 is foiled. </div>
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Now that Virginia is forward facing in her car seat she joyfully calls out things that she sees. Sadly her most common notations are Dunkin Donuts, the pizza place, shake shack and chipotle. She also panics if I drive in the direction of daycare on a "home" day. </div>
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I had Ginny "help" me garden a few weeks ago. In a span of minutes she was climbing the rose lattice and then brought me some dog poop. lovely. </div>
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<div style="text-align: center;">
Virginia - Kure Beach, July 2014</div>
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<br />Alyssa Kenthttp://www.blogger.com/profile/11648297430600081935noreply@blogger.com2tag:blogger.com,1999:blog-6978677095436536430.post-72484056588541860032014-06-29T23:28:00.001-04:002014-06-29T23:28:57.331-04:00back at it and life lately<div style="text-align: left;">
I used to wonder what happened to all the preemie blogs, as many seem to disappear when the kids become toddlers. </div>
<div style="text-align: left;">
<br /></div>
<div style="text-align: left;">
..that kid must have "caught up"</div>
<div style="text-align: left;">
..they had another baby</div>
<div style="text-align: left;">
..they've moved on</div>
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<br /></div>
<div style="text-align: left;">
Truth is, we are here at preemie toddlerhood and none of that is true for us. We have just settled into our normal and writing is no longer such an essential part of the healing process. It truly once was and selfishly that is why I wrote so consistently on this blog for so long. We are not necessarily busier and prematurity is no less significant in our lives, but I have began to prioritize other things. </div>
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I miss this though. I miss sharing our amazing little lady. I miss thinking and worrying outloud. I miss this community. </div>
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For now, I am just going to share some photos and anecdotes about life lately, but Ill be back soon with some new thoughts and a few projects :)</div>
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We are off on an airplane tomorrow for some much needed beach time.</div>
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newest virginia-isms:</div>
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"beep beep, ssscuse me cars"- anytime we are at a red light</div>
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"where my sunglasses?"</div>
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"gimeee that" & "I hold it"</div>
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<br /></div>
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latest favorites:</div>
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chipotle</div>
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the beach</div>
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Daddy</div>
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water table & the hose</div>
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helping cook</div>
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ipad</div>
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<br />Alyssa Kenthttp://www.blogger.com/profile/11648297430600081935noreply@blogger.com1tag:blogger.com,1999:blog-6978677095436536430.post-73119515104567716332014-06-16T13:28:00.000-04:002014-06-16T13:28:02.960-04:00Happy Father's Day<div class="MsoNormal">
Wow, what an amazing journey (cliché’s much?). I’m not sure I would have believed on my 1<sup>st</sup>
Father’s Day that my 3<sup>rd</sup> would be as cranky and tiring as it was for
both of us. It started with a 3 hour nap (that I wished I partook in) at 11:30
and ended at the beach and coming home letting her get as wet as possible
before dinner. Alyssa also had her
saying “Happy Father’s Day” all day, that sometimes would break her into
signing a “Happy Birthday” rendition of “Happy Father’s Day.”<br /><br /><o:p></o:p></div>
<div class="MsoNormal">
I remember people saying it the first time and being like,
you don’t know. Now, I’m realizing that
I do know and understand why people always say this. It’s a badge but really a way to connect with
other men knowing how little they have to do with the parenting and how their
loving wife ‘guides’ (I know there are more female readers than males, so I’ll
stay away from any other verb) them through the process. While I was exhausted (and seriously that
doesn't hold a candle to what Alyssa does every week), knowing where we've
been, I just started laughing when she went to bed.<br /><o:p></o:p></div>
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<br /></div>
<div class="MsoNormal">
At this point, Virginia is best outside or at the ‘beeech.’ She boxes us out of any useful activity
(cleaning, cooking, etc) with the skill of Charles Barkley and a sensible, ‘exxxcusse
me.’ Her tastes are all over the map, cheerios
from Stew Leonard’s are now her favorite for breakfast, just hold on for an
hour long session. She does eat as long
as it’s Dunkin Donuts. I’m not sure if eats fast because we take her to the Bridgeport location (because the coffee and
donuts are cheaper) or the crack they put in them so kids love them.<o:p></o:p></div>
<div class="MsoNormal">
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<div class="MsoNormal">
I do appreciate that she calls our room, Daddy’s room. I did not find funny when I was in the car the
other day and she said she wanted to go back to Mommy’s house (don’t worry we
didn't get a divorce). When asked were
Mommy sleeps, its Daddy’s room, in Mommy’s house. I swear she’s already caught on.<o:p></o:p></div>
<div class="MsoNormal">
She’s unfortunately obsessed with her iPad. It’s her go to when she’s ‘bored,’ we've set
ourselves up for this failure. We've had
a busy few months travelling and it’s the go to distraction in the car, I guess
we asked for it. Tuesday we get our
cable back, so maybe this is the right approach so I don’t have to share my huge
32” screen living room TV with Caillou.<o:p></o:p></div>
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<br /></div>
<div class="MsoNormal">
Also, it’s finally hitting me that I’m not going back to
school any time soon, thank god. It’s
great realizing some of the little things that I've missed, especially those
trips to Chipotle. You would think
Virginia was going to the Four Seasons, if she only knew. I also can no longer get away with, I have
homework and I won’t be able to get to painting the porch.<o:p></o:p></div>
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<br /></div>
<div class="MsoNormal">
So this fulfills my yearly post, no worries to regular
readers, I won’t be taking over the blog and talking to you about the nuances
of the 3-4 defense and why the Redskins really need to go back to the 4-3.<o:p></o:p></div>
<div class="MsoNormal">
This would have been more appropriate yesterday but too bad.<o:p></o:p></div>
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<br /></div>
<div class="MsoNormal">
To all the father’s out there, BobBob, Shawn, Pete, Damian
and all of my friends from college that now have kids, Happy Father’s Day, a
day late. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
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To my father, Happy Father’s Day, you've been an amazing
inspiration and I hope I can do half the job you were able to for our family.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Lastly, thanks to Alyssa, it’s always been trying and fun; I
wouldn't be able to do it without you.
