tag:blogger.com,1999:blog-13952249618504955952024-03-12T22:47:58.270-04:00Penny, the baby girlA blog about my daughter growing up and facing the joys and challenges of growing up with Down syndrome and Tetralogy of Fallot while enjoying the love of a rough older brother. (Look how purple her feet were before her heart repair.)Maureenhttp://www.blogger.com/profile/08653413286650360934noreply@blogger.comBlogger282125tag:blogger.com,1999:blog-1395224961850495595.post-49696690196587948152010-05-28T22:49:00.000-04:002010-05-28T22:50:11.115-04:00Penny Turns Three!!<span class="Apple-style-span" style="font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 11px; color: rgb(51, 51, 51); line-height: 14px; ">Three years ago today, it was Memorial Day 2007. I opted to stay inside and rest while my husband and my son went off to spend the day with Scott's family. I know they swam in the pool and had lots of fun. Around 11 am, I got an itch to organize everything. I cleaned out the cabinets under all the sinks. I emptied out the linen closet (something that hadn't been done in the three years we lived here); then organized the items back in. Around 2 pm I started feeling hungry and I was tired of cleaning so I went to my mother's house where she was also hosting a BBQ.<br /><br />Ah, my last day of being a mother to 1 and I didn't even spend it with my son. After a few hours with my family I decided to clear out. I still had a couple of small items that I wanted to have ready in my bag in case the D-day came so I swung by Stop and Shop. Oh, how happy I was, strolling down the aisles thinking about how my new baby would be. I didn't even know if I was having a girl or a boy.<br /><br />Once I was home, I relaxed, checked my bag again. Then, at about 9 pm, I started to feel what I thought were contractions. Don't ask me why, but I thought to myself, "oh boy I better eat before this gets serious because who knows when I will eat again, and anyway, this might not really be labor." So I reheated myself some turkey meatloaf and cauliflower. I tried to rest, but the contractions were nagging me and I couldn't get back to sleep. At midnight, I called my ob/gyn's office, I was asked to call back when the contractions were closer together. At 2 am, they were closer together, so I called again. I was instructed to go ahead and meet them at Manchester Hospital. Before Scott and I got our stuff and our son together, it was almost 3 am! We were almost to the hospital when we realized that we forgot the digital camera, so I made Scott turn around. I continued to moan and cry out, and my sweet 4 year old son asked me to "stop making so much noise." I love him!<br /><br />We dropped Nathaniel off with my mother (2 blocks from the hospital literally, so it made more sense to bring him to her) and we went to meet our new child. During my entrance exam at 3:30 am, I was told I was 6 cm and I was quickly assigned a room. By 5 am I was ready to push!<br /><br />Our child was not born until almost 7 am due to the fact that I think she was coming down face up instead of face down. The back pain was pretty much unbearable and I couldn't find a position that seemed helpful. You see, I opted against an epidural for both my children. But finally she came and a sweet child was put on my belly.<br /><br />Those eyes and that small mouth instantly revealed her secrets. I didn't even know if I had a boy or girl and someone reminded me to check between her legs and announce the news. It felt like I was going through trained motions, but I knew there was some devastating news to share, and I just couldn't. I just couldn't bring Scott down. And what would he think of me if I had been wrong? So, I quietly said, "Look, she's a girl." There was no excitement in my voice, no overwhelming joy like I had for my first born. My first born. . . I thought back to when I had him and how the first thing I did was kiss some slimy stranger newborn all over his head and tell him how much I loved him. I tried to do the same thing for my daughter. I kissed her once, and I told her I loved her, but I know it didn't sound convincing.<br /><br />Soon, before we had even named her, some nurse told us that it seems our daughter might have Down syndrome. No one would know for sure until the results of a blood test came back, but the nurse felt pretty confident of her diagnosis. Scott and I stared at each other. We asked to hold her some more. We were reminded that a name might be appropriate. Scott told the nurses the name that we had planned. It seemed wrong, we had planned that name for a different baby, but it was the only girl name we agreed on, so this new baby was then named Penelope Ringrose.<br /><br />I focused on doing the motherly things I was supposed to, so the next thing to cross off my list was breastfeeding. Scott and I seem to remember that she latched on pretty well. I nursed on both sides and then cuddled with her until a nurse asked to take her back so they could look her over again.<br /><br />A couple of hours later a neonatologist walked in and told us that our newborn had some serious cardiac problems because she was unable to sustain her blood oxygen levels. I truly thought that the next words out of his mouth was going to be "We did everything we could, but she is gone." I choked back tears waiting for bad news, but instead, I learned that she was being sustained and that she would need to be transferred to Hartford where she would get a better look and possibly a surgery very soon if needed.<br /><br />At noon, when she was only five hours old, a team from UConn, took my daughter away to transport her to Hartford Hospital/CCMC's NICU. Scott followed them and I was left alone. I tried to sleep, and I may have for a little bit. It was hard and I was depressed. I could hear the other babies crying for their mothers through the hallway, but I didn't have my baby. I ended up getting discharged at 7 pm, after the nurses made me eat a filling dinner. It was so crazy to think that I was only twelve hours postpartum and I was going across two towns to see my new girl.<br /><br />Scott picked me up and drove me to Hartford to check everything out. It was so surreal. I was tired, my eyes were puffy from all the crying I did, and I didn't have any clothes that fit me. I also didn't have my baby with me. I will never forget that first trip to the fifth floor, it was dark and quiet on the floor so that the babies could sleep. I scrubbed in and met some professionals. I finally saw my daughter on her warming tray. She was bright red and she looked so irritated. She kept squeezing her already puffy eyes shut and sometimes that made her eyelids flip inside out. Every few moments she would have a sad trembling lip and attempt to cry a little. She seemed like such a stranger, but my heart really did go out to her. What an awful way to start your birthday! I thought.<br /><br />Well, it really didn't take long for me to fall in love with her. It especially helped when I was allowed to hold her again and also, try to nurse her again when she was ten days old. She ended up having surgery when she was 6 days old to correct a heart defect and she recovered so well. Instead of asking, why me? Why was a burdened with a disabled child? I wonder why I was blessed with such a perfect being. I truly feel so lucky to have been blessed with her.<br /><br />HAPPY BIRTHDAY MY LITTLE PRINCESS. I know that this year is going to be incredible for you. School will be a challenge, but you will overcome and exceed everyone's expectations!! I love you!</span>Maureenhttp://www.blogger.com/profile/08653413286650360934noreply@blogger.com3tag:blogger.com,1999:blog-1395224961850495595.post-54203504684159752872010-05-06T20:19:00.004-04:002010-05-27T09:41:47.571-04:00Go Me!!You may remember back in <a href="http://babygirlpenny.blogspot.com/2009/01/veni-vedi-veci.html">January of 2009</a> that I took my GRE's because I was considering going back to school to get a Masters. Well, I have been a busy girl since I disappeared last October. I applied to UConn graduate school. Their West Hartford campus offers a one year accerated teachers program that will award me with my Masters as well as my teacher's certification in one year. You can <a href="http://hartford.uconn.edu/tcpcg/">click here </a>if you are interested in the program details. My first summer course begins on June 1st and I am going crazy with stress.