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Friday, July 11, 2008

Confessions of a Preemie Parent (Part 1)

I've been meaning to write these posts for a while. I have a feeling they will shed some light on a lot of the smaller details of our story over the past several months. Through the wrong perspective, what you're about to read might come across as something of a sob story, but that is not my intention. I simply want to give you a clearer picture of what early life as a preemie parent feels, sounds, looks like so that you might better understand our story.

Of course, every premature experience is different, and from what I can gather, because of several factors, our experience was different in many ways from most. But, my guess is, most parents of former preemies will be familiar with a lot of what I'm about to tell you.

Having a premature baby, especially a micro-preemie is unlike any other new-parent experience. There is no way that I can fully describe to you so that you could completely understand, and there's certainly no way for anyone to prepare you for such an experience.

With a normal, healthy, full-term birth (in the US), usually the mother is holding her baby within seconds of delivery, the father is not too far behind, and both mom and child are home together within a few days. It used to be that the baby was taken to a nursery and kept apart from the parents for much of the first few days, but now most newborns are allowed to be kept in the same hospital room with both parents until they are released to go home. This, as they say, is how God created everything to work in a perfect world.

Most people who have never experienced being parents/family of a premature baby are still able to recognize and even empathize with the feelings of fear and frustration involving an extended stay of a newborn child in a hospital. Certainly, most parents can especially imagine what it might feel like to have a critically ill baby and to not be able to take your newborn home within the first few days.

What most people are unable to relate to, however, is the stunted sense of bonding with your newborn that comes with ICU's, incubators, and fragile bodies. For me, and even more so for Tricia, the feeling and realization that, "this is OUR baby girl" has been a very slow but certain process.

Because I have never experienced a normal, healthy pregnancy and birth, I can't really compare our experience. But, from what I have been told, the bonding process, while a lifetime in the making for any parent/child, is usually fast and secure when you're able to hold, feed, clothe, etc. your newborn within days, if not hours of birth.

My first experience with my new daughter was spent in a small, very warm and muggy ICU room. To get to the room, I needed to check in at the front desk in the waiting room. The nurse in the back had to give her OK. I had to wash my arms from the elbows down, making sure I wasn't wearing any jewelery on my hands and wrists. I had to put a blue, cotton gown on. I had to be sure that I turned my cell phone off. Over the next 4+ months, I had to do all of this every time, before even entering the NICU.

Once I arrived in the hallway outside of the room where Gwyneth spent her first week, I had to exchange my blue gown for a bright, yellow gown. I washed my hands again before putting on a pair of gloves, all the while trying to stay out of the way of the nurse (who was very friendly and capable) I had just met.

My first view of Gwyneth was, of course, through the glass of her incubator. She was already hooked up to what seemed like a hundred different wires and tubes. As I've mentioned before, the wires and tubes didn't bother me as it was something I was used to seeing with Tricia, but it is still an abnormal experience for any new parent. The ultraviolet light was on, and she had a small, black mask over her eyes She was lying on a blanket, naked except for the preemie diaper which was easily two times too big for her, very wrinkly and very red. Several machines were beeping, keeping close track of every vital sign imaginable.

The nurse was busy attending to all of the tubes and wires, changing a diaper and watching the monitors closely. The incubator had to be kept very warm and very humid, making it difficult to get a good view of Gwyneth through the condensation on the inside of the glass.

The only contact I was allowed those first few days was to gently touch her with my gloved hands.

All of these things basically left me with a feeling of detachment. I knew in my head that this was my daughter, but without being able to touch and hold her and do all of the other things that I would have expected under normal circumstances, it was hard to have that same knowledge in my heart. It almost felt as if I was simply looking at somebody else's baby, or even looking at a strange animal through a pet-store window. There was certainly the joy and pride of being a father, but it was very subdued...not so much because of her or her mother's health, but because I simply could not do the fatherly things that my natural instincts were telling me I should be doing.

The only thing that I could really do that felt semi-normal was to take a lot of pictures. Here is the video I posted at the end of that first day.


("Miracle" by the Foo Fighters)

I'll post more about this later. For now, if you want to get a better idea of what those first few days were like, go back and read some of my posts from early January.

Thanks.

Nate

92 comments:

  1. Wow.

    That certainly makes me look at my own experience very differently!

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  2. Wow, thank you. This was very interesting and enlightening to read.

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  3. Right on Nate! TFS! Hopefully it helps people understand what it's like!

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  4. As a preemie parent, I do understand somewhat, Becasue as you have said everyone is diffrent no one can fully understand what another is feeling. Even though I was awake during my C-section and got a side view of my baby's feet, he was rushed to the NICU 20mins from the Hospital I was at, it was 4 days later when I first saw my baby's face. (Although I did have a picture) It took awile for me to realize I had given birth to the baby I was looking at through the glass. My baby boy is 2 and doing good but what I felt during his NICU stay is as fresh as if it happened yesterday, so your post hit home with me. Thank you for sharing.

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  5. Thanks for sharing this story!

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  6. I just rewatched the video, but this time, I had the post below it showing at the same time....wow....look how far she has come in 6 months!!! I am amazed at this beautiful miracle...and the journey that God is taking you on. Each birth truly is different, and a journey God has given us.

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  7. Thanks for this! My preemie will be a year in 12 days- so all these images (from her) are starting to go through my head again. My first was full term and healthy, so I was comparing them every minute of everyday. Wishing that I could do it again- and not have to be driving back and forth to the hospital everyday. She was only 4 days old the first time I held her- but those were the hardest days of my life. I totally understand the not feeling bonded like you should too... it took a few extra months after she was home to feel even as close as I did with my son within a few days.
    God has definitely blessed you with a beautiful baby girl... and wife too of course :) You will be amazed how fast her first birthday will come!

