Wednesday, July 16, 2008

Confessions of a Preemie Parent (Part 2)

(Part 1)

One of the most difficult things about being a preemie parent is the absence/delay of all of the big milestones of the first few days and weeks. It was nearly a week before I could touch Gwyneth without gloves on, nearly a month before I held her, three months before I could feed her from a bottle, etc. The NICU smells nothing like what most people think a new baby should smell like. Not to mention all of the developmental milestones. In fact, neither Tricia nor I were even really there for Gwyneth's birth. I was in a waiting room, and Tricia was sedated.

And, I can't even begin to imagine how it was for Tricia. That was actually one of the greatest frustrations for me during those months in the hospital. Because of Tricia's own health, she behaved and reacted to many things differently than I would have expected. Without going into great detail, because Tricia was so sick, and because she had so much less contact with Gwyneth than I did, it was even harder for her to connect with the idea and emotions of having a daughter. Gwyneth was nearly a month old by the time she even saw her, and nearly two months old before she could hold her. Even as her husband, it was hard, and really impossible at times, for me to understand what she was going through.

And, it became even more difficult when people would comment about their expectations of our thoughts and behaviors. "Tricia must have been so excited about...", or "You both must be so happy about..." became hard for me to hear and read, and made Tricia actually feel guilty if she heard/read them. Well meaning people thought they understood, but really had no idea. When we had guests visit at the hospital, I would often have to ask them, before going into Tricia's room, to not talk about the baby and the pregnancy unless Tricia brought it up. After the first few weeks (after Gwyneth's birth), I banned Tricia from reading comments until I could censor them, and I can't tell you how many of those comments I deleted, not because they were mean or insensitive, but simply because we couldn't emotionally deal with reading them.

We knew that, under normal circumstances, we would be acting and thinking the way most people would have expected. We would feel as we should the first time we both saw her, held her, took her home... But, we obviously weren't under normal circumstances, and it seemed that the only people who really understood that part of the picture were our family/friends and other families who have been through similar experiences.

I had to continually tell myself, "If I can't even understand some of the things Tricia is dealing with, I can't expect people to understand what I'm going through." And, I think that's one of the most difficult parts of these kinds of journeys...the knowledge that, while you're certainly not alone, most people just can't understand.

But, through the blog, so many have encouraged us by sharing their premature birth stories with us. And, that, in turn, is one of the primary reasons we have chosen to share our story. Most likely, somebody, if not several people reading these words right now will become parents of a premature baby at some point in the future. Being a preemie parent brings a lot of unnatural feelings and emotions. We knew very little about premature babies or what to expect as preemie parents before this experience, but we've learned a lot. And, we hope, that we can help others in the same way that we have been helped.

Thanks.

Nate

74 comments:

Sarah said...

wow Nate, I knew you wrote well but that was very well written and you were able to say things in a way that we understood. I hope that I never have to go through the trials you have gone through but if I do, I will draw strength from you and Tricia's story

Beth Johnson said...

Nate,
If you will allow me - I often wondered about the very thing you wrote about. I often could sense from your entrys that you had connected more than Tricia with the baby. But that was only to be expected and can be understood.

God's ways are so often hard to understand. But no doubt He had been preparing you for this season of your life for many years.

Thanks for sharing your journey.

Beth Johnson

*Lissa* said...

Very well-written Nate. It is wonderful that you are sharing your emotions and your story.

Ronnica said...

Thanks for sharing this. Not ever having a premie (or any child, actually) I haven't a clue what a parent would go through in this situation. I can see how I could easily say something insensitive without even realizing it or meaning to.

Risa said...

Being the mom to a little boy we adopted when he was three days old, I totally understand people saying things they think are helpful but actually can be hurtful. Like.. hey I bet you'll get pregnant and have your own child now that you've adopted. And talk about creating bonds with your child - it can be a process even in the most perfect settings. In our case there of course was no bonding prior to birth - no flutters, kicks, sonograms, heartbeats etc. And then the fear that the birthmother would change her mind at the last minute... not to mention seeing the pain she was in while placing the child who grew in her womb, into your arms. A complete roller coaster of emotions - such joy for us, and yet feeling such pain for her! resulting in a bit of an emotional meltdown for me when we got home with our son. Becoming a parent comes in so many shapes and sizes it seems! And the bonding that takes place over time fills your heart with overwhelming love. Sorry.. that ran on a bit! Thank you for giving us a glimpse of your experience.

Courtney said...

I wanted to ask the "does she connect with the baby" question in the beginning, but didn't want to come off as rude. Reading this took me back. I didn't have a preemie, but other things with my pregnancy it took me close to 6 months to realize I was my daughter's mother and her "real" mother wouldn't be coming to pick her up. It was hard.

AlaneM said...