<br /><br />Today, I received notice that I also was awarded a teaching grant for $15,000!!! That amount will go along way to paying off the bill for tuition. I'm so so excited. In the Fall of 2011 I will be teaching high school math baby!Maureenhttp://www.blogger.com/profile/08653413286650360934noreply@blogger.com1tag:blogger.com,1999:blog-1395224961850495595.post-77042141222436540872010-05-04T14:06:00.003-04:002010-05-04T18:51:45.405-04:00A lot to think aboutPenny had her first visit to school today. As I said in a previous post, there are about twelve classes in this preschool; we went and visited Mrs. G's class. There were seventeen typical kids, some are three and some are four. Their day starts at 8:30 but since Penny was just checking it out, she was asked to come in at 9:45, enough time to sit through circle time and check out centers. <br /><br />We walked through the door and Penny went running to the <span id="SPELLING_ERROR_0" class="blsp-spelling-error">circle</span> rug where everyone else was. Of course she didn't want to sit; she wanted to check everyone out and touch <span id="SPELLING_ERROR_1" class="blsp-spelling-error">everyone's</span> hair. :( I took her by the arm and sat with her. I also pointed around the rug and mentioned that everyone else was sitting there listening. Mrs. G read a book and her children sat there <span id="SPELLING_ERROR_2" class="blsp-spelling-corrected">motionless</span>. I was impressed. When the story was over, Mrs. G organized centers time by way of each child, one at a time, grabbed their name card (a foam rectangle with their name on the front and <span id="SPELLING_ERROR_3" class="blsp-spelling-corrected">Velcro</span> on the back) and walked over to whichever center they wanted to play with and put their name on that sign. Mrs. G saw the expression on my face and had to <span id="SPELLING_ERROR_4" class="blsp-spelling-corrected">explain</span> that they had been working on this since the fall and some of those kids were with her as 3-year <span id="SPELLING_ERROR_5" class="blsp-spelling-error">olds</span>, so they have been doing it for two years. Penny witnessed a couple other children hug th- teacher, so she ran into line to get one too. :) Mrs. G gladly hugged Penny back. <br /><br />Two cute girls (one was named Heavenly) inducted Penny into the world of centers. Each one took a hand of Penny's and then escorted her to the play-home. There was a desk with a phone and a pad of paper to take messages, a couch, dolls, a crib, a play sink and many other fun things. Penny set to sweeping the floor right away. Then she moved onto the construction center where she played cars and blocks with a couple of boys. Some cutie named Bryce took her by the hand later on to show her the writing/literacy center. I gave Penny a bucket of magnetic letters and she took to naming them as she pulled them out one by one. There was also a puzzle center and sensory table and Penny tried them all out. She was a little destructive in that she wanted to take everything out without putting the previous thing back, but she tried when directed. She also took a crayon and colored on <span id="SPELLING_ERROR_6" class="blsp-spelling-corrected">some one's</span> project before I could act. The four year old girl was kind of upset, but Mrs. G smoothed it over. <br /><br />After centers we went outside where she really fell short. There were tricycles, little tyke cars, scooters, and sidewalk chalk. There were a couple of <span id="SPELLING_ERROR_7" class="blsp-spelling-error">playscapes</span> so I imagine the outside areas are rotated since they spent their time on the blacktop today. She was chasing after a girl with a wagon when she fell and hurt her knees. She was already kind of miserable that day since she was constipated and tired (I think she woke up at 5:30). I decided to leave from there and so I said goodbye to the para. Mrs. G was inside taking care of some other business. <br /><br />I discussed our experience with Scott. I am really nervous about Penny fitting in. I know that she is great and that the teachers will love her, but I dread the looks and laughs from the other kids. I know the kids are young now so it will be <span id="SPELLING_ERROR_8" class="blsp-spelling-corrected">truly</span> innocent, but already, I had 4 or so kids ask me why she can't sit in a chair or why she doesn't know how to play with something. My answer generally was that she was still only two years old. Oh how staggering the difference is between her and the typical three-year-<span id="SPELLING_ERROR_9" class="blsp-spelling-error">olds</span>. I don't compare too much, most of the time I really don't care that she is on her own time table, but when it is thrown in my face like that it is really really hard not to think about it for at least a minute. . .<br /><br />I'm really excited that Penny is going to be in a typical class and not the class where it is half and half. I tell myself it is the best thing for her and that she will <span id="SPELLING_ERROR_10" class="blsp-spelling-corrected">excel</span>, but part of me worries that school will be too hard or because she won't be able to keep up, the <span id="SPELLING_ERROR_11" class="blsp-spelling-corrected">disparity</span> will be that much more significant. I can't help but worry, I am her mom.Maureenhttp://www.blogger.com/profile/08653413286650360934noreply@blogger.com4tag:blogger.com,1999:blog-1395224961850495595.post-54505965838999245342010-04-30T16:03:00.004-04:002010-04-30T17:16:21.253-04:00Penny starts school!Yesterday was my introduction into the world of <span id="SPELLING_ERROR_0" class="blsp-spelling-error">PPTs</span>. Well, it may be more accurate to say that my first <span id="SPELLING_ERROR_1" class="blsp-spelling-error">PPT</span> took place last month when I bravely sat down to a table with five of them and one of me. This was a meeting to discuss whether or not she qualified for services. Since I wasn't worried about the outcome, I didn't bother with reinforcements. At 9:15 am yesterday, my husband and I walked toward a rather large table with almost a dozen educators. I hate to paint a portrait of "sides" as I know we are all on Penny's side, but I have heard enough horror stories to know that sometimes there can be a "them against us" mentality. The people that had my back were Scott and Penny's Birth to Three providers. Penny's occupational therapist is herself a parent advocate and is very knowledgeable in how these proceedings should go. I also have the unfathomable support of Penny's physical therapist. Her attendance at the meeting felt like a wall holding me up. Penny's speech therapist and service coordinator/sped teacher were also present, and each had a chance to speak to Penny's strengths and then go on to discuss her needs in the preschool class.<br /><br />On the other side of the table were the "NEW" teachers, too numerous to mention. I remember 3 sped teachers from various classrooms, a PT, an OT, and an ST, but I also seem to remember one or two that I can't even remember what their function was. Everyone was nice enough. One of the new teachers (the OT maybe) asked if we had a picture to share before they could get going so that they could have a visual image of her before we discussed her placements. Scott happily passed his I-phone around the table to the sounds of oohs and <span id="SPELLING_ERROR_2" class="blsp-spelling-error">aahs</span> at his beautiful little princess. Scott and I had typed out a page describing what kind of person Penny is and I happily passed out copies around the table. I had indicated that I wanted a copy of this added to the <span id="SPELLING_ERROR_3" class="blsp-spelling-error">IEP</span> (individualized education plan) because Scott and I also included some goals of our own in there. The personality summary that I passed out was met with warm reception and I was really happy that Scott and I took the time to do that. It focused somewhat on her sign language skills and that our hope, no, our <em>requirement</em> for her would be that she be placed with a para that can sign and understand her signs.<br /><br />We had a lot of ground to cover in this session. The objectives on the table were really threefold. Penny is turning 3 at the end of May, so that means she will need services or school in June until the end of the school year. She also <span id="SPELLING_ERROR_4" class="blsp-spelling-corrected">qualified</span> for summer school (or <span id="SPELLING_ERROR_5" class="blsp-spelling-error">EYS</span>, extended year services) and we needed to discuss how that would be organized. Lastly, we had to decide her placement for preschool next school year. There are many options in East Hartford, but until recently, I was made to feel that many did not apply to my Penny.