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  8. I couldn't agree w/ you more! Even though my daughter was not a micro preemie, I can identify with that feeling of helplessness. You aren't able to do the things you feel like you should be doing. I also think I put up a protective barrier. I didn't want to feel too much, bond too much, because there is always that what if. Looking back I agree w/ you everyone's NICU experience is different. I have three kids. The oldest and the youngest both spent time in the NICU. The oldest for a little over three weeks, and the youngest for 10 days. As hard as my first NICU expereince was, the second was harder. I knew what I was missing out on. My middle child roomed in and went home with me. All I can say is that TODAY I am happy to have three happy, healthy kids.

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  9. Nathan,

    Great story, great articulation of the feelings. We have a slightly story from a different perspective having a child diagnosed with CF at birth and needing surgery. We spent almost 4 months in the NICU also with the preemies. Thanks for the story and I am impressed with your ability to handle the toughest of times. Keep up the good work.

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  10. Thanks for writing that!

    My daughter was not premature, but a slew of other health problems sent her straight to the NICU for several weeks. That feeling of not bonding, not holding my baby, detachment is hard to explain without experiencing it. Thanks for writing this!

    For us, that bonding didn't happen until we were home and away from that sterile hospital setting. So glad it's happening for your family now.

    http://capturingalife.wordpress.com/

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  11. Thank you for taking the time to write down all of your feelings for us. I never thought about what it would be like to have a baby you couldn't pick up and hold immediately. To see how much she has grown and developed over the past 6 months is completely amazing!!! For those of you out there that question God-check out Gwyneth and her mom :)

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  12. Although my preemie was not as preemie as Gwyneth, you have brought back many memories. It is so great to see that she is doing so amazing!!! My little guy was in the hospital for a month which is a far cry from how long Gwyneth was in, but it was still hard. Much love to you guys and lost of hope for the future!!

    PS- My little guy is now 2 1/2 and is doing great (with some vision problems).

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  13. As a mother who had 3 micro-preemies in the NICU at the same time, I can absolutely relate to these feelings. It is very difficult to bond with a baby that is behind glass and is hooked up to more wires and tubes than you can count.
    I remember feeling extremely guilty because after a couple of weeks I was allowed to hold one of my triplets, my son, before I got to hold the other two. Having him snuggle in on my chest, I instantly felt bonded to him. I could touch him. I could talk to him. He could look at me. It would be weeks before I would be able to hold the other two. I remember being afraid that I would always have this special bond with the baby I was able to hold first, and not the other two. Of course that wasn't the case, because as soon as I held the other two I began bonding with them as well.

    I've been a mom to a full-term healthy baby that came home with mem from the hospital. And I've also been the mom to micro-preemie triplets who weren't able to come home with me for months. The two are not even comparable. But the good thing is is that the bonding eventually comes. One day it finally clicks that this is, indeed, your child.
    Thank you for taking the time to write about this Nathan. I don't think most people understand how difficult this aspect of having a preemie can be.

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  14. Totally not a sob story - it's reality. Thanks so much for posting this and I look forward to your other posts :)

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  15. Thank you for writing that...I have a 24 weeker too. I felt the exact same things you wrote and it is so nice to hear that I am not alone it. I check on you guys everyday faithfully still, and you never cease to amaze me with your wonderful words and perspective. Thanks for sharing yourself so freely and letting us along with you on your journey.

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  16. thank you for doing this series of posts... I have been wondering all along how the bonding process went/is going for you & Tricia, as it is an imparitive part of a newborn's development and the basis for who they become. And how heart-wrenching and confusing it must be for a parent to not be able to hold their new life... Looking forward to part 2!

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  17. This might be a dumb question, but at what point does a "preemie" become a "former preemie"???

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  18. Gwyneth has grown into herself so beautifully. I can't imagine being in your shoes. I had a hard time looking at the pictures and videos myself. I am still amazed at God's awesome work. It was a little scary to wonder how it would all come together. It is a real JOY to see the four of you (can't forget Meka) enjoying each other.

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  19. I had twins in the NICU. I can relate to some of those feelings. It has taken us time even after they came home with us to adjust and feel like they were OURS. They are almost 4 now and we have bonded great now but it does take a while. We were unable to touch one of them for weeks and then could not hold her for 2 months. Very hard. We did "psycho parent" things like telling my MIL who was in the NICU while were were at home for a short break that she could not bottle feed one because we had not gotten to do that yet, and we wanted to be the first besides the nurses. She didn't understand that we were missing all the normal firsts that babies have and would desperately cling to any little thing we could get to do. Same with first bath, etc.

    I am also a preemie (twin) myself and am lucky I had my own mother there for me who could relate somewhat but no one totally understands all the feelings you have. Sure they have "been there" but not in the exact situation you have. I think sometimes even husbands and wives don't understand because each takes the experience in, in their own ways.

    OK thats a book I wrote, sorry I am opinionated today!

    Lori (mom to Emma)

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  20. I love reading your story and seeing a perspective through another pair of eyes. It is so easy to live in MY bubble of the world and it brings me fresh perspective, appreciation, and awareness/sensitivity for others.

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  21. Nate,
    Thank you so much for sharing that. I could imagine it, but didn't fully understand everything you went through with Gwyneth being so preemie.

    I remember the fear I had when I went into pre-term labor (because of CF), but they were able to stop it with Terbutaline. My daughter was only 3 weeks early because of that. Even though I had that fear, I didn't have to actually live it!