Nate, I'm so glad you are writing this. I'm always interested in learning more about what kinds of things are helpful/hurtful in a given situation. I always worry that I'm going to say something well meaning & sincere but that it will hurt in some way. But you just don't know until someone tells you.
Someone (nudge, nudge) should write a book about this.
Thanks so much for the education!

Kim... said...

Hey Nate -

Amazingly written entry. When my twins were born, I was so sick that I barely remember having them. They were in the NICU for a week before I was able to see them, and even then, with all the monitors and wires - I almost felt like I was looking at someone else's baby. My husband would bring me pictures, but, again, it was hard to connect to the fact that they were really mine. I would stay awake feeling so guilty that I didn't connect immediately with my girls, that I almost didn't instantly attach to them - almost as if they were foreign to me. Thankfully my love grew immediately after I regained strength and the girls became more independent. It definitely was such a difficult and unexpected experience to go through though.
Thank you for posting this - it's almost relieving to hear that others have felt the same way. During that time, I just always told myself that God wanted to hold onto them a little longer to let me heal first, almost to take care of them so I could take care of myself. Knowing that my girls were supposed to still be inside of me growing - God wasn't fully ready to let them go.
Prayers & Love,
Kim
Wilmington, NC

Brody's Mom said...

Nathan,
These posts are so well written, and much needed for so many. While my immediate family has not experienced any premature births, we are a March of Dimes family, with my mother just about to retire after 20+ years of service. I have grown up with an awareness of prematurity and a passion for finding causes of, and preventing premature birth as well as birth defects, but your story makes it even more "real" to me.
Your journey, and your willingness to share so much of it with us, has and will undoubtedly continue to provide support for those who have been through similar situations, as well as a bit of understanding for those who have not.
Thank you for sharing it with us.

Continued prayers from Florida headed your way!

jessicagv said...

Thank you for that. There are not many people who could possibly understand what you went through and how unique the situation you and yoru families were in.
Thank you for explaining it so eloquently.

Blessings From Above said...

I was so excited when I saw your title, Confessions of a Preemie Parent (Part 2), and of course you did not disappoint!

Along the lines of people with well meaning thoughts...When my 25 weeker was born last year, something that was very difficult for me was when people would ask who he looks like. A perfectly natural question for your typical newborn, but a question that would make me sick to my stomach when asked of our little one pound baby. His head was the size of a small fist, his arms the size of a small index finger and his torso was about as big as my wrist. To be frank, he did not look like a baby at all, more like an alien or wounded bird.

But, God created this tiny miracle that grew to become the most beautiful baby in the world to us. While we did not have the traditional newborn bonding experience, over time I have come to realize that we have been very blessed to watch one of God's miracles right before our eyes. In the end, while our bonding experience was not easy in the beginning, over time I think the micro preemie experience has made our bond even stronger because we take nothing for granted. Every milestone if miraculous. I hope that Tricia and you will one day be blessed in this way as well.

Thank you so much for these posts, and articulating it in a way I never could!

Shawna Barlette said...

35 years later, and I can still recall busting out in tears whenever I saw another "normal" baby in a stroller, or in mommies arms during the time my daughter was growing in the incubator. It didn't seem like anyone understood the pain of leaving the hospital without your newborn. She spent 2 months in NICU (before there was such a word). Today, she has blessed us with three beautiful grandchildren. It is a very different start to parenthood, that will make you a very different parent. Your story is incredible. All my best to all of you.

$$$ Nerd said...

Thanks for continuing to share your words and your heart. The perspective you are sharing really does help shed light on a very touchy subject. I hope that sharing your journey has changed me in a good way to better empathize with others in similar situations. The clarity with which you have explained your story to us only makes me realize how much more fully you have had to deal with these emotions etc. I think ya'll are very lucky to be dealing with all of the feelings and emotions so soon. Continuing to pray for you guys!

McTriplet Mommy said...

Oh, Nate. Our situation was different than most as well (though for very different reasons!!) in that I gave birth to one of my boys three weeks before the others and I remained on bedrest, "doped up" on anti-contraction drugs, etc. during those three weeks. I saw my "oldest" twice - for a total of about an hour - during his first month of life and I was not allowed to hold or even touch him during those visits because from my hospital bed - I wasn't able to adequately "sanitize" myself.

I too was SO frustrated with those very well meaning comments... "Oh - you must be so excited!" "Congratulations - you're a mommy!" etc., etc.

Thank you for blogging about this... your blog has such a HUGE following and you are educating many.

Take care,
Kara

Bridget said...

This piece is eye opening and your honesty is commendable! Thank you for sharing this with us!

asplashofsunshine said...

Incredibly honest, and an amazing eye opener for me.

Lisa and Jason said...

Although my two boys arrived on their due dates, both my husband and I say now that the real bonding happened as they got older...parenting isn't easy at all in the beginning even in the most perfect of situations, so we cannot imagine the difficulties of the way things began for you and Tricia. Now as the parents of a newly adopted child, we have now had our share of "helpful" but hurtful comments. Thanks for sharing your very personal journey with such honesty. We pray that your journey as a family continues to be blessed by God as you get to know your beautiful little Gwyneth!

siscaboo said...