<br /><br />Since I cannot be flexible as far as driving her there and back for individual services at school (since I will be going to school myself), we had to arrange her services in June in tandem with the <span id="SPELLING_ERROR_6" class="blsp-spelling-error">bussing</span> schedule. We worked out that Penny will go to school starting May 27 for four Thursdays. I will be able to drop her off at the school at 8:15 and then she will get her ST, PT, OT, and special ed classes back to back. The bus will arrive at the school at 10:30 to bring her across town to the daycare we have chosen for her. Scott and I feel she can handle two hours at this time, and it is not a reduction in services since she is getting ST once a week now anyway. I almost cried when I realized that I WILL be able to see her go to school on her first day and see her when when comes off the bus. School starts on June 1 for me and I thought that she wouldn't start until that week as well and I had already resigned myself to the idea that I would miss her first day.<br /><br />I have to be honest here and say I was not too happy with the summer school situation. The only summer school they have available are with children with severe, significant delays. As soon as I heard that I said out loud, "Then that is not appropriate for my Penny." On paper, she will attend summer school, but what we will do is find out when and where the ST time slots are and go in for that only. <span id="SPELLING_ERROR_7" class="blsp-spelling-error">ESY</span> is not about gaining new knowledge, it is about avoiding regression. She will be fine without OT and PT for the summer, but I am worried about any speech skills she may lose.<br /><br />Now comes the fun part: next school year!! Determining how long her day will be, how many days, what classroom has been a moving target with this school. There are twelve classrooms in this school, some integrated, some with only typical kids, some with very <span id="SPELLING_ERROR_8" class="blsp-spelling-corrected">severely</span> delayed children. . . Initially I was told she was going to go into a class with only special needs kids. Even though they know it is against the law, that was the way they were doing it. Then I found out that the afternoon Head Start Program through East Hartford is a fully integrated class that she would be eligible for. There are 18 spots and they fill 10 of them with typical kids and the other eight spots are for students with <span id="SPELLING_ERROR_9" class="blsp-spelling-error">IEPs</span>. At first I was told it was from 12noon to 2:30 (which is an <span id="SPELLING_ERROR_10" class="blsp-spelling-corrected">awful</span> time), but later I found out that if she was picked up, we can get her at 3:30. Scheduling wise, it is much more convenient to pick her up at 3:30 then it would be to be home for the bus at 2:40 and we didn't want to pay for before and after care, so we elected for the no <span id="SPELLING_ERROR_11" class="blsp-spelling-error">bussing</span> for the way home. I was aware that there was a full day program, but that is only for typically developing kids whose parents are under certain income requirements. Technically, the half day program's typical kids are from lower income families as well. Yesterday, one of the administrators said, "You know what, since the mom will be in school full time, why don't we put Penny in the full day program." I was like, YES!! That was want I wanted, but had been denied because "we make too much money." But this woman made it seem like it would be possible. We ended up getting 1 hour each of OT and PT a week (or maybe 30min) but there is also classroom time for these therapists so Penny will in fact be getting more. We agreed on 90 minute of ST where she will be pulled out once every other week for 30 minutes to work on some skills one on one. Additionally, she will get a couple of hours of special ed instruction to work on <span id="SPELLING_ERROR_12" class="blsp-spelling-corrected">cognitive</span> skills along side the integrated class.<br /><br />Once I get a copy of the <span id="SPELLING_ERROR_13" class="blsp-spelling-error">PPT</span> I will see if I can share it for anyone that is interested. I feel really good about my "first time" and I am super excited for Penny to start school!! We also get to go in for a visit on Tuesday so she can meet the other kids. I really can't wait for that. only 4 days to go. . .Maureenhttp://www.blogger.com/profile/08653413286650360934noreply@blogger.com0tag:blogger.com,1999:blog-1395224961850495595.post-47513343391376740892010-04-28T09:13:00.003-04:002010-04-28T09:19:56.990-04:00Penny is almost 3Sorry I have been gone for so long. I was sucked into facebook. But I intend to disable my account come June 1 as I am going back to school and I do not want that around as a distraction. Here is my little princess. So much has been accomplished this year. She can now say a handful of words. Her favorite is "no" and she still calls me "baba" She can use about 70 signs, I wrote out a list for her preschool class and it astounded me. <br /><br />Yes, she is going to school soon which is kind of why I want to get back into this thing. I was thinking that others that come after me may benefit from our experiences. Penny has been doing so great since October, no real health concerns, no roadblocks with services, that I didn't really have too much to post. But in a months time she will be in school!! Aye! <br /><br />Her PPT is tomorrow. I downloaded the state of CT preschool ciriculum standards and found that she should be able to meet all those standards. She already can identify some letters and she knows colors, it is not a stretch to expect her to do so many other things during her first year of school. I know that in the fall, she will have school five days a week from 12 noon to 3:30 pm. Yikes!! I am going to miss that face so much. Well, if I have any readers around, tell me, what are YOU up to?<br /><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhO9pIcrj5kXYCf4JrO-8bn0gzl2kAy7Kw7327bDmx6r09HTQ3JM4fmPwgqU9zCk9IRgS-DJTzLtG6So9ORW5R3EvQa042-8-N67dDF9l4mtBdYdxB3ES7m4ubv5APLt-FkzSzsCBwNtnY/s1600/penny+in+dress.jpg"><img style="TEXT-ALIGN: center; MARGIN: 0px auto 10px; WIDTH: 400px; DISPLAY: block; HEIGHT: 317px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5465175909825343042" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhO9pIcrj5kXYCf4JrO-8bn0gzl2kAy7Kw7327bDmx6r09HTQ3JM4fmPwgqU9zCk9IRgS-DJTzLtG6So9ORW5R3EvQa042-8-N67dDF9l4mtBdYdxB3ES7m4ubv5APLt-FkzSzsCBwNtnY/s400/penny+in+dress.jpg" /></a><br /><div></div>Maureenhttp://www.blogger.com/profile/08653413286650360934noreply@blogger.com3tag:blogger.com,1999:blog-1395224961850495595.post-20765846134662555152009-11-19T09:59:00.000-05:002009-11-19T09:59:00.243-05:00Don't you just love it when a poem or story can really move you?On another post I will have to share my experience at the CT Down Syndrome Congress convention. But for now I want to mention that I won the door raffle and picked up several books that I am very excited about. One was "My Sister, Alicia May." For a long time, in the back of my head, I have been wanting to get a sibling with Down syndrome book for Nathaniel, but never got around to it. This book was so good it moved me to tears. Not only is the little darling girl, Alicia May, a spirited strawberry blonde like Penny, but Alicia May also had heart surgery when she was born just like Penny. I just loved the story and Nathaniel loved it too. Thank you Nancy for donating your book of poems, the book "My Sister Alicia May" and the permision to post your poem and for donating your book. I would have missed out for sure on this great read!!! <br /><br />You can click on Nancy Tupper Ling's name below to link over to her website, or click on the title to link to the poem itself. I highly recommend you check it out!<br /><a href="http://www.nancytupperling.com/Books.html"><br />Our Fragile Emissary<br /></a>By: <a href="http://www.nancytupperling.com/">Nancy Tupper Ling<br /></a><br />With modern screening and such<br />they wonder why<br />you're here, on this earth<br />in our home<br />and in our arms,<br />after all, anyone<br />with any sense would have resolved<br />this problem of you<br />pre-birth, pre pain.<br /><br />Blonde Beauty,<br />tiny as you are,<br />you catch their stares,<br />strangers' second glances<br />into tender baby blues.<br />And your young<br />sweet ears hear whisperings<br />("Down's," "defects")<br />words dropped loosely<br />at extra-chromosomed girls.