    What a MIRACLE little Gwyneth is!!! Such a beautiful reminder to live each day to the fullest and not take anything for granted. Thanks!

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  22. As I read, It takes me back to the day my little one was born at 27.1 wks, and weighing in at 2lbs, 4 oz. I can remember it as if it was yesterday.
    Being a "Preemie Parent" makes us special parents. We learn so much about our little ones, watching them grow outside, from their cute little wrinkles skin, to them opening their eyes for the first time.
    God was looking out for us that day and has been ever since.

    God bless,

    Em

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  23. Hi,
    I hope I don't offend anyone with my comment. I just wanted to say, as a volunteer photographer with NILMDTS, that it is so great to read about the little babies who pull through.
    I'm not a NICU nurse, doctor, etc. nor am I a parent of a preemie. I am a photographer who visits families in need. So the only babies I get to see are the ones that weren't as lucky as your beautiful baby girl.
    So I just wanted to say that it is so nice to see babies do well after such a uncertain start at life.
    Thank you for sharing.
    Tammy

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  24. incredible journey...Isn't God just amazing.

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  25. Nate,

    I think this is a wonderful post. You are so generally positive and upbeat that it is a kindness for you to share these feelings so that others who might experience the same don't feel like there is something wrong with them.

    All of us experience the birth of our children differently. I was concerned several times during my second pregnancy that I would be unable to love another child as much as I love my firstborn. =) Talk about feeling like an unworthy parent...even before the kid shows up!!

    And many of my friends took months to bond with one of their children even though they had instant bonding with other of their children.

    The good news is that by the time they are walking...we all seem to be bonded and generally totally bought into the fact that "our" child is practically perfect in every way (unless they are annoying us =) ).

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  26. Thanks so much for writing this! I love the video and of course the song is the perfect accompanist.

    As the parent of a micro-preemie I completely understand what you mean about bonding with your new baby. We had to wait 69 days before we were allowed to even hold our son Kyle.

    When Kyle's first birthday came around this year, it just did not seem right celebrating, in a way he really did not feel like he was ours at birth. Instead, we had a huge celebration/birthday to celebrate his one year homecoming. Anyways, I recently wrote a post on my blog about this topic if you would like to check it out:

    http://kupiec.blogspot.com/2008/06/unhappy-birthday.html

    I can't wait to read more of your "Confessions of a Preemie Parent".

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  27. I remember wanting to run away with my preemie. Even though it was best for her to be there, I was so tired of being there. She was MY child but I felt no control over her. It was all up to the doctors and nurses. They even took notes on how we were interacting with her for her file. Very surreal.

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  28. What an amazing journey God has brought you through so far. I just wanted to share with you that even though I had a normal pregnancy and delivery, I had waited so long for a child that it took me months to feel like she was really mine. God is so good and children are a blessing, a special gift from Him.

    Mary

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  29. I completely understand (atleast to some degree) about the instant bonding and really being at a lost...

    My 1st son was born with spina bifda and they missed it on all the ultrasounds and testing so the day he was born I watched (from my c-section table)while they checked him out as they were putting me to sleep (complications with me)I remember very little about that night..except for when my husband came in and said that he was being transfered to Vanderbilt about an hour away and because of everything I had been through I had to stay there...all I said was do not worry about me but go with our son.

    And that was it both my baby and my hubby were gone...(he knows more about the expiernce in the NICU then me)I know about the staying behind and hearing stories about my child, how he was, what he was doing, how many times it took to get another IV started, and when friends came to visit the hospital having nothing but pictures to show...but I know all to well what it is like to bond and really feel like a parent weeks after birth when you finally get to touch, hold, smell, and be the parent you always wanted to be to the most perfect baby!!!

    Thanks for your post...it is sometimes hard to express how hard it can be even after the fact and the worry that still goes along with it...

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  30. Very touching... thank you for sharing, it can't be easy. I do remember seeing the video of you holding Gwyneth for the first time, and being so happy for you.

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  31. I stumbled upon your blog, and thought your story was truly an amazing one! Bless you and your family! Enjoy that little girl, it seems as though she is on a path to good health! I have a little girl who just turned 19 months today...love her to pieces!

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  32. Thank you once again for inviting us all in and sharing pieces of your lives - it is a precious thing!

    Praying that Gwyneth's eyes are developing on track and that you guys won't have to deal with wearing patches on her eyes!

    Blessings for today,

    Amy
    Southern CA
    www.caringbridge.org/visit/rosegirl

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  33. Nate, this is a great way to share with the blog readers what it was like for you guys, thus giving us a glimpse and possibly a little more understanding and empathy should we walk through this with a friend in the future. Thank you for your vulnerability.

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  34. Thank You. As an Aunt of a 28-weeker (who we've JUST gotten word is starting the discharge process on MONDAY!), I am always looking for ways to love and support my sister and her family in their experience that was vastly different from my own.

    God Bless you and that Miracle you have in your hands. Dave Grohl is right...they can never take that away.

    --Katie in California

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  35. Thank you for sharing this with us.

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  36. You capture the feelings so well! Ive done the micro-preemie thing 3 times. I used to think, Im not even sure if they are mine. What if they were switched at birth. Over time when they start looking more babyish the family traits are hard to deny!


    Thank you for sharing! I think you should submit this to the March of Dimes!

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  37. I appreciate your words and candor. I cannot imagine how it must have felt not only for you, but for Tricia. I am so thankful that you've had the opportunity to bond now! You've come a long way baby!

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  38. Hi!
    You don't know me (I've posted a few times).....I am a former premie myself.