Thank you for writing that. A lot of people just don't get it. And your experience is very unique to say the least.

My son was in the NICU for 81/2 months. It was the most heartwrenching 8 1/2 months but, also the most blessed of my life. While my story has a different ending then yours. I the wonderful comments of how do you clean your house or take care of your other children. Like that matters.

I didn't really feel a connection with JT until about his 1st month. I was very scared and still in shock that he was 3 months early and then when I finally got it into my head that this little man was mine, well, it just flourished from there. There were some hard days and some really awesome days.

And explain why I just told you all of that?

That is why I never comment. I run off at the fingertips.

But, anyway, God was there with us. And JT left a great testimony.

As I am sure you know between your daughter and your wife they testimony that they have to God's love and grace.

Thank you!

Monkey's Mommy said...

I had trouble with the guilt - I only missed out on the first 3 weeks but remember not even knowing what Eli looked like. I think my David had a hard time with me not asking more about Eli - he's told me how he didn't understand my seeming lack of desire to know more. But then there was that point when Eli looked at me and somehow he just Knew me.

There have been many frustrating points regarding things as simple as a baby book - and many tears shed over missing Firsts - and well-meaning people can say things that hurt to the core even though intentions were not so.

All the rambling to end with a Thank You for sharing your confessions so openly and honestly.

Tara said...

I'm glad you're writing about this. It's something that I guess you really just have no idea about until you've been through it. I have never been through it so some of what you're saying is surprising to hear, but good to know.

Renee said...

My youngest sister was born premeturely, & i was a 10yr old at the time & i remember it being really hard for my mother, she felt like she had no baby, because after having 2 other babies[myself & my sister] she felt more loss, than the usual excitement at that time.She cried alot about it.

I remember visiting my sister in icu. We had to wear gowns & masks & scrub up, before we walked in & i found it really overwhelming, seeing all these tiny babies as big as ballpoint pens. Some of them had immature lungs & were struggling to breathe.

Then when we finally did get to meet my sister, which was down the other end of the icu. She was in an incubator, under lamps for jaundice, She had tape over her eyes, because of the lights, & just lying in there in a nappy, kicking her feet around .

I remember it being a strange, scarey time, as a 10yr old.

Sandi said...

Thank you for allowing us to have a peek into what you guys have been experiencing. I feel like these posts will help me to be more sensitive (at least to TRY to be) to anyone that I know in the future who experiences something similar.

Heidi said...

I agree with what Courtney said. There are all kinds of hormones and feeling that come with any "normal" pregnancy anyway so I can only imaging how intensified those might be under other circumstances but, you are right, we will never know. I cried one night to my husband that I had made a big mistake and that I was not bonding properly with my baby. I read a great book (can't remember title) about the myths of bonding and what you think a parent should feel like. Every experience is different, nothing is normal in my experience.
Losing some babies to multiple miscarriage gave me a little tough skin and I was able to look past people's well meaning or rude remarks.

Thanks for the insight and for sharing your heart with us.

DustyDoodles said...

I totally understand what you are saying, and how you were/are feeling. I am the parent of a preemie born 28 years ago, at the gestational age of 28 weeks and weighing 2.8 lbs. I remember, like it was yesterday feelings of dread when people would ask certain questions or make certain comments that were really meant for someone of a full-term, normal baby. I think my hardests time was finally accepting that my daughter was not going to ever reach the 'normal' milestones at the 'normal' time. She sat up unassisted at 11 months old, walked when she was 20 months old, etc. Today, 28 years later, after being given only a 5% chance of living, she is a school teacher for gifted children. I am very proud, and I was then too -- but I remember.

God Bless you Nate, and Tricia, and baby Gwyneth.

Polka Dot said...

I've always wondered how Tricia handled it. The first few days with a new baby are so important for early bonding. Not that you can't bond, but it does become more difficult. And with her being out and then not being able to see Gwyn for so long, I really did believe it would take longer for her - for you both, really - to truly feel as though Gwyneth is yours. If that makes sense.

Thank you for your candor and honesty.

Ellen said...

Nate, That's an awesome post and really helps me (a member of the outside world who has had little or no experience with premies) have such great insight into how your perspective is different. Thank you for letting us into your world! Praying that the Lord will make up for lost time in the "bonding" department! He is faithful!

colleen4 said...

Thanks you so much for sharing this. You really educated me with these two posts. It was something I wondered about while following your blog through this journey. I truly appreciate your openness.

Joanne said...