<br /><br />With such stinging receptions<br />how we long to shelter you,<br />surround you; keep your<br />gentle smiles to ourselves.<br />Instead, we hold you<br />up, for others to see;<br />let you, our fragile emissary<br />speak to an imperfect world.Maureenhttp://www.blogger.com/profile/08653413286650360934noreply@blogger.com3tag:blogger.com,1999:blog-1395224961850495595.post-73926062985132925832009-11-18T09:21:00.003-05:002009-11-18T09:37:37.082-05:00Whew! I've been gone a long timeSince I am no longer working behing a computer eight hours a day, I find it hard to sit down and update my blog. Actually I have been a little busy. I took the Praxis II exam for high school math teachers and I have been finishing up my admissions essay. But more importantly, I have been settling in as a stay at home mom. I actually do house work. Imagine that!! I was so spoiled by Scott. But I need to pull my own weight and do stuff so that he wants to keep me around :)<br /><br />I have Halloween pictures on my facebook account. Unfortunately, after I got the photos uploaded to facebook, but before I got around to uploading them to flicker or to my external hard drive, the device that I use to connect the memory stick to the pc broke so I have to get a new one. It is only $15 a Walmart, it is just a matter of getting over there. The card slot on my pc has been broken for a while and we lost the cord that came with the camera, it is not a typical usb cable. The cost to replace our Sony cord is $80 so I would rather get that other thing. Too bad, our little princess was great!<br /><br />Penny is doing all kinds of amazing things and I have to say that I love staying home with to be a part of development. She says circle (kirkle lol) and draws a round sort of thing that closely resembles a circle. She started to say "up" on Monday and yesteday I swear she said "yeah." We do a lot of coloring and work with shapes. I sort of dabbled with color recognition, but I don't know if she is ready for that. She does get really engaged with shapes though so I am going to stick witht that. <br /><br />We hit a museum once sometimes twice a week since we have free admission to practically everywhere. And I still have time set aside for her naps.Maureenhttp://www.blogger.com/profile/08653413286650360934noreply@blogger.com3tag:blogger.com,1999:blog-1395224961850495595.post-69118357798590322522009-10-31T08:33:00.002-04:002009-10-31T08:36:39.592-04:00HAPPY HALLOWEEN<a href="http://unringingthebell.typepad.com/my_weblog/2009/09/3rd-annual-31-for-21-blog-challenge.html"><img style="BORDER-BOTTOM: medium none; BORDER-LEFT: medium none; WIDTH: 125px; BORDER-TOP: medium none; BORDER-RIGHT: medium none" alt="Get It Down; 31 for 21" src="http://unringingthebell.typepad.com/31for21button.jpg" /></a><img style="TEXT-ALIGN: center; MARGIN: 0px auto 10px; WIDTH: 300px; DISPLAY: block; HEIGHT: 300px; CURSOR: hand" border="0" alt="" src="http://www.bedandbreakfastsguide.com/ArticleImages/HappyHalloween2_2007_300.jpg" />What are your pumpkins being for Halloween?<br /><div></div>Maureenhttp://www.blogger.com/profile/08653413286650360934noreply@blogger.com2tag:blogger.com,1999:blog-1395224961850495595.post-84615818059279809162009-10-30T19:54:00.005-04:002009-10-31T08:32:39.977-04:00Cardiology Check up.<a href="http://unringingthebell.typepad.com/my_weblog/2009/09/3rd-annual-31-for-21-blog-challenge.html"><img style="BORDER-BOTTOM: medium none; BORDER-LEFT: medium none; WIDTH: 125px; BORDER-TOP: medium none; BORDER-RIGHT: medium none" alt="Get It Down; 31 for 21" src="http://unringingthebell.typepad.com/31for21button.jpg" /></a>Penelope had her annual cadiologist check up today. I must admit that I am a little bit nervous going in. I know I shouldn't be because Penny is obviously doing really well, but there is always a little part of me that waits for the bad news.<br /><div></div><br /><div>WELL, today we learned that Penny is really close to 30 lbs, and she is 34 inches. We also learned that everything looks good! The insuffiency in the valve was measured at a trivial amount. Her branch pulomanary areteries have grown as they should!!</div><div></div><br /><div>Here is hoping that her next surgery can wait until she is 7 or 8 years old. YAY!!!! <img style="TEXT-ALIGN: center; MARGIN: 0px auto 10px; WIDTH: 291px; DISPLAY: block; HEIGHT: 408px; CURSOR: hand" border="0" alt="" src="http://www.soontob.com/wp-content/uploads/2009/07/crossed-fingers.jpg" /></div>Maureenhttp://www.blogger.com/profile/08653413286650360934noreply@blogger.com5tag:blogger.com,1999:blog-1395224961850495595.post-82958897330053661452009-10-29T11:15:00.003-04:002009-10-29T16:24:31.742-04:00Penelope and CHD - Part VII<a href="http://unringingthebell.typepad.com/my_weblog/2009/09/3rd-annual-31-for-21-blog-challenge.html"><img style="BORDER-RIGHT: medium none; BORDER-TOP: medium none; BORDER-LEFT: medium none; WIDTH: 125px; BORDER-BOTTOM: medium none" alt="Get It Down; 31 for 21" src="http://unringingthebell.typepad.com/31for21button.jpg" /></a><br />You can read where I left off in Part VI right <a href="http://babygirlpenny.blogspot.com/2009/10/penelope-and-chd-part-vi.html">here</a>.<br /><br />Sunday night, June 3, 2007 brought a tough decision. At the advice of Penelope's primary care nurse both Scott and I went home that night to get a good night sleep and spend time with Nathaniel. I can't remember the time, but we were asked to come in early the next day for us to say good bye and good luck to Penny.<br /><br />Of course, we were running late so Scott and I went running to Penelope's NICU alcove so that we could put kisses all over her little body. We prayed that she would be returned to us. Next we had to pack everything up since she would not be returning to the NICU. The plan was that she would go to the PICU (pediatric intensive care unit) and then from there to a regular floor.<br /><br />Penelope was 6 days old this morning, but she had never eaten anything. All her nutrition had been i.v. up until this point so I had a ton of those 2 oz cylinders with my breast milk which I needed to pack up and ship out. Eventually, the team was ready to transport her, and Scott and I were packed up and the race began. I say race because it was quite a long trip from the NICU in Hartford Hospital to the facilities at CCMC where she was going to be dropped off. There were no less than four professionals walking with us including her primary nurse. They all wanted to rush because they did not want her to crash while en route to the operating room.<br /><br />We went down an elevator to the bowels of the hospital and then through a long tunnel that ran under ground, under the roads to the parking garage. There were two sets of steel security doors on the Hartford Hospital side and after what felt like an eternity of walking, anther 2 sets of steel doors on the CCMC side. When the first set had been visible, I thought, great we are almost there, but after we passed through those doors, another long corridor loomed ahead. Finally we got to the end and found another elevator on the CCMC side. We turned a corner and it was here that I had to say good bye to my little baby. She looked so helpless in the isolette that she was transported in.<br /><br />Our hope was that she was going to be a good candidate for the full repair. This meant that the hole between her atriums and the hole between her ventricles would be stitched up. Also, a donor pulmonary artery would be placed where hers was missing. We were warned that Penelope would look quite swollen after the surgery and that the earliest we may not see her until 4pm if the complete repair was done, but maybe earlier if the a shunt procedure was done.<br /><br />We waited, and waited. I kind of had this feeling that someone would give us hour by hour plays, but that was not accurate at all. We were assigned a family room where we could sleep as long as our child was assigned a room in the PICU. The regular floors in the hospital allow (and accomodate) rooming in for the parents. However, they have a strict policy against parents sleeping in the PICU. That was fine with us, the family room was one of four bedrooms that shared two bathrooms (with shower facilities) and a kichenette. I thought it was great! We didn't have to run back and forth to home and we only lived 15 mintues away. How great was this anemity to those traveling hundreds of miles!