Really Father’s day isn't so much for me but for the whole family,
although I do love the fact that anything stupid I do can just be chalked up to
Father’s Day.<o:p></o:p></div>
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P.S. I have no clue how I remembered the password for the
account but remember this Virginia when you don’t think your Dad is snooping at
your e-mail, Facebook or whatever other weird social media platform that will
be available to you.<o:p></o:p></div>
Heath Kenthttp://www.blogger.com/profile/07177163322506232676noreply@blogger.com2tag:blogger.com,1999:blog-6978677095436536430.post-58866421587130617032014-06-01T21:50:00.002-04:002014-06-16T15:12:59.649-04:00March For Babies Wrap Up<div style="text-align: left;">
Spoiler Alert.... It was another hugely successful year!!</div>
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<br /></div>
<div style="text-align: left;">
In total we raised just over $12,000 which put us up and over $30,000 since 2012. We are so incredibly thankful for all of our supporters. Whether you shared our story, or donated, or walked with us, or simply cheered us on. We are grateful for each and everyone of you. Please know that you are making a difference in the fight against prematurity and birth defects. </div>
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<br /></div>
<div style="text-align: left;">
We do what we do because another family raised these funds and raised awareness for us. We are keenly aware that our outcome could have been very different and most definitely would have been different without the research and treatments that were funded by the March of Dimes long before we got involved. </div>
<div style="text-align: left;">
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<span class="Apple-style-span" style="color: #37404e; font-family: Helvetica, Arial, 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 14px; line-height: 20px;">This year:</span></div>
<span class="Apple-style-span" style="color: #37404e; font-family: Helvetica, Arial, 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 14px; line-height: 20px;">We had over 70 walkers at 3 different walks.</span><span class="Apple-style-span" style="color: #37404e; font-family: Helvetica, Arial, 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 14px; line-height: 20px;">Our youngest "walkers" were 4 weeks old and our oldest was 80.</span><br />
<span class="Apple-style-span" style="color: #37404e; font-family: Helvetica, Arial, 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 14px; line-height: 20px;">We had 12 two year old walkers.</span><br />
<span class="Apple-style-span" style="color: #37404e; font-family: Helvetica, Arial, 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 14px; line-height: 20px;">We had hundreds and hundreds of donations ranging from $2 to $250.</span><br />
<div style="text-align: left;">
<span class="Apple-style-span" style="color: #37404e; font-family: Helvetica, Arial, 'lucida grande', tahoma, verdana, arial, sans-serif;"><span class="Apple-style-span" style="font-size: 14px; line-height: 20px;">We had 50 entries in our March Madness bracket challenge. </span></span></div>
<div style="text-align: left;">
<span class="Apple-style-span" style="color: #37404e; font-family: Helvetica, Arial, 'lucida grande', tahoma, verdana, arial, sans-serif;"><span class="Apple-style-span" style="font-size: 14px; line-height: 20px;">We collected nearly $1000 at shake shack (and ate a few burgers too!)</span></span></div>
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<span class="Apple-style-span" style="color: #37404e; font-family: Helvetica, Arial, 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 14px; line-height: 20px;"><br /></span></div>
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<span class="Apple-style-span" style="color: #37404e; font-family: Helvetica, Arial, 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 14px; line-height: 20px;">We will be back in 2015 and hope that you will join us! </span></div>
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<span class="Apple-style-span" style="color: #37404e; font-family: Helvetica, Arial, 'lucida grande', tahoma, verdana, arial, sans-serif;"><span class="Apple-style-span" style="font-size: 14px; line-height: 20px;"><br /></span></span>Alyssa Kenthttp://www.blogger.com/profile/11648297430600081935noreply@blogger.com0tag:blogger.com,1999:blog-6978677095436536430.post-47762464421867636562014-05-17T23:31:00.001-04:002014-05-18T19:45:47.380-04:00from the tiniest acorn grows the mighty oak<div style="text-align: left;">
Last year there was an incredible video that went viral in the prematurity community and beyond. Nearly 7 minutes of the beautiful and painful story of little Ward Miles captured the essence of the world of the NICU. Perhaps the most poignant is the first 2 minutes. There are no words and no music, simply the gentle hum of oxygen that percolates through all NICUs and the beautiful choreography of a mother getting to hold her precious tiny son for the first time. It is a moment perfectly captured and a moment that all of us that have spent time in the NICU can relate to. Whether it took a few hours to hold your baby for the first time or many weeks, the moment that you are able to embrace and reconnect with your ill child is one of immense emotions. The raw emotions of that moment are typically at a time where outcomes, good or bad, are completely unknown. The 'realness' of these moments in the Miles' video are why it was shared over and over again. It is why I shared it with my family and friends- for the first time I was able to convey the reality of the journey despite it not being my own. </div>
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The video goes on to capture those unexplainable moments, those moments that previously you would only understand if you stepped behind the sacred doors of the NICU. The twitchiness of a premature baby due to their immature immune system, the bags of TPN, The cheekiness of a baby who has finally hit 2.5ish pounds, the look of a mom peeking through the plastic walls of the isolette, and finally the ritual of Lindsay tucking in a more alert baby Ward before saying goodnight. Another night for her to head home without her baby. </div>
