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2/17/92 — Our NICU Journey Day 93

February 17, 2011

Isaac — 1048 grams

Molly — 1416 grams

Anyone familiar with premature infants will recognize these “preemie eyes” — big, bulging eyes in a still tiny face. But the real eye danger for preemies is not how they look, but a condition called retinopathy of prematurity (see Glossary Page) or ROP. After several weeks of delay, Ike and Molly both had eye checks on February 17. The news was not good.  After three full months on the NICU and a couple of relatively stable weeks, I suddenly felt us plunging down another steep dip on the roller coaster. I don’t know if you can tell by what I wrote that day, but I was devastated. Just when I had started to believe in a happy, healthy future, the words “blind” and “blindness” were being tossed around, and I felt totally blindsided. It was a horrible day. I sobbed for hours until, in one of his more brilliant partner interventions, Kenn kind of verbally slapped me by saying: “Relax. Blind is better than dead. One way or another, we’ll figure it out.” One of the many reasons I’m glad I’m not a single parent.

Isaac

We are worried about your eyes. You have got Grade II-Grade III retinopathy of prematurity. We have to wait and see. More wait and see. I’m very upset about this.

Molly

You are three months old today, Molly, and overall you are doing very well. You are growing and eating well. We got some distressing news about your eyes today, though. Your eye exam showed that you have retinopathy of prematurity (ROP). The blood vessels of your eyes have grown kind of out of control and formed a ridge. There are four grades or levels of this disease. Level IV is complete detachment of the retina and that means blindness. You are at Level III+, poised kind of at the brink. If it stops now, it could regress and things could be fine. We have to wait and see.

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237 Comments leave one →
  1. February 17, 2011 7:40 am

    So glad these little darlings were okay in the end 😉

  2. Lori Prang permalink
    February 17, 2011 11:38 am

    I love that picture…those sweet preemie eyes! Glad it worked out in the end. Kenn’s words were right on!

    • February 18, 2011 10:32 am

      I recognized preemies the minute I saw your picture on freshly pressed! My 2 lb preemie is 15 months old now. We know there are still struggles in our future..but we feel so blessed to have the NICU part of this journey behind us. Thank you for sharing your experience. 🙂

  3. February 18, 2011 9:43 am

    Wow, cannot imagine. They are precious!

  4. February 18, 2011 9:44 am

    Thank God everything worked out!! And I agree, blind is definitely better than dead 🙂

    • February 19, 2011 4:48 pm

      It was a bit blunt, but it helped me get my priorities in order really fast. Thanks so much for reading and commenting.

  5. February 18, 2011 9:48 am

    What a beautiful sentiment and adorable babies…sending positive thoughts your way!

    • February 18, 2011 6:49 pm

      …and now I’m seeing the date stamp, 1992. But I’m still sending positive thoughts…cuz we can all use ’em, right? 😉

      • February 19, 2011 3:24 pm

        Absolutely! We welcome any and all positive thoughts, because the journey continues. It might not be so rocky these days, but there are definitely still bumps in the road. Thank you for reading and commenting.

    • February 19, 2011 4:48 pm

      Thank you so much for taking the time to read and comment. We appreciate all the support.

  6. February 18, 2011 10:16 am

    Oh, my… this brings back so many memories. My daughter, who is also 19, was born in May of 1991. I went into labor with her at 27 weeks, was hospitalized for a week on that heavy duty MAG, and had her at barely 28 weeks. She weighed 2 lbs 8 1/2 oz. Her weight went down to 2 lbs and we prayed daily asking God to, please, don’t let it dip below 2 lbs.

    She was in the hospital for 54 days–which I counted down everyday one by one. I also kept a journal, but when we moved, it got lost with a whole bunch of other things in a box. I still remember every day like it was yesterday.

    I don’t know if anyone but another mother of a preemie can ever understand all the emotions you go through. I am going to subscribe to your blog and hope I find the courage to read your entries, knowing it may make me relive some of those times of my own ordeal.

    By the way, my daughter is doing well and in her second year in college!

    • February 19, 2011 4:47 pm

      Yay for you and your daughter! The preemies born today have many different therapies available to them than our babies did 19 years ago, but I’m most jealous of the Internet. I would love to have had this kind of support and information back then. I’m so sorry you lost your journal, although you’re right, I don’t think I could forget most of it if I tried. Still, I’m happy to have them and happy to share them with you. I hope they only remind you of how lucky you and your daughter are, and just how far she has come. Best wishes to you and your family. Thanks for reading and commenting.

  7. February 18, 2011 10:17 am

    Sending healthy thoughts their way! What beautiful and strong babies!

  8. February 18, 2011 10:18 am

    Thank you for undertaking this project! What a blessing to see how well things have turned out! We are currently on this journey with our best friends who delivered twin girls at 23 weeks. Only one twin has survived, and, after more than three months in the NICU, she is finally home – with oxygen and a feeding tube. Her doctors appointments and challenges continue, but she is one feisty girl! It’s so amazing to read the story of your children… Thank you for taking the time to encourage other families dealing with preemies! There is every reason to hope!

    • February 19, 2011 4:44 pm

      Thank you for supporting your friends during this tough time. When my babies were first born, one of the first people to reach out to me was a friend of my brother’s. He and his wife had had preemie twins a year earlier and lost one of the babies. I was so touched by his outpouring of support even in his grief. I wish your friends the best of everything. They are lucky to have you on their side. Please feel free to pass on my information and email address (2kopeople at gmai dot com). Best wishes to everyone.

      • February 19, 2011 11:07 pm

        I shared your post with her, but it’s almost too painful still… though she liked hearing of 24-weekers who not only survived, but thrived!

        Really, truly, thank you for posting!!

      • February 20, 2011 11:37 am

        I can totally understand that someone still in the middle of their NICU experience would have a hard time reading my journals. In the beginning, it’s all you can do to get through the day. Every experience is unique. We were very, very lucky. When and if she needs someone who has “been there”, please have her get in touch. In the meantime, send my best wishes.

  9. February 18, 2011 10:19 am

    They really are adorable babies. 🙂

    Sending you and your family lots of peace and ease as everything falls into perfect working order.

    • February 19, 2011 4:41 pm

      Thank you. We’re doing very well 19 years later. Thanks for your warm thoughts and for reading.

  10. February 18, 2011 10:23 am

    Precious little ones! My daughter was premature as well and these photos bring back memories. I’ll be watching and keeping you’ll in my prayers. God bless you and God bless the little ones!!

    • February 19, 2011 4:40 pm

      Vicky, we have come a long way since I first wrote these journals 19 years ago, and both children are now happy, healthy young adults. I hope your daughter is doing well, too. Thanks for reading and commenting.

  11. Angela Brown permalink
    February 18, 2011 10:43 am

    I’m so glad everything turned out OK. My twin nephews were born at 26 weeks. Sadly my prem daughter died before she was born.

