Oh boy, this is going to be fun! Over the past year and a half we have watched our blog viewership steadily climb from around 50 close family and friends, to often over 300 visitors per day. We are currently averaging around 250 unique visitors each day, with over 150 returning visitors, and nearly 100 new visitors from all over the US and across the world.
Through our blog we have developed some online friendships, and have gained and given a lot of support and encouragement to others out there who are on the preemie journey along with us. Keeping this journal of my girls' progress and development, and sharing my feelings, through the hard times and the good times, has been extremely therapeutic for me. I have found you all to be a really wonderful and supportive lot!
I am creating this post as a guestbook, and will link to it in the side panel, so as we get new visitors they can sign in too. So please, please, tell me who you are! Everyone! How are you connected to us? How did you find us? Why do you read? Where are you from? Are you just passing through, or have you been along for the ride?
My hope is to someday share your comments with H and E, so they will know what an inspiration their story is to all of us, and they will know how much they are loved!
Feel free to just leave your name if you're feeling a bit shy and don't want to leave a long post. Of course, I love the lengthy comments, but I really want everyone to participate, so even just a name would be fine! I know you are out there:)
Oh boy, this is going to be fun! Over the past year and a half we have watched our blog viewership steadily climb from around 50 close family and friends, to often over 300 visitors per day. We are currently averaging around 250 unique visitors each day, with over 150 returning visitors, and nearly 100 new visitors from all over the US and across the world.
Through our blog we have developed some online friendships, and have gained and given a lot of support and encouragement to others out there who are on the preemie journey along with us. Keeping this journal of my girls' progress and development, and sharing my feelings, through the hard times and the good times, has been extremely therapeutic for me. I have found you all to be a really wonderful and supportive lot!
I am creating this post as a guestbook, and will link to it in the side panel, so as we get new visitors they can sign in too. So please, please, tell me who you are! Everyone! How are you connected to us? How did you find us? Why do you read? Where are you from? Are you just passing through, or have you been along for the ride?
My hope is to someday share your comments with H and E, so they will know what an inspiration their story is to all of us, and they will know how much they are loved!
Feel free to just leave your name if you're feeling a bit shy and don't want to leave a long post. Of course, I love the lengthy comments, but I really want everyone to participate, so even just a name would be fine! I know you are out there:)
366 comments:
«Oldest ‹Older 201 – 366 of 366I found a link to this blog via the links on Daniel Spranger's blog (who I found via beloved monster and me) have spent the last few days reading all your archives. I work with kids with a variety of special needs and am in school to become an OT (in Ontario, Canada). Also my partner of five years was a preemie almost 24 years ago (2 pounds 4 ounces at birth 8 or 9 weeks early).
Your girls are adorable and incredible and inspire me to learn more and be the best therapist/advocate for kids like yours that I can possibly be.
Thank you!
p.s. what lovely names.
Wow, I just RANDOMLY found this and cause I recognized a friend's name from Twinstuff, took a look!
Lo and behold, our twins spent 3 wks in NICU at StJoes in Dec.! We had Dr.Weiner, Dr.Ivacko, Nurses Natalia, Nancy, etc!! How cool to find you. Are you in Ann Arbor still? Are you a TS member? Huron Valley MOM? If you can, I'd love to chat; we don't know any twin parents around here yet...my site: www.babysites.com/sites/maddocktwins Sincerely, Sara M.
Holland & Eden,
I had so much fun spending time with you two this weekend! Thanks for the laughs and making my days more enjoyable.
Love ya(s)
Uncle Jason
Hello! I came across your blog thru kaitlyns (liz) blog.....Naturally it caught my eye. I dont ever see the name Holland. I am also Holland....Holland MacKenzie! I go by Holly or Holls....So, we are connected!! LOL, sotospeak! I havent had the chance to read any of the blog.....I had to sign the guestbook 1st!
My daughter was a preemie, 33 weeker.....she is 6 and a half now and doing phenominally well.
I cant wait to read your storys about your daughters!
Take care!
Holland
scholkowfsky@gmail dot com
Hi!
I honestly do not know how I happened upon your sight but it's the first oppurtunity i have had to learn about micropreemies. Being heavily involved with pediatric oncology through various work and volunteer activities, I have little experience outside the realm of 'cancer kids'. Your girls are truely an inspiration and just too cute. Eden's smile is what drew me in - not only does it seem like she can face the obstacles she faces head on, that smile makes her look JUST like my 7 year old cousin, Justin (minus the y chromosome :) ). The strength you as parents and your daughters as little people show is truely inspirational, so i just wanted to say thanks!
Hello! Your blog is great. Thank you for sharing. My 15 year old 9th grade son was born premature at 28 -30 weeks. He was 3lbs 3oz. During childbirth he had an intracranial hemorrhage called PVL (periventricular leukomalacia). He was diagnosed with spastic quadriplegia at 9 months after great pushing. I have a site that I am building as a parent resource tool out of my experiences. You have set the fire under my feet to add more of the up close journey. parents- family-people really need the peek inside. Thanks again. Your girls are sweet as ever. kisses...Oh I found your blog through Ryn Tale's Book of Days. I have added you to my blogroll.
Best,
Lisa
www.friendshipproject.org
Hi! I'm Kathy from Salt Lake City. I stumbled across your blog when I did a google image search for micro-preemies. I was looking for pictures because several months ago a lady on my Ivillage Pregnancy forum gave birth to a micro-preemie son. Our sons were supposed to be born at the same time. My heart just absolutely ached for her...I could only imagine. She had put a couple pictures of him (immediately after his birth) up on her blog, and I became very aware of the developmental stage of my son, who was still growing in my womb.
Ever since, I've had a curiosity of how moms of micro-preemies do it. I am so impressed with all you do to survive and make the best of difficult situations. Of course some situations are worse than others, but I believe all micro-preemie births must be the hardest for any mother to deal with. I am a mother of 2, and the more I read your stories, and the stories of other micro-preemie parents, I am reminded of just how lucky I am, and I aprreciate my situation even more.
Sometimes I feel like I've lost who I am too...ok, everyday I feel like I'm stuggling to regain who I am! haha. Being a mom pulls us in so many directions that I'm lucky I've only been interupted 5 times since I started typing this! After reading your May 1st 2006 post "Breaking Down", suddenly my break-downs seem menial, and I am grateful once again for what I have.
You also offer inspiration in how strangers can address children with disabilities. I myself never really knew what to say to a handicapped person before, simply because their plight was not something I had any understanding of...but after learning more of what the children and parents are going through (via sites like yours), I'm waking up and feel like I know how to better address those I come across. So, thank you for opening my eyes!!!
Thank you for sharring your story with the world. It is heart-touching, inspriational, and instructional. You're doing the world a wonderful favor!
:)
Kathy
Hi!
I came across you're blog in November 2006 while doing a Google search on "cutest babies", and found a picture of cutie-pie Eden. Since then, I've been coming to your blog every day. Before I read your blog, I had no idea about March of Dimes, Micro Preemies, NICUs, and a lot more. I have read many more preemie blogs since I found yours, but the inspirational story of Holland and Eden is still my favorite! Keeping you in my thoughts and prayers,
Mikayla
I came across your blog based on a search done on micro preemies. My niece was born at 25 weeks; and she weighed in at 1 lb 15 oz, 13 inches long.
Heidi
Billie and John, it's been nice getting to know you and the girls (even though we knew Billie when she was kid/teenager, that's been awhile). We get regular updates thru Mom and Dad.
This is a great sight. This is the first time I've visited it. It makes me understand a little better some of the things you all went thru. I really enjoyed the multi-media.
We continue to pray for you and the girls. Hope to see you all again, soon.
Karla Sistrunk
This is Team Gharaiblets's friend, Jeff. It was great to meet you all at the MofD walk! Your girls are wonderful! I wish you all the best!
I found your site while researching "23 weeks pregnant." I'm 23.6 today. I found your site around 9:30 this morning, and it's 4:17. (Wonder if my boss questions what I do all day....) Not only are your children beautiful inspirations, you are an inspiration as a mother. I can't even imagine the level of overwhelming that life must be on some days, but the way that you care for your girls is incredible. I wouldn't know where to begin, and you utilize and search out every resource. You find them every advantage, and you ensure their success. As lucky as you are to have your little girls, they are as lucky to have such a great mom. You are truely an inspiration.
I came across your site recently while I was doing a google search for "micropreemies who won't eat". I clicked on "The Story of Holland and Eden" and started reading from day one. It was like a good book that I couldn't put down! What started as a search for ideas ended with a feeling of inspiration. I am the proud mom of twin boys, 23.3 weekers, born on March 8th, 2006 in Holland, Michigan. Sadly, I was not able to take home both boys. Lucas,my baby b, survived only 36 hours. Tyler, on the other hand, thrived and came home on his due date on July 1, 2006. He is doing extremely well, except for eating. It is such a frustrating ordeal trying to get him to eat...as you know!
Thank you for sharing your story. Your girls are very sweet!
School counselor from Michigan ;-)
I'm not sure how I found your blog, but I'm so glad I am. I have a friend from Michigan who gave birth to her son 15 weeks to early in 2005 and we were all beside ourselves when he passed away three months later.
I think what you are doing is amazing; sharing your story so that others understand and see what happens everyday. This is our chance to stop premature births. All babies deserve nine months.
Good to meet your family virtually.