I read your other post on this topic and found it very interesting and very real. I can't imagine what it was like for you both but some of the emotions you described, the challenges with bonding and emotions that brings, the missed milestones, etc. are somewhat similar to what we went through as adoptive parents (our son came home at age 5 1/2 months and our daughter at 10 months).
Much of the literature about building attachment with our children also described NICU situations. Know that what you're feeling is very normal (meaning a normal response to abnormal beginnings) and that although you both have the unmistakable, unshakable bond with Gwyneth, true, mature, reciprocal attachment takes time. It will all come together. And it will be different for both you and Tricia, and sometimes one of you may have a more challenging time than the other. If you ever need to "chat" with someone that has "been there, done that" twice now, I'd be happy to share or listen.
God bless you all!

Kimberly said...

I just wanted to thank you for this post. What really struck me was your comment that if you couldn't understand what Tricia was going through you couldn't expect others to understand what you were going through.

I recently had a baby who was injured at birth. I felt very alone as I dealt with his injury, doctors visits, etc. Many well meant comments were really hurtful to me. I just appreciate you making the point that I can't expect someone who has not been here to fully understand.

Thanks.

Sonia said...

This brings back memories from Mothers Day in 2006. My twins were born at 23w0d on April 4, 2006 and we lost our Rachel. Isaac's breathing was getting progressively worse and he was barely hanging onto his life that Mother's Day. I remember how all these people at church greeted me with a big smile on their faces wishing me excitedly, "Congratulations! This is your first Mother's Day! Happy Mother's Day!!!!" My only thought was how can anyone on earth think I can have a Happy Mother's Day with our daughter in heaven and our son fighting for his life in NICU. I ended up having a huge meltdown in NICU much to the nurses' dismay as they couldn't communicate with me (we live in Japan, I don't speak Japanese). Having gone through 8.5 years of infertility, I did not imagine my first Mother's Day to be so horrible. I am not sure if you guys go through this but I would say apart from the issues with bonding, I also felt (and sometimes still feel) tremendous guilt for our twins' premature birth (it was due to my incompetent cervix). I really have to work on focusing back on the Lord to remind me that He was always in control, and that Isaac's and Rachel's journeys not only touched many people but also strengthened my husband's and my faith. I always said, I don't know how anyone without Jesus can get through something like this. I can't imagine for you guys to have to go through Gwyneth's extreme premature birth as well as Tricia's CF, lung transplant and cancer at the same time. Thank goodness you guys have Jesus. I remember people would ask how we did it and I would just say "we hung onto Jesus for our very dear lives"!

Continuing to pray for all three of you.

Kim said...

I guess I never even thought of that. I sincerely apologize if any comment I ever made was insensitive to you or Tricia. Certainly that makes all the sense in the world, just didn't view it from that point. You guys are doing plenty of bonding and cuddling now-praise God!

JennyMarie said...

I did not have the health issues Tricia has had but I too felt a disconnect from my 27 weeker. I was really worried about it at the time and felt like a horrible mother. He is now 2 1/2 and our bond is absolutely incredible. Thanks for letting me know that I wasn't the only one.

Karen said...

Nate, I have been blessed watching your story these last few months. I have expecially enjoyed watching your little girl grow bigger, and bigger.She is a beauty. 35 years ago my little guy was born. That is when I really understoond how important an ounce could be, or the importance of protecting my little guy from well meaning people and germs. Today he serves the Lord full time as a Bible Translator. Thank you for sharing your feelings and your story.

Lauren said...

Nate and family,

Thank you so much for sharing your story. I have been reading your blog for a while now (although I can't remember how I came across it), and I am always inspired by how your family has handled your situation. Your faith in God seems to have only strengthened throughout it all. My husband and I do not have children yet, but I hope we could handle any problems with half the grace your family has!

By the way, thanks for letting the world know about Rita's! I had never heard of it until your blog, but I recently moved to Florida and found one...Tricia has good taste-the gelati is my new favorite treat!

Lauren
Jacksonville, FL

Crystal said...

Well said or written, i guess i should say.

Lynsey said...

Not to remind you to be thankful, because I know that you are in every sense of the word...but just be thankful that after everything you've gone through, everything you've all endured, that the preemie you have is thriving and is the most precious thing in the world! While we are all so fortunate and even flattered that you continue to share your story with us, we still need to remind ourselves of the reality of it all. This is a REAL story regarding REAL people with a REAL disease and a REAL live preemie. We need to respect all feelings involved, and I can only hope I've done that this far with the commenting! I pray for you each day and hope that God continues to work his magic on your family.
Lynsey

Deb said...

Even though it brings me to tears, I so appreciate that you are writing this story. It's so amamzing. I know there was a lot more to it, but the part about the smell sticks with me. A friend had a baby in June last year, when I went to see her I remember smelling her baby's head and saying I couldnt wait to have mine to just smell all the time (since I have a son too- I loved the new baby smell). But then in July when my preemie came, I wasnt allowed to smell her. For so long. And by the time I was, the newborn smell was gone. I kept sniffing her like it was just one day going to work.. it never did. But unless you've been there, you just dont know. Anyways- sorry this is long. And I know there are a million other things that super hard with a preemie- that was just the today's memory.
We are praying that you have a good week with your girls (you know- when you're not working) and await the news (praying for good news) about the Duke visit coming up!