    • February 19, 2011 4:39 pm

      Angela — I’m so sorry for your loss. My hope is that I don’t cause any more pain for families that have suffered losses as great as yours. I hope your nephews are doing well. Thank you for reading and commenting.

  12. February 18, 2011 10:48 am

    Thank you for sharing! They are soooo sweet! I love the site and can’t wait to see were this journey takes you. My daughter was born completly “normal” and we found complications with her bones later in life. It is never easy, and you for sure have your hands full, but it is also the greatest gift. -Thank you!

    • February 19, 2011 4:38 pm

      It is the greatest gift. We have been so lucky, and as you discovered, Isaac and Molly are now happy, healthy 19 year olds. I wish you and your daughter all the best. When my full-term second son had bad croup and asthma, I freaked out. He was supposed to the “healthy” one. So, you’re right. It’s never easy, but it is the greatest gift.

  13. February 18, 2011 11:03 am

    I feel for what you went through. Our daughter, while not premature, was born with malrotation of the bowels. She had to have emergency surgery one day after she was born. It was such a horrible thing to go through and was in the NICU for more than 3 weeks. It was probably nothing compared to what you experienced, but I know about the rough times experienced when your child is in the NICU. I’m glad things have worked out for you!

    • February 19, 2011 4:36 pm

      And I hope all has gone well with your daughter. Even one day on the NICU is a trying experience. In many ways, we were more prepared than you probably were, because we knew when our babies were born at 24 weeks that we would be in the NICU for a very long time. It must have been terrifying to end up on the NICU after a full-term pregnancy. Thank you for taking the time to read and comment. Best wishes to you and your family.

      • February 20, 2011 10:25 am

        Thank you for the kind words. Our daughter is well now. 2 years old and she tires us out! LOL.

  14. February 18, 2011 11:17 am

    wow. you have got 2 amazing jewels and I’m just..speechless.

    • February 19, 2011 4:32 pm

      I have six amazing jewels — two wonderful step children, these two miracle babies (now 19 and definitely no longer babies), and two younger boys. We are loud but joyful family. Thank you for reading and commenting.

  15. February 18, 2011 11:35 am

    I’m terribly sorry to hear this, it’s a sad thing. I love your blog, I’m gonna subscribe, I love your writing.

    • February 19, 2011 4:31 pm

      Thank you Kelly. It was a sad day and a difficult time during our NICU journey, but they are well and happy now at 19. Thank you for reading and commenting.

  16. Shoba permalink
    February 18, 2011 11:36 am

    Dont you worry your little darling will be safe and hale and healthy and looking at the beautiful world with those lovely eyes….All the very best to you..

    Shobha

    • February 19, 2011 4:30 pm

      Thank you so much for your warm wishes. They grown into happy, healthy 19 year old young adults and no longer have vision problems. Thanks again.

  17. February 18, 2011 11:37 am

    Just read more about your blog and no see that this is an account of the past……I am so happy that I can rest easy that the story will have a happy ending. 🙂 Great idea I can’t wait to read more.

    • February 19, 2011 4:29 pm

      I’m glad you’re reading along. There NICU stay was just the start of our journey and I’m now working on my memoir of raising these two amazing people. Thanks again for reading and commenting.

  18. February 18, 2011 11:39 am

    From the heart of a stranger… what a blessing to see your babies doing so well. My 2nd daughter was born at 33 weeks with Gastroschisis and remained in the hospital for 2 months… hardest thing ever but how strong it makes you! God bless your family.

    • February 19, 2011 4:28 pm

      My tiny preemies showed me strength I wouldn’t have expected from them or myself. I hope your daughter is doing well now. Best wishes to you and your family. Thank you for reading and commenting.

  19. February 18, 2011 11:44 am

    I, too, was born premature. Not as premature as your little darlings, but early enough to really terrify my parents and the doctors. The doctors told my parents that I would never speak, my brain might never develop properly, and I would be completely blind. As you have probably figured out by now, the doctors have to give you the worse-case scenario, but that doesn’t mean that you have to lose hope. I ended up exceeding everyone’s expectations: I am a healthy, happy, above-average adult. So, don’t lose hope in the amazing abilities of newborns; they will surprise you every time.

    • February 19, 2011 4:27 pm

      They do surprise me every day, as do wonderful supportive comments like yours. I’m glad you proved your doctors wrong. I’m glad you stopped terrifying your parents (or at least I hope you did!), and am so happy to hear that you are a healthy, happy, obviously way above average adult. I wish you the best of luck and thank you for taking the time to read and comment.

  20. February 18, 2011 11:55 am

    Happy vibes to you and your family!

    Do your little ones have Osteogenesis Imperfecta?

  21. February 18, 2011 12:14 pm

    Ohhh We went through the journey with Makena. She is now a fabulous little girl charming as could be. I so remember the roller coaster and the constant reminder of “she is a very sick” child.

    Isaac and Molly will make it and like we were told then during our 100days at the NICU at the children’s hospital in LA and Long Beach Memorial, the only problem you will have with Molly and Isaac is that they will be very naughty!

    Keep going…! Go Isaac. Go Molly!

    • February 19, 2011 4:17 pm

      Well, in 19 years they have certainly had their fair share of naughty days, but most of it has been a joyful ride. Thank you for your reading and for your comments. I’m glad your Makena is doing so well.

  22. February 18, 2011 12:31 pm

    They are so cute!….;)

  23. February 18, 2011 12:35 pm

    Congratulations on being Freshly Pressed! Also, I wanted to say thanks for sharing your amazing story!

    • February 19, 2011 4:15 pm

      Thank you. Being Freshly Pressed has been a great honor and a truly rewarding experience. It has enabled me to reach many other families with premature babies and young children, so thank you for the opportunity.

  24. misswhiplash permalink
    February 18, 2011 12:37 pm

    I am a great believer in prayer. I shall pray for your little darlings, but if their sight is badlt affected , then you will love them even more.
    My love to you all and shall wait patiently for better news,

    • February 19, 2011 4:14 pm

      Thank you for your thoughts and prayers. Please know that Isaac and Molly are now happy, healthy 19 year olds. Their retinopathy of prematurity resolved on its own and neither one has a serious vision problem. Thank you again for your warm thoughts.

  25. February 18, 2011 12:59 pm

    I’m glad they’re ok now 🙂
    Aw, those preemie eyes are so cute. I was a preemie too, but nothing in comparision for what they went trough.

    Greetings from Chile. (and sorry for my lousy english)

    Javiera.

    • February 19, 2011 4:13 pm

      Your English is great and I thank you for your message. Best wishes to you in Chile, and I’m glad you are a preemie survivor.

  26. February 18, 2011 1:00 pm

    Yes, being a single parent sucks. Those of us who have been single parents did not all start out that way. I just hope you realize that when you make comments such as the one above. So many assume single parenting is a choice. I was married for 10 years before I had children – then my husband decided he didn’t like the responsibility of being a parent. I guess it wasn’t “fun”. I would never have chosen to be a single parent.