I found your blog via the Disability Carnival post at Ryn Tale's Book of Days. My wife and I have two kids, and our daughter, also a NICU grad, was born the same year as your girls. We blog about our kids, too: a sanity-saving measure, I think?
Thanks for sharing your experience with us!
Take care,
Rob
I'll sign! My name is Mia, and we live in Evanston, Illinois. I found your story through a Baby William's link to Baby PVL Friends. I'm familiar with William and Sarah's story through the Babycenter preemie board, which is a great resource for new parents.
My youngest sister was born at 23w2d in 1992, weighing 1 lb., 3 oz. She's almost 15 now and doing well, with just a few minor lingeringn complications from prematurity.
Your girls are miracles. And they are in beautiful, loving hands.
Hi to Billie, John, Holland, and Eden. I'm a 16 year old girl who LOVES reading your blog. You guys are incredible, and Billie, you are such an amazing writer:) I'm considering a career in neonatology, and you have definitley inspired me!
-Anna
Here's a big Texas Howdy! I so enjoy reading your blog and seeing how y'all are doing. The joy that shines out your little girls' eyes just makes my day, every day. I cheer when they have their victories and want to hug y'all on the tough days. You can be sure I'm keeping you in my prayers.
I wasn't blessed with kids of my own. Can I be a cyber Godmamma to your two?
My name's Marion. I'm Spaniard and live in Madrid. I found your blog via other blogs (I used to read a Portuguese blog from a father of triplets which in the end was a copy of an English one called Voidstate, and there I clicked in gharaiblets.com, where I found the link to yours). I read it for curiosity. My fisrst baby was born almost 17 years ago, she was very premature, 25 weeks. She lived only for 6 hours and I didn't even see her. But 17 years ago and in Spain I guess there were less means. My second son Adrian was born in week 35 and he is OK (he is 15 now, very tall for a Spanish standard, 1.85 mt). Hard to deal with him now, I imagine it's the normal situation with a teenager. Now I'm married to an English man, who I obviously think is the most wonderful man in the world. We have a daughter called Barbara, she is 6 years now. She was also premature, 31 weeks (it seems that I always have premature babies, the problem was that doctor would never believe me when I said I had contractions). She was quite big for just 31 weeks and she did OK. She looks more like Cameron Diaz than like her father or myself.
I love reading your blog and find out how Holland and Eden are doing, and I pray for them. You are an amazing mother. I wish you all the best.
Hi Billie, I found you from Kelli at Kelli in the Mirror. I haven't read much but, I will soon. My cousin recently gave birth to Tobey at 25 weeks. He lived for 3 months. It's very refreashing to see babies who make it! Or "big girls" I'm sure I should say. Your girls are so sweet. I can't wait to read all about their story. My cousin's name is Eden Kennedy- she just turned 5. Her pic is on my blog. I've never heard of anyone named Holland but, I like it. I've always loved names.
I know I'll be back...
Kristen
This is a post to the greatest parents in the world. Your love for your beautiful girls is so touching, it literally moved me to tears. Although life can be hard sometimes, you have been very strong and passionate. Congratulations on your miracles! Too bad I missed the walk this year, I long to participate next year. I will continue to pray for you and your beautiful family.
Hi Billie
My name is Rachel McConathy and I am the mother of triplet angels. They were born at 23w6d on March 2, 2007. Courtney and Colin lived for 6 days and Jaxon lived for 12 weeks and 5 days. I love your blog. I think your micro preemie miracle daughters are so precious. I check your blog almost everyday. I know my babies aren't here anymore so maybe I read so much because I am kind of living my dreams of my multiples through your sweet family. Your strength is amazing and I know your daughters see how great their mommy is.
I was googling something 'preemie' when I found your blog this evening. I have a son who is 12 weeks old, born 13 weeks, 3 days premature. We have a blog as well that we started in an effort to keep friends + family in the loop. I'm still trying to get the hang of the blog thing, but please do check it out: http://millerleepeoples.blogspot.com. Miller weighed 2lbs, 1oz and now weighs about 7 lbs! Miller just came home from the hospital 10 days ago, on oxygen & an apnea monitor. We hope to rid ourselves of these soon! He is a special little guy & we're just so relieved that he is home. I consider this to be chapter 2 of our wonderful journey...but we have no true idea of what lies ahead. We plan to just take things week by week for now! I am so excited to read your blog & learn about your journey :) Stop by our blog some time...
God Bless-
Stephanie Peoples
Billie,
Your girls are absolutely beautiful. Your blog is a true inspiration to all preemie parents. I am the mother of a 26 weeker who is now 5. I am also President of a Preemie Parent Support group in Washington DC area. We provide a monthly newsletter as well as other services to support parents starting at birth and throughout childhood. I was wondering if you could share what you are doing with your blog site in our newsletter. Newsletter are distributed free of charge to NICU families as well as individual subscribers in the DC area and around the country. Please email me if you are interested at marybethhazelgrove@preemiestoday.org. You can check out our website at www.preemiestoday.org
i came across your blog monthes ago and visit it almost on a daily basis since. i found you by searching preemie blogs. i have a granddaughter who is 7 now that was born at 26 weeks. she is also hearing impaired. your girls are beautiful and i enjoy this blog so much. your are a inspiration to all.
Billie! I think you and your husband are awesome! I am so interested in reading about the girls and all that they and the both of you endure. You're an inspiration to many and I can't imagine all that you do while still working part time and keeping this blog. You're amazing! :)I admire you! Julie
I think I googled something and it came up...
I have twins cousins who are 3.5 months old and were born at 36 weeks.(They weighed 6 lbs)
I think they are the cutest twins ever but Holland and Eden are pretty close! ;)
Oops i forgot, they have a website!
http://quinnandzoey.spaces.live.com/
Happy third Birthday Holland and Eden! Have a great time filled with lots of Laughter, love, and great presents! It's been a joy to watch you two grow into amazing little girls!
I have been a lurker over the past couple of weeks. I stumbled across your blog when I was looking up information on preemies. My brother and sister-in-law just had my nephew 5 weeks early. Joey is doing just fine now and is already home, but in the early days when he was in the NICU it was great to read your blog and see how your girls did.
Now I've been catching up on how your little ladies have done over the years. I am the mother of a 13-month old and I can totally identify with you on the tough days of parenthood. It is good to know that I'm not alone. Thank you for sharing all you have. You have two beautiful daughters! Hang in there,
-KD
I found your blog when researching micro-preemies - my best friend had twins at 24 wks - one (1 lb 2 oz)survived, one did not. Her daughter is home now, and doing very well - all things considered. Thanks for the site - I feel like I'm intruding in your lives, but I found the history very informative. I also linked to Kaitlyn McCarthy and found a bit of information about living with a paralyzed vocal cord, which was helpful! Your girls are adorable and seem to have wonderful, caring parents!
I found this blog through another blog. My nephew was born at 32 weeks and since then I have done some research on premature babies and children.
This blog is wonderful, truly ispiring for everyone, I think!
Lots of love to you and your family
Lelia, from Italy
hi,
i'm kusya from Malaysia.got to know yr blog when im searching for info of preemie development..coz i'm a mommy of a 27weeker..my son was born on 05nov2007, he's 9months now..quite active but havent crawling yet.. time will come...your blog is sooo inspiring for me.. and i wish to write my blog soon..;)..
i'm so happy for holland and eden, such a beautiful princesses..and i do hope that my son QALIF will catch up soon...
see ya
lots of love
KUSYA
Your girls are too cute! I love reading your blog each time you write. My son will probably have Cerebral Palsy. He is 7 months old and cannot hold his head up, roll over, crawl, etc. He cannot eat orally either. He has a G-Tube. He has spasticity in his arms making it difficult to hold anything in his hands. His legs are extremely tight and it is hard to get him to sit in a chair seat or any seat for that matter. I am going through some of the emotions that you have experienced. I have friends that do not understand Tyse, I feel frustrated at times by the things he cannot do, and I asked why this had to happen. Tyse was born on his due date, but he had the umbilical cord wrapped tightly around his neck causing him to lose oxygen. By the time the doctors did an emergency c-section it was too late. The good news, they were able to get Tyse back to life. Everything went well until he had a grand mal seizure an hour after birth. The first time I saw Tyse he had wires all over his body and ventilator in his mouth. I saw Tyse four hours after birth and then he was transferred to a different hospital. I am so grateful to have him and I love him with all my heart. I look at your page for inspiration on what the future could hold. I'm hoping that someday Tyse can hold his head up, roll over, crawl, and possibly walk. Tyse has a webpage if you are ever interested in looking at it. It is www.carepages.com Care Page Name is: Tyse
I will continue reading your blogs. Thanks for having your blogs for other Moms like me who are looking for other Moms/Children who inspire them.
Sorry, my introduction has been long overdue. I found your blog while doing a google search for "micro preemie." I have a 19 month son who was born at 28 weeks weighing 1 lb 4 oz due to severe IUGR. He has a g-tube due to a severe feeding aversion, wears glasses, has BPD and was recently tested as being at the developmental level of a 12 month old. Your blog has been a godsend to me--informative, comforting, and sometimes all too familiar. Also it is great to know that when the time comes there will be two of the cutest girls in the dating market for my son :) Thank you so much for sharing your life, you are truly a special woman Billie.