<br /><br />Finally, after waiting in several different waiting rooms looking for someplace to feel comfortable, we retreated to our room. At last, at 1:15 pm, the Dr. himself knocked on our door. We shared a meeting in the hallway to the rooms, and were told that Penny's coronary arteries were not in a good spot and she was outfitted with a BT shunt. He could tell that we were disappointed for this because this meant we would have to come back in 6 months or so, but he said it was definately the best for her. He went on to admit, some doctors are more agressive and perhaps Boston would have done the full repair to avoid having another invasive surgery, but he liked to err on the side of caution to avoid damaging a vitail coronary artery and so he stuck with the shunt. We thanked him for his compassion and his hard work. We knew she had been in good hands!!<br /><br />After what felt like another eternity, the closing team finished up with Penny, and we were allowed to meet her in the PICU room. I can honestly say about this experience that I walked right in, and then I walked right out. That baby in the bed was not mine. But the name on board clearly placed baby Ringrose to that room. Penelope's ICU nurse came in to explain all of the pumps and the breathing tube (in case we didn't already know about it) as well as the foley catheter, and the chest tubes. She told us that Penny was retaining fluid after the surgery which was more than common and that our baby was being administered lasix to help her heart in getting the fluid off of her. It was scary to go in there an sit by her bedside. I couldn't even imagine having to go through that myself and here was this little girl hooked up in so many places.Maureenhttp://www.blogger.com/profile/08653413286650360934noreply@blogger.com0tag:blogger.com,1999:blog-1395224961850495595.post-73004783833480890702009-10-28T09:41:00.003-04:002009-10-28T09:56:34.056-04:00CraZy DreAm I HaD<a href="http://unringingthebell.typepad.com/my_weblog/2009/09/3rd-annual-31-for-21-blog-challenge.html"><img style="BORDER-RIGHT: medium none; BORDER-TOP: medium none; BORDER-LEFT: medium none; WIDTH: 125px; BORDER-BOTTOM: medium none" alt="Get It Down; 31 for 21" src="http://unringingthebell.typepad.com/31for21button.jpg" /></a><br /><br />Anybody that knows how to interpret dreams, your comments are welcome. <br /><br />A large convention type hall was used for a meeting of people with Down syndrome and their families. I haven't yet been to a CDSC convention or a Natainal convention so I am not sure what they are like, but I have a pretty good idea. I was alone with Penny, because in my dream Scott stayed home with Nathaniel. I had been having a great time getting to know other families and other children and some adults with Down syndrome too. This dream felt so real, like I really knew these people. <br /><br />At some point, it was like there was a lock down. We were all trapped in this hotel that housed only the convention people. Armed guards could be seen through windows at pretty much every locked exit. Obama was visible through a large glass, sitting behind his presidential desk with body guards standing on either side of him. Suddenly, his voice came on a speaker and he announced that we were <em>all</em> to be terminated since our children's lives were not ended before they were born. I don't remember the exact words in the dream, only that the method of execution for us was that gas would be piped into our convention space. <br /><br />I cried so much in this dream. We all protested and demanded to know why our children's lives were not valued. Additionally, many of us had family left at home and we insisted that this was good reason to let us all live. Obama was unwaivering in his intent.<br /><br />Luckily, it was a huge space that we were confined to, so in my dream, the gassing took an infinitely long time to produce any effects. I noticed a police officer (dressed unlike the guards) in a window and I held up a sign and waved my arms to get her attention. I communicated to her that Obama was in this building with us and he intended to murder us all. This officer was able to confront Obama and call off the mass murder. But he gave me a terrible look and let me know that this was not over, especially with me. <br /><br />SO, what the heck does this mean?Maureenhttp://www.blogger.com/profile/08653413286650360934noreply@blogger.com1tag:blogger.com,1999:blog-1395224961850495595.post-89058783972360820052009-10-27T16:02:00.002-04:002009-10-27T16:04:30.409-04:00Who has the time?Right? You know, to look through old posts when you only just started following a blog. My blog is so boring anyway. . .<br /><br />Well, I just watched this video myself today and I must say, this is the first time I have seen this in at least a year. <br /><br /><a href="http://babygirlpenny.blogspot.com/2008/01/ok-so-scott-and-i-figured-this-video.html">http://babygirlpenny.blogspot.com/2008/01/ok-so-scott-and-i-figured-this-video.html</a><br /><br />Click above to track back to one of my first posts, about 20 months ago to see baby Penny! This is why my blog name is baby girl Penny afterall!Maureenhttp://www.blogger.com/profile/08653413286650360934noreply@blogger.com2tag:blogger.com,1999:blog-1395224961850495595.post-8778737668387569972009-10-27T12:45:00.002-04:002009-10-27T12:48:20.943-04:00I am such a proud Momma!<a href="http://unringingthebell.typepad.com/my_weblog/2009/09/3rd-annual-31-for-21-blog-challenge.html"><img style="BORDER-RIGHT: medium none; BORDER-TOP: medium none; BORDER-LEFT: medium none; WIDTH: 125px; BORDER-BOTTOM: medium none" alt="Get It Down; 31 for 21" src="http://unringingthebell.typepad.com/31for21button.jpg" /></a><br /><br />So, word number five in Penelope's vocabulary? Is it Mamma? Madre? Mum? or Mother? NO. How about the word, "butt!" <br /><br />. . .<br /><br />. . .<br /><br />. . .<br />I have to admit I am kind of to blame on this one. But when your 2 1/2 year old is running around the house happily smacking herself on the bottom yelling, "Butt, butt, butt, . . . butt. . . butt, butt. . . butt!" it is a wee bit difficult to hold back the smiles. <br /><br />{Sigh} I love that girl!!Maureenhttp://www.blogger.com/profile/08653413286650360934noreply@blogger.com2tag:blogger.com,1999:blog-1395224961850495595.post-86692520236959420762009-10-26T13:11:00.003-04:002009-10-26T16:14:49.489-04:00Penelope and CHD - Part VI<a href="http://unringingthebell.typepad.com/my_weblog/2009/09/3rd-annual-31-for-21-blog-challenge.html"><img style="BORDER-RIGHT: medium none; BORDER-TOP: medium none; BORDER-LEFT: medium none; WIDTH: 125px; BORDER-BOTTOM: medium none" alt="Get It Down; 31 for 21" src="http://unringingthebell.typepad.com/31for21button.jpg" /></a><br />You can read where I left off in Part V right <a href="http://babygirlpenny.blogspot.com/2009/10/penelope-and-chd-part-v.html">here</a>.<br /><br />The Thursday afternoon, I sat there nodding my head at all the things Katie had to tell me. Katie was the physician's assistant to the pediatric cardiac surgeon. Anyone who has met Katie will agree with me here that she is phenomenol. <br /><br />She mapped out what was wrong with Penelope's heart and explained the diagnosis of Tetralogy of Fallot with pulmonary atresia. I was told that Penny would need a surgery immediately, but that the sugeon, Dr. Mello, was scheduled on important cases throughout the week at other area hospitals. There were two scenarios of what would occur during surgery. The preferred outcome was a complete repair. This is where the doctor would cut inside the heart, fix both the holes between the atriums and ventricles. Also, a donor artery would be used to replace the missing vessel. This was only a possibility because when working with a heart so small, the coronary arteries can cover a lot of the surface area of the heart, making it difficult to find a safe place to cut into the heart. If the coronary arteries were too much in the way, Dr. Mello was going to insert a BT shunt between her pulmonary artery and aorta (kind of like a synthetic ductus). The shunt would allow Penny to stay oxygenated so that she could grow and develop, but also her heart would grow bigger, possibly allowing the space to perform a complete repair later. <br /><br />So, the advice was that we were to play the waiting game. We prayed that Penny would be kept stable enough to wait until the scheduled surgery on Monday. <br /><br />Later on Thursday, I met with Penny's primary nurse, Rhonda. I loved her way of letting me keep as much control as possible since I was the parent. She also insisted that I get to hold my child so that Miss Penelope could understand that her mother was there for her. I have to say that day I got to hold my newborn for the first time since she was taken away from me in Manchester, it was wonderous. I got to smell her, feel her soft skin, kiss her warm head, and wisper all my love to her. As saddened as I was still of the diagnosis of Down syndrome, and then the news of the heart defect, I felt all the tension float away as I got to settle in with Penny in the chair. <br /><br />THANK YOU FOR THAT RHONDA<br /><br />The next couple of days were a blur of the NICU, coming home to find all the flowers and cards people were sending, pumping, and napping. Scott or I were always are the hospital. There was never even a discussion about this. We could never have let our daughter be alone even for a few minutes. So, we took turns staying home with Nathaniel and making sure that his needs were met. My mother also watched him a lot.