Audrey said...

I think it's awesome that your being so candid. I had a normal, healthy, full-term pregnancy. For my whole life I wanted nothing more than to be a Mama. Then, here came my daughter. Perfect. Gorgeous. Yet a total stranger. It took me nearly 6 weeks to "bond" and probably not until the 5 month mark until I fell head over heals. I thought something was wrong with me and felt awful because no one ever talks about this stuff. I'm in no way comparing my situation to yours. I'm just saying that it takes a lot of courage to talk about the stuff no one talks about.

You must have felt very torn between this beautiful daughter Tricia had prayed so long for and the fact that your wife was so sick. You had only begun to fall in love with Gwyneth. Tricia is like breath to you.

Your family is beautiful and I can "see" that everyday your growing together more and more.

Thank you for allowing us all to be apart of your journey.

Dana said...

nate and tricia, i wanted to give you both huge cyber HUGS!!!!! continue to share your experience with others. unless you've been there you just cannot understand.

you are wonderful and blessed people, and you both continue to inspire me!

have a wonderful baby shower :)
hugs to all of you, especially that beautiful baby!!!
dana

Julie Stanton said...

I'm so sorry about all you've had to go through. I feel really bad because I know I made comments like "Tricia must be so excited..." and other such things. It makes me want to cry that I may have caused either of you more anxiety. I, too, had a preemie baby (not nearly as early though) and I know that it is such a different experience having a sick baby. Please know you are still in my prayers and I check on you every day, several times a day.

K said...

I'm so glad you're sharing this aspect of your parenthood journey. I did wonder how bonding was going for Tricia in the first few months, given the situation, but didn't comment for the very reasons you mentioned. I'm a doula and that helped me to understand enough not to even ask or comment, though I did want to do so.

Debbie said...

Thanks for sharing & being so honest.

WWW.ClayCleanse.Com said...

Your feelings are perfectly normal. I have a friend who had a 25 weeker 20 years ago and to this day she talks about her emotions regarding the NICU. She says she was even jealous of the nurses who were taking care of the baby when she couldn't. She would walk in the NICU and find a nurse being intimate with the baby...feeding, holding, talking to, etc and just cringe.

WWW.ClayCleanse.Com said...

Your feelings are perfectly normal. I have a friend who had a 25 weeker 20 years ago and to this day she talks about her emotions regarding the NICU. She says she was even jealous of the nurses who were taking care of the baby when she couldn't. She would walk in the NICU and find a nurse being intimate with the baby...feeding, holding, talking to, etc and just cringe.

Kristie said...

Again I understand so much of what you wrote. Some times I let it get to me. Most of the time I just feel so blessed to have my daughter in my life and that she is doing so well.

Michelle Jamie said...

Thank you for sharing...I'm learning so much!

amys_a_hoot said...

I remember much of those feelings you are describing although I didn't have a blog I did hear alot of the same type of comments. One in particular was one similar to this: you must have been so excited to get to feed her once the feeding tube was removed" comments like that just depressed me because at the time my thought was "no not really because they had to teach me how to feed her" (Emily had a cleft lip and pallate and had to use a special bottle that wasn't very easy to use at first. But you know it is funny I fed her like that for a year and now when I feed other peoples babies it feels weird because the bottle is not normal to me, wierd how that stuff works the not so normal becomes your normal. You guys are absolutely awesome and I love reading your story I feel like I truly know you guys and you are always in my prayers.

Scott said...

No one will fully comprehend what you have gone through. Even other's with similar experiences are different. All our journeys have common threads but in many ways are unique as well. Thanks for sharing and we are still praying daily for you all.

RoseGirl said...

Nate...

Thank you for sharing and once again being so open and vulnerable. It's sometimes very hard to know what to say or how to encourage on these blogs - particularly when most of us do not personally know you both.

As others have said, I wondered how Tricia was doing with all of the events going on - how all of you were truly coping. There were glimpses that told me that the struggles were much larger than you were letting on (and rightfully so, that you were not sharing them at the time!)

I have not experienced pregnancy or giving birth to a preemie - so I can not relate in that way.

However, I can relate to having very emotional reactions to people's seemingly "innocuous" and "encouraging" comments in the face of a gravely chronic illness.

It is hard to explain to people that some comments - however well meant or intentioned can really hurt and bring tremendous frustration. One of my particular favorites is "you look so good - you MUST be feeling better". Or when someone asks how you are doing and you make the mistake of thinking that they really want to know.

Or the ones that ask how you are doing, you tell them and they say, but at least this "thing" is going well - you MUST be thankful for that. Yeah, I guess I MUST be - thanks for listening.

