Feb
22
2012

What it is like to have an early baby

Aeva - 1 day old

NOTE: Other than grammatical errors, this post was originally written three years ago, the week Aeva came home from 92 days in the NICU. An update is included at the end.

My husband had posted all of my Facebook notes that were written from the NICU as everyone requested updates on Aeva’s progress. A popular question, with which I still have a hard time dealing with, was, “how are you doing?” I don’t think I’ve ever honestly answered that question to any one other than Anthony.

There is no way to describe what it feels like to have an early baby. No pregnant woman ever contemplates the “what if” of preterm labor and birth, or complications. No one tells you of them. Sitting in the exam room of my OBGYN’s office, of what I thought was a normal appointment, and hearing him as k “how far along is she,” after I failed my urine test was a less than stellar feeling. He came in put me on bed rest, effective immediately following further testing at the neighboring hospital. There was no questioning this, I knew it was bad. When the tests came back so terribly that he sent me to Vanderbilt University down in Nashville because our hospital was ill equipped to handle 30 week babies, it was worse. Getting steroid shots in hopes to aid lung maturity means business, and that there’s a baby coming soon.

I was determined not to have a baby that night.

I held out four days…2 steroid shots…3 ultrasounds…many blood tests…and 4 days in a bed…until the anastesiologist walked in and said “just in case, is now, now.” My husband had gone home to do somethings, and luckily was on his way back, because I was being prepped for surgery. I had a lovely dose of toxemia, meaning my kidney and liver were rejecting the pregnancy, producing enzymes which in turn made my heart work harder than needed. Now called pre-eclampsia, the condition effects 1 in 8 pregnancies. Pre-eclampsia is characterized by high maternal blood pressure, water retention, and protein in the urine. A complication of this is called HELLP syndrome (hemolysis, elevated liver enzymes, and low platelet count), makes this all so very worse. I got both, and with rapid onset.

It was a baby or me situation, and for it to be the both of us, baby needed to be delivered NOW. And NOW means NOW in the labor and delivery wing. I rolled over and I don’t think I’ve ever cried so hard before in my life.There was no way that this baby in my tummy could come now. It just wasn’t time.

There’s the feeling of fear. Fearful that she won’t be okay…or that something is wrong with not just me, but with her. Fearful that even a c-section birth would be too stressful on her. Fearful that though the neonatologist said that babies born at that gestational age (30 weeks) have a 97% survival rate…that she wouldn’t survive. They were worried about her because she was small…would be be too small to survive? Would she be underdeveloped? There’s the fear that your husband would hate you for not carrying his baby to term. Fearful that he’d think you did something wrong to make this happen. Fearful that he thinks it’s your fault. Fearful he’d just hate you.

Luckily, baby girl dumbfounded the doctors in her extreme healthy despite her very low birth weight. And luckily, Anthony didn’t find it to be anyone’s fault.

Anthony and I had a few choices of names picked…and it was this moment that I knew which one I wanted it to be. I wanted Aeva because it was strong name. AEVA RENDINA. So strong. Strong was what she was going to have to be right then when she was going to come out, and through the next few weeks through the rollercoaster of the NICU. Jaqueline came from my Aunt Jackie who was full of piss and vinegar. Also strong. Aunt Jackie was a strong, strong woman. This baby was going to need to be strong and have an attitude. Aeva Jaqueline Rendina. AJR. Her Daddy’s initials. A strong man. This baby was going to need all the strength she could get.

I had an amazing anastesiologist who calmed me down…at least enough that he could give me the epidural…which in itself is a weird feeling. Not having sensation from bra-line down, but feeling the tugging of a baby being taken (not delivered, but taken) from your body is….well…hurtful. You literally feel empty inside when it comes out. You’ve come to know and love this little person growing inside of you as a part of you…and when it’s taken from you…you’re literally empty. What seemed like forever later, the baby made a sound, which at that time sounded like a kitten rather than a baby…the best sound in the whole entire universe. This early baby made a sound.

Not wanting her to be alone, I sent her dad out of the operating room to be with her…I’m a big girl and can handle being alone…this baby was taken from its warm home and thrown into the terrifying world of a hospital of all places, without first being held and loved by her mommy or daddy…she needed her Daddy as close as possible…

I didn’t get to see the baby for 24 hours….I was on anti-seizure medication again and didnt get to see her until the next night.

The night Naomi met her daughter for the first time!

If there is anything in the world that just makes your heart sink…your stomach churn…your eyes water…and your mind go crazy..it’s seeing that baby that you’ve felt moving in your womb…out into the world so little…so thin..so helpless…so peaceful…with tubes and iv lines…

I didn’t see her when she had the breathing tube in (thankfully)..she only had it for 4 hours…

There’s that feeling when you first know that you can finally go see her that’s bittersweet…overjoyed that you can FINALLY see your little baby…and that feeling like you don’t want to see her because it’s your fault…There’s nothing to say to anyone when you have to look through the plexi-glass of an incubator to see your baby…or ask permission of a NURSE to touch YOUR baby…or the feeling when you first hold them…the feeling of relief that she’s okay and she’s made it this far…but the feeling that it’s your fault…the only thing to say to her at this point is, “Hi, I’m your mommy…I’m sorry.”