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If you haven't watched it, you need to. If you are struggling with helping friends and family understand what you are going or have gone through, share this with them. <a href="http://vimeo.com/78393869">http://vimeo.com/78393869</a></div>
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The Miles family is now using their reach to support <a href="http://www.grahamsfoundation.org/home.html">Graham's Foundation</a>, an organization that has touched and guided so many of us from the prematurity community. Click here to see an update from the them and learn all about the amazing tshirt/sweatshirt campaign that they have launched. </div>
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Please consider supporting Graham's Foundation by purchasing an <i>awesome</i> tshirt or sweatshirt at <a href="http://www.iheartgarments.com/campaign/benjamin-miller-graham-foundation">http://www.iheartgarments.com/campaign/benjamin-miller-graham-foundation</a> . </div>
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<b>"from the tiniest acorn grows the mighty oak" <i>Ain't that the truth! </i></b></div>
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Alyssa Kenthttp://www.blogger.com/profile/11648297430600081935noreply@blogger.com0tag:blogger.com,1999:blog-6978677095436536430.post-43066663799091048842014-05-01T23:14:00.000-04:002014-05-17T23:31:58.284-04:00This Club - Parents of Preemies Day Post<div style="text-align: left;">
This Club</div>
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So you are a member too? </div>
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I know you never wanted to join. You were probably devastated when you joined us. You had no choice, no opt out for membership, no unsubscribe. </div>
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There are no member cards or secret hand shakes, only our own language and abbreviations that immediately bind us as members. PDA, PIP, PEEP, CPAP, NEC, BPD, TPN, and ROP all roll off your tongue. Just saying the letters may trigger PTSD. You can count in cc's and can easily convert grams to ounces. You have willfully pleaded for O sats to go up, heart pressures to go down and blood gases to stabilize. </div>
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You have had a crash course in neonatology and semesters in cardiology, pulmonology, nephrology, gastroenterology and early intervention. This is knowledge that you never knew you would need, but have embraced it in order to be a better advocate for your child. </div>
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You know simultaneous joy and heartbreak. You have felt bitter and angry. You know that unique torture of leaving your child each night. You know the immense core shaking fear of watching your child straddle the line between life and death. </div>
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Your child may have "caught up." Your child may never "catch up." Or you may still be waiting for the other shoe to drop. </div>
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Like it or not you are a member of this club. </div>
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As a member you are strong, you are mighty, you are resilient, you are your child's voice, you are their best advocate. You are forever changed. </div>
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For one day relinquish the fear and guilt. For (at least) one day celebrate <b><i>you</i></b>. Celebrate the tremendous person that you have become and the tremendous person that has made you who you have become. Be proud of yourself - the caregiver, the pseudo MD, the advocate, the home nurse, the expert, the short order cook, and most of all the parent to an <b><i>amazing preemie</i></b>. </div>
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Please celebrate your membership in this club that you never wanted to join.</div>
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Wishing you a Happy Parents of Preemies Day on May 4th and every day. </div>
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<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"><span class="plainlarge" style="font-size: 14px; font-weight: normal; line-height: 1.4; text-decoration: none;"><i>Please support Parents of Preemies Day, a worldwide day of awareness produced by Graham's Foundation. Parents of Preemies Day recognizes the courage and commitment it takes to stay strong and resilient when premature birth turns a family's world upside down. Each year, 13 million babies are born prematurely across the globe and though medical breakthroughs continue to improve outcomes for preemies, experts are only now beginning to understand the intense psychological effects that premature birth has on moms and dads.</i></span><span class="plainlarge" style="font-size: 14px; font-weight: normal; line-height: 1.4; text-decoration: none;"><i>Here are just some of the ways you can celebrate Parents of Preemie's Day, whether you're a preemie parent or someone who cares about a family with a preemie:</i></span><span class="plainlarge" style="font-size: 14px; font-weight: normal; line-height: 1.4; text-decoration: none;"><i> </i></span></span></div>
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<li class="plain" style="font-size: 12px; font-weight: 100; line-height: 1.5; text-align: left; text-decoration: none;"><span class="plainlarge" style="font-size: 14px; font-weight: normal; line-height: 1.4; text-decoration: none;"><i><span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">Connect with other parents of preemies at the next #ParentsofPreemiesDay Twitter chat! Jump into the conversation using hashtag #ParentsofPreemiesDay to talk about how moms and dads can celebrate being parents of preemies.</span></i></span></li>