<br /><br />It should be noted as well, that at this time, Scott's 59 year old mother, Sandy, had been recently admitted to the same hospital to be treated for some respitory concerns. She would get into a wheelchair and get her husband to take her down a few floors to come into the NICU and visit. It was tough to see her so sick, but I loved that we could not keep her away from her new granddaughter. <br /><br />By Saturday, it was clear Penelope had a very difficult time keeping her little body going. The balance to keep her respitory and blood pressure rates where they wanted it against the ever important blood oxygen saturation level (or pulse-ox) was difficult. I got a call from Scott in the middle of the Saturday night that they were going to intubate her. He came home to switch shifts with me and we both wanted to go to the hospital to see her. After we left Nathaniel with my mother again, we headed off. <br /><br />Seeing Penny with the breathing tube was very traumatic for Scott, it reminded him of his ailing mother and I remember how moved I was by his tears. For me, it was honestly just one more thing. She was going to have surgery the next day and she would have been intubateted so I saw this as one less thing to worry about tomorrow! But it was still touch and go and Penny was a very sick baby. My grandmother called her nephew, the deacon and asked him to meet us at the hospital to baptize her. Scott and I were so happy for this because we didn't want to take any chances.Maureenhttp://www.blogger.com/profile/08653413286650360934noreply@blogger.com0tag:blogger.com,1999:blog-1395224961850495595.post-1529994345906672082009-10-25T10:50:00.002-04:002009-10-25T10:52:28.432-04:00Welcome Kim and Family<a href="http://unringingthebell.typepad.com/my_weblog/2009/09/3rd-annual-31-for-21-blog-challenge.html"><img style="BORDER-BOTTOM: medium none; BORDER-LEFT: medium none; WIDTH: 125px; BORDER-TOP: medium none; BORDER-RIGHT: medium none" alt="Get It Down; 31 for 21" src="http://unringingthebell.typepad.com/31for21button.jpg" /></a><br /><br />There is a new mom blogging about her family with something extra and I am excited to welcome her to the blogging community. <a href="http://www.ourwigglebugs.blogspot.com/">Hi Kim</a>!!<br /><br />I can't wait to hear about all the adventures of Andrew and Hailey. If you would like to welcome her, please check her out at the below link. <br /><a href="http://www.ourwigglebugs.blogspot.com/">http://www.ourwigglebugs.blogspot.com/</a>Maureenhttp://www.blogger.com/profile/08653413286650360934noreply@blogger.com1tag:blogger.com,1999:blog-1395224961850495595.post-61518701737893772622009-10-24T22:08:00.003-04:002009-10-26T13:11:21.649-04:00How well does discipline work for your child with Down syndrome<a href="http://unringingthebell.typepad.com/my_weblog/2009/09/3rd-annual-31-for-21-blog-challenge.html"><img style="BORDER-RIGHT: medium none; BORDER-TOP: medium none; BORDER-LEFT: medium none; WIDTH: 125px; BORDER-BOTTOM: medium none" alt="Get It Down; 31 for 21" src="http://unringingthebell.typepad.com/31for21button.jpg" /></a><br /><br />So today, Penny was a really "bad baby." She bit Nathaniel on the cheek. Really badly. I put her in the time out corner. This was the second time I ever put her in time out. It took her awhile to stay there, but finally she got the point.<br /><br />After two minutes of continuous sitting, I let her get up and led her back to her brother. I pointed to his cheek and told her that what she did hurt him and I asked her to say sorry. Boy did she cry!!! Was she said that she hurt her brother. I don't think so since I don't believe children at that age can feel empathy. But maybe a person with Down syndrome are more advanced in that area? Who am I to judge? I think it more likely that she was upset by my tone and that she was put in time out.<br /><br />What do you think?Maureenhttp://www.blogger.com/profile/08653413286650360934noreply@blogger.com3tag:blogger.com,1999:blog-1395224961850495595.post-44681600403881323232009-10-23T11:19:00.004-04:002009-10-23T11:29:45.652-04:00Question of the Day - Please answer!<div><a href="http://unringingthebell.typepad.com/my_weblog/2009/09/3rd-annual-31-for-21-blog-challenge.html"><img style="BORDER-RIGHT: medium none; BORDER-TOP: medium none; BORDER-LEFT: medium none; WIDTH: 125px; BORDER-BOTTOM: medium none" alt="Get It Down; 31 for 21" src="http://unringingthebell.typepad.com/31for21button.jpg" /></a><img id="BLOGGER_PHOTO_ID_5395815427734838562" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 200px; CURSOR: hand; HEIGHT: 221px; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjhr33hyR3FzNreLLVTilbdPWQGLaEC4PVCyG98GTk9TfhV6dgbqPVmLlEj3kL4hxZNPxCELpp1-HgS7JJ4FDeyZbUi3SgcRBTN34vUPq3AWuun_sh3I4gTPfMz8mLX030bYyoQO5BhDJw/s400/n1132194620_2369.jpg" border="0" /></div><br /><p>I wish I had thought of this picture for Wordless Wednesday. </p><p>My question is, "WHAT DO YOU THINK PENNY IS SAYING TO <a href="http://masterdillon.blogspot.com/">DILLON</a>?"</p><p> </p><p> </p>Maureenhttp://www.blogger.com/profile/08653413286650360934noreply@blogger.com7tag:blogger.com,1999:blog-1395224961850495595.post-76098719554214729152009-10-22T09:50:00.004-04:002009-10-22T10:44:34.190-04:00If People with Down Syndrome Ruled the World<a href="http://unringingthebell.typepad.com/my_weblog/2009/09/3rd-annual-31-for-21-blog-challenge.html"><img style="BORDER-RIGHT: medium none; BORDER-TOP: medium none; BORDER-LEFT: medium none; WIDTH: 125px; BORDER-BOTTOM: medium none" alt="Get It Down; 31 for 21" src="http://unringingthebell.typepad.com/31for21button.jpg" /></a><br /><br />Please <a href="http://www.nads.org/pages_new/news/ruletheworld.html">click here if you would </a>like to see Dr. Dennis McGuire's rendition from an address at a 2005 National Association for Down Syndrome assembly. It discusses ideas from dancing, to hugging, to what movies might be like.<br /><br />Before you head over there, tell me: What do you think the world would be like if "People with Down syndrome Ruled the World?"<br /><br />And I am really excited about going to the CDSC's annual convention this year and I just registered today. The guest list includes Emily Perl Kingsly, Jason Andrew Kingsley, Mitchell Levitz, and Dr. McGuire will be there to speak on his essay in person. Yay!!! So this link above is just a sneak peak for me. I know, I am so sneaky!!Maureenhttp://www.blogger.com/profile/08653413286650360934noreply@blogger.com0tag:blogger.com,1999:blog-1395224961850495595.post-52875089368056543162009-10-21T20:45:00.002-04:002009-10-21T20:48:28.284-04:002009 CDSC Buddy Walk Pictures<a href="http://unringingthebell.typepad.com/my_weblog/2009/09/3rd-annual-31-for-21-blog-challenge.html"><img style="BORDER-BOTTOM: medium none; BORDER-LEFT: medium none; WIDTH: 125px; BORDER-TOP: medium none; BORDER-RIGHT: medium none" alt="Get It Down; 31 for 21" src="http://unringingthebell.typepad.com/31for21button.jpg" /></a><br /><br />Hey guys, this is really just so inspiring to me. Please stop by and check out the photos from this wonderful day. Team Penny Girl was definately representing!! Even my mother is in there. Ha!<br /><br /><a href="http://www.triciabohan.com/CDSCBuddyWalk2009/index.html">CLICK HERE TO CONNECT TO THE SITE FOR PHOTOS</a>Maureenhttp://www.blogger.com/profile/08653413286650360934noreply@blogger.com1tag:blogger.com,1999:blog-1395224961850495595.post-14129925888644933672009-10-20T08:34:00.007-04:002009-10-22T15:15:23.101-04:00Penelope and CHD - Part V<a href="http://unringingthebell.typepad.com/my_weblog/2009/09/3rd-annual-31-for-21-blog-challenge.html"><img style="BORDER-RIGHT: medium none; BORDER-TOP: medium none; BORDER-LEFT: medium none; WIDTH: 125px; BORDER-BOTTOM: medium none" alt="Get It Down; 31 for 21" src="http://unringingthebell.typepad.com/31for21button.jpg" /></a> <span style="font-size:180%;">Fact: 50% of people with Down syndrome are born with a congenital heart defect.