    • February 19, 2011 4:11 pm

      I have nothing but the greatest respect and admiration for single parents. I often forget how important it has been to me and to my children to have a supportive father, and this was my small way of reminding myself that I did not do it alone. Sometimes I forget to thank him for being here, even when it isn’t fun. I wish you and your family all the best.

  27. ckassociates permalink
    February 18, 2011 1:02 pm

    I’m so glad everything is turning out good for the babies. Due to very loving, caring, nurturing parents there are two very lucky babies with great parents, and a brigh future.

  28. February 18, 2011 1:02 pm

    What about therapy Bevacizumab? (please don’t consider this as medical advice, I am just curious to know if this line of treatment is pursuable in the real world cases out there) Hope everything turns out fine. I am not into neonatology, but my basic theory knowledge tells me that theoretically there are chances of restoration of vision even in grade III+.

    • February 18, 2011 1:06 pm

      Alright. Just read the about page and now feeling kinda stupid! 😦

      • February 19, 2011 4:06 pm

        Seriously, thank you for your comment and your information on other therapies (Bevacizumab) for ROP. It is my hope that this blog will be a valuable resource to other families still on their preemie journey. Thanks for taking the time to read and comment.

    • February 19, 2011 4:08 pm

      Thank you so much for your comment. I know that a lot has changed on the NICU since we were there 19 years ago and that many new therapies have been developed. I appreciate your input, as I hope this blog will become a valuable resource to preemie parents.

  29. ckassociates permalink
    February 18, 2011 1:03 pm

    I’m so glad everything is turning out good for the babies. Due to very loving, caring, nurturing parents there are two very lucky babies with great parents, and a bright future.

    • February 19, 2011 4:06 pm

      Thank you so much. We’re the lucky ones. They have brightened our lives and our future every day.

  30. February 18, 2011 1:14 pm

    As I was a preemie twin I bring only the best of wishes. Hugs too you.

    • February 19, 2011 4:04 pm

      Hope you and your preemie twin are both doing well. Thanks for the hugs and warm wishes.

  31. nearlynormalized permalink
    February 18, 2011 1:17 pm

    We have lit many candles for friends who have been ill…We will lite the candles for your young ones healing energy is out there, it will be sent to you and your family. Curve in the road of life….

    • February 19, 2011 4:03 pm

      Thank you so much for your efforts and warm wishes on our behalf. It was the blessings and strength of people like you who helped us through.

  32. thepoolman permalink
    February 18, 2011 1:20 pm

    I just discovered your blog through “Fresh Press.” I’m married to a long-time neonatal nurse. I speak the language. You are very lucky. Very nice journal.

    • February 19, 2011 4:02 pm

      We are very lucky, and especially lucky to have had the great care of many wonderful NICU nurses. Thanks to your spouse for all she has done to support preemie families, and thanks to you for supporting her and her work.

  33. February 18, 2011 1:31 pm

    Congrats on the happy ending!

    • February 19, 2011 4:00 pm

      Oh, we’re not nearly at the end yet. But thanks for reading and for the congratulations. Now Isaac and Molly get to go out into the world and create their own new beginning. I hope this one will be a little easier.

  34. Cynda Bellamy permalink
    February 18, 2011 1:56 pm

    I teach at Arkansas School for the Blind and Visually Impaired, and my daughter (who is spending the school year in Spain) sent me a link to this blog, figuring that I would find it interesting.

    What is interesting is that just today, I happened upon an article in Yahoo news that I forwarded to a few of my co-workers. It was about ROP and a new treatment that has been developed.

    http://news.yahoo.com/s/hsn/20110216/hl_hsn/neweyetreatmentmaysavepreemiessight

    I wish you the very best. Kenn is right–there are MUCH worse things than ROP. I teach kids everyday that are normal in every way except that they have ROP and lost their sight. I guarantee you that blind children can and do grow up to be like everyone else.

    If you would like more information, we have a WONDERFUL birth-to-three program at my school. http://teacherweb.com/AR/ArkansasSchoolfortheBlind/EarlyInterventionProgram/h0.stm

    It is important, especially if your infant may have vision problems, that you as a parent give them as many experiences as you can. After all, so much of our learning as infants is motivated by our sight. Be sure to put toys of different textures, shapes, and sizes in your babies’ hands. Encourage them to explore. If they should lose vision (or if you aren’t sure about it), motivate them with sound. As they turn their heads toward sound, reward them with something brightly colored in their line of vision. (Many ROP kids have at least partial vision, so encourage them to use whatever they may have!)

    My E-mail is cab2016@yahoo.com. Feel free to write me! And hang in there! To me, being the parents of twins is FAR more taxing than being the parents of a blind kid!

    • February 19, 2011 3:59 pm

      Thank you so much for your comments and great information. We were actually very lucky in that the ROP resolved itself for both Isaac and Molly, though we had many tense times as we waited to see what would happen. I will add your links to my new resource page. Thank you again for your thoughtful comments. Being a parent of twins has been taxing, but also a blast.

  35. February 18, 2011 2:03 pm

    As an premie myself, I have to say that babies are TOUGH. I had ROP, too, and I still have some side effects from it. They doctors caught it just in time, so I can still see. I’m so glad that your kids have pulled through–never give up on them!

    • February 19, 2011 3:54 pm

      Thanks for your encouragement. I will never give up, and they would never let me even if I wanted to. I know you preemies are a pretty tough group of survivors. Thank you for reading and for your comments. Best wishes as you continue your journey.

  36. February 18, 2011 2:04 pm

    I am now a new fan of this blog. Keep up the work–you have such cute kids!

    • February 19, 2011 3:52 pm

      Wow, thanks. I love having a fan. And I think they’re pretty cute, too. Thanks for reading and commenting.

  37. February 18, 2011 2:05 pm

    Your children are beautiful!

    My heart goes out to you. Please know that your family is in my thoughts and prayers. My youngest son was born at 26 weeks (3 months premature). He weighed 2 lbs. 2 oz. and was 14″ long. As you may know, boys typically do not have as high of a survival rate as girls do when born prematurely.

    After corrective surgeries and three months in the NICU, he came home weighing a whopping 5 lbs. I remember holding him for hours and just watching him as I prayed he would make it through.

    I am so happy to inform you that my son is now 20-years-old and as healthy as a horse. Miraculously, he has no residual problems and is going to college to become an Army Officer.

    Keep your prayers and dreams going. Your strength and hope will carry Isaac and Molly far – and forever.

    Jill

    • February 19, 2011 3:52 pm

      Jill — we’re not actually that far behind you. Isaac and Molly are now 19 years old and happy and healthy. Thank you for your warm thoughts and good wishes. I wish the same for you and your now-grown 26-weeker. Here’s to our babies who have come such a long way!