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Alyssa Kenthttp://www.blogger.com/profile/11648297430600081935noreply@blogger.com1tag:blogger.com,1999:blog-6978677095436536430.post-30445022255128342142014-04-17T22:13:00.000-04:002014-04-17T22:14:42.917-04:00Life after Early Intervention<div style="text-align: left;">
Early Intervention came to a bit of an abrupt halt for us last month. It had been on our minds for a bit to switch to private therapies, but we were far from making a decision or coordinating a transition. It became clear to us that Virginia was not going to qualify for an IEP through our school system at 3 (which is only 6 months away!), so it was the push we needed to switch over to community enrichment activities and private therapies. It does make me a little nervous to not be in the "system" anymore. I worry about whether or not she will need an IEP at kindergarden or beyond and how hard it will be to get that now that we are no longer on the train, so to speak. Virginia's needs right now mostly fall under physical therapy, but are not severe enough that they would impact her educational or classroom needs so thusly in our district she would not qualify for an IEP or services at this point. </div>
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So where does this put us? A little bit in limbo. A really great, but a bit overwhelming limbo. I'm fearful to miss something, but we are all very happy to be navigating things on our own. For now, and possibly for all spring and summer we are focusing on community activities that challenge Virginia physically. Naturally I think we will see a lot of progress again this spring and summer just because there are so many opportunities for her to blossom in her physical development in this nice weather. Playing on the sandy beach, climbing on the playground, and navigating our yard are all some of the best PT around! </div>
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We also go to weekly "my gym" class where Virginia is really challenged physically. She intently watches and imitates the other kids in class and really challenges herself. As her Mom, it can be tough to not compare in this environment though. Her coordination, cautiousness, shyness, and sensory quirks all become very obvious in these classes. Similarly, her determination, wit, ability to follow direction, and silliness also become obvious. These weekly classes have been a good starting point for us. We hope to try out swimming (or a more formal aquatherapy), a music/dance class, and hippotherapy at some point too. </div>
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The question now is when to add back in regular PT. Should she go weekly? Should she get OT too? Where is it going to fit into the schedule? Should we just take the summer off and see what happens? It will all get sorted out but we are not in a rush. The break has been really nice and to be honest I think it has been great for all of us. </div>
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So there is life after Early Intervention. It doesn't mean that everything is "all better." There is still work to do, but also a point for us to look back and see all that Virginia (and we) accomplished. Another transition of pride, progress and fear. A chance for us to regain more control. </div>
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2 amazing micropreemies at my gym together!</div>
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Swinging, Walking in the sand, and egg hunting all were our PT last week ;)</div>
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<br />Alyssa Kenthttp://www.blogger.com/profile/11648297430600081935noreply@blogger.com0tag:blogger.com,1999:blog-6978677095436536430.post-50342945242468541172014-03-29T13:03:00.001-04:002014-03-29T13:04:02.176-04:00March for Babies Update<div style="text-align: left;">
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">Our first March for Babies event is just 4 weeks away! Once again we continue to be so amazed and grateful for all of the support of Team Go Ginny Go!! We have raised nearly $4500 so far this year but still have a ways to got to surpass our total of $13,000 last year. We are well on our way though, and will soon add our contributions from our March Madness brackets, and our upcoming shake shack and garden catering fundraisers! </span></div>
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">For those of you that are able to join us on April 26th at Watkins Park or May 4th at Jennings Beach in Fairfield please sign up this week! We will be ordering shirts next week and want to be sure that we have one for each person that walks with us!! Please comment below or email me with sizes for any kiddos that will be joining us as well :) </span></div>
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">You can register at <span class="Apple-style-span" style="color: #37404e; line-height: 18px;"><a href="http://www.marchforbabies.org/virginiakkent" rel="nofollow nofollow" style="color: #3b5998; cursor: pointer; text-decoration: underline;" target="_blank">www.marchforbabies.org/virginiakkent</a> by clicking the "walk with me" button. Please let us know if you have any problems registering. And please consider sharing your fundraising link with your friends, family, coworkers etc :) </span></span></div>
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Back of the 2014 Shirts</div>
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<span class="Apple-style-span" style="font-family: Times, 'Times New Roman', serif;"><span class="Apple-style-span" style="color: #37404e; line-height: 18px;"><br /></span></span>Alyssa Kenthttp://www.blogger.com/profile/11648297430600081935noreply@blogger.com0tag:blogger.com,1999:blog-6978677095436536430.post-49642980075624993412014-03-15T00:39:00.001-04:002014-03-15T00:39:12.549-04:00update<div style="text-align: left;">
Things have been a little nutty around here lately (Heath has shingles, work is cray-cray, winter won't go away), so here is a good old fashioned Virginia update.</div>