    My parents could totally relate to you. I was born in 1979, when technology was far less better than it is now. I was 1 lb. After I was born (3 months early), I was airlifted to another hospital that could take care of me. My mom didn't get to see me for days; my dad immediately left to follow me - by car - the hospital (the funny part is my name was spelled wrong on my birth certificate, something my parents never noticed because of the craziness surrounding my birth; I didn't know until I went to get married).

    Doctors had to cut my eyes open because I didn't open them. I'm not sure how long I was in the NICU, but when I did get to come home, they brought me home in a shoebox!! They had problems finding diapers for me. I wore doll clothes!

    Aside from my small beginning at life, I never had any complications. I'm 5'8" tall, don't wear glasses, never had any learning problems or health problems, etc. I hear the stories from my parents and - being a fairly new mom myself - can't imagine what it is like. I'm so impressed with you and Tricia and I love hearing about Gwen. I wish you the best!! Keep doing all the awesome things you are doing, god bless!

    Kati from KS

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  39. I was pointed to your blog by a friend. My daughter has been tested for CF three times and we've been dealing with all the lung issues that come with it. We just found out that she's negative for CF, but her lung issues rage on.

    She was also born at 28 weeks and spent ten weeks in the NICU. My entire pregnancy was troubled, so I can really relate to everything you wrote. My baby is eight months old today, and I am just starting to feel like she's "mine."

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  40. Nate,
    My daughter was not a micro premie, however, she was adopted internationally. Olivia didn't come home until she was 10 months old; up to that point she lived with a foster family in Guatemala. I did not see a picture of her until she was 2 months old. For 8 months my only connection to her was through a photograph. Helplessness could not even describe what I felt as I awaited courts and lawyers to say it was OK to pick up my child. I had no idea what to expect from her or myself when it came to attachment. Obviously our circumstances were very different, but I feel like I can relate to your feelings on some level. As you stated, bonding builds over a lifetime. Thanks for sharing your story.

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  41. I wanted to let you know that I personally can not understand what you were feeling at the time of Gwyneth's birth because I am not yet a parent. However, I was a premature baby. I have a twin sister and we were born 2 months premature (we will be 24 tomorrow). My parents had to see us in the incubators with the black mask as well as a million tubes connected to us. We also had apnea monitors that went home with us after we left the hospital. We had those that went off quite frequently for a few motnhs. I just want you to know that I can understand your feelings and that I can only imagine how hard it was and still is. Bonding is a very important for a newborn and unfortunately many preemies do not get the bonding experience that normal healthy babies get. I am an avid reader of yours, and I check the site at least once a day. Tricia and Gwyneth are both beautiful individuals. May God continue to bless you and your family. Thank you for sharing your story with all of us.

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  42. Wow. I hadn't thought about it from that perspective. That must have been heart wrenching and tedious. And for 4 months! Your family has been through so much. My troubles seem like a walk in the park compared to what you've been through. ((Big Hugs)) You guys continue to be in my prayers.

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  43. You know what Nate. Your right no two situations in NICU are the same. Mine were not.
    But I can relate to the feelings that you expressed.
    Although my Son our preemie is now twenty six looks me square in the eyes daily. It amazes me what a wonderful gift I was given back then.
    My Daughter was a NICU baby for different reasons. She has also done well with some issues but doing well none the less.

    Ironically my Son the third. Was incrediably healthy and I ended up in CICU. So they had him stay till I was allowed to go home. Which was a whole different experience.

    I agree in those circumstances the bonding is different. Although I made a choice not to forget from where we came.It still amazes me at times.
    I think you have been great Nate in very tough situation. Those of us who are Nicu parents all know its a
    tough journey.

    I gotta feeling you and Tricia will be just fine as parents.

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  44. I couldn't agree more with what you've said. Being the mother of a preemie was a difficult experience which no one seemed to able to relate who had gone through a "normal" pregnancy and delivery. Feeling like an onlooker rather than the sole caretaker was extremely difficult for me and it left me with feelings of guilt and detachment from my daughter. I understand where you are coming from and I know how "lost" it feels, especially in the beginning. I know you only wrote your "confession" to show people what day to day life was like and I know you don't mean it as a sob story. From being there, I can empathize so thank you for being willing to put your thoughts and emotions out there for others to read and be encouraged by. Even though my experience has been almost 4 years ago it is still very close to the surface for me and it is comforting to know that other preemie parents have gone through the same things as I did.

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  45. I've been following your journey for a long time now, and finally am going to delurk, most likely because I relate so strongly to this story. The story I wrote of our journey 2 years ago sounds eerily similar to this post, and like thousands of other preemie parents, I'm sure, evokes emotions that can sometimes take the breath away...
    Thanks for your words.

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  46. My twins weren't as early as your girl (mine were 29w5d), but DD was barely above being classified at a micro-preemie.

    It was the hardest thing in the world, for me to feel very attached to them in the beginning. My husband and I had tried for 5 years to have these two. Now I was wheeled in to the NICU in my bed after they were born, and I had a very hard time feeling anything towards them. I would certinally say it wasn't the gushing feelings of love that I had always dreamed of the first time I saw my babies.

    Then came the not being able to hold them, not being able to touch them more then 5 minutes every 3 hours in the beginning. Even when I could hold them I felt disconnected from it all. I resented being told when I see MY CHILDREN. I hated some of the nurses that felt they were the only ones capable of taking care of them.

    It took until they were almost 7 weeks old, when DD smiled at me when I told her I love her (OK not a real responsive smile, but it was the first one I saw, so I count it). But at that point I felt better about things.