I should have left this comment long ago. I found your blog while searching for other micro preemies like us. I have twin girls who were born at 24 weeks 6 days and wighed 600g and 645g. Today Lena and Kassie are doing well but are developmentally delayed in all gross motor categories. They were also recently diagnosed with CP. Holland and Eden are an inspiration for us. Whenever I get down and wonder how we are going to make it I just have to find Eden's huge smile and Hollan's grin and I know my girls will be happy too.
Billie you are an awesome MOM your girls have you to thank for their strength I'm sure.
Just found your blog and am very impressed with your courage. You are an inspiration to us all. Definitely added to my favourites!
I seem to keep finding blogs about twins; here's another one I read regularly - TwinTimes
Billie -
I too am the mother of premature twins -- 32 weekers! My son got very ill and spent 3 months in the NICU.
I have some questions for you... can you email me? Ckirman@comcast.net
Thanks -- and your blog is great!
Keep up the strength!
Caryn
I am the grandmother of a micro-preemie born at 29 weeks and just over a pound. She is 3 also and just started preschool. I came across your site while looking for information. You have done well with the twins, and you have so much courage. Thank you for sharing your very cute girls with everyone. I feel I have learned much from reading about their progress. And they have really made progress! It gives me hope. Thank-you.
I am Kate and I was linked to your website through DREAM MOM. I am an RN and worked as a student in Pediatric Rehab at the University of Michigan and I am very interested in special needs kids. I am now a Labor and Delivery RN (in another part of the country) and am interested in preemies and seeing the challenges that many of them face down the road. So, you could say that I have a "double interest" in your beautiful and interesting family. Thanks for making your world public. I admire your strength, honesty and courage. God Bless you all. :)
I am also a fellow preemie parent, I have 26 weeker with grade IV and II IVH. A couple months ago I finally found some courage to google information on micro preemies and it has led me to an amazing bunch of bloggers that give me HOPE...and sometimes that's all I need...hope. Your girls are beautiful and I love that you are sharing your storey so honestly. Thank you!
Nicole
Dear Billie,
I'm only the 247th person to sign in! SCORE!
I found your website yesterday by linking in at Tertia's blog. I have a little boy who was born full-term and, other than an obnoxious penchant for Thomas and his preachy friends, has no disabilities that we have yet discovered.
I cannot understand what your day to day life is like, but I've been very honored to read about your successes and setbacks as a family and how well you cope with everything life throws at you.
The girls appear to be just thriving, and are wonderful wonderful wonderful and I wish you guys were nearby so that we could come over to play.
What gorgeous babies you have!
I've got nothing but the utmost respect for you and your family and everything you've mastered. From the outside it seems like one major success after the other.
Many hugs and kisses to the girls. I look forward to reading more as they grow!
Krissy Poopyhands
Dearest billie
I have just found your blog via a link from my dearest darling crazy friend Tertia. I read her book and loved it so much that I emailed her and told her briefly about my story. We connected so well and then met up and met in real life and felt like we had known each other for years!!
We have become very good friends and I am a huge fan of her writing and follow her blog daily.
That is what brought me to your post on perspective.
I. loved. it!!!!!
My son josh has been in and out of hospital for over 2 and half years after being diagnosed with cancer in his kidneys at just 9 months old.
It is such a long story but to cut it short, he had a kidney transplant in feb this year. I was lucky enough to give him one of mine.
the surgery was a gret success and he is doing SO well!!
it has been an incredibly long journey, one which I would love to share with you.
he is very close in age to your beautiful girls. he turned 3 this july.
i really related to your post on perspective as i have to bite my tongue so many times when friends complain about trivial issues regarding their kids. I have alot of anger but mostly I am a very positive person.
i am so glad i found your blog and will be a regular visitor.
lots of love
liesl coppin laurenz
mom of josh
south africa
xxx
I have been reading your blog for a while... linked to it from somewhere in the blogging world!
You inspire me... you challenge me... and most of all youmake me want to be your friend!
You are a true mother... in every way possible! Keep up the great work and know that a little unknown family is praying for you and your beautiful girls!
Thanks for your great site. Would love you to share your story across at http://preemie.info.
Just send me a note.
Terry
Hi Billie.
I am pretty sure I found your link through Tertia somehow, and I have spent this entire day and long into the night reading about your amazing girls, from the beginning to the present.
I am overwhelmed by their spirits, your strength and devotion, and everything that goes with it.
Your writing is outstanding.
I am from the Chicago suburbs and am the mother of 16-month-old twin boys who were born at 34 weeks. I'll be visiting much more often from now on.
Hi,
I found your blog somehow through Tertia's blog. (I suffered a miscarriage last year and was busy reading her book and blog). I've been reading about your girls for the last couple of hours. I just want to tell you and your husband - you are two angels and I think you are the best mom and dad your girls could ask for. I pray for you and your little girls, you must be two of the strongest people I have ever met.
I'm guessing it was after John became comfortable around his new work peeps that the subject of his children came up. It is quite a story and the fact that you are blogging the entire thing is fascinating for many reasons. Your readership and the relationships that have resulted are amazing. The socio-technical aspects of this are incredibly interesting from an academic perspective...but I nerdily digress.
Though we haven't met (officially) I appreciate your writing style, persistence, and devotion to your family that is evident in your posts.
And on top of all that, John is a joy to work with and a fine addition to the team. I look forward to meeting you.
Happy Holidays.
~Spike
Hi, I found you by way of Snickollet this morning. I've just finished your post about the guest book and decided to chime in.
The girls are adorable! I'll catch up on your journey and then will become a regular poster.
Cathy
Hi there,
First I have to say that your girls are just *adorable*. I love how their personalities come through in the pictures and your stories about them.
I also found you by way of Snickollet. I have a full-term 21 month old who spent 5 days in the NICU with bacterial sepsis because I was in labor for 30 hours after my membranes ruptured and I was positive for group B strep. We were incredibly lucky in that she has no long-term problems. Your post on your twins' birthday this year about if you could ever forgive yourself made me cry because I could relate so much to the guilt. I'd had good prenatal care yadda yadda, but if only I'd been able to make myself dilate faster, if only I'd walked around more (like there could be more walking around while on two IVs, fetal monitor, internal and external contraction monitors, and having contractions with only 15-20 second gaps in between on the highest dose of pitocin they could give me), if only _something_ because surely there had to have been some way for me to avoid "making" my baby so sick. I know our experience was absolutely nothing compared to yours, but I can maybe begin to imagine what a few bits of your journey were like.
I am so, so impressed by how you've nurtured your wonderful kiddos, and your ability to just keep putting one foot in front of the other. Your girls are so lucky to have you (and you them, of course).
Finally I wanted to mention that I know slightly a friend of a friend who has CP. I haven't discussed CP with him (we've always had much more interesting things to talk about!) but he is able to move his arms some and can type, but cannot walk and cannot sit up straight. His speech is understandable, but it takes some effort. In addition to being a great persion, he did his undergrad work at Berkeley and went on to law school there and is now a successfully practicing lawyer. There are many challenges ahead for your girls, but also pride and success and accomplishment.
Hope you are all having a wonderful holiday season!
Colleen
i found you through Katie (barnyard mama)..what a great blog and beautiful family!!
So good to find your blog. As a new mom of an adopted CP kid, I enjoy learning each story,the advice from lessons learned and the hope. God Bless!
Hi there! I just found your blog and look forward to following your family! My daughter Kennedy has Down syndrome and leukemia so we know the medical world WAY more than we want to! LOL Hope you all had a merry christmas!
I came across your blog yesterday while looking for info on feeding problems in preemies. I also have preemie twins, Raya and Alexis, who were born last May at 32 weeks. I can't tell you how therapeutic and helpful it has been for me to read your journey with your little angels (I'm up to April 2006). I've been thinking I was alone in so many things, such as feeding issues, growth delays, terror of RSV, and so on, since I'm the only mom of preemie twins I know personally. Now I feel like I know you and your family, and like we're old friends! Weird, I know, but such is the miracle of the Internet! Thank you for the countless hours you've spent blogging your girls' progress. I think you are a super woman, and I'm looking forward to hearing how Holland and Eden continue to grow and progress. Thanks again! -Kryssy
I discovered your blog last week and am finally done reading it from start to (the current) finish. First of all, your girls are GORGEOUS and they seem so full of life and energy. What beautiful, smart, and fun little girls! I also have to mention that you are an INCREDIBLE writer. Your posts are very inspirational as a new mom who struggles with a lot of anxiety. You have a beautiful little family. Thanks so much for sharing your journey with us all.
I just discovered your blog today. My husband and I lived in Ann Arbor for two years while he was going to UM. We have some friends that are still there. One of their coworkers had triplets and spent sometime in the NICU. (I have been reading their blog for a while.) Anyway, they had a link to your blog on theirs. I have made it all the way to here today. (Work just is not that exciting today.) I can't wait to catch up on the rest of your story. It shows how much you love your girls. I know God will bless your lives daily with the two of them. Thanks for helping the rest of us keep everything in perspective.
I feel that it's much too late to leave a comment in the guestbook but, as I'm reading through this blog for the first time, I thought I'd try anyway!
I am from Kingston, Ontario and linked through to this blog from Google Reader. My younger brother has spina bifida and is in a wheelchair (although, he's in his twenties now so he's not that young!) and I am really enjoying learning about what it's like to parent a child/children with a disability, as I've only seen it from a sibling perspective.
I think that a lot of your feelings and emotions, Billie, are the same that my Mom must have felt. Guilt and fear, but also delight and happiness. Up one day and down the next.