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Virginia had her first haircut. Literally on a whim I decided that her mullet had to go and drove to the <strike>chuck e cheese</strike> children's haircut place on the way home from a playdate. In true Virginia fashion she screamed the entire time, including when the prize machine pelted her with a capsule containing a temporary tattoo. It looks great though and we even came home with a certificate with a <strike>very</strike> slightly creepy bag of hair attached. </div>
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We had our first real respiratory scare this week. She weathered her first 2 colds really well, but this one hit her quite a bit harder. It sorta came out of nowhere and escalated quickly. Had I been in a clearer state of mind we probably would have gone to the ER, but our middle of the night hazy state locked us into survival mode. After 5+ hours of coughing, a high respiratory rate and a tumble off of the bed, she finally settled down and we all got a little shut eye. By the time we got to the doctors she was still breathing pretty rapidly and retracting, but responded nicely to the nebulizer that they gave her in the office. So it has been a week full of lots of snuggles and inhalers. She is doing much better now despite having a pretty gunky cough. Is it spring yet?!</div>
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Today we met to review Virginia's most recent evaluations and presumably write her IFSP. During her testing last week, I was truly pleasantly surprised at how well she did. She was matching shapes, sorta naming colors, and appropriately identifying and verbalizing pictures. I fear that I spend so much time focusing on the worry of the week that I am missing out on all that she is able to do (that is a post for another day, though). Needless to say, I wasn't surprised when her report showed that at this time there are no longer any cognitive, speech or fine motor concerns!!! They did note that there were still some gross motor delays (also something that we already know). This was all <b>wonderful</b> news, but left us with some decisions to make. Ultimately we decided to discontinue Birth to Three (EI) services in and go completely to private therapies and community programs (mygym, music class etc). </div>
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I'm nervous but excited for this change. EI in our state is not free and is on a pretty costly sliding scale. Even if we choose all out of network therapists our monthly costs will still probably fall under what we were paying for our family fee in EI. Moreso, I really feel that Virginia will benefit from therapy outside of the home. Aquatherapy, hippo therapy, and big vestibular swings are just not possible in our home (although a pool and some horses would be nice!). </div>
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So, Im not sure where it is all headed but I am thrilled that she is in a place that allows us to make these decisions. Anyone else transition to different therapies? </div>
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Lastly, we are trying something new this year! We are having a March Madness Bracket Tournament for our March of Dimes team. $20 per bracket and money will be split between Team Go Ginny Go and the 1st &2nd place winners. See below for more info and join us! </div>
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<br />Alyssa Kenthttp://www.blogger.com/profile/11648297430600081935noreply@blogger.com0tag:blogger.com,1999:blog-6978677095436536430.post-31148526593449617902014-03-04T22:54:00.000-05:002014-03-04T22:55:04.429-05:00limbo<div style="text-align: left;">
Tomorrow we have Virginia's annual testing for birth to three (Connecticut's early intervention program). Im excited to see how she scores in the various developmental categories but am also realistic that they are just scores. They are nothing more and nothing less, simply a tool for us and her therapists to use to decide whats next. I am confident that it will show that she has made some tremendous progress in closing the gap, but I also fear that it may not pick up on the subtleties that impact or may impact her development. </div>
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This time of transition feels much like the end of our NICU journey. We know that there is still alot of hard work to be done. We straddle the line of being comfortable and happy with the support (nurses then, therapists now) and wanting some freedom, normalcy and privacy. And we are embarking on a new phase of parenthood where the responsibility of her care and development is more firmly placed on our shoulders. </div>
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Much like this same time 2 years ago, things are far better than what we could have imagined, but we remain weary of potential consequences of Virginia's traumatic and early birth looming at the next step. </div>
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Say it with me. Stay in the moment! Focus on the now! There will be no ground breaking discoveries tomorrow, hopefully just affirmation that we continue to head in the right direction. </div>
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One skill I am confident that she has mastered... watercolors ;)<br />
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<br />Alyssa Kenthttp://www.blogger.com/profile/11648297430600081935noreply@blogger.com1tag:blogger.com,1999:blog-6978677095436536430.post-7930011613852680972014-02-22T21:46:00.002-05:002014-02-22T21:46:46.912-05:00Happy Happy (Homecoming) Day<div style="text-align: left;">
<a href="http://virginiakkent.blogspot.com/2012/02/4-months-old-and-home.html">2 years ago </a> today our little 6 pound 10 ounce 4 month old came home from the hospital. That day was quite possibly the most normal part of our journey. Well maybe not normal, afterall it had been 4 months since delivery and I was wearing skinny jeans. We had stopped for coffee on the way to the hospital and we had a restful night of sleep the night before (it was my first time not setting the alarm for 1am and 5am to pump). Im pretty sure that is not how most people bring their babies home from the hospital, but it seemed normal to us and it is definitely a contender for the happiest day EVER. </div>