    The day they came home will always be the happiest ever in my life. Not the day they were born as most parents say, but the day I finally 100% felt like I was their mother.

    Nate, how very well you have summed up what many of us have been through in one from or another.

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  47. Thanks for sharing Nate. My DS was a 1.5 lb IUGR 28 weeker. I got acute onset HELLP syndrome and he needed to be delivered via emergency c section under general anesthesia. So in a way, neither my husband or I were "present" at our son's birth. I didn't see him for almost a day (not nearly as bad as what Tricia dealt with I know). I started getting that detached feeling. I loved him, of course. He was my son.

    But I was so shell shocked and still so ill myself that the cocoon I had made to protect myself from harm was also preventing me from connecting with him.

    It was on Day 3 or 4 of his life that a wonderful NICU nurse recognized it in me. And without calling it out, she helped me make a bit of a breakthrough. She casually mentioned that she was going to give my son a sponge bath because she noticed his hair still had blood in it from delivery, and could I please help her?

    As I was "basket holding" him while she washed his hair, his tiny hand grasped my finger and he opened his eyes.

    Certainly we still had tremendous hurdles to overcome in bonding. This was one of those moments where I realized how starkly different our experience is from most parents.

    Thanks for sharing. It always helps somehow to hear that other preemie parents experience a lot of similar emotions and challenges.

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  48. Thank you for sharing so openly.

    Blessings!

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  49. Everything you said is very true. I and my twin brother were micro-preemies (20 years ago now) and from stories my parents have told you are right on with everything. Even after the baby comes home things are still different compared to a "normal" baby. You guys look like your doing a great job and it's been neat to follow your story.

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  50. Nate - It certainly doesn't sound like a sob story at all - it is the reality of your experience. I could relate on some levels as I am an adoptive parent. I remember the nurses my children to me in the hospital and me thinking, "Wow. So this is really my baby. Strange." While I did feel love for them and bonded to an extent - I felt much of what you described. It wasn't yet a reality to me. A reality that they were my child nor a reality that I was a mother since I hadn't carried them for 9 months.

    The good news is that I feel more and more bonded to them with each day I get to know them better and as the person God created them to be is revealed to me. It's totally cool and is more sweet every day. What a blessing children are! We rejoice with you that you now have little Gwyneth home and are getting to know her more and more every day!

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  51. I did not think you were telling a sob story at all. I appreciate your perspective. Thank you for sharing your experience. I now have a greater appreciation of my own experiences, being one of those moms who was able to hold my babies within seconds & going home from the hospital in a day or two. I really enjoy reading your blog, and I have learned so much from reading about your experiences! Thank you SO MUCH for sharing with all of us strangers! We are still praying for all of you!

    ~Sara in MD

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  52. Nate: I can relate! We had a 29-weeker 5 years ago.

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  53. It is a different experience, isn't it. I myself am the parent of a micro preemie. My son, Parker, was born on May 29th, 11 weeks early because I developed HELLP syndrome. When I first met my son, I was completely unprepared for what I was going to see. I had seen pictures that my husband had taken of him (I didn't get to meet him until 3 days later because I was in the ICU for a while. But when I saw him in person, he was tinier than what I thought he would be. It rocked me to the core.

    He is still in the hospital right now (6 weeks later) and it has been some of the hardest more rewarding times, these past 6 weeks. I can finally hold him more often but it is so hard. I have learned to fully rely on God and trust that he has Parker and mine and Drew's best interest at heart. I get stressed easy, but then I remember that God his taking care of us too.

    Thank you for sharing your post with all of us! While our situations were different, I do understand some of the feelings and things you went through!

    Denise Northern
    http://web.mac.com/parker.northern

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  54. I was 7 weeks premmie (I tell people i just wasn't going to wait 11 months for my first christmas) and my mum often tells of the same detachment at first, she just says when dad wheeled her down to the special care nursery a few hours after i was born that she thought "that's a cute baby but mine's still in my tummy", because she didn't get to hold me when I was born even with a natural delivery, so she missed out on that initial, count the fingers and toes, have a feed & cuddle delivery room experience.

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  55. I absolutely agree with what you said about "stunted bonding". My son was found to have spina bifida at birth, which resulted in his being flown 300 miles away for surgery and a 2 week hospital stay. Since we weren't prepared for this at all and I'd had a c-section which prevented my going with him, my husband went and I stayed at home with the other kids.

    I knew intellectually that I'd had a baby, but I didn't feel anything in my heart. One of my son's NICU nurses sent me a picture of him that she'd taken when he was sleeping one morning and when I looked at it, I felt nothing other than, "Oh, he's a cute baby." It was like looking at someone else's child, not my own.

    When he came home, I struggled to feel connected to him at first. He'd cry and I didn't feel the same overwhelming need to comfort him that I had had with my other kids ~ again, it wasn't that I didn't care about him, but rather that I didn't feel bonded to him, so his cries affected me the same way hearing a stranger's baby would.

    Of course, over time, things got better and I gradually came to feel in my heart that he was my little boy.

    It was good to see the same thoughts put into words on your blog today. I thought maybe I was deficient in some way for how I felt, so it is really reassuring to know others have felt the same way.

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  56. You describe it so well, Nate. Its quite peculiarly isn't it...that extreme sense of responsibility for this little one who you honestly feel quite disconnected from. The journey is unlike anything we ever dreamed or desired, but one we wouldn't trade for anything in the world.

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  57. "A stunted sense of bonding"...those are the exact words I've been looking for. Thanks for putting all of that into words so beautifully.