I look forward to reading through the rest of the blog and keeping track of Holland and Eden as time goes on.
I found you while searching for someone else who was pumping for a micro preemie in a NICU. I am, Michelle, a woman who decided to help close family friends by carrying their baby for them. That baby turned out to be identical twin girls. At 20 weeks I was leaking water from baby A We lasted until exactly 24 weeks. Like you I spent that time on a reverse incline devoting all of my energy to willing those girls to stay where they were. It was a placental abruption that sent us to a very fast and scary delivery. The girls are 3lbs each, breathing on canulas and almost 9 weeks now. We couldn't be any luckier to have them. It has been an incredibly hard road but I wouldn't have it any other way. Your blog has been amazing to follow though I admit I haven't read it all yet. At first it was too real, to painful to read a lot at one time though I have laughed and cried with you. So very much of what you write hits so close to home. I don't know how you do it but I love your honesty and you give us all hope. Thank you!
A friend from Cafemom sent me your link. I had my little guy, six weeks ago... at only 1 lbs. It is inspiring to see how well your girls are doing!
~Heather (hottiehp21 @ cafemom.com)
Hi Billie and John, My name is Holly and I got to your blog through two other special needs parent blogs. I am a special needs preschool teacher (about your age) in Atlanta, and I also run an inclusive Girl Scout Troop. I enjoy reading your blog, so very much, it keeps me centered on what the parents are going through and how I need to always consider the whole family in my treatment plans. I would love to offer any support I can, education support. Keep on being strong, you are an amazing family and though it may not get easier, it only gets better as your girls grow to be not only your children but your friends.
I'm Kath :)
I found your blog when I was searching online for some info about CP, I have a 7 year old cousin with CP.
Both your little girls look amazing :)
KAth
Hi, I am so glad I found you!! I am eager to read everything and see all your pictures. I have twin girls 17 months of age born at 29 weeks. One twin is "normal" and her sister suffered brain damage and now has CP. So far we know it is Spastic Quadrapelegic. She is high tone in the extremeties and low in the trunk and neck. We are also dealing with eye problems now and possible surgery. I saw how your twins look so happy and lively like ours. I cannot wait to hear more about them. I am just about to give birth in the next week to their baby sister so I will come back later. Thank you for creating your blog. You have given me hope!
Janette- Mommy to Samantha 14, Katja 2, Kelly and Sabrina 1 and soon to be Baby Sarah.
I believe I am in the preemie mom blog group with you.
I have added your blog to my preemie friends list. I am also the mom to a former 28 weeker, Tristan. Stop by my blog!
Hi, I found your blog while looking for information on preemies. My husband and I are working on an adoption of identical twin girls born at 27 weeks gestation.
Thank you so much for your heartwarming and informative blog. Four weeks ago, I gave birth to twins at 26wks - they are battling on in the NICU as we speak. Reading Holland and Eden's story has really helped us in this difficult time. I'm sure we will be visitors for some time. Thanks again...
hello. Figured i'd leave a comment. It seems you have alot of people to keep up with in blog-land.
My twins were born weighing exactly what yours were. They were diagnosed with Twin to Twin Transfusion in utero and are now 6. I am actually currently typing up our story of the events leading up to their birth and then in the NICU. Feel free to stop on over and check us out sometime.
Your girls are beautiful. Twins are such an amazing blessing. I will have to remember to pop in and see how your girls grow.
Have a great week!
I've been reading your blog for over a year, but I've never posted a comment. I don't remember how I found it, but I am so grateful I did. My daughter was born 28 weeks premature. She has cp, low vision, and significant developmental delays. I know the daily struggles with feeding, therapies, doctor appointments. I also know the joy my daughter brings to my life. When I see the pictures of Holland and Eden I see pure joy. Your posts are inspirational and beautiful, even in difficult times. I know you hear it over and over, but I just have to tell you, you have a beautiful family. Thank you for sharing your story.
Hi Billie, Thanks for keeping such a detailed blog of your awesome twins developement through the years. I, like so many others found your blog when my son was born premature and had to stay in NICU. I read your entries and they gave me hope and faith in everything turning out alright for my baby. Keep up the great job it's really encouraging and informative for many like myself.
Tracy P
I just wanted to stop by and say hi. You guys are such an inspiration. After reading ALL of your blog so far, there is no doubt in my mind that Holland and Eden are going do great things.
Kate
Hi Billie!
Not sure where to begin. I had b/g twins 6 months ago and stumbled across your blog one late night as I was feeding/pumping the little ones. My babies were born at 35 weeks and their stay in the NICU was short-lived. NOTHING near what you've gone through, but I was in the midst of going through a crazy time and hit hard with postpartum and there were long nights where I didn't know if I would make it through. When I found your blog, I read and hung on every word. The story of your family took me through those long hours of the first few months and took me outside of myself and into your world. I don't know if I'm even making sense, but I felt like it was time to comment since I've been reading so long. You and John are amazing. Thanks for everything you do and for sharing your story with all of us.
Cassi (A 29 year old Georgia Peach)
P.S. Your blog is what encouraged me to get one up and running for my little ones :)
What a wonderful story. As a mom to a micro preemie, I am all too aware of the preemie experience. Enjoy each day with your girls. They grow all too quickly. My 1 lb 7 oz 25 wkr is almost 12. Good luck and best wishes to your family.
Hi Billie.
My name is Mariya and I am a mom to a little micropreemie named Alina Simone. She was born almost a year ago at 24.5 wks gestation and weighting 1 lb 11 oz (780 gm). She was in the NICU for 3.5 months, during which time I think I read every piece of information about preemies I could find on the internet, and that is how I came across your blog.
I love reading about Holland and Eden, because they share so many similarities with my daughter. She's also had some complications, such as grade III IVH and has a VP shunt for hydrocephalus. And just recently she had to start wearing glasses (like Holland!) because she is very far-sighted and has some strabismus. So far, she is on track with everything else and we hope that she continues to develop well, despite her earlier setbacks. Of course, the gazillion specialist appointments and PT sessions never let us forget how special our daughter is ;-)
I have to say that I love your blog, because I feel the same way about so many things you write about. I love my daughter so much and she is the best thing that ever happened to me, but not a day passes that I wish that things can be different and that she was born on time. But I guess that is not an option at this point, and all we have to do is go on, day after day, doing the best we can... My reward is the happiness and adoration I see in her eyes when she looks at me .... And, she is just so darn cute! :-)
Thank you for giving voice to so many of my feeling on your blog. I look forward to reading more about the life of Eden and Holland and their parents.
Hi Billie, john and girls.
I am a 31 year old mum to my beautiful daughter Kaitlin who was born here in New Zealand at 25 weeks gest on October the 2nd 2006. I check in with your blog every day. If Kaitlin is being a nightmare to feed I look for your similar experiences, ditto with hopes and fears, sleeping, equipment and just to look at your beautiful girls and feel inspired. You guys are great and tyhe best resource I have found. Now I don't feel alone in this and have hope for my wee girl.
LOL!!!! I am virtually computer illiterate and wanted to type a small amount and see if it worked first. It did!!
Kaitlin has mixed CP and PVL. She is hypotonic in the trunk, has involuntary movements, cannot roll, sit, use her arms or hands very well (involuntary movemnts) and almost zero head control. But she tries so hard. When I read about Eden and see the photos it gives me hope and also makes me smile - our girls could be sisters!!! I have a wonderful hubby and we both adore our precious little star! She has so much spunk and determination and stubborness that I know she will do everything they have said she wont. Thank you so much for the inspiration. My husband doesnt like to focus on or talk about the disabilities she has which is great in some ways, but just one of the many reasons I think you blog rocks and it helps me out so much. Take care x
Hi! I've just found out your blog from RynTales and I LOVED IT! You have a wonderfull family!!!! Your kids are totaly lovable.
I'm a mother of a 3yo girl with CP and we live in Chile, South America. So, our blog is in spanish, my inglish is not so good and we have nothing like the tomato seat or a usable wheelchair! That yelloy chair and her stander looks fabulous!!!
Well, you are an inspiration. Thanks for sharing your lifes and with tons of pictures!!!
Hello, my name is Diana. I have a preemie baby too. I found your sight looking up information on fevers in preemies. I just started delving into your story and look forward to continue reading. I'm glad Holland and Eden are doing so well. I wish you all the best. Thank you for sharing your story.
Hi Billie,
I love reading your blog- it is so great to see the girls and how they've grown! Dawn sent me the link a while back. Holland and Eden are beautiful! Your blog is so inspirational and I love that you write from your heart-the triumphs and struggles. You, John, Holland and Eden exhibit such strength and I admire all of you so much. I wish I was able to talk with you more at Dawn's shower. Thank you for sharing these wonderful girls and their life story with us all.
-Christy
I found your blog 2 weeks ago and I can't really remember how I found it - but I am glad that I did!!! I started reading it from the beginning and am finally cought up. I think your girls are absoultly beautiful and precious! You seem like an amazing Mom -- they are soooo lucky that you work in the field that you do! My husband and I are both teacher's and we see so many kids slip through the cracks because their parents don't keep up! Anyway, you have a new loyal blogger!!!
Rachel
Hi Billie,
I found your blog almost a year ago & have grown so attached to your beautiful girls. I'm considering children in the near future & hopefully will be as strong & compassionate as you are. Keep up the good work & I love Eden's name :-)
Wow, what a beautiful family you have! What a great blog as well.