</span><br />You can read where I left off in <a href="http://babygirlpenny.blogspot.com/2009/10/penelope-and-chd-part-iv.html">Part IV here</a>.<br /><br />I left the hospital and arrived home after 10:00 pm. That was probably the longest day of my life! But. It was not over. I wanted to use the breast pump before I took the sleeping pill and went to bed. I had rented the hospital grade Medela pump from Manchester, but I realized I was not in possesion of all the accessories I thought I had saved from Nathaniel. So, I put the machine away and went to bed, hoping, . . . no praying, that everything was going to turn out ok. I cried myself to sleep.<br /><br />The next morning my mother picked me up to bring me back to the hospital. (I think Scott went to finish up the loose ends at his job so he could focus on Penelope over the next few weeks.) I didn't want to push myself by driving around God's creation, but physically, I felt great. It was still hard to believe that I just had a baby the day before. First we went to Babies R Us to see about those accesories I needed for the breast pump. They didn't have it, so we treked back to Manchester Hospital. I was able to purchase what I needed and off we went to Hartford Hospital.<br /><br />After parking and the journey to the NICU I was able to greet my baby quickly before I learned where the private rooms were so that I could express my milk. There were three lactation consultants at the CCMC NICU, and one woman in training, so it was a comfort to get that support. Even the attending said something to the affect that this was the best thing I could physically do for her at this point. Busy work, to stave off the feeling of helplessness. But important work none the less.<br /><br />I felt like I was waiting around forever to meet Penny's cardiologist. I received word that they wanted to do another echocardiogram to confirm the diagnosis and to make sure that her heart was going to keep working until they could get her in for surgery. This day was Wednesday, but the earliest they could get her in was Monday, June 4, 2007. Of course, when I finally decided to take a quick break to grab something to eat and express milk, the doctor came and went!<br /><br />The next day, my friend Audrey drove me around. I still wanted to take it easy, since under normal circumstances, I would still be in the hospital. She drove my son and I to his school to drop him off and then headed to the hospital. It was this day that I learned a lot about Penny's anatomy.<br /><br />The itty bitty ductus arteriosus was being kept open by medication and was keeping my daughter alive! The ductus is not labeled in this picture, but it is the very small vessel between the aorta (AO) and the branch pulmonary arteries (PA). Penelope was born without that ever important pulmonary artery. The ductus that was kept open magically by medication is something that generally closes after birth when the baby starts to use the PA to actually get oxygen from the lungs and not from the mother. <img id="BLOGGER_PHOTO_ID_5394883500463362082" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 320px; CURSOR: hand; HEIGHT: 226px; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiqK1TU6ZIqX7czxQcY_xFnTF-R0JCoNkw1XfzFTdmlFiSzD04_gEIM5QgiqLa-ZTAR3PzNiRJDC77EvzKAJvEkI3j_z9-mCjDGiviq0BosXkWen-ryAwCIIC-bOkKHYr5-KZC2U4W60k0/s320/pulmatresiavsd.gif" border="0" />I learned that Penelope was diagnosed with Tetralogy of Fallot and Pulmonary Atresia. If she had a stenotic or narrow artery, she might have been allowed to come home for a few months until she got big enough for a proper surgery. These are the many issues that make up the diagnosis. Firstly, she is missing the pulmonary artery, or PA. In addition to the problem with the PA, she also had a hole between the two artiums (atrial septal defect, or ASD). Also, she had the hole between her two ventricles. Since she had no PA this was the only way to get blood to move in a circular path. As seen in the diagram, her aorta sat right above the hole in the ventricular wall (ventricular septal defect or VSD) and it pulled blood from both the right and left ventricles. This is called an overriding aorta. She also had right ventricular hypertrophy because her right ventricle worked extra hard to try to pump blood into a pulmonary artery that did not exist and extra muscle tissue built up on that side.Maureenhttp://www.blogger.com/profile/08653413286650360934noreply@blogger.com0tag:blogger.com,1999:blog-1395224961850495595.post-69486143733331354112009-10-19T11:49:00.007-04:002009-10-19T15:46:24.240-04:00Penelope and CHD - Part IV<a href="http://unringingthebell.typepad.com/my_weblog/2009/09/3rd-annual-31-for-21-blog-challenge.html"><img style="BORDER-RIGHT: medium none; BORDER-TOP: medium none; BORDER-LEFT: medium none; WIDTH: 125px; BORDER-BOTTOM: medium none" alt="Get It Down; 31 for 21" src="http://unringingthebell.typepad.com/31for21button.jpg" /></a> <span style="font-size:180%;">Fact: 50% of people with Down syndrome are born with a congenital heart defect.</span><br /><br />You can see pictures of her <a href="http://babygirlpenny.blogspot.com/2009/10/penelope-and-chd-part-iii-chest-scar.html">scar here</a> in Part III. Or read where <a href="http://babygirlpenny.blogspot.com/2009/10/penelope-and-chd-part-ii.html">Part II left off here</a>.<br /><br />Scott and I finally left the Manchester Hospital a little after 7pm. Again, all I can tell you was that it was so surreal. I know there are plenty of moms that like to leave the hospital as soon as possible, but I was not one of them. Only 12 hours earlier, my daughter Penelope was delivered.<br /><br />I needed to see my son again before the night was over as well as pick up the prescription for the sleeping aid so we headed out to my mother's house while the prescription was filled. I hugged and kissed Nathaniel so much that night. I had already begun to project my feelings of loss onto him and wondered how his life was going to be affected by his new sister. After I was satisfied that Nathaniel was settled in for the night, we made a quick stop back at the pharmacy and then off to Hartford we went.<br /><br />Scott had stayed with Penny for several hours earlier in the day so he already knew where to go and what to expect.<br /><br />It was close to 9pm when we parked at the garage. It was a warm spring evening when we walked out of the garage and across the courtyard and into Hartford Hospital. CT Children's Medical Center is adjacent to Hartford Hospital so CCMC is able to place their NICU in HH to have that unit close to the maternity ward. We were stopped briefly since visiting hours were over, but were quickly on our way up the elevator.<br /><br />As we approached the large steel security doors to the NICU, I almost didn't want to go in. We were eventually greeted at the window and given nametags. On the other side of the doors, Scott schooled me on how to scrub in. I remembered back to when my baby brother Joe was born premature. I was ten and I was allowed to see him, but I had to scrub in as well. Scott and I headed to her little alcove there in the North wing of the NICU. About only five beds were permitted on this wing and it was so quiet. All the lights were off and I could hear the soft beeping of the machines. Occasionally, an alarm would ring in the distance. But in Penny's small wing, she was the only really sick one. The nurse on duty greeted us and led us into her little corner.<br /><br />The first time I looked at her, I actually felt numb. A whole lifetime must have passed since last I held her at 9 am. Her eyes were so incredibly swollen that the edge of her eyelids flipped out a little, especially when she cried or was upset. In fact, the whole top part of her head was red. The corners of her small mouth were downturned and her chin was all scrunched up from the scowl. Her arms and legs were sprawled out. I tried to comfort her, and patted her arm. This immediately got her agitated and her eyes looked even more firery. The nursed warned me that it might not be a good idea to touch her while she was on the medicine to keep her heart working. "It can make you grumpy," is what she said to me.