  38. February 18, 2011 2:06 pm

    Wow. 24-weekers. Amazing! I love that you wrote this for them. Thank you for sharing it!

    • February 19, 2011 3:50 pm

      It has been an interesting experience to relive this journey. It feels like every day was etched in my memory, but I’ve been surprised to rediscover some of the details. Thanks for reading and taking the time to comment.

  39. February 18, 2011 2:35 pm

    Yes, having the grounded perspective of a significant other is always really helpful in moments of panic. Lots of love to you and the babies!

    • February 19, 2011 3:48 pm

      I have to admit, sometimes I forget that. Thanks for reading and for your warm comment.

  40. February 18, 2011 2:48 pm

    I remember the ROP rollercoaster, which we actually jumped off of, scot free, in the 11th hour.

    And those “preemie eyes,” to wise and beseeching. I always felt like Col’s eyes were pleading “get me out of here, please!”

  41. February 18, 2011 2:51 pm

    From one mother of twins (we were 5 weeks premmie) to another – congratulations to your family for beating the odds 🙂

    • February 19, 2011 3:48 pm

      Go preemie twins! Go preemie twin moms! Hope yours are doing well. How old are they now? Warmest wishes to you and your family.

  42. anonnickus permalink
    February 18, 2011 4:00 pm

    Two faces anyone would love.

    • February 19, 2011 3:46 pm

      Yeah, I think they’re pretty cute, too. I still sneak in every once in a while to watch them sleep at night and can still see how they looked all those years ago. Thanks for reading and commenting.

  43. February 18, 2011 4:21 pm

    This is very beautiful – I wasn’t strong enough to journal for my second son who passed away at 9 days old on September 8, 2010. I started a journal on his 6th or 7th day and wrote it in twice. The third time was the day of his funeral. He was a day shy of being called a term baby but he had a heart defect and battling Rh disease at the same time. Still, we were given the impression he was doing well, the very same day he left. I marvel at the power of medicine, but even more at nature’s ultimate power over all.

    • February 19, 2011 3:45 pm

      I’m so sorry for your loss. My hope is that these journals do not bring pain to families like yours who have suffered such a great loss. We know just how lucky we were at every step of the way. The art and practice of medicine facilitates miracles every day, but there are so many things we do not know or understand. My heart goes out to you and your family. May your son’s memory always be a blessing. Thank you for taking the time to comment.

  44. February 18, 2011 4:53 pm

    Absolutely an incredible story! Babies are so precious, and it is amazing to hear that they are doing good.

  45. February 18, 2011 4:56 pm

    I just stumbled upon your blog….God has great plans for them. Our prayers are with you and your little ones for a complete and full healing. Have faith in the Innate healing capacity of the body and continue to speak life and love into them…they may not understand, but their Spirit sure does. God bless you all.

    • February 19, 2011 3:42 pm

      Thank you for your warm comments. We have come a long way in those intervening 19 years. Their bodies are amazing gifts that continue to serve them well. I can’t wait to see the people they will become.

  46. February 18, 2011 4:59 pm

    I know the feeling of having twin babes who are premature, one of my baby has a bloated right kidney and where on observing and treating stage while she was growing up. The other baby is normal , where always praying that b2 will be ok. Now they are 6 months old and they grow fast.

    Don’t worry I know your angels will be OK soon GOD is always there for us.

    • February 19, 2011 6:04 pm

      They do grow very fast. I hoping the best for your babies. Good luck to your family.

  47. February 18, 2011 5:58 pm

    I didn’t know about this retinopathy.
    Thank you for taking the time to share your very difficult experiences with others.
    I hope all will work out for your Isaac and Molly.

    • February 19, 2011 3:41 pm

      At point in our journey, more than three months in, I had only heard a little about retinopathy of prematurity. The staff kept us well-informed, but up until this time, things were more critical and the issues we faced were more life and death. It came as quite a shock to hear how far the ROP had progressed. But again, we were so lucky, as the ROP resolved on its own, although their eyese were closely monitored for a long time to come. Thank you for reading and for you comment.

  48. February 18, 2011 6:03 pm

    precious baby miracles….

  49. February 18, 2011 6:08 pm

    No matter what happens good or bad, nothing will change the fact that they are simply gorgeous.

    god bless

    funkyfi

    • February 19, 2011 3:28 pm

      Thank you. They were and still are gorgeous, and doing very well 19 years later. We are truly lucky. Thanks for reading and commenting.

  50. February 18, 2011 6:10 pm

    Thanks for sharing this. My girlfriend, who was a NICU RN, passed away last December in her sleep and took care of premies for over 18 years. I had posted this blog on Facebook in honor of all RNs and parents of premies. I hope that your children will grow up to become compassionate and honorable adults who can make a better difference in this world. Thanks again.

    ~Nick

    • February 19, 2011 3:27 pm

      Nick, I’m so sorry for your loss. NICU nurses are amazing, giving people. Thank you for honoring your girlfriend and the work she did and all the families whose lives she touched. I am forever grateful to the NICU nurses who cared for us and our babies. Thank you for your support.

  51. February 18, 2011 6:27 pm

    this takes my breath away. i am praying for you.

    • February 19, 2011 3:25 pm

      Thanks, Erin. We’re are all doing well now and truly appreciate your kind thoughts and prayers.

  52. Courtney Holland permalink
    February 18, 2011 6:52 pm

    I have been on this roller coaster too. My youngest sister, Isabella Rose, was 12 weeks early when she was born and we spent 8 weeks in the NICU. This blog gave me hope, and now Bella is 20 months old and just like any other child her age, only in a more compact package and with glasses. Preemie babies are truly little miracles walking around, and they remind us how precious our children/siblings really are.

    • February 19, 2011 3:23 pm

      Courtney, you are so right about our little miracles. Molly and Isaac had a big sister and brother to watch out for them, too, and that has been a big blessing in their lives. Bella is lucky to have you on her side. Best wishes to you and your family.

  53. johnlmalone permalink
    February 18, 2011 7:16 pm

    It’s certainly a topic I know little about but your love AND CONCERN SHOW THROUGH. I hope all works out well and your child doesnot go over the brink, as you put it. Tough times but there is hope

    • February 19, 2011 3:22 pm

      Thanks so much for reading and taking the time to comment. Isaac and Molly are actually now happy, healthy 19 year olds. I’m posting these journals that I found as I began writing my memoir about this journey. Thanks again for your kind words.

  54. Fatima permalink
    February 18, 2011 7:40 pm

    They are absolutely beautiful! All the best!

  55. msmegrose permalink
    February 18, 2011 7:56 pm

    What an inspiring blog! Thanks for sharing this part of your life…and congrats on being “Freshly Pressed!”

    • February 19, 2011 3:19 pm

      Thanks for reading and thanks for the congrats on being “Freshly Pressed!” It’s been pretty exciting.