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  58. Like you said not every exsperiance is the same, but I can so realate to alot of that. My twin boys were born at 29wks6days. They stayed in the NICU for 48 days. I won't every forget those 48 days. Being a preemie parent changes you. I'm so happy Gweneth is doing so well. Sure there will be bumps in the road, but that's one strong little girl and she has two strong parents.

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  59. You did a great job describing the experience of the parent of a newborn preemie. My son was born 5 weeks early, which isn't too bad by most standards. He is 4 1/2 yrs. old now and I can remember his stay in the NICU like it was yesterday. There is nothing quite like going through a difficult and unexpected early labor to go home without your baby, to go through visiting in the NICU, and most of all, being unable to hold your newborn. I don't think you can quite grasp all of the emotions associated with it unless you've been there. I remember hearing other new parents complain about small things and wishing that was all I had to complain about. Luckily my son is healthy and happy today and I can now complain about the simple things.
    I've really enjoyed reading your blog and wish you the best in everything.

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  60. As a (former)NICU nurse who cared for numerous micro preemies, I appreciate you sharing your perspective. Your little princess is precious and your family is in my thoughts daily.

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  61. I had my twins 13 weeks early and they spent 80 days in the hospital. One came home on oxygen and was on it for an additional two months. I love seeing pictures of Gwenyth and how amazing she looks (even with the canula and all) My girls are now 2. I am blessed just like you with two beautiful miracles. I can relate to what you are writing about. I remember feeling extremely robbed in the beginning. That my birth experience was not a loving wonderful one...but one filled with fear and medical devices.

    I am looking forward to nodding in agreement to your future prematurity posts.

    I am praying for you all.

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  62. Oh NATE.... "amazingly" well articulated, walking through the first days of being a parent of a preemie (and a micro-preemie at that).

    You have finally struck a chord large enough for me to leave a comment. I've been reading your blog for so many months now, it feels like you are a part of our family. In fact you have become a part of our family, in thought, conversation and mostly prayer.

    I am beyond thrilled, happy, elated to follow Tricia & Gwyneth's progress. It's proof that prayer does work - GOD is great!

    I too am a parent of 2 preemies - 1st son Noah, born 32 weeks and is now a healthy, loving & strong willed 7 year old love of my life and our 2nd son Joshua, born 24 weeks & 3 days. Unfortunately, God only loaned him to me for 17 days. He was a strong little soldier, but his little 1 lb,11 oz body could not fight an infection he caught around day 15.

    To say I know what you are going through is not true, but to completely relate to this post is something I too have experienced! And I have to say THANK YOU for putting it in a way that really makes others stop and think of what goes on behind closed doors. It will maybe bring some perspective or understanding.

    I just really wanted to (finally) stop by and express what an inspiration your and your 2 girls have been to me! Thank you for keeping my perspective!

    Please send some *hugs* from New Brunswick, Canada to your girls!!! And for you Nate, keep up the great blogging job - your words are truly an inspiration!

    Tara

    PS - a nice video of you playing your new guitar would be cool (hint, hint)!!

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  63. Such a beautiful story, thanks for opening up the window to the emotional trials of a preemie parent.

    I'm an enamored reader of your blog, and there are two things that stand out in virtually every post that I wish could be true for every new parent:

    1. That the love that you and Tricia have could be true for all new parents. (I gave birth at UVA hospital, and the nurses were shocked to have a "true" family in there, meaning a happily *married* couple.) Your story is such a *love* story.

    2. That every new parent could have the time to spend with their newborn that you had. I can't help but think that the time you were able to give both your girls, along with the *love* mentioned above, made a huge difference in how far they've both progressed.

    Reading your blog is a wonderful reminder for me to enjoy the simple things in life - the love of my family and creating memories with them. I really appreciate you sharing your story. Thanks!

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  64. Thanks Nate for sharing!

    Prayers continuing as always!

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  65. I'm so glad you decided to write (more) about the NICU experience and the challenges of bonding with your baby in such a restricted situation. It was a painful, anxious, and traumatic experience for me, with 30-week triplets. Yet we didn't have half the medical worries that you did with Gwyneth (and Tricia's health too).
    When we finally got our babies home from the NICU and began to care for them day and night in the "ordinary" way, it was a huge transformation in our relationships. A great weight of stress and fear was lifted from our shoulders, and in spite of the new challenges of parenting, we felt so much happier! I don't think we really understood how hard the NICU experience had been until we'd moved beyond of it for a few weeks, and could allow ourselves to acknowledge those feelings of pain and loss and detachment that had been constant burdens.
    I am sorry for how very hard Gwyneth's time in hospital has been for you and Tricia - at the same time I am so thankful and overjoyed that she is so healthy and is home with her family at last. You have been so richly blessed! I will keep on praying for all of you.

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  66. We are also preemie parents--and we were in the NICU at the same time Gwyneth was. Reading about your experiences and your attitude toward everything you were facing during that time helped me get through those days and stay focused on the blessing of life we had been given. Thanks for sharing! I couldn't have put the experience into words any better!

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  67. I can relate, brought back vivid memories as I watched. I had a preemie 2 pound baby girl who fought her way through. She was the very first baby to try out the high frequency ventilator, we had to sign a contract stating we wouldn't hold the hospital liable if she died. It was also the very year that so many babies contracted H.I.V. because of tainted blood. Ashley should have not been spared as she had multiple blood transfusions but God spared us. She was in the neonatal unit for 3 months before bringing her home at 7 pounds. That miracle baby is a beautiful 23 year old Godly young woman today.