I found you through another blog, I think it was called "double something" or something :) I'm kind of new to blogging and just started my own a few weeks ago. I have preemie twins (not micro though) born on Valentines Day of this year. I was hospitalized for the 5 wks prior to C-section, which bought us some valuable time and resulted in only a relatively brief stay in the NICU. We lucked out.
We met a lot of micro-preemie parents at the hospital and NICU, and were blown away by their strength and kindness.
All the best for your wonderful family, and wonderful family blog.
I 'discovered' your blog w/help from my feed reader and I'm glad I did! The twins are absolutely beautiful and I teared up and beamed w/pride at the same time when I read of their recent accomplishments. My son was born a preemie and was only 4 lbs 4 oz, so I feel like I can relate a little. Thanks for sharing all that you do...I look forward to reading more =) It's refreshing to hear stories like yours! Much better than watching the news about junk in the world. Your family stories are full of courage, determination and love. That's why I read =)!
Hello- I'm so impressed on the progress of your TWINS. I also had TWINS that were born at 30 weeks.. It is a miracle on what the Doctors and Nurses can do for them. God Bless you!
I am a preemie Mom. I just found your blog and I think your girls are amazing. I have three girls. First one was term at 10 pounds (yep that is correct) and then I had two preemies. My youngest has struggled a lot and has CP and a lot of stomach issues and lung issues but she is amazing. She will be 7 in October and is weighing in a 36 pounds so I feel you about the weight! I honestly wish I would have blogged her life so far. I am not sure where the time went. Nice to get to know your amazing family.
Ragan
Hi! I had a micro-preemie on August 8, 2006; he weighed 1 lb/13 ozs. When I look at him today, it is so hard to believe how far he has come. He will be 2 next month and now weighs 22 lbs. 23 days after birth, he had to have surgery, and did remarkably well. I still say he has been through so much; GOD definitely has a reason for keeping him here. He is a very special little boy and if I had it to do all over again, I would in a heartbeat if I knew he would be the outcome. I love him so much.
God Bless,
G.N.M.
I found your blog when I googled "23 weeks premature". Yesterday my stepbrother and his wife gave birth to twin boys @ 23 weeks, 4 days; the weakest passed away early this morning.
I came online searching for more info on what the rest of life might be like for them. I can't stop reading! Thank you for sharing your story. Your girls are surpassingly beautiful to see. I thank you and your husband for persevering under the circumstances, and testifying of the joy of love that bears us up in situations we were never prepared for. Blessings on your marriage and your children.
I'm part of the "Full House MOMs (Mothers of Multiples)" groups in Portland, OR, and stumbled upon your blog when I was looking for twins info for our monthly newsletter. I ended up sharing your blog link with my fellow FHM members through our website bulletin board. I've never come across such a beatiful, poignant, heart-warming, heart-wrenching blog--you are an amazing mother, an amazing writer and an inspiration to so many. Your daughters are truly blessed to have such a strong, loving, smart, nurturing mother as you are. They are beautiful girls and I am so glad you are sharing their story with all of us. You are ALL making the world a better place.
Mitzi--mother of Zoey (5), Piper (4) and Graham(4)
I know this post was awhile back, but I still wanted to post. I found out about your blog in our multiples group in Portland, Oregon. We have 3 year old boy/girl twins. I have been reading the blog from the very beginning. I just started last weekend. You guys hand in there, you are an inspiration. I am excited that Eden and Holland are getting ready to go to a school. As a teacher, I see how the youngest children can be an inspiration to other children. The things they teach other children last for a lifetime.
Hi Billie,
You have beautiful girls. I enjoyed reading through your blog. I found it through my local twins group site. I just brought my girls home from the hospital a few weeks ago--they were 33 weekers-- and I'm still adjusting to life as a mom of twins. You and your family are a great inspiration to us! Thanks for sharing your family with us. I'll be sure to check in on you guys! Thanks, Jessica
hi thhere-I got to your site through the SCE list-not even sure how I linked over. Either way, your girls are gorgeous! I have been looking back at your older posts, and I have a questio-I have a friend whose daughter just got a cochlear implant-what are those headbands Eden is hearing to hold all her stuff? My friend has been struggling iwth keeping everything attached well-or is it just a regular kids headband and you slip it over? Or is it a special headband for cochlear implants?
thanks!
I'm adding you to my list of daliy blogs :)
I have Shannon at Cerebral Palsy Baby and Katy from Bird on the Street to thank for finding you. You two, as compassionate, loving parents, are amazing. Holland and Eden are wonderful, in photos and in the spirit I sense even though an online blog. Owen has a bit different story, but a story just the same:
http://owenkeithmarshall.blogspot.com/
Anyway, I just wanted to introduce myself and let you know that I now read your blog... Thank you for reaching out in this way and sharing your stories. Both are greatly appreciated.
Warmly,
Stacy Marshall
Hi,
I found your blog just over 2 1/2 years ago when my twin girls, Aspen and Siena were born at 24 weeks and 3 days (1 lb. 8 oz. and 1 lb. 3.5 oz.)and I was searching the internet for any information I could find. We had just moved from Durango, CO so our girls would have been born in Denver had we stayed. We now live in NC. I have not checked your blog in a long time but it was so encouraging to see how good your girls are doing and to see you going to Disney. Our girls will be 3 in November and are doing great! Your posts are an awesome resource for other parents of micropreemies. Thank you.
Pamela
I don't remember how I found your blog, but I've been reading for a month now. I think your little girls are absoultley precious. hope everything is going okay.
My latest book, A Week in November, is a sequel to my book Professor Conundrum Mysteries! In the first book we learned that the professor's kids were twins (a boy and a girl) and their mother died during delivery. The daughter grew up to be a teacher and the son grew up to be a war hero in Vietnam. In the sequel (which takes place in 1963 when the twins are 13) we learn that the babies were preemies, she is small for her age, and her emotional problems are partially explained by her low birth weight and partly from the death of her mother at the moment she was born... and of course from the lack of a mother growing up. If you'd like to see what she looks like (on the book's cover) click on this link >> http://www.my-jia.com/A_Week_in_November/cover.htm (if it works)
I found your blog through a friend of a friend and I am hooked!
Your twins are the same age (chronological age) as my oldest child, my son.
About 11 months ago I had twin girls of my own. I went into premature labor at 29 weeks, and of course, worried about ROP, deafness, brain bleed, NICU, and all the things you have had to deal with. My dr. told me that if born then, my girls would probably be "survivors" but I couldn't stop thinking about long term effects. Luckily, my labor was able to be stopped and my girls were born at 36 weeks.
I am totally in love with your beautiful girls. The only thing better than one pretty baby girl is two pretty baby girls!
I love your blog. It's real and inspiring. I'm on team Holland and Eden!
I can't remember how I found your blog, but I'm so glad I did. Reading about you're family is so intensely inspiring - You're such an amazing mom, and you hav such personality-filled, happy little girls. Watching as they grow and change and learn is incredible, and I feel fortunate to be able to share even a little of the pride you must feel every day looking at them. I wish you all the best in the future, though I know you don't need my wishes as you guys are fully capable of making it happen on your own.
I was searching on line for some advice on how to get my 29 weeker to sleep through the night (he is seven months actual next week) and I came across your amazing story! Reading about the girls made me cry here at work...out of joy! They are simply gorgeous and what a strong duo! I just wanted to say from one preemie mom to another...congratulations on your beautiful children.
We also have a blog...if you ever want to check it out, here is the link:
www.coultertorin.blogspot.com
Hi Billie,
I too am a Mom of Preemie Twins. Well, they were born Nov 2005 and are 3 Y/O today. They were in the NICU for two weeks. I also have a blog you can check out.
Today, my twins are full of life and are never, ever still.
God Bless you and you precious family.
Mom of Twin Girls
I just found your blog via google while researching micro-preemies. I am the mother of a 23 weeker, she was born at 1 lb 6 oz and 12 in long, she is now 8 yrs old and doing very well. She is in 2nd grade with her younger brother and has exceded all expectations the Dr.'s had for her. It is so helpful to hear the stories of people who have had the same struggles and joys. Your girls are beautiful.
Hi What A wonderful website you have created for your beautiful girls, I havent had chance to read all of it yet due to new baby boy but I will get round to it. My daughter was born at 30 weeks weighing 1lb 14oz.
http://www.babyhomepages.net/keeleycharlotte/
Clare x
Hi, I read the story on your precious girls all the time I had a baby girl (my first daughter died at 24 weeks) at 29/5 weeks she is precious she was IUGR, she weighed 810 grams and although I never had any of the BIG bumps that you did, my daughter did come down with necrotizing endocolitis or NEC which is known to kill about 80% of preemies. I have been through so much with her and although she is out of the hospital and healthy (still small about 9 lbs at 5 months) it was worth every minute I spent in the NICU. She survived NEC with no lasting effects and other than a cannula for 13 days (she was only on a vent for about three hours) Other than that she has been healthy with no other problems, she was only in the NICU for 46 days, Please email me I want to know more about your girls... jym_beam@ymail.com I look forward to hearing from you
Jayme
Hi
I am just interested in kids of all ages
Keep up the good work. My wife and I are very happy for your little girls. We have twin boys born at 26 weeks (2 lbs each). One of our boys has spastic diplegia CP, and the other boy seems to be as healthy as a horse. Their trips through the Royal Oak Beaumont NICU were vastly different. One boy breezed through, while our other boy struggled the whole way. We are coming to grips with what the future holds for our family (they are 22 months old now), and seeing how Holland and Eden are doing, as well as your whole family, is truly helpful.