  56. February 18, 2011 7:56 pm

    wow, what an incredible journal and journey. My brother and I were preemie babies as well, 3 months early-me weighing 2.75 and kevin weighing 2.25#, this was in 69. I don’t know about you two, but we are fighters to this day 🙂 thank you for sharing your story.

    • February 19, 2011 3:19 pm

      Dear Kelly, they are absolutely both fighters. I once remarked to our pediatrician how healthy Isaac and Molly were after their initial sickness. He told me that he believes they had to be really strong right from the start to survive everything they did. You and your brother must also have strong hearts and souls. Good luck to both of you and thanks for reading about us.

  57. February 18, 2011 8:08 pm

    My heart goes out to your family. I wish your babies the best. My friend had her daughter at 24 weeks and 5 days and looked much like your little ones. The inspiring bit is that today, her daughter is 3 years old. I wrote a post related to the March of Dimes recently which included a short video of her child’s journey including NICU photos as compared to her at age 3 today. Seeing it may keep you strong. Best of luck to you. Here’s the link if interested: http://bizemom.wordpress.com/wp-admin/post.php?post=1559&action=edit

    • February 19, 2011 2:35 pm

      I will for sure check out your post and video. Thank you for supporting your friend and for your comment. You may want to share our story with her, because my twins are now actually 19 years old and doing very well. Thanks again for your kind words.

  58. February 18, 2011 8:51 pm

    As a new mom to a 4 month old, this story definitely makes me appreciate how lucky I am to have a healthy baby girl who came a month early. It must have been a scary day for you. I’m curious how Issac and Molly are doing today! Sounds like from other comments that it all worked out. Congrats on being freshly pressed!

    • February 19, 2011 2:31 pm

      Thank you, and yes, Isaac and Molly are doing very well. I came across these journals as I began writing my memoir about their incredible journey. So stay tuned. Thanks again. Being a Freshly Pressed pick has been pretty exciting.

  59. February 18, 2011 10:38 pm

    these angels remind us the need for innocence and love in this savage world

    • February 19, 2011 2:28 pm

      That is so true. Looking back on these pictures softens my heart every time I see them.

  60. February 18, 2011 11:59 pm

    Hang in there. It’s not easy, but you and Kenn seem strong and it’s wonderful you have each other to lean on. Thanks for sharing your story.

    • February 19, 2011 2:27 pm

      Thank you. We have had lots of support along the way.

  61. February 19, 2011 12:18 am

    Such beautiful babies!

    • February 19, 2011 2:27 pm

      Thank you. I always thought they were beautiful, but not everyone did. Their uncles had a habit of referring to them as the “little plucked chickens” and “the raisenettes” — all out of love, though. We had great support from friends and family.

  62. February 19, 2011 12:21 am

    Rooting for them all the way!
    Elizabeth

    • February 19, 2011 2:26 pm

      Thanks Elizabeth. We have had many wonderful cheerleaders along the way.

  63. February 19, 2011 12:50 am

    My husband and I recently gave birth to our preemie at 30 weeks due to preeclampsyia, and our baby spent two months in the NICU. My thoughts and prayers go out to your beautiful family. Have faith that babies are so resilient; they grow stronger everyday. We went through the roller-coaster of emotions you are speaking of, our baby got really sick three different times. Meningitis got thrown around a lot, causing many a sleepless night. Now he is home and doing well, and I know soon you will be bringing your beautiful babies home healthy and safe as well. Can’t wait to read more about their progress.

    • February 19, 2011 2:25 pm

      I thank you so much for your kind words and thoughts. If you look closely at the dates, you’ll see that I am publishing these journals now, 19 years to the day after our NICU experience. My goal was to share what we were going through in real time, with the ability to also show that my preemies are now happy, healthy 19-year-old young adults. We still welcome your prayers and good wishes, and sen you and your 30-weeker ours as well. Thanks again.

  64. kagwiria permalink
    February 19, 2011 1:06 am

    I just think the hardest thing about having preemie children in the NICU is thinking your problems are unique to yourselves. You just need to sometimes speak to your babies neighbours mothers in the NICU just to realise you so much better off. Those eyes should never scare you. The only people they seem to scare are the friends and relatives who come visiting. With time as your babies grow all these proportions will normalize and you will appreciate the true beauty of development.

  65. February 19, 2011 1:21 am

    Whenever I feel like i’m stressed, or have problems, I just think of all of the people who are really going through some horrible things. This almost makes me feel a bit selfish and spoiled.
    I am so glad that everything turned out alright! The strength of willpower is immeasurable even in a premature baby!

    • February 19, 2011 12:12 pm

      Thank you for your comments. Reliving this journey again through this blog has made me take stock and count our blessings again. It’s so easy to get bogged down in the daily little trials and tribulations. As difficult as those months on the NICU were, we were completely in the moment, and none of the little stuff was important. It was a great lesson.

  66. nianiainia permalink
    February 19, 2011 3:44 am

    Best luck and tones of helth to Isaac and Molly. Best wishes for mum and dad :*.

    • February 19, 2011 12:09 pm

      Thank you. I’m happy to say they are very healthy now.

  67. February 19, 2011 5:46 am

    Good to know that those babies grown up already, healthy and happy. This blog is very encouraging, though I haven’t got married and had no babies, but the story touched me so deep. Thanks for sharing.

  68. February 19, 2011 6:06 am

    very happy to know that everything at the end is allright with u guys.

    • February 19, 2011 12:09 pm

      We are well and happy, but nowhere near the end. Now they begin their own journeys. Thanks so much for stopping by.

  69. Anindita machribie permalink
    February 19, 2011 7:12 am

    Wishing them well…be strong!

  70. February 19, 2011 7:35 am

    I’m a medical student who’s considering neonatology as a specialisation. (I’m actually doing my obstetrics rotation at the moment.) Thanks for your posts, they are so insightful and interesting! I’m so glad everything turned out well.
    TWENTY-FOUR weeks! What strong children, and excellent doctors too I am sure.
    And well-done for making freshly-pressed 🙂

    • February 19, 2011 12:07 pm

      I had no idea we had made Freshly Pressed as I’ve been out of commission for two days with a virus (my husband says he knows I was really sick when I didn’t even turn on my computer). Good luck in medical school. All the caregivers on the NICU were amazing. I remember many of the med students and residents well. Being at a teaching hospital was a wonderful experience, and I believe caring for our babies helped these future physicians become better doctors. It was quite a ride. Best wishes to you. I’m so curious to find out which speciality you finally choose.

  71. February 19, 2011 8:17 am

    wow – you’re right – it’s totally a blessing that there were two parents on this journey and that things turned out so well for them! . our twins had a brief stay in nicu – i know that experience and others with them felt like i was holding my breath – does that make sense? just waiting for things to turn around. off to read a couple more entries!