Anyway, the list could go on and on, as we both know.

I pray that you are both able to continue to see people's true hearts behind their comments (you seem to be doing well at that so far!) and that most here just want everything for you guys to be going so well that they will jump at the chance to "congratulate" you guys on any little positive thing they see or hear about.

Blessings & strength to you all,

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

The Browns said...

Thank you so much for sharing your feelings and emotions about this learning expericene that you 2 have been gping thru and how hard it has been. I can relate a little bit my brother in law adopted twins at birth that had twin to twin transfusion. Carter was born at aroun 2 lbs but wyatt wasnt even 2 lbs. After a couple of weeks carter could go home but still of course being a preemie they had the weeks of nothing but gloves and masks and hour upon end at the hospital day and night. Wyatt the twin that recieved barley any of the nutrients spent about 2-3 months in 2 hospital nicu's with surgerys and many times we thought we would lose him. Today they are doing great, carter is a little behind for his age they will turn 1 Aug 9th, but wyatt is very far behind and of course they are expecting many more problmes to be found as he grows, he cant hear right now and cant really control his body at all but all he does is smile!

I didnt experience it first hand but as an aunt it was extremly hard also to see my little boys fighting each and every day. There are no words to even express how strong you 3 are. I know that those emotions will always be with you from the first 4 months of her life but you guys are so amazing. Thank for you sharing and letting us into your hearts about becoming parents, its amazing and so wonderful to learn and hear about!

The Mazza's Munchkins said...

My baby was born three weeks early. She wasn't breathing and was rushed into the NICU, I couldn't see her for 30 hours, and it was the hardest 30 hours of my life. I still get emotional, 22 months later, just looking at the pitures. I couldn't imagine the 3 weeks that Tricia couldn't even see her, and then couldn't hold her. The one day I left my child behind was a day I don't want to ever do again. I can't imagine leaveing for three weeks that you two did. My heart breaks for all families of preemies.

It made me mad when people compared their babies to mine as far as milestones. I would always say, she will get there when she gets there. If you ask me Preemies are the best picture of God's timing. His timing either comes way too fast (if it 3 weeks early, or 15 weeks early) or it goes way to slow (taking 5 months to give that 1st smile).

Thanks for opening up. Gwyneth has a playmate for life in So. Jersey (my baby Reyna, not to mention all of her cousins)

Kim said...

Thank you so much for sharing your thoughts about this very personal journey!

I never realized how much we assume as outsiders until this... and I want to thank you for enlightning me!

Lauren said...

I forgot to mention in my last comment that because of your blog, my new Florida driver's license will say "organ donor!"

Lauren
Jacksonville, FL

ijk said...

Nate,
I am a neonatologist and I often find myself wondering about the issues you are discussing here. While it is important to celebrate and cherish the lives of these babies, I often feel awkward congratulating parents on the birth of an extremely premature or sick infant (which we are taught to do...). Thanks for sharing your insight; it definitely will help me in my future interactions with our “NICU” families.
I have loved reading your blog ever since I stumbled unto it. Viewing the NICU from a parent’s perspective is always a gift. Thank you.

Beth said...

Thanks for writing your "Confessions of a Preemie Parent." My youngest two children were born right around 32 weeks and were both emergency C/Sections. They were our 5th & 6th children and quite a different experience! I remember the first time I saw them...I thought they were so ugly! How could I, their mother, think that?? I felt badly, but remember thinking that they looked like homely baby birds! As they "fattened" up, they became more loveable and my maternal feelings/instincts kicked in. Another thing was the feeling that b/c I had had a C/Section, I did not actually give birth. I felt like my little ones were "taken from me." I believe this is a common feeling for ladies who have had a c/section. I still have difficulty remembering their exact birth time...no problem with my "normal" deliveries. Thank you for being so honest and transparent.
In Him,
Beth

Beth Johnson said...

One more thing Nate. I had a woman tell me when I was expecting my first child that if I didn't hold my child right away and breast feed then he and I would not bond properly and we would feel that for the rest of our lives. This is a bunch of BUNK! I didn't breast feed and all three of my children went to the nursery and we are very close. So please stop anyone you meet that tells you this sort of thing.

Bonding is a life long experience and it is a wonderful journey, as you know.

Beth Johnson

Cindy said...

Very well said and I totally get it.

Tammy C said...

Thanks for sharing from your point of view.Everyone can be different in their feelings but we can learn from your story to help somebody else.

Anthony's Mommy said...

Nate,

I've commented a couple times before, but I just wanted to say as a micro-preemie parent (26 weeker) I too understand the loss of the "normal" first moments most parents have with their child. I still sit sometimes and think of the things I missed but then I feel guilty for those thoughts because my son is alive!!! And he made it and although our journey was not the norm, or what most parents dream of when they find out they are having a child, I cherish every moment we went through and I think it makes us appreciate and love our children even more. Because we admire where they have been and all they have over come. And I know that you and Tricia will look back on all this some day and give yourselves a pat on the back as well!!! I have only just started to feel proud of myself for what I've been through and how a situation like ours could of broken me but it has made me stronger and a better person. As they say, time heals all wounds.