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2 years later February 22nd is still such a happy day. The mixed emotions, sadness and guilt that surrounds many other anniversaries is nowhere to be found today. Its a day to celebrate being whole and together and it is a day of immense gratitude. </div>
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Today the sun was shining bright much like her homecoming day. We left the house early to go to the children's museum for some fun and time in the much loved water room. I kid you not, as we got on the highway <a href="http://www.virginiakkent.blogspot.com/2013/11/spreading-word-making-impact-video.html">"Home"</a> by philip phillips came on the radio. Immediately Virginia called out from the backseat "Ginny song!!" Sometimes you just can't make this stuff up! It set the tone (pun intended) for a beautiful day of enjoying our best girl. </div>
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We celebrated today with an elmo balloon, a cupcake decorating party, lots of snuggling, and our annual porch photo :) </div>
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And because Virginia couldn't quite get "homecoming" to roll off her tongue this morning the rest of the day was known as and will probably forever be known as "Happy Happy Day."</div>
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ALSO, we have hit our goal and will be providing 31 meals for families at Yale's NNICU. Thank you to everyone who has supported our efforts. We know that the support to team Go Ginny Go will make an immediate impact for the families at YNHH and a lasting impact through the research and support of the March of Dimes. Click<a href="http://www.marchforbabies.org/virginiakkent"> here </a> if you are interested in supporting or walking with Go Ginny Go. We have just over 2 months until we will be walking for healthier babies. </div>
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cooking at the childrens museum</div>
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<br />Alyssa Kenthttp://www.blogger.com/profile/11648297430600081935noreply@blogger.com0tag:blogger.com,1999:blog-6978677095436536430.post-16969821150504125052014-02-18T00:20:00.001-05:002014-02-18T00:21:22.726-05:00winter blues and valentine fun<div class="separator" style="clear: both; text-align: center;">
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I usually hate to complain about things as mundane as the weather but I'm sure as many of you can relate, we are SO over winter. OVER it! We are doing our best to make the most of it, but are struggling to balance work, snow days, avoiding the sickies, and staying sane. Please come soon spring! </div>
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Life has been busy, fun, stressful and confusing lately. It seems like lots of good news and good things have been equally paired with tough news and stressful things. All is good though, there is lots of laughter in this house! That sums up the lack of blogging lately too... life has just gotten in the way. I hope that changes soon! </div>
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In the meantime, some of our good news!</div>
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Virginia passed her developmental eye exam with flying colors!</div>
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Heath has just 3 months left until he has his MBA diploma in hand!</div>
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My project appears that it will finally be entering the construction phase this month.</div>
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Virginia has been showing some interest in potty training (in her own time and in her own way I'm sure)</div>
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Our March of Dimes team has already raised over $1200 (but we could use more help. wink. wink. <a href="http://www.marchforbabies.org/virginiakkent">http://www.marchforbabies.org/virginiakkent</a> )</div>
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This little girl had an awesome valentines day! Once again she wore her little felt heart. <br />
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yup. That is the same one as in this photo! </div>
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And she had her very 1st valentine exchange with her fun bunch of friends. </div>
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<br />Alyssa Kenthttp://www.blogger.com/profile/11648297430600081935noreply@blogger.com0tag:blogger.com,1999:blog-6978677095436536430.post-32035855736634815822014-02-10T22:11:00.000-05:002014-02-10T22:26:01.334-05:00mom confessionsthey'reeeeee back!<br />
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some Mom confessions!<br />
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Before we start, look at this face! I die. She is lucky she is so darn cute. </div>
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I am so sick of sharing my food. I can't even eat my hard boiled egg in the morning without giving my little pants pulling, whining girl a bite. It is a hard.boiled.egg not a brownie. </div>
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Im convinced that Virginia is still going to be having crocodile tear temper tantrums at 7th grade drop off. I totally dread drop off every morning :( </div>
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<strike>Sometimes</strike> I wish I could have a tantrum a la Virginia when things aren't going my way. </div>
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My new hairstylist confirmed that I have a "few" grey hairs. I wonder how that happened?!</div>
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Speaking of hair, it is taking all my power not to cut Ginny's baby mullet. </div>