    • February 19, 2011 12:04 pm

      Holding my breath. That’s exactly what it felt like during those five months. Thanks for reading and for the great metaphor. Good luck to you and your twins. Having twins is a wild, wonderful ride.

  72. February 19, 2011 8:40 am

    This happened to the grandchild of one of my best friends. With all of our prayers Zoey is fine now. I believe in the power of prayer and we will include Ike and Molly in our prayers every day.

    • February 19, 2011 12:03 pm

      Thank you for your thoughts and prayers. I hope that Zoey continues to do well.

  73. February 19, 2011 10:29 am

    my cousin was a premature baby, they didnt think he would make it through. he is now a blonde haired, blue eyed seventeen year old who aces every sport he tries and is the heartthrob of his school year (we dont say this to him though, he would get too arrogant!) his hearing isnt the best, but he made it. hang in there. 🙂

    • February 19, 2011 12:02 pm

      Thank you for your comment. I’m so glad to hear your cousin is doing well. It’s always great to hear another success story. I have a good friend who is now 10 years old and has some hearing issues. He’s amazing and loves to dance, taking three of four lessons a week. Thanks again for reading.

  74. February 19, 2011 1:58 pm

    WOW! I just saw this on FreshlyPressed. What a fantastic blog made from such an unfortunate situation. So happy they are doing so great!

    My prays go out to you!
    Noel

    • February 19, 2011 2:06 pm

      Oops! Now I get what the blog is about! Blonde moment. Glad to see that you ARE good!

      • February 19, 2011 2:22 pm

        That’s OK, Noel. Many people think we are still in the midst of the chaos, but we didn’t even have the Internet back then. I wish we had, because all this support has been so touching. I hope that by posting my journals now, I can support other preemie families who are still in the thick of things. The journey continues. Thanks for following us.

  75. February 19, 2011 3:12 pm

    I used to work in NICU as a pediatric nurse many, many years ago. All of these children are miracles. I am parent with grown children near the same age as Mike and Ollie now. Any the trial or tribulation your child goes through is heart wrenching. Thanks for your interesting perspective flashing back 19 years ago.

    • February 19, 2011 3:34 pm

      Yay for NICU nurses. You have my sincerest gratitude for all you did to help families with sick babies and children. I can hardly believe it was 19 years ago. Seems like just yesterday. Best wishes to you and your family.

  76. February 19, 2011 3:44 pm

    Your children are beautiful miracles, and no matter what happens that will never change. Your family is in my thoughts and prayers. =)

    • February 19, 2011 4:25 pm

      Thank you so much for your comments and warm thoughts. We are happy to report that Isaac and Molly are now healthy 19 year olds. Thanks again for your thoughts and prayers. I will be sure to share them with Ike and Molly.

  77. February 19, 2011 3:56 pm

    If I may suggest a perhaps less conventional way to gain some understanding about your beautiful little ones and their soul purpose for being here, seek within HUMAN DESIGN…www.jovianachives.com. I believe your little ones are of the very new soul matrix and their eyes will play an important role in their life’s mission.

    A chart reading for each child could open understandings for parents and future teachers….I believe this is one of the tools of the psychology for the new paradigm we are entering….old psychology does and cannot apply.

    Blessings to all of you!

    • February 19, 2011 4:23 pm

      Thank you for your interesting feedback. I learned on our journey that there are many, many things we don’t know or understand.

  78. February 19, 2011 4:20 pm

    Thank you for your happy vibes. Fortunately, neither baby suffered from Osteogenisis Imperfecta. In fact, with a few exceptions, they have been remarkably healthy.

  79. Larry Arbuckle permalink
    February 19, 2011 5:23 pm

    Hi Mike and Ollie!! could not resist posting your story on my Construction Blog. Hope you don’t mind as we construction people love happy endings.

    cheers
    Larry

    • February 19, 2011 5:29 pm

      I’m thrilled. As I mentioned in my comment, I guess we were the ultimate construction project!

  80. marchmommie7 permalink
    February 19, 2011 7:26 pm

    Hey there. I just stumbled on your blog. Hugs from Texas. Hang in there and keep posting. Your kiddos are so precious and they are lucky to have you all as parents.

    • February 20, 2011 11:44 am

      Thank you for reading and commenting. Ike and Molly are now happy, healthy 19 year olds. We are sharing their story now in the hopes of helping others who are at an earlier place in their journey through prematurity.

  81. February 19, 2011 9:37 pm

    That’s amazing. I don’t hear a lot of premie stories, i was born a premie too, 3 months early in 1986…i’m glad u had such fighter kids, they look healthy and happy now, i think that’s an amazing story u have. Thanx 4 sharing.

    Much Respect.
    alun-

    • February 20, 2011 11:43 am

      Thank you for reading and commenting. We love hearing other “survivor” stories. Arriving three months early in 1986 makes you a true miracle, too. Best wishes.

  82. Harjit Malhi permalink
    February 19, 2011 10:41 pm

    Good luck with everything you do in life. 🙂

    • February 20, 2011 11:38 am

      Thank you for reading and commenting on our story.

  83. springtimerose permalink
    February 19, 2011 11:16 pm

    Praying for you and your family ❤

    • February 20, 2011 11:34 am

      Thank you. I appreciate all your warm thoughts and prayers.

  84. February 19, 2011 11:23 pm

    I’m sorry. I hope your kids are okay

    • February 20, 2011 11:34 am

      Thank you. They are both fine, happy, healthy 19 year olds now.

  85. Bart H. permalink
    February 19, 2011 11:36 pm

    God bless you guys. Hang in there. We had some NICU issues at first too, when our son was underweight. But he’s three months old now and home and doing well.

    Things will work out!

    • February 20, 2011 11:33 am

      Thanks Bart. I hope your little boy continues to do well. Isaac and Molly are now actually 19 years old. This blog is sharing the journals I kept during our 5-month NICU stay. I ran across them again when I started writing my memoir of raising micropreemie twins. Again, best wishes to you and your family, and thanks for your warm wishes and comments.

  86. February 20, 2011 12:52 am

    I am glad it all turned out well in the end. Success stories of survival are so inspiring.

    • February 20, 2011 11:30 am

      Thank you. I hope their story inspires others as much as they have inspired me.

  87. Piscean Fantasy permalink
    February 20, 2011 1:11 am

    My prayers are with you. I’m glad that the babies are progressing. I was born premature as well as my niece . I remember the struggles that she faced. She is now 16 years old. I bless God in knowing that things will get better. Be encouraged.

    • February 20, 2011 11:29 am

      Thank you for your kind thoughts. Isaac and Molly are now 19 years old and very healthy. I wish you and your niece all the best.

  88. February 20, 2011 3:01 am

    So glad, my 4 and half year old was born at 25 weeks weighing 715grams and is wearing glasses so she can read and write, but overall doing well for a Pre-primary.My son was born at 33 weeks and his needing physiotherapy or maybe surgery.But premature babies are miracles in themselves no matter what people say.