Kim

Tracy P. said...

Nate, it's very kind of you to think about how the Lord might use these feelings of yours to let someone else know they're not alone, and that somehow there is something normal about their response to their situation. And He will. Our version of that is to tell new parents that in the middle of the night when they are pacing the floor with their fed, diapered, screaming baby and thinking of throwing it out the window, they shouldn't, but many others have felt that way before them. It's not the feeling you expect to have with your precious newborn

You know, you did such a great job of documenting the "firsts" and all the milestones, that it never would have occurred to me that you didn't have the feelings that went along with taking the picture. That will make the pictures all the more precious, because I could imagine that the feelings will continue to catch up with the moments in a way of their own over time.

Twice Blessed said...

Nate, Everyone kept saying to my husband and I "congratulations!" and I was just dumbfounded. This wasn't the way it was supposed to be... Why are they telling us this when we're not even sure if our 25.5 twins will survive? Anyway, it's such a long journey and process that fortunatley, most people don't have to deal with. We felt so disconnected to our "babies under glass". Thanks for sharing this post - I still find it too difficult to write Tate and Reese's birth story.

The Days said...

Thanks so much for sharing your journey with all of your readers. My daughter was a preemie and also has CF. She remained hospitalized for 3 months after her birth. I had health issues that caused me to be hospitalized - therefore my time with her was extremely limited. I felt envious, jealous and even angry because my husband was able to bond with her on a much deeper level than I was. I didn't know how to handle those feelings, and didn't think anyone else would understand. Happily, everything began to change after we brought her home and spent time together as a family. Today, she is 9 years old, and we can't believe how blessed we are to have this incredible gift from God. Please know how much your ability to be "transparent" has meant to countless others. You are continually in our prayers. God Bless you, Tricia and baby Gwyneth.

Sharipoland said...

My son was born at 28 weeks weighing 1pound 12ounces. He and I were both very sick at the time. Although my experience does not even begin to compare with Tricia's, I can remember those very same feelings of detachment.

When my son came home from the hospital it was exciting in one way, but actually quite scary. He still had a multitude of medical issues and it was the first time he was not connected to some sort of monitor. I think it took me about a year until I started relaxing and really began to enjoy him. At that point at lot of his issues were resolving and he was starting to develop a personality.

He is now 17 months (14 months adjusted) and looking back I see how much God developed in me during that time. I don't know how people get through these things without God. Whenever I felt overwhelmed and scared I always knew that He had everything in control and would give me the strength and ability I needed. I truly know the power of prayer. I am so grateful to the tons of people that prayed me through that season (and still do). That is why I now take time and pray for your family. He makes all things work together for good! I know that my son and your daughter have a great destiny ahead for them!

Blessings,
Shari

The Tranas said...

I remember one of the hardest things for me, before we brought Lily home from the hospital, was the fact that she didn't smell like "us" (like her twin sister who was home with us already did, or like her older sister had when she was a baby). When we finally brought her home from the hospital (she was 6 months old by then), it just seemed that she smelled "right."

Those little things mean so much.

Lily was so sick in the NICU at one hospital, and her twin was in the other hospital (connected by tunnel) in the Level 2 nursery. One baby I could hold, and feed, and one baby I could barely touch those first few weeks.

I don't think the babies really feel like they *belong* to you, until you bring them home though, at least that's how it was for me.

Joy said...

Wow, reading your post takes me back to the days when my daughters were born. I was sedated for the delivery as well and I obviously cannot compare to what Tricia has gone through but I do know what it's like to wake up after giving birth not knowing what happened and not even seeing them until after other people have. It was torture! I can also relate to feeling so isolated. For a while when my daughters were little, I felt like I couldn't relate to anyone because a common cold for example to me, meant something entirely different for all of my friends/ family. I am happy to say that I feel like the journey has really made us appreciate our daughters so much more and all of the pain was worth it :-) Gwyneth is beautiful! Enjoy every moment :-)

Mommy Toy said...

I too am a parent to a preemie and I know how difficult it can be. The hardest thing for me to deal with was the fact that I was sedated and had NO idea my daughter was going to be born. (I had to have emergency surgery for ruptured appendix and things went terribly wrong). I was so upset that no one who loved her was awake or in the room when she was born. It took me many months to get over that guilt. It also took me months to connect to my daughter because it was such an odd situation. Me being on a ventilator and her being on one also down the hall prevented us from bonding. Anyway, I just wanted to say that you and Tricia are not alone in your feelings and that they are perfectly normal preemie parent emotions.