<br /><br />So much time has passed since her birthday; I can't even recall how many lines were in her. But at minimum, she had an arterial line, two peripheral i.v.'s, a sensor on to continuously monitor her temperature, a pulse oximetry probe, and sensors to measure her respiratory rate. I quickly learned the meaning of the green, blue, white, and red lines on the monitor hanging above her bed space. I don't even remeber if she had a nasal canula at this point. I know that she was not on a respirator at this time, even though the prostaglandin medication she was on affects the respiration rate. I wasn't able to stay long. And even though it seemed unintuitive to leave my newborn behind me, I had to leave. I had to get out of that place.Maureenhttp://www.blogger.com/profile/08653413286650360934noreply@blogger.com0tag:blogger.com,1999:blog-1395224961850495595.post-76901277626212306722009-10-18T17:54:00.001-04:002009-10-18T17:57:12.239-04:00Another great wedding!<a href="http://unringingthebell.typepad.com/my_weblog/2009/09/3rd-annual-31-for-21-blog-challenge.html"><img style="BORDER-BOTTOM: medium none; BORDER-LEFT: medium none; WIDTH: 125px; BORDER-TOP: medium none; BORDER-RIGHT: medium none" alt="Get It Down; 31 for 21" src="http://unringingthebell.typepad.com/31for21button.jpg" /></a><br /><br />You all just have to check out these <a href="http://andycamphotovideo.com/scarritt-bennett/josh-bernadettes-wedding-at-vanderbilts-scarritt-bennett-chapel-in-nashville/comment-page-1/">pictures. So inspiring</a>. I am so blesssed to live in the times that we do. Penny is going to live such a full life. I know it. <br /><br /><object width="400" height="300"><param name="allowfullscreen" value="true" /><param name="allowscriptaccess" value="always" /><param name="movie" value="http://vimeo.com/moogaloop.swf?clip_id=4066173&server=vimeo.com&show_title=1&show_byline=1&show_portrait=0&color=&fullscreen=1" /><embed src="http://vimeo.com/moogaloop.swf?clip_id=4066173&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><p><a href="http://vimeo.com/4066173">Josh & Bernadette's Ceremony Highlight</a> from <a href="http://vimeo.com/user1557574">AndyCam Productions</a> on <a href="http://vimeo.com">Vimeo</a>.</p>Maureenhttp://www.blogger.com/profile/08653413286650360934noreply@blogger.com1tag:blogger.com,1999:blog-1395224961850495595.post-25816710014904667262009-10-17T23:55:00.003-04:002009-10-17T23:58:59.125-04:00Stuffy nose<a href="http://unringingthebell.typepad.com/my_weblog/2009/09/3rd-annual-31-for-21-blog-challenge.html"><img style="BORDER-BOTTOM: medium none; BORDER-LEFT: medium none; WIDTH: 125px; BORDER-TOP: medium none; BORDER-RIGHT: medium none" alt="Get It Down; 31 for 21" src="http://unringingthebell.typepad.com/31for21button.jpg" /></a><br />I am so blessed in that Penelople rarely has a stuffy nose. I know a lot of her friends have had their adenoids taken out. But not Penny.<br /><br />So on the rare occasion that she has a stuffy nose from the weather or a cold or what have you, she is an agry beast. I feel so bad shen she can't sleep due to her stuffy nose. Poor baby.<br /><br />What kind of tricks do you try to get your little ones clear for the night?Maureenhttp://www.blogger.com/profile/08653413286650360934noreply@blogger.com2tag:blogger.com,1999:blog-1395224961850495595.post-23903921793863028632009-10-16T07:30:00.003-04:002009-10-16T15:42:12.522-04:00Penelope and CHD - Part III Chest Scar<a href="http://unringingthebell.typepad.com/my_weblog/2009/09/3rd-annual-31-for-21-blog-challenge.html"><img style="BORDER-RIGHT: medium none; BORDER-TOP: medium none; BORDER-LEFT: medium none; WIDTH: 125px; BORDER-BOTTOM: medium none" alt="Get It Down; 31 for 21" src="http://unringingthebell.typepad.com/31for21button.jpg" /></a> <span style="font-size:180%;">Fact: 50% of people with Down syndrome are born with a congenital heart defect.<br /></span><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgDrKrvUE5TknvJR0DGBSK3QWHP-qvYBcWxuNH5Ayy6emEUxsL1e2g5zBtOmYDlBXe4UGgIIPtD6uRNwVWFPwmJwGSHP3tZSp0nAvBHPP5T3F2yKu3KNkaTj2n-55BhtLyg_73AO8yDXy8/s1600-h/DSC02606.JPG"><img id="BLOGGER_PHOTO_ID_5392993139200531650" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 240px; CURSOR: hand; HEIGHT: 320px; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgDrKrvUE5TknvJR0DGBSK3QWHP-qvYBcWxuNH5Ayy6emEUxsL1e2g5zBtOmYDlBXe4UGgIIPtD6uRNwVWFPwmJwGSHP3tZSp0nAvBHPP5T3F2yKu3KNkaTj2n-55BhtLyg_73AO8yDXy8/s320/DSC02606.JPG" border="0" /></a> Penelope today, at 30 months, has this bump in the middle of her chest from the healing of her sternum. You can see the faint circle shaped scars from her chest tubes.<br /><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgmtAnbckbDEYE_njoqfOlfiuva0yVy_C6wbY1Y6vrnk2N4JBjhLyF6ocoQ9-okhVPtxGO9pZ1572n9FQsmfaUzMTb7fAXVK96q4M1_BA9VnglzWk4KPIITA3aknVcscxeZGgR22lDpgro/s1600-h/DSC02603.JPG"><img id="BLOGGER_PHOTO_ID_5392993133774912402" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 320px; CURSOR: hand; HEIGHT: 240px; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgmtAnbckbDEYE_njoqfOlfiuva0yVy_C6wbY1Y6vrnk2N4JBjhLyF6ocoQ9-okhVPtxGO9pZ1572n9FQsmfaUzMTb7fAXVK96q4M1_BA9VnglzWk4KPIITA3aknVcscxeZGgR22lDpgro/s320/DSC02603.JPG" border="0" /></a> A close up of Penelope's chest scar. You can really see the scar from the left plural chest tube. She also had a chest tube in the middle after her 2nd surgery (for the total repair). There is that bump again.<br /><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhXVzpNFf-k57FGPaJ0jvQjKZ9lXrUnhFGgQxQqvuV8RRcN1qlMbDlacHEa7_tRlC4FwjJ_PRQlQJG7j068MdTPfImpG3rDPqDpAtCW4RJ28aXjb2dKW7kogRBkPjzlOYIr794hfWCGBFc/s1600-h/DSCF0850.JPG"><img id="BLOGGER_PHOTO_ID_5392993121651696082" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 320px; CURSOR: hand; HEIGHT: 240px; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhXVzpNFf-k57FGPaJ0jvQjKZ9lXrUnhFGgQxQqvuV8RRcN1qlMbDlacHEa7_tRlC4FwjJ_PRQlQJG7j068MdTPfImpG3rDPqDpAtCW4RJ28aXjb2dKW7kogRBkPjzlOYIr794hfWCGBFc/s320/DSCF0850.JPG" border="0" /></a> Here is Penelope several weeks after her 2nd surgery, the incision is still healing.<br /><br /><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi08HuALIoHbqaDypbcQaTzVaua3Cz4T-ef3t6PNLfPRRxvrUe4OGFX7JhEVhQWYXSsjAGidA8bljwPZY9a1ppy0iW_eNVSs93V8dNuRq40xoKkGqgo6saCEeiv_MVWxQmME9oBE1-yo74/s1600-h/penny18.jpg"><img id="BLOGGER_PHOTO_ID_5392993111674617266" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 320px; CURSOR: hand; HEIGHT: 240px; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi08HuALIoHbqaDypbcQaTzVaua3Cz4T-ef3t6PNLfPRRxvrUe4OGFX7JhEVhQWYXSsjAGidA8bljwPZY9a1ppy0iW_eNVSs93V8dNuRq40xoKkGqgo6saCEeiv_MVWxQmME9oBE1-yo74/s320/penny18.jpg" border="0" /></a>This was probably the first bath Penny got when she came home, so about 15 days after her first surgery. She still had the steri-strips over her inscision. You can see the dark maroon circles a few inches under her nipples. These are the wounds from the chest tubes. The week after this, the steri-strips were removed at the cardio office and then a few days after that an infection grew in the inscision wound. I think that added to the appearance of her scar.<br /><img id="BLOGGER_PHOTO_ID_5392993100476451858" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 320px; CURSOR: hand; HEIGHT: 240px; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjyYfow2Ud5Uk-ZvwntqKidEywFhN6ck8jZO_7MzU0uSeE0a9k5G7eYAa7DESkKmOcOOhLK2B903Y00-JptPvDpsRtr-bcPWXjC7A55YeDKQXW9S07xSMC5GM1Kc36cooUyWGGmbQzQ__g/s320/penny6.jpg" border="0" />Yay! A clean slate. A picture of her chest before she was brought under the knife. </div><div></div><div></div><div>Penelope does not have her own pulmonary artery so she will need several surgiers throughout her life. I don't worry too much about her scar since there will be future inscisions to contend with. I hope that Penelope will grow to think of them as her battle scars.<br /><br /><br /><div></div></div></div></div>Maureenhttp://www.blogger.com/profile/08653413286650360934noreply@blogger.com1tag:blogger.com,1999:blog-1395224961850495595.post-31899369361738077122009-10-15T08:13:00.001-04:002009-10-15T08:17:52.177-04:00Go get 'em Jaxson!<a href="http://unringingthebell.typepad.com/my_weblog/2009/09/3rd-annual-31-for-21-blog-challenge.html"><img style="BORDER-RIGHT: medium none; BORDER-TOP: medium none; BORDER-LEFT: medium none; WIDTH: 125px; BORDER-BOTTOM: medium none" alt="Get It Down; 31 for 21" src="http://unringingthebell.typepad.com/31for21button.jpg" /></a><br />I hope that all of you get a chance to stop by <a href="http://jaxsonsfight.blogspot.com/">Jaxson's Fight</a>. He is havng a trach put in today and it is making at least one family member nervous.<br /><br /><br />Sigh! All the challenges that we must face. Lacey, I hope that you know you are not alone. Good luck Jaxson!!Maureenhttp://www.blogger.com/profile/08653413286650360934noreply@blogger.com0