Best wishes.
OMG, your girls are beautiful, I am a mom of twin boys who were born at 30 weeks and I thought they were small, boy was I wrong. I can't believe how strong your little ones are and I wish you all the best in the future with your beautiful little girls.
Hey I love your website. i just wanted to let you know that I also have 24 week twin girls and they were born on August 17, 2004. They are my miracles. I cant believe how much our stories are the same. It is great to see other mirco preemies that are doing great!!!
Hello,
I am so glad I found your blog. We have seen you at the annual NICU reunion the past couple of years. Our twin girls were preemies too at SJM, but in no way, shape or form micro-preemies. I will definetly be a regular reader from now on.
Wishing you all the best.
Beatrix
Hi Billie,
Your girls are beautiful and I love your blog. We have a 4 year old little girl Anna who has CP. We adopted her at 1 year old from Armenia. She reminds me of your girls. You are amazing with your girls and do such a great job including them in all activities.
Take care,
Susan
Hey, Billy I miss Eden. I miss the girls. I miss work. The video is so cool. Tell Eden That she is so so silly and I miss her so much. I have never been this sick. I can't wait to feel better. I have another ultra sound on Monday cross your fingers and your toes. You guys stay healthly.
Hope to See U Soon jess
Hey, billy my email is Jessannbyrne@yahoo.com
Ms. Jess (I can't click the E-mail Link from this computer)
I found your site while searching for preemie information. I am a proud parent of a preemie girl, Gianna Faith born 26 weeks and wieghed 1 lbs 5 oz. The day I found your site I read the last four years in one day! Holland and Eden are truly inspirational. You and John's strength is amazing. It has been fufilling to read your ups and downs, just knowing that other people have gone through all of this. The rollcoaster rides of one step forward, 2 steps back, and the multitude of tests. I will continue to read and pray for your family. Thank you for putting Eden and Hollands story out there for others to read. It truly is amazing to watch them grow. Stay strong,
Thank you.
God bless
Dana R.
Hi! I'm 14 weeks pregnant with twins and did a blog search for twin blogs. Yours is fantastic! You're an awe inspiring mom!
Hello !!
I miss my Eden and Holland. I hope all is well. I finally feel human again. I was wondering if you and the girls wanted to get together Wed or fri this week. (if you r in town) Also I had a dream about Eden She was walking!!! Eden had a walker is was push up a hill she fell down on her bum stood up and walk toward us looking for comfort and we yelled " your walking Eden!!" I even remeber her face and her arms reaching out for a hug.If your able to get together My Cell 248-773-9427& email jessannbyrne@yahoo.com
I randomly found your blog and had to tell you (not that you don't already know!) how beautiful your children are. I am a music therapist that works in early intervention in Massachusetts. I run a weekly group for mothers and babies and many of them were micropreemies. The amount of care and devotion that parents put in amazes me. It is clear that you love your girls so much and work hard to help them succeed. What lucky girls they are.
Michelle
nannymimi@gmail.com
I just saw a family with three 3-year-old micro-preemies that has a GREAT video in a national TLC/Ragu contest. They need the most daily votes per computer to win a Disney cruise and get their video on The Discovery Channel. You should really check it out and direct your readers to it at http://tlc.discovery.com/ads/ragu/vote/index.html . Theirs is the one on the left!
Hi Billie, John, Holland and Eden,
I stumbled on your site a couple days ago after doing a search on google for micropreemies. I stayed up last night reading each and every blog you guys wrote. It was better than any novel I have ever read. You write about your children and your lives with such passion, positive and negative.
Your post about about having perspective really hit home. I have 5 kids, two with disabilites and two of whom are twins, one of which has very mild developmental delays. I know things could always be worse and I am so thankful that they aren't.
You are a new source of inspiration for me. To see how hard your family has worked, how far your family has come and how far your family will progress just astounds me. You give me hope that the daily interventions will all be worth it in the end.
You, your husband, and without a doubt Holland and Eden have an amazing amount of resiliency, strength and stamina most people can't even fathom. Keep up the great work!
I know my life will never be the same after reading about these two AMAZING girls. Thank you so much for allowing people to get a glimpse (at times much, much more) in your lives. I truly believe anyone who hears your story will be better for it.
So thank you again. For writing, for having such amazing children and for sharing them with the world!
Rikki
PS- Holland and Eden are absolutely ADORABLE! Easy contenders for the cutest-kids- ever award!
Hi Billie-
Two days ago I found your blog and have been hooked ever since. I was searching online for info on PVL and I'm so glad that I found your beautiful family! My son Jasper was born last summer on July 7 at 26 weeks gestation. He did really well during his 80 days in the NICU and is doing awesome. Six weeks after Jasper was born we found out that he has PVL. He is doing really well with PT and OT and we are just waiting to see what the future will hold. Thank you so much for sharing your amazing story and awesome pics. It is so encouraging to me to know that whatever happens with Jasper and whatever diagnosis that might come we will be able to endure it. Thank you so much for sharing your story, (I'm still in 2006) whenever I can steal a moment or the kids are sleeping I can't wait to keep reading about Eden and Holland. You have a beautiful family!
Tina Jacobsen (Zeeland, Michigan)
Hi Billie,
I just wanted to tell you that I love your blog and you, your husband and your girls are an inspiration. I had my twins at 25 weeks 4 days gestation and we have had many challenges since then. Our son is visually impaired and both him and our daughter are still struggling to "catch up". I enjoy checking in on the girls.
Hi,
I am mum to a baby boy born last October at 26 weeks weighing 955g. I found your blog recently and love to check it for updates. It is great to read about your happy family.
I ran across your blog while searching for growth charts for preemies. My daughter was only 3 weeks early, technically considered full term, but she's still small for her real age (and even for her adjusted age). I've been enjoying reading your stories in between dealing with a constantly cranky 6-week-old -- it's about the most my sleep-deprived brain can process. :)
First, I do not speak English well, I'm Spanish, so the translation would not be very good. I still long your blog, very much admire what they are fighting their daughters, and good sense of humor that have to do things. I am a mother of a girl who was born with spina bifida, which coincidentally is also called Eden.
It has 14 months, but it is a true fighter.
I will continue the story of Holland and Eden, all your progress.
http://www.youtube.com/user/miguelyeden
My friend turned me on to your blog and I plan to follow it. My daughter, Madi, has spina bifida and she thought you would be a great resource because of all the research you have done on adaptive technology, etc... My daughter's site is www.missmadisjourney.blogspot.com.
We just wanted you to let you know how inspirational you were to us after our sons Keegan and Collin (born Dec 22, 2007, at 24 weeks, each weighing 1 lb, 9 ounces.)were born. After spending nearly 5 months in the NICU, we brought our guys home and they are doing quite well. You two are very strong...
Thank you for sharing your story, and we are glad your daughters are well and happy.
Kelly & Chuck
Dallas, Texas
I have read the entire 5 year blog in the past 2 days. I am amazed and inspired by your strength and love for your children. I had twins (boy and a girl) at 23 weeks, 5 days. My cervix unexpectedly opened. My daughter was 1 lb 2 oz and my son was 1 lb 7 oz. They both had PDA Ligations and my son had ROP eye surgery and hernia surgery. They are now 8 months old and weigh over 12 lbs. Thank god they did not have brain bleeds and show no sign of major disability as of now. We spent 124 days at the Joe DiMaggio NICU in Hollywood, FL and everyday was a rollercoaster. I still worry over every sniffle and wonder what the future holds. I feel strengthened reading your blog, reading how much happiness and joy your children bring you, even with the obstacles you face each day. Thank you for writing with such clarity and detail. Most people don't understand what it means to have a micro preemie. I look forward to following your story and look forward to their future success.
Sincerely,
michelle Lucas
mich0824@aol.com
Davie, FL
Regarding potty training. I have identical boy twins born at 30 weeks 6 days. I had to have a c section then because of pre eclampsia. I started trying to potty train at about 2 yrs 3 months. It was no use. I tried again at 2yrs 6 & 2 yrs 9 months. No hits on the potty at all. I started again at 3. They were about 3 yrs 2 months before we got a single hit. It then took another 3 months for 1 twin to be potty trained about 3 yrs 6 months. The second twin was about 3 yrs 10 months. This was day time training. They were both trained at night round about 4 yrs. They are now 6 yrs 7 months & still have occasional accidents at night, the later trained during the day twin more so than the earlier trained twin. Keep at it, especially for the day time. Some kids still wet at night until they are in double figures, 'normal' kids I mean.
I found your blog from 6yearmed- and I am reading from the beginning. Thanks for sharing your story and the girls are beautiful!
Stephani
Virginia Beach
Hi Billie,
You may remember us from long, long ago... Collin and Cyrus? Well I totally fell off the map when my ex and I split up a few years ago. Hard times gave little time or energy to blogging. Things are better now and I am going to be starting up my blog again soon (I am moving and want to keep my family in the know) and I thought of you guys. Low and behold here you are going strong girl!!
Wow I am so impressed by how well Holland and Eden are doing, how well YOU are doing and the strength of your family to stay so positive. You are an inspiration, my dear. Truly.