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  68. You are right that every "preemie parents" experience is different. I am the mommy of twin preemie boys born at 28 weeks. They never had to be intubated, only on CPAP. I got to hold Abraham one day after he was born, with all the tubes and stuff. It was longer for Moses because it took them longer to get him stable. I remember thinking that if they would let me live in that room with them, that I would do that. I felt guily going home and leaving them alone. I never really felt like "mom" until Abraham came home from the hospital. We handed Moses back to Jesus just after his 1 month birthday. That was hard because I felt and still feel that I never really bonded with him.

    I think that your sharing your experiences will open peoples eyes and hearts to the struggles that preemie parents have dealing with all the "stuff" of NICU. Please keep sharing with us.

    Thanks Nate.

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  69. This has changed you forever. I know. 32 years ago I watched a baby whom God had entrusted to me, struggle to live. The hours turning into days into weeks just standing helplessly watching nurses take care of my responsibilty.
    Finally holding him close too late to give him comfort.
    ...In the days before blogs talking was not even encouraged.
    Hiding the pain was a daily task.
    Your blog is a ministry to others but it is also good therapy for you.
    All any one of us wants is to be heard and know that others care.
    God is there every step of the way and allows us to suffer that we might comfort others who are suffering.
    May God continue to bless you and your precious little family.

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  70. I've thought this before - you have been blessed not only with your miracle family, but also with the gift to share. Thank you, Nate. Still praying :) God's love and peace...

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  71. We had a 35 week child. Bigest NICU baby they had at 7lbs 12 oz, but she was a PREEMIE...she was ours, and we loved her but well she fussed and we would go home. We didnt feel like parents...we didnt change her or anything. When we took her home, then she was ours but then I really started missing the nurses! I had no clue what to do...
    Though I havent ever not have a NICU baby, NICU parents are spiecal. They know not to take their child for granted. Things are different and its for a reason...
    Thanks for sharing part 2 of your story as a preemie parent.

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  72. Nate, though we didn't have a micro preemy we had a 3lb preemie back in the early 70's. Then the technology wasn't so good but we had many of the same experiences. It brought back a lot of memories reading your experience. The Lord gives you the grace in the time and you wonder looking back how you made it sometimes. Thanks for sharing.

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  73. Long time reader, first time commenter here. I had a full term baby who had to spend 10 days in NICU. By the time I saw my son he was intubated, had been given a muscle relaxant and was sedated. It was horrible. I only had to wait 6 days to see his eyes and hold him for the first time. My husband and I only had to wait 10 days to take him home. I cannot imagine how frustrating and upsetting it would be to have to wait the amount of time you and other premmie parents have to endure. Even in our small time frame, I can relate to what you have written. That first contact is so important and special. Yes, I did bond with him, but it did take awhile. When I had my second, my ob had written on my care card in big red letters - immediate contact with baby. It made the world of difference. We bonded immediately and in made those first few weeks just a little easier. I love my children equally and while I understand without medical intervention I would not have my son here to hold today, I will mourn the loss of those first precious moments forever.

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  74. Great post!!! After I delivered my twins (via c-section) I didn't get to see them (other than being put in my face for a milo-second) until after I came out of the recovery room. We were so blessed that they didn't have to go to the NICU. The hospital we were at doesn't have one and they would have to had been air-lifted to Charlotte. Thanks for sharing it with us.

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  75. Well put. I was nodding and wiping tears as I read this.

    My triplets were born at 23 and 26 weeks and we went through a lot of what you described. For the first mont or so of Lorne's life (my 23 weeker who we were all but assured would never make ti home) I called him "the baby" as I could hardly bear to even say his name - because I was so scared of losing him that I didn't want to get too attached. Though my experience was QUITE different from Tricia's, obviously, in that I was "just" pregnant, not very, very ill - I was only able to spend a total of about an hour with him his first three weeks of life as I was still on bedrest with the other two.

    The boys are almost four now - and wonderful. I mean, of course they're wonderful... but they're *healthy* and smart and ornery and so "normal". Hang in there.

    Take care,
    Kara

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  76. now look at her. just amazing. she is one beautiful little girl.

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  77. When I was recovering from my c-section and my preemie was in the NICU, I had a nurse ask me where the baby was. That was the hardest thing to have someone in that position ask me. Then on the 4th day, I finally asked when I would be well enough to see her and the nicest nurse was shocked that no one else had let me see her and so she immediately wheeled me off to see her in person. Praise God for people who understand the separation/ bonding issue! Your post was good to read- I'm glad to know I am not the only one to have felt that way.My daughter turns 7 this year.

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  78. Thank you so much for sharing, it's so amazing to see how far Gwyneth has come in 6 months. I don't have any children of my own yet, but my younger sister was a preemie (I haven't heard the term micro preemie before but she would have qualified). She was born about 3 months early, weighed 1lb. 10oz at birth and stayed in the hospital for 16 weeks. After coming home she was on oxygen for a while longer. I was 5 at the time and remember going to the hospital everyday to see her, towards the end of her stay my older sister and I were allowed into the NICU one time and were able to hold her - NICUs are strictly off limits to anyone under the age of 14 so it was truly a special experience. Today she is a healthy 23 year old serving in the army reserves. She has a few health problems that doctors believe might be caused by her preemie status, but in the past 23 years medical knowledge has changed a lot and from some of your posts it sounds like they have learned a lot and are working to correct or prevent some of the problems. Keep trusting in God, His miracles never cease to amaze me.