Cynthia said...

I couldn't see or hold my daughter for 53 hours after her birth. She was transferred to another hospital after she arrived unexpectedly in a hospital without a NICU. I was devestated and I felt like I was looking at a stranger the first time I saw her. And I felt horrible for feeling that way. I can't even imagine what Trisha - and you - must have gone through. Thank you for sharing your story with such detail.

j&lcirig said...

Nate & Tricia,

Thanks for being so transparent. What you have experienced in Tricia bonding with Gwyneth has got to be so normal. Our daughter delivered and the baby was life starred to a larger hospital. It was a week before mom and daughter reconnected and it took several weeks for bonding to take place. Our daughter had an emergency C-section and complications and was so exhausted when she was able to see the baby that her energy was spent in putting one foot in front of the other just to get dressed to go to the hospital. Dad bonded immediately because he was all the baby had.

It is unbelievable how we, your blog readers, think we know how you feel and show you should respond. Most mean no harm, I'm sure, but have no clue because it is not their journey. Keep being transparent because it lets us know how to pray more effectively.

You continue to be in our prayers in in NW PA.

The Hull Munchkins said...

As much as I sometimes wish I could escape the "preemie" parent title, I know our journey has changed my husband and I forever.
Unfortunately I can sooo relate to your post and the way you described the feelings of isolation, loneliness and sadness that comes with a preemie.

Our daughter was born at 23 weeks and she experienced most of the major preemie complications typically expected. After 6 months in NICU (and 12 surgeries) we couldn't believe we could take her home with us!! She has a lot of special needs today at 4 years old, but she is such a blessing! We have so many opportunities to share about God's love through her struggles.

It's so good to see pictures of Gwyneth and feel encouraged by her story and your incredible wife!! Your family has been through so much and continue to weather the storm with such grace and perseverance.

Thank you for keeping all of us "fellow preemie parents" updated on your sweet little family.

-patty

fuzzandfuzzlet said...

Nate,

Thanks for sharing such personal details of your "bonding" (for lack of a better word) process.

I think part of the reason many of us sent responses about how thrilled you must be etc are because you have an amazing ability to realize the blessing despite the stumbling blocks. Every post radiated love for the miracles in your life. Every post showed how thankful you were for the milestone. Your positive attitude shines in every single post you put out there.



There is not a post about Gw

Brenna Kate said...

I think women who had challenging birth experiences can also relate on some level. There are all sorts of reasonsbnding can be delayed.

Janet said...

Nate, My granddaughter was a micropreemie at 23wk,2days, and I was so very afraid of how fragile she was that I couldn't even bring myself to hold her until she was safe at home. She went home on oxygen, and had to stay home for nearly 8 months before she could be taken out in public.  I became her only babysitter during that time and we made up for lost time with our bonding. Our relationship has been incredible ever since! She is becoming a very independent 2 years old, but we still enjoy our special bond.  God made her so patient and forgiving with us all, I truely believe He must have added that in with her strong will to survive.  Your Gwnyth has that same strength, and your regrets will soon fade as your bond grows stronger. My best to the three of you.  You remain constantly in my prayers.

ijmartin said...

hey... not sure how i found your blog really! but, it is very encouraging. my husband and i had been married almost 3 years and i also went into preterm labor at 29 weeks and our son was born 5 days later! we praise the Lord that we have a precious boy, one year on july 2nd, and the preemie road is a very unique one and we found that people just didnt know what to say, which meant that they inevitably said something that either hurt us, or made situations awkward and uncomfortable... but thankfully, the Lord gave us the grace to stand firm in Him. We were so encouraged by the fact that God never sleeps (psalm 121) and knowing that while we rested, our son, cade james, was being watched over by our all-knowin, all-wise God. Thank you for sharing the details of your journey. Though I do not know you, i pray for you...
~julie martin
http://web.mac.com/ianandjulie

Catherine said...

So well written! I commented on your last preemie parent post and that I couldn't agree more and I would say the same thing again this time. You have done a great job of describing what so many people go through yet so few people seem to understand (since they haven't been there of course). I remember being so upset when people would make comments about how happy I should be that my premature daughter was alive, well of course that was obvious so I didn't feel like someone needed to remind me of that because at the time I was grieving even though my daughter survived. I was grieving the loss of a normal birth experience, the bonding that should happen after birth, getting to hold my daughter whenever I wanted WITHOUT things beeping, the loss of being the "parent" in the NICU, the loss of the connection I felt I should have had with my daughter and so much more. I was constantly flooded with emotions of guilt brought on very often by someone's comments. I know that people meant well but at the moment for my experience it just didn't seem appropriate to me. Anyway, I say all that to once again thank you for sharing your story. It's a story that inspires and moves people to think beyond their own experiences. Reading your blog allows others to "experience" your experience. For the other preemie parents who haven't gotten the chance or the right words, thank you for sharing!