I cannot believe they are five already! Look how far you have come and I praise you for having the courage to say all the things I think but dont feel comfortable talking to other moms about. Potty Training at Five? Preaching to the choir my dear... I am SO with you. LOL
Collin and Cyrus are doing very well, and after doing a little scanning of whats going on in your life I see we still have many parallels. Thats so refreshing! I didnt realize how much I had missed you, my fellow micropreemie twins. Bless you!
Kelly, Collin and Cyrus
Hi! I am a mother of two micropreemie twins (a boy and a girl). I delivered at 25 weeks 4 days. My twins are will be 15 months old at the end of this month and are doing great! I found your blog when I was googling the word "preemie twins". What I was originally looking for was speech delays in micropreemie twins. But when I typed in just the two words "preemie twins", the google bar filled in '25 weeks' and I thought it was a great coincidence that my twins were also 25 weeks so I clicked 'search' out of curiosity. I saw on one of your entries that one of your girls could not hear and that may have been causing her delay in babbling. I was just wondering when you caught that she couldn't hear well, because I'm trying to figure out if that is why my babies are making any consonant sounds or vowel/consonant blends. Oh, and THANK YOU for your blog! Its been nice to read about your girls and how well they are doing :-)
Hello, My name is Athena & I am the mommy of a micro-preemie...my precious boy was born @ 23 weeks & 1 day gestation on August 5th...He is now 5 moths old and still in the NICU...i have been browsing through blogs for inspiration and came across yours...your girls are beautiful and their story is amazing...I only hope that as ayden grows he can be just as inspirational to others as your girls are!
Reading your blog made me cry and smile. I found your blog through Google when I was searching for preemie twins.
I just gave birth to my twins a couple months ago. They were born at 36 weeks.
Your girls are so adorable. I love to read about their stories and how they have come along.
Thanks for sharing photos and stories. You have done a great job with your blog.
Best wishes,
Patty
I thoroughly enjoyed reading Holland and Eden's stories. They are truly an inspiration. I also have a micro preemie (24 wkr getting ready to turn 13) Holland and Eden are true fighters. I know the journey has been tough, a true roller coaster. But their obstacles and challenges are what has made them who they are. I know you are proud of your little ladies, just as I am of mine.
God bless,
Karen
what amazing princess's god has sent you.
i am new to this and not sure how this all works but would love to follow your story. i have a premmie who has just turned one and our story is no where as complexed as your and are so thankfull to have her with us today.
all the best
heidi murphy
south australia
Hi, my name is Julie and I am a mother of a 27 week preemie. He was delivered at Beaumont hospital due to the passing of his identical twin. I would just like to say Billie that you are amazing, strong, smart and beautiful. Your girls are just like you! I love looking at pictures of your girls and watching them grow. Thanks for sharing your story.
Hello, Im Brittany a 21 yr old mother of a micro preemie. Reading and looking at you guys stories reminds me so much of my story. My micro angel name is Brandon Ja'Shad he came on April 10, 2008 when he was due to arrive June 21, he weighed in at 2lbs 5 oz. He had a pretty good journey. He has been diagnosed with asthma and eczema. (THATS IT) Thank GOD. Being a young mother of a preemie has been very rough but an AWESOME experience. I say AWESOME because it has showed me alot from all the good to all the bad. I have came to realize that the smallest little things are some of the most precious BIG things. Just wanting you to know that your story has touched me dearly and I am so thankful that the girls are doing GREAT!!! I will continue to lift you guys up and please continue to inspire others.
Hi, I found your blog through Katy (Bird on the Street) and started reading from the beginning. Your story is so inspiring and your daughters so precious it's impossible to leave without knowing more about their progress! The preemie in our family (a cousin's) was also a twin although his brother did not survive. He was born in 1980 with a BW of 18 oz. There was so much less known back then and he was in the NICU for about a year. Holland seems to be paralleling his journey, although at a much faster pace.
Thank you for sharing your journey! -cindy
I am the mom of two beautiful boys born at 27 weeks. Almost 9 months old now (6 months gestational age) we are doing beautifully as a family and cannot believe we got through those tough initial months. I heard of your blog from a person with whom I was discussing "C-Pap nose." He said that this is simply the best place to go if you have preemie twins. Thank you.
Hello,
I am 28 weeks pregnant and a few weeks back, I started reading stories about preemies because I wanted to know what the outcome would look like if the baby was born too early. Luckily, everything seems to be going fine, but that's how I found you and I found your posts so interesting that I just wanted to read the rest and see how all of you would do on the long term. I am still going to have to catch up for a while, since I am browsing through everything in order, but I am becoming really attached to your little girls, you paint such a lively portrait of them. Thanks for the inspiration and good luck!
Hi i found your blog when i googled micropreemies holland and eden are awsome little girls
Lindsey Massachussetts
Hi Billie! My daughter Lola was in the PLUS program with Eden & Holland. She loves those girls so much! We must, must, must get them together this summer! I was referred to your blog by Miss Jess, who was also a parapro for my son Jamie when he was in the PLUS program 2 years ago. He has Aspergers. It's good for me to see what other parents of special needs kids think, struggle with, etc. It is so easy to feel like no one understands. It's very easy to not delve into the dark sides of parenting, when people ask how things are going. I commend you for talking about the good times AND the bad times. I don't think I'm that brave...
Jodi W.
Wow. Thanks so much for sharing. Its great to know there are others who have been through a similar situation. My twins, Colson and Zhane were born at 26 weeks. They are 3 1/2 now. I stumbled upon your blog while trying to find potty training advice. Both twins are diagnosed with cp. Colson has mild spastic dipeligia and Zhane has spastic hemipeligia.(left). we live in a rural area, not alot of support out there. So again, Thanks! Gwen L.
I love my wonderful 3 year old twin boys! They were born at 26 weeks. I stumbled upon your little cuties while scouring the web for advice. The guys were diagnosed at age 1 with cp. spastic dipeligia, and spastic hemipeligia. i don't have much support, I live in a rural area, it gives me hope, to see someone else whos been through it.
-gwen-
Hi Billie,
I just read your whole blog in 3 days. Someone posted your link on a preemie support group at inspire.com. My Nephew was born at 28 weeks on 6/26/10 but he only weighed 14.5 ozs. Your story has been truly inspiring to me. We have no idea what to expect or what he may face but you (and you beautiful family) give me faith that we will be able to get through it.
Thank you so much,
Adele
Hi Billie,
I found your blog about a year ago. I forget exactly how, I think I was reading something else about micropreemies and stumbled upon it somehow. I'm a premedical student, and I'm very interested in both pediatrics and critical care medicine, so I actually read the much older entries, about their time in the NICU, first, but I've followed the current entries since then. Your girls are so precious and funny, and it's amazing to see how far they've come. Keep blogging! :)
I found your videos on youtube a while ago and they just happened to pop up again yesterday. And since then, I've been pretty much reading your blog all day long.
Your girls are gorgeous and I'm impressed by how the four of you deal with everything you had to go through.
I wish you all the best for the future and that the girls will continue to grow up as very happy girls - they sure are loved by thousands of people.
Anika from Germany
Hi
My name is Jenna and I came across your site. Ur girls so cute and such miracles. They are brave courageous fighters and hero's. I was born with a life threatening bone disease. My site: http://www.miraclechamp.webs.com
I am so glad I found your blog. I am a mother of a preemie who was born at 28 weeks. It has been a rollar-coaster ride for my husband and I and to know that we are not alone in this journey helps me so very much. My daughter Ava is 2 1/2 now and isn't walking yet. Of course that doesn't slow her down one bit but whatever her future holds we see her no different. I think I have more bad days then her. I find comfort in your entries and will continue to read them. Again, Thank you for sharing. Ann Marie
I'm 16 years old and was a micro preemie as well. I was a 24-weeker and weighed around 1-lb; my lowest weight was 11oz which frightens me a little ;) It's so interesting to see the stories of kids who were born with similar conditions to my own. I was in the NICU for 3 months after birth with a ventilator and such. When I was 3 I had open-heart surgery; I had a heart murmur and they needed to close my PDA valve. I admire you and your family for doing so well and being patient through difficult times of the lives of preemies :) Wishing you the best, Colleen.
Hello Billie, John, Holland and Eden. I am 16 years old, was a 24-weeker at around 1 lb, and just discovered your blog :) I had open heart surgery at 3 due to a heart murmur and open PDA valve. I don't know much about my early years but I'm sure it was incredibly stressful for my family. I admire your patience in the difficult times and wish you all the best :)
-Colleen
p.s. Eden and Holland are adorable girls, be thankful :)
I came across your blog when looking up information on CP. I recently had twin girls born at 26 weeks. They spent over four months in the NICU and had numerous surgeries,complications, and ups and downs just like your daughters. I have spent countless days and nights worrying about what the future will bring. My girls are only 3 months (corrected age) and obviously are at very high risk for developing CP, we wont really know until further down the road. Seeing your girls and how beautiful, outgoing, smart, and independent they are is such an inspiration to me and my family. I am so blessed to have received such little miracles from God. I know that no matter what things will be ok! thank you for sharing your story with us. God bless you and your beautiful family. Sincerely, Lyndsey Georges
HI, my name is Iris and I'm the proud grandmother of micro-preemie twin girls. They were born on June 30, 2010. Kileigh, the oldest and largest was at 25 weeks gestational and 2 pounds 2 ounces. Her little sister, Hope, was born at 22 weeks gestational developement due to the umbilical cord being implanted in the uterin wall instead of the placenta. Hope was just 12 ounces at birth and we were continually told that she would not survive. She is now a little over 10 pounds and her sister is a little over 12 pounds. They both escaped most of the major problems micros have, but only time will tell how the really have faired. While we were making trips (both parents were only 16 when the girls were born and so I took them to see the babies)to the NICU I would spend a lot of time researching preemies. Your website has let me know that you can face whatever comes your way with grace and dignity and pass this along to your children. It is obvious that you have done both. Thanks for sharing your beautiful girls with all of us.