    • February 20, 2011 11:26 am

      Wow, you have had a full range of preemie experiences. Every baby is a miracle, but I must admit, there is something truly amazing about preemies. My twins were still quite delayed at four, when they finally started talking. I wish you and your family all the best on your journey. Thanks for your comments.

      • February 20, 2011 5:12 pm

        Thank you for your blog, it has help me, understand that eventually they will catch up,more about my journey with my two can be found at:http://hubpages.com/profile/Kively2009.

      • February 20, 2011 5:43 pm

        I’m so glad if we have helped you in any way. I read your post about your daughter saving your son’s life. An amazing thing. Best wishes to you and both your preemies.

  89. Marie permalink
    February 20, 2011 8:03 am

    I’m so sorry. I’m going to Press This for your babies! God’s blessings be with you and your babies!

    • February 20, 2011 11:23 am

      Thank you, and please know that they are well and healthy now.

  90. blueyedgirly permalink
    February 20, 2011 9:03 am

    I do believe your children are making a difference. So are you. By helping people understand premature birth, you children will have less of a struggle in school. You are wonderful parents.

    • February 20, 2011 11:20 am

      Thank you so much for your kind remarks. Strangely enough, one of the advantages we had with our babies is that right from the start we got early intervention and no one questioned the need for it. They were evaluated and reevaluated in preschool and elementary school, and with my son, all through high school. Many parents don’t discover for years that their children could benefit from modified learning strategies, or from physical, occupational, or speech therapies.

  91. Angelika permalink
    February 20, 2011 10:44 am

    I have learned from Europe that putting premature babies on the mother’s naked chest to sleep, helps them considerably, to the extent to where they stop death.

    • February 20, 2011 11:17 am

      Kangaroo care is now a big part of the protocol on most NICUs, and one of the biggest changes in care since our stay back in 1991-92. I imagine its a wonderful experience for parents and babies. Thank you for your comments.

  92. Angelika permalink
    February 20, 2011 10:47 am

    Also, go organic hunn. Organic foods for you, and only cotton clothing. Nothing synthetic fibers. Shop at the natural living stores- for gentler washing fluid. You can provide a toxic free envirornmnet that will help them grow! It will better for them…

    • February 20, 2011 11:12 am

      Well, the organic thing is now up to them, since they are 19. Back when they were little, we were only beginning to learn about organic food and materials. I did use very gentle soaps and detergents on their sensitive skin. It’s good advice for parents of younger preemies. Thanks for your comments.

  93. LynneBW permalink
    February 20, 2011 11:45 am

    Oh sweetheart, hang in there! Our 480 gram, 30 cm, 26 weeker is now 9 1/2, and is mouthing off like a regular teenager. Lean on God and enjoy those precious bundles!

    • February 20, 2011 12:14 pm

      Thanks for the good thoughts. Isaac and Molly are actually full-fledged teenagers, happy, healthy 19 year olds. Best wishes to you and your 26-weeker.

  94. February 20, 2011 1:25 pm

    My dear, dear Mike and Mollie… I pray that God blesses you both with stamina, courage, confidence, positivity, endurance and determination…I am sending you lots of love and warm energy…….You are being strengthened by the test…. You, by divine intervention, have been selected to walk this path to enlighten others.. As you walk, observe the faith that grows through the challenges….Believe me, you and your blessed family will emerge conquerors! God bless!

    • February 20, 2011 4:25 pm

      Thank you for your warm thoughts and blessings. They are still most welcome 19 years later.

  95. February 20, 2011 1:28 pm

    Just read that your journey took place in 1992. So, it appears that you already have a testimony for the test!

  96. Robyne permalink
    February 20, 2011 3:20 pm

    I had 26 week child birth to identical twin boys. Heart surgery, stomach surgery and even surgery to place a shut in one of my son’s brain to drain the fluids. I can totally relate! 1lb 5oz and 1lb 8oz at birth. I feel for you! FYI… my boys were featured in medical journals and other medical media outlets – they were born in 1985.

    • February 20, 2011 4:24 pm

      Oh, my goodness. That was six years before our babies were born. Thank you for reading and commenting. All my best wishes to your family.

      • February 21, 2011 11:17 am

        Thank you…. 🙂 During that time there was very small survival rate with preemies that young and under 2lbs- (twin girls 2lbs were born a month before my boys and only one survived) – I signed a document that basically allowed doctors to perform experimental procedures, treatment and medicine. Everything was documented for the medical world. I know this was risky at the time but so was thinking that if I didn’t give them every chance they could have I wouldn’t be able to live with myself. So when I read about your preemies I thought to myself wow, I know how she must have felt during that time but yesterday, for the first time knowing that my twins had a huge part in how doctors today treat preemies and reading your post actually made me feel good about it. Thanks 🙂

      • February 21, 2011 11:30 am

        I’m so glad that these journals have helped you feel good about your babies. Thank you, thank you, thank you for participating in the research that I know helped save our babies. We also were in many, many studies (including one about natural vs. synthetic surfactant). We felt just as you did, that perhaps our babies were meant to help others preemies in the future. That’s what I hope these journals are doing. Thank you again for your generosity of spirit and for sharing your story with me. Best wishes.

  97. February 20, 2011 3:59 pm

    Such beautiful children! Absolutely gorgeous. I can only imagine what it must be like to live in such constant fear for your children’s health… but I am delighted to know that they are doing so well now 🙂

    • February 20, 2011 4:23 pm

      Thank you. We really didn’t know any better at the time; just took it one day at a time.

  98. February 20, 2011 4:10 pm

    Wishing you many blessings!

  99. aaronjhill permalink
    February 20, 2011 4:50 pm

    Sweet little duo. You guys are in my thoughts and prayers. — Aaron

    • February 20, 2011 5:00 pm

      Thank you, Aaron. They’re pretty big guys now (see the center photo on the banner), but we so appreciate your warm thoughts and prayers.

  100. Julianna permalink
    February 20, 2011 9:40 pm

    These photos are so familiar. I can understand all the emotions you have been through since I’m a mother of a 24 weeks premature baby. Reading your blog makes me full of tears coz my baby only stayed in NICU few days. Now all I have is a broken heart.

    You should know how lucky you are that you have two beautiful babies. They are so precious and working so hard with you. Be strong and positive. All the best wishes for you~

    • February 21, 2011 10:46 am

      Juliana, I am so sorry for your loss. We know every day how lucky we are, and hope that sharing our story does not bring pain to families like yours who have experienced such devastating loss. My heart goes out to you. Thank you for taking the time to read and comment. Best wishes.

  101. February 20, 2011 10:18 pm

    I couldn’t even imagine.

    • February 21, 2011 10:44 am

      It’s not one of those things that easily imagined. It certainly isn’t how we imagined bringing our babies into the world, but we were really so lucky, so all we can do is count our blessings. Thanks for reading.