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I could only laugh when Virginia chanted "Mooooore Coffee, MY coffee" over and over while lunging for Heath's coffee cup through the grocery store yesterday.</div>
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There is really nothing better than a tea party with Elmo, Abby and Baby Stella.</div>
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We need a <strike>bigger house</strike> driveway, playroom and 2nd bath. Less confession, more desperate statement. </div>
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I was dumb enough to fall into the "sure, Ill let you out of the stroller as long as you hold my hand" trap. It ended like this:</div>
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<br />Alyssa Kenthttp://www.blogger.com/profile/11648297430600081935noreply@blogger.com1tag:blogger.com,1999:blog-6978677095436536430.post-54411230647357653672014-02-04T21:56:00.000-05:002014-02-04T21:56:15.932-05:00due date<div style="text-align: left;">
Today is Virginia's due date. There wasn't no anticipation of this date this year. Still when I arrived at work this morning after a hectic few hours of getting ready, packing lunches, a speech therapy session, cleaning off the car & daycare drop off, I realized that it was February 4th. On a date that was anticipated so much, it is hard not to dwell on all of the what-ifs. Its hard not to feel guilt. Its hard not to feel immense love and gratitude. </div>
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I think not only about her due date, but I also think about what a difficult time this was for us in 2012, still in the NICU and still with so many unknowns. I wish I could whisper in my own ear and give some peace. I wish I could take away the pain from those days. I wish things could have been different. </div>
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There was nothing special about today. Virginia's birthday was eons ago and we still have over 3 weeks until we will be celebrating her homecoming anniversary. What was special though, was the fact that today was just so typical. It was the type of chaotic working-mom-of-a-toddler day that I imagined back when February 4th was a day of so much importance and anticipation for me. </div>
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On second thought today was super special... it was Virginia's first day wearing a backpack! </div>
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While today is a bittersweet, we will be joyfully celebrating Virginia's homecoming on February 22nd. We will be celebrating this year by providing meals for current NICU parents at Yale New Haven Hospital. This is where we need your help! For every donation that is made to our March for Babies team and for every new walker that registers for our team between now and February 22nd, we will provide a meal for a parent struggling through their NICU journey. A meal that will not only fill their bellies, but also provide them more precious time at their child's bedside and hopefully give them a little hope and maybe even a smile. If you would like to help, please follow the link below. Every little bit counts and your donation will not only help fund the mission and research of the March of Dimes but also help a family that is living their difficult journey right now. <a href="http://www.marchforbabies.org/virginiakkent">http://www.marchforbabies.org/virginiakkent</a></div>
Alyssa Kenthttp://www.blogger.com/profile/11648297430600081935noreply@blogger.com0tag:blogger.com,1999:blog-6978677095436536430.post-78444664260393156402014-01-21T23:22:00.000-05:002014-01-21T23:22:01.121-05:00advice for myself<div style="text-align: left;">
This year I am serving as the family teams chairperson for the Connecticut March of Dimes. In addition to helping new and experienced family teams with their team development and fundraising, we have been also focusing on the heart of the mission. As a group we have found healing and gratification in giving back, mentoring and inspiring those that are the beginning of their journeys. Our latest project is a video that comprises dozens of parents sharing the advice that they would give themselves on the first day of their journey. Naturally I quickly thought of a few inspirational words, wrote them on paper and took a photo. Those words are exactly what I would tell myself on the first day of our NICU journey and are a great contribution to the video, but what I realized is that our journey started weeks before our NICU journey. </div>
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A pregnancy gone wrong journey. A journey that lead to our NICU journey. It started on September 21st 2011 at my 20 week OB appointment. The greatest amount of guilt that I still hold is within the 32 days between that appointment and the birth of my beautiful little Virginia. Pregnancy joy and dreams were replaced with complete fear in those days. </div>
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I can easily recall the details of those 32 days. </div>
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The braxton hicks contractions that I mistakenly thought was the baby rolling while at the gym doing my regular workout. </div>
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The nervous shakes and sweaty palms that I got when the ultrasound tech went to get the doctor after checking my cervix.</div>
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The utter devastation and panic that I felt while laying on the floor (naturally, rather than sitting in the chair) of the admitting office while waiting for my hospital room at 21.5 weeks pregnant. I feared the baby would would be delivered right there on that blue carpet . </div>
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The convulsions of fear that took over my body as I watched the flurry of activity surround me late in the night at the cusp of 24 weeks when they moved me down to labor and delivery for "immanent" delivery. </div>