I just stumbled on to your blog looking for some twin blogs. I am the mother of preemie twins, born at 33 weeks. I also went into labor at 23 weeks at 4 cm dilated, but it was controlled with drugs and I was sent home on bedrest. At 28 weeks I was readmitted and fit for a turbutiline pump which stopped my contractions until 33 weeks 3 days. My baby girl spent 1 month in the NICU and my baby boy 5 weeks. They are now happy and healthy 3 year olds and I am thankful every day for the care the doctors and nurses gave to me and to them. You are an amazing mother and an inspiration!
Hi there. Thank you for your blog. It is really interesting and informative. I found your link on a friends blog and decided to have a read. I am expecting my first and it is such an encouragement to see the developments and how you cope with the struggles of every day etc. I live in New Zealand.
All the best
Sandra
Hi,
I first came across your blog after searching for 'micro preemies'
I gave birth to twin daughters Eden and Willow almost 11 weeks ago. They were 23weeks 6days gestation.
I've only just started reading but hope to catch up during any free time between NICU visits.
In a weird way it's comforting to know that theres others out there that have gone through the same emotions, feelings and thoughts.
Most people don't truly understand but there those select few of us who know exactly what you're going through.
Hi Billie,
I just found your blog a couple days ago via Kristina's blog (howlifehappens- about Emma and sister Julia) My name is Whitney and I live in Oklahoma. I have an amazing 15 month old daughter Tessa, born with Congenital CMV (www.bynumfourblog.blogspot.com). Eden and Tessa definitely have some similarities between their CP and profound hearing loss. I just love how you write and have really been enjoying starting from the beginning of your story. You are much much further in your journey than we are, but I can't tell you how encouraging it is to read about and see those 2 precious faces, Holland and Eden! God bless you and your beautiful family!
~Whitney
I came to your blog through a link on my sister-in-law's blog about her twins with CP. My little girl was born at 32 wks 5 days - much bigger than your girls! But the whole preemie and NICU experience has made me so much more aware of other preemies out there and the miracle stories are all around us. Thanks for sharing!
Sarah - Peace River, Alberta
Hi.
Just sent you an email, but wanted to sign the guestbook too!
Hi Billie,
I have been reading your blog for years. YOu are an amazing mom. I feel less alone when I read your blogs. I have a micropreemie, 1 pound 9 ounces,born at 27 weeks. She is doing remarkable well p therapies, etc. She is now a normal 4.5 year old. Howeevr, she is tiny 1t 27 pounds, but she sure is mighty!
I also have a 32 weeker boy who is such a sweetie!
I just want to commend you on what an amazing mom you are to your incredible girls! One day they will realize how lucky they are to have you as there mother! It's is heartwarming and to see the love and joy these miracles have brought you!
Best regards,
Supriya
Hi! I am 19 years old and I just started reading a few weeks ago. I am currently doing my undergrad in exercise science with plans for pt school. I want to work with children, especially those with disabilities. Eden and Holland are precious and they inspire me to work hard to achieve my goals.
Jessica from ga.
Love your blog & have much more to read. I am the proud Mommy of a micro-premie little girl named Carley Mae. She came into this world @ 23 weeks & 5 days gestation and has been a true little fighter the whole way. Her weight @ birth was 1#7oz & she will turn 9 years old this coming July 12th. She has certainly had her struggles & still deals with many on a daily basis. The story of your girls truly touched me & wanted to thank you for sharing your story. Sincerely, Stacy Calvin in Wilmington, Ohio.
I am new here. My stepson and his wife just had a micro premie born at 24 weeks and 1 day. She is now a week old and doing good. No breathing tube and they are upping her fomula intake. She is up to 5mls every 3 hours and they were going to up it again today. They took her off the UV light 4 days ago and she is doing wonderful. Not sure how I came across this blog but I have enjoyed reading it and watching Holland and Eden grow up in pictures. I will definately keep reading this.
Findlay, OH
Hi! I came across your blog when searching for similiar situations at ours! I also delivered Micropremie twins at 26 weeks. We had twin-to-twin transfusion and a complicated pregnancy. Timber (baby b) weighed 1lb 6 oz and Tinley (baby a) weighed 1lb 10 oz. We lost Tinley 31 days after delivery to an infection-she also had a grade 3 and 4 brain bleed so
I become very interested to see others. I haven't finished all of your blog, but love how detailed you've been! I wish I would've kept better notes but after reading yours and noticing how awesome it will be to look at years down the road, I love it!!
I recently had micro preemie twins. My identical twin girls were born May 30, 2012 at 26 weeks and 5 days gestation. We were able to bring our girls home on October 18 after a long 141 days in the NICU. I was considering starting a blog of my experience and happened upon your blog.
I really enjoy reading about your girls and the progress they have each made. Having micro preemie twins is a roller coaster (as the nurses and physicians tell you) and it is sometimes difficult to share with others who don't fully understand what you have gone through.
Thank you so much for sharing your story and I will continue to follow your posts!
Take care to you and your precious family.
Michelle
I found your blog through a Google search after one of my sorority sisters gave birth to twins at 24 weeks at the end of January 2013. Unfortunately, one of the boys did not survive, but his brother is fighting in the NICU and doing well. I admire your strength and the heartbreaking honesty with which you've written about your experience with motherhood. Your girls are beautiful, amazing kids and I know my friend's son is going to be just as great as they are. Thanks for sharing your inspirational story with the world - I read through the whole blog in a matter of days.
I am just a young teenager. I love kids. For some odd reason I live reading mommy blogs. I have no idea, like many others, how I found your blog. I baby sit four kids and two if them are twin micro-preemie boys who are now 2 years old. As far as my inexperienced expertise goes imam pretty sure they are caught up developmentally. Your story makes me so muh more thankful for them everyday. I found your blog about a week ago as I am reading it from beginning to end. I hope that Eden is doing better with her CP (from the time this post was posted) and that Holly is still blossoming as she is now!
Thanks for taking the time to read my comment, even though I am just a kid.
Kat.
Hi! I got linked to your page through CP. I don't even know if you still read this, but cheers from British Columbia, Canada!
I have yet to actually read all of your posts of your story since I have just discovered your blog. I found it while searching something...can't remember what exactly. I never read a story from the end. I like to learn how everything was and came to play. Currently I am reading about Eden's CP and their 2nd birthday coming up.
I was premature and have 3 brothers (one is my twin) with a disability so I know that what you went through my parents can relate. Since I am considered "normal" I can relate since I was a curious child about why I didn't have a brother who could do as I did or a big brother who acted like one. I love reading all your posts because I love seeing your girls striving.
Best of wishes,
Kayla B
Hi, I found your blog after looking onkine. I had a little girl at 27 weeks weighing 1 pound ten and have found your blog to be the best therapy I could ask for! Your comments about eating could have come from me! I've read back through everything and your girls are a true inspiration and beautiful. You are clearly a lovely family and I look forward to watching it grow! Love from becky in England ! Xx
Billie ~
I found your post while searching for a micro-preemie growth chart!
I delivered a 1#, 11 inch. baby girl July 18, 2004. Isabella was born at 24 weeks, 6 days as a result of my having severe preeclampsia with HELLP syndrone. Miraculously, her only problems were ROP (she had 2 surgeries), BPD (from being on the vent 2 1/2 months), & SGA (small for gestational age). She was in the NICU 109 days.
We rode the the same roller coaster with a few different twists & turns, always looking for a mirco-preemie her size and never came close. Reading your blog & seeing the pictures of your girls' first year brought back so many memories ~ I wish I would have seen your blog at that time!
Isabella just celebrated her 11th birthday Saturday. She attends a school that specifically addresses her ADHD & dsylexia and is doing very well ~ will enter 4th grade this August.
I would love to know how your girls are doing on the growth chart. Isabella is 4ft & weighs 46 lbs. We're doing a slow climb back towards/beyond her highest weight of 50 lbs. The pediatriac gastro diagnosed her with a "likely" celiac diagnosis last April...I have had her on again/off again with this strict diet. She is an extremely picky eater to begin with and when I put her strictly on gluten free she hardly ate over the course of 3 weeks dropping to an all time low of 42 lbs. I got a 2nd opinion from an holistic MD that goes down to the cellular level ~ I'm so frustrated. Was told by this doc that she was too young to diagnose as celiac but that she (along with everyone else on the planet) has yeast in their blood & a slew of other mineral deficiencies ... My main concern is ~ Isabella needs to gain weight ~ If something big comes along, she has no reserves to fight it. So, having said all this, how are your girls doing as far as gaining weight? And anyone else, who is reading, please chime in ... my father has always said, doctors are "practicing" medicine.
Thank you for taking the time to blog about your girls from day 1. Please continue. I know doing so helps you, and it sure helps the rest of us who have traveled this path.
RosemaryB
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