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  79. Our twins were born at 23w0d. Our daughter only lived for 102 minutes. I didn't get to see my son till 3 days later as I had an infection and they didn't want him to be exposed to it. We live in Japan and we were at a very traditional/old fashioned hospital that didn't believe in kangaroo care or the importance of parents being there with their children. We were only allowed to see our son for an hour each day and were not allowed to hold him till he was out of the incubator 3 months after he was born. He was in NICU for a total of 6 months. I had a hard time bonding in the very beginning because I was grieving the loss of our daughter so hard. During the six months, it felt very strange. I told my friends it felt like I was an adoptive mom of my own bio child. I have now completely bonded with him and love him beyond words.

    He came home on nasal cannular and we were home quarantined for another 6 months so even after he came home the experience isn't "normal". But everything happened as God planned it to so I guess it was the "normal" for us! :)

    Sonia

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  80. I fully understand where you are coming from... my 26 weeker will be 10 years old in August and I remember the day he was born like it was yesterday. The NICU for three months and the robes and washing all the time, the constant beeps and the consistent rocking in the chair next to the isolette. The hardest part was not being able to hold my son for 11 days... when I finally could hold him, it was like he was born that day. HE was 2 pounds 4 inches and went through everything a preemie could go.. I call it his preemie checklist of sorts... good luck the parents of preemies are in a class together!

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  81. I am still balling! I looked at the video and then at the current pictures you posted of Gwyneth and I just cried and thanked the Lord for her. What a blessing.
    Thanks for sharing what your experience was like. Our preemie spent only 3 days in the NICU and that was tough. I can only imagine how difficult it was for you and Tricia. I am just so glad she is home with you now and just seeing all the photos of you, Tricia and Gwyneth together brings a smile to my face and melts my heart. Thanks so much for sharing with us.

    Blessings!
    Amy Lynn

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  82. I always wondered about this aspect of preemie mommy and daddys...but never felt comfortable asking. I struggled with attachment, but for a totally different reason. I struggled with post partum after the birth of my children. At about three months I looked at my oldest and fell in love. I have always felt very guilty of that, but God's timing was perfect for us. He is six now and he still makes my heart beat faster when I see him!! Thanks for your honesty Nate...

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  83. Just reading that gives me a sense of helplessness...I never felt it myself but trying to put myself in your place with my daughter is almost unimaginable. It makes me want to grab Abby up and hold her close right now (but I'm not going to since she's sleeping soundly). All we can do is try to empathize with you but most, if not all of us will never know that feeling.

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  84. couldn't have said it better myself.

    having a 29 weeker and then 23 week twins, the NICU feels like home to us. sadly, our twin boys only lived for 2 and 3 days.

    its amazing how many people take the healthy pregnancy, normal delivery and bringing baby home for granted. if they only knew...

    but i have learned that this experience, of being a preemie parent, makes you appreciate EVERY milestone, every moment.

    your lil girl is beautiful and i am amazed at how well she is doing! i just wish our 23 weekers would have pulled through. but its true what they say, girls always do better than boys..

    thanks for sharing this perspective ..

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  85. While my first child wasn't a premie, she had medical issues and I didn't get to hold her and had to "visit" her and I didn't bond with her til she was out and I had her home. I remember crying in my room, because all the other mothers had babies in their rooms with them. But I shouldn't of felt too bad, because I did have a baby to go look at. I know their are many whom could not even do that.

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  86. your rose was twice as big as my first born... born at 20 weeks, she was 9 inches and only weighed 8.6 ounces. i don't think people really "see" just how tiny and fraile these little children are. it is such a blessing and answered prayer that your baby girl pulled through as well as she did. you three are so blessed. hopefully your blog will answer a lot of questions people have and the video certaintly gives people a comparison size of life with the hands in it!

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  87. It took nearly 6 months after I brough my preemie home to really feel like she was MINE...it takes a little while to feel fully bonded but it does happen! Your post was really beautifaul and enlightening. God bless!

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  88. thank you so much for sharing so graciously your experience! i can't wait to read more of your reflections on that incredible time. praying, jen in al

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  89. Wow, you described it as I felt it. I have two daughters. My first was a preemie and I missed out on the bonding process and had a very difficult time bonding with her until she came home and I didn't need permission from nurses to see her. I always wished things had started better and new I should feel different and in love with my baby. My second was not a preemie and our bond was instant as you describe it should be. However, as you probably know the love and bond grows and grows and you forget that you ever felt detached. Thanks for posting your perspective.

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  90. I LOVE this post! I'm a preemie and I've heard my parents share a very similar story all my life.

    I am a twin, and my sister and I were born at 25 weeks, each only weighing a pound. The Dr's gave absolutely no hope for either of our survival. I am almost 46 years old now, so you can imagine that back that many years ago, technology wasn't what it is today. We were too weak to be moved to a specialized hospital once we were born, so we were just placed in incubators - no diapers - and basically left on our own.

    My parents made 101 trips to the hospital before they were even allowed to touch one of us. It was a very, long, slow process. People all around the world were praying for us, and to this day we are still referred to as the "miracle babies". God was so good. He continued to breathe life into us. With God NOTHING is impossible.

    I first visited your blog in April and I have continued to check in with you. My prayers are with you and I'm so thankful for all that God is doing in your life and that of your family.

    Thanks for the walk down memory lane.
    Blessings,
    Joy

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  91. I know I am very late posting on this subject, but you have hit the nail on the head here! I read other preemie blogs and I find myself either crying b/c I have been where they are about to go or cheering b/c they have reached this milestone that to another parent may go unnoticed. I have found that since having Kellar at 26 wks there is nothing that he does that I take for granted!

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  92. Hey Nate! I love the slideshows you create, set to music. How do you do that? A special software program? Would love to know, if you can spare a sec. Thanks!

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