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It is all so clear to me but blurry at the same time but 28 months later I am telling myself:</div>
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<span class="Apple-style-span" style="font-size: large;">"trust your gut"</span> because doctors and statistics are not always right.</div>
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<span class="Apple-style-span" style="font-size: large;">"fight for what you believe in"</span> because I still regret not pushing harder for someone to attempt a cerclage. The what-ifs are hard to get over. </div>
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<span class="Apple-style-span" style="font-size: large;">"stop googling"</span> because nothing that you find on the internet will bring you the peace and hope that you can only find in your heart. </div>
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and lastly...</div>
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<span class="Apple-style-span" style="font-size: large;">"It's not your fault"</span> because its not. <u> Its your body's fault but not your fault.</u> 28 months later and I am still coming to terms with the difference. </div>
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Alyssa Kenthttp://www.blogger.com/profile/11648297430600081935noreply@blogger.com0tag:blogger.com,1999:blog-6978677095436536430.post-75504650894102258642014-01-13T22:49:00.000-05:002014-01-13T22:52:09.932-05:00stones<div style="text-align: left;">
It seems as though that Virginia has always thrown us a curveball. That whole never trust a preemie thing? Totally applies to this kid! </div>
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While she was in the NICU I worried about an endless list of complications. I googled statistics. I asked lots (and lots and lots) of questions. I laboriously tracked her vent settings. I became obsessed with her (in)ability to take a bottle. I lost it when I found out that not only we were enrolled in cardiology clinic follow-up because of her PDA but also for a pulmonary fistula and pumonary hypertension. </div>
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The one diagnosis that I really never worried about - her kidney stones. Those were for adults, or so I thought. Her kidney function labs were always a little weird and she was never able to get on an acceptable long term diuretic, so instead she had lots and lots of lasix which in turn contributed to the formation of the kidney stones. </div>
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2 years later and we are still tracking those pesky and surprisingly large kidney stones. The largest stone is much too big to pass, in fact it is too large for a full grown adult to even pass. More concerning is that it is large enough that it could block the blood supply to the kidney if it migrated towards the artery. Her typically stable urine analysis was unfortunately worse than normal at our latest appointment as well. They are not sure what is causing this latest change, but we will go in for additional blood work and another urine sample later this week. I'm not sure where it is all headed, medications and surgery are both possibilities, but it doesn't look like we will be discharged from this specialty any time soon. We most likely will be adding urology to our specialist list as well.</div>
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Thankfully Virginia does not appear to be in any pain and we had plenty of good news at her appointment as well. She is back on the charts for her weight at 22.5 lbs (up 2 pounds in 2.5 months) and is up to 33 inches. She also dazzled all the doctors with her charm. </div>
<br />Alyssa Kenthttp://www.blogger.com/profile/11648297430600081935noreply@blogger.com0tag:blogger.com,1999:blog-6978677095436536430.post-85500220506112870852014-01-08T21:20:00.002-05:002014-01-08T21:20:59.627-05:00holiday photos and Virginia-ismsI didn't take nearly as many photos during our big holiday roadtrip as I would have liked due to the <strike>plague</strike> cold and sinus infection that I was battling. Here are a few photos, most of which were taken by our very talented friend, Carolyn. <br />
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Aunt Karen and tier 2 & 3 girls on Christmas Eve</div>
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Moma and Virginia on Christmas Eve</div>
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McKenna, BobBob & Ginny on Christmas Eve</div>
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Virginia, McKenna & Clare on Christmas Eve</div>
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Tearing into gifts on Christmas Morning</div>
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Rudolph Pancakes!</div>
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Ginny loved visiting the trains at Carolyn & Carl's house! choo choo!</div>
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Lobsters on New Years Day!</div>
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And finally some new Virginia-ism's</div>
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"Stop it Mommy" - said many times a day.... lovely</div>
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"A,B, C, D, E, F, G..mumbling P, Q, R, S, T, U,V,W,X, Y, Z"</div>
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"I go running"</div>
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"I Jump"</div>
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"Clap Mommy" "Clap Dada" - in response to anything she does or in tune to music on the radio</div>
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"Pony... Bow... Ginny Hair"</div>
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"Moma... Dada... Moma... Dada... Pippi...Papa... Nino... Mama... Moma... BobBob... Pippi.. Mama" - over and over while wanting to get out of her crib at bedtime. </div>
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<br />Alyssa Kenthttp://www.blogger.com/profile/11648297430600081935noreply@blogger.com1