  102. happyfish103 permalink
    February 20, 2011 10:19 pm

    As a NICU nurse and former 26 weeker myself, I was so excited to see this on the front page! It’s wonderful that you’ve recorded their progress. It will be a true treasure to you (and them!) as they grow up, as I’m sure it already is! 🙂

    • February 21, 2011 10:42 am

      Thank you to you and all the NICU nurses who have helped us and other preemies. Isaac and Molly are now happy, healthy 19 year olds (thanks to the great care they got in the NICU and beyond). We hope our story helps other preemie families.

  103. February 21, 2011 3:43 am

    What adorable babies, sending positive healing thoughts for you and your family

    • February 21, 2011 10:38 am

      Thank you. We’ve long outgrown preemie clothes, but are following you on Twitter. Find us @MikeOllie2. Good luck with your business. We couldn’t find any preemie clothes that fit them back in 1992.

  104. katiegou permalink
    February 21, 2011 5:01 am

    Beautiful!

  105. February 21, 2011 6:57 am

    Crying all day because your kids might both be blind is a reasonable response to such news. That would be devastating.

    They have really grown since the first pictures. So they’re improving. There’s hope. Good luck and prayers to you all.

    • February 21, 2011 10:34 am

      Thank you so much for your kind words and prayers. Please know that Isaac and Molly are both now 19 years old and happy and healthy. I am posting these journals in hopes of helping other preemie families. Thank you again for reading and for your comments.

  106. February 21, 2011 7:33 am

    I’m so glad they are okay! They are so cute too!!! They make me smile every time I look at them! An inspiration if I’ve ever seen one!

    • February 21, 2011 10:28 am

      Miracles. Inspirations. Cuties. All those things are true. Thank you.

  107. February 21, 2011 8:15 am

    wow are so adorable! precios babies:)love them kisses from morana

  108. February 21, 2011 8:50 am

    …Hugs for you 4 from Italy, by my son K.I.M and Amy, his single mum…

    • February 21, 2011 10:25 am

      Thank you, and best wishes to you and your son.

  109. christine permalink
    February 21, 2011 8:51 am

    Hi there,firstly,i’m indonesian people and i’m very sorry, i’m not fluently in english 🙂
    I was very impressed with your fortitude, you are a wonderful mother, and it seems I need to beg you for your willingness to share with me a lot (I hope you want to provide your email address to me ..so I can share with you directly). I’ve given birth an identical twins baby gilrs,Cilla and Ef on september 1st 2010, they were arrived at 27 weeks gestation, Cil was 1,5kg-Ef was 1,1kg, she is looking very small and weak for me with her 1,1kilos of weight, I can not imagine if I were in your position, maybe I’ll spend my days with tears, that’s why I call you amazing mom. Baby cilla was died 27 hours after birth, and Ef had to stay in NICU for 99 days, i’m exactly feel the same with what you’ve written : “Other mamas on that floor get to have their babies in their rooms with them. It makes me sad to be so far away from you. On that floor, you can hear a baby cry when you walk down the hallway. Here on the ISCU, where there are many tiny babies like you, all you hear is the sound of machines and alarms. Here on the ISCU, it’s the mamas and daddies who are crying. Today was a bad day because they released me from the hospital, which means I had to go home. I can’t sleep here any more. We only live a couple of miles from here. I was very sad…” maybe a bit worse because I had to release my sadness about my lost and be strong for Ef who alive at the same time, finally 100 days after their bornday, I could holding her and brought her home, but few days later Ef’s eye late-checked told me that I must accept the fact of life that she had a dysfunction eyes because of ROP grade 4b, doctors here surrender about her eyes and could do nothing, sometimes I feel very sad when I realize she will never know how a form of her mother but that does not reduce my love and gratitude toward Him because I could have one of the twins alive. What should I do with her condition..i just want her to face this world as a normal kids. Thank you, wonderful and amazing mom for sharing your storylife. Thumbs up.

    • February 21, 2011 10:24 am

      Dear Christine, I hardly know what to say, so I will start with congratulations. I know that may sound strange, but that is all I wanted to hear when my babies were born. I’m so sorry for the loss of baby Cilla. I can’t even imagine your pain. I know how hard it was to celebrate good days with one baby when the other baby was having a bad day. I hope you find the strength to celebrate Ef’s life, because I believe that will be that best way to honor the memory of her sister.

      There is a professional association for ROP called the Association for Retinopathy of Prematurity and Related Diseases. I have included the link here and will add it to the Important Links page. Their website might be a good place to start. The American Council for the Blind also offers this list of resources for parents of blind and visually impaired children. Here is one more site with international resources.

      You may email directly at 2kopeople at gmail dot com. All my best wishes to you and your family. I know it will take time to create a life that works well for you and your daughter, but I know you can do it. Don’t be afraid to ask for help. Good luck.

  110. February 21, 2011 9:06 am

    Great post…..love the site! 🙂

  111. February 21, 2011 11:24 am

    Your babies are beautiful and I will be keeping them in my prayers. The pictures make me want to just snuggle them up… adorable.

    • February 21, 2011 11:30 am

      They’re a little harder to snuggle with now that they are 19 years old, but I still like to do it every now and again. Thank you for your kind comments.

  112. February 21, 2011 12:00 pm

    I just hope that one day you (just as I did when I found your journal) randomly click on a link and find a beautiful success story that takes you back to those days and makes you feel there was a bigger reason for what happened and there are others who went through it. For years you think of the experimental results in a non personal way until you fall upon someone else’s journal. Perhaps you may have the same thing happen with your kids participation – your post was the first I have seen about this subject. Thank you for posting 🙂 best wishes….

    • February 21, 2011 4:20 pm

      Isn’t the Internet an amazing gift? We make connections — important ones — that never would have happened in another time. Thank you.

  113. glutenfreebrit permalink
    February 22, 2011 11:01 am

    Such cute, cute babies. I wish you all the best – the pics in the banner melted my heart.

  114. February 23, 2011 7:36 pm

    How sad. I think in cases like this we have to count our blessings. Your partner is right. They are both alive and have a future in front of them. They will adapt. Children are resilient. I feel for you. Stay strong.

    • February 24, 2011 8:21 pm

      Hi, and thank you for your warm thoughts. Please know that Isaac and Molly are now 19 years old and happy and healthy. These are the journals that I kept during their 5-month NICU stay. They were and continue to be very strong, and we were very lucky at every step of the way.

  115. April 7, 2011 2:17 am

    It was a bit blunt, but it helped me get my priorities in order really fast. Thanks so much for reading and commenting.

  116. February 19, 2011 3:35 pm

    A good cry can go a long way.

  117. February 19, 2011 5:22 pm

    Thank you so much for reposting. I never thought we would show up on a construction blog, but I guess they were the ultimate construction project.

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