I’m sorry is all I could really say for a long time. I’m sorry. I’m sorry. I’m sorry. I’m sorry that you’re here so early. I’m sorry that I got sick. I’m sorry that if it came to “you or I” that they picked both of us…they should have picked you. I’m sorry I couldn’t give you the home you needed to grow in inside of me. I’m sorry you have to finish maturing in a plexiglass cage…I’m just sorry.

This is when we finalized her name, and that her birth certificate and incubator tag got a name. She looked like an Aeva. She looked strong. She didn’t look like what you would think a preemie would. She didn’t look sick. She looked strong. She was Aeva Jaqueline Rendina.

Part of it was adjusting to blood pressure medication. but when I’d see her for the first week or so, I’d get really hot, and faint, and would need to sit. The overwhelming feeling of guilt and pain (physically from the c-section, emotionally from this “journey”) just hurt. We couldn’t hold her and tell her everything was going to be okay. Honestly, we didn’t know yet if everything WAS going to be okay.

The only thing we could do was to pull up a chair and sit. Sit there and stare at her. Be there for moral support. Talk to each other, talk to to nurses…talk to her through her incubator (also called an isolette) so that she learned who we were from or voices.

When a preemie is first born, and for some time after, the only way to touch him/her is to put your hand on the soles of their feet, and to cup their head. Stroking a preemie like you would a “normal” (the PC term for this is to call them a term baby)baby is too much stimulation, and isn’t optimal for them. Aeva learned affection, love, and security through this.

The sleepless nights thinking of how she is doing…the eagerness to be next to her even though we couldn’t touch her…there are no words for it. For a while, she went through what we (NICU veterans) call a “spell.” A spell is a bradycardia (decrease in heartbeat) and apnea (forgetting to breathe) episode. Essentially, when she turns blue. At first they are the most traumatic thing post c-section. The first time you see your baby turn blue because they are so small and early that they haven’t learned to self regulate….is…well…heart wrenching. The good news is, is that the bigger they get, the less often they happen, and the more used to them you become. It gets to the point that spells don’t phase you, and how to stimulate her to breathe again is second nature. The beeps and alarms of the NICU become normal, and you can tell what each one means by it differing tone. The higher pitched and faster it is, the worse the reason.

The guilt of thinking that it was my fault she was born early never went away. It got better, but it didn’t go away. Consciously, I know it wasn’t my fault. But as a mother, there is nothing else to say or think than it was MY fault. It was MY responsibility to give her the right enviornment to grow in…MY responsibility to be healthy and keep her warm and comfortable inside so that she’d grow. But somewhere, the universe thought differently. Only 2-8% of women experiece toxemia (preeclampsia) in their pregnancies, and even fewer of that experience HELLP, a complication of the complication. I got both. I got it bad. Somewhere I pissed off the pregnancy goddess and she got her revenge.

There’s the anger feeling…being angry that some women don’t even WANT kids, and have ACCIDENTAL pregnancies, and carry their babies to term. How come I wanted nothing more than to have a baby and experience birth, and I had to get the short end of the stick. I took care of myself. Perfectly. I excersised. I ate well. I took my vitamins. I still got the short end of the stick. I only had gained 10lbs at 20weeks pregnant. At 30 weeks, 1 day, I had gained 37lbs. In the 48 hours I lost 20 of it. Water weight. I never looked pregnant. I looked like I was getting chubby. Never pregnant. Never really had a belly. I could still see my toes. I never really felt her move. She didn’t move often. (Turns out she was breech and I only felt her back) The first time I felt her have the hiccups was the day that I was admitted to the hospital. The doctor was happy to see her “practicing” breathing en utero…it meant she had a good survival chance.

There’s denial…the daily thought that “today’s not the day. I can make it another one. I’m NOT having a baby today.” But honestly, it’s just denying the fact that it literally is a 15 minute by 15 minute wait…when my blood pressure was taken it was just the matter of how high was it. Was it high, but low enough to let me relax and try to hold out…or was it high and was just high. The anxiety of needing to know what my blood pressure was probably never helped. There’s the denial post-“birth.” Not wanting pictures to be taken of her. Not wanting too see the ones that were taken. Not wanting to see that the fact that she was soooo little was immortalized for all of posterity to see. Why would anyone WANT to remember her so little…

There are those moments that the only thing to do is to curl up and cry. Just cry. Not even say anything. Just let it all out. I had to stay calm to try to keep my blood pressure down that there were so so so so many tears built up. They came out over the following weeks.

Then there’s that moment when all that stops. It’s the moment that being a mommy kicks in. It’s the moment that those selfish feelings are put aside…and the only feeling left, is the feeling that says to do whatever you have to do to help her. When you watch a baby in a pure survival mode it’s all you can do…it’s the feeling that if she’s doing what she has to do to survive…then the only thing I can do is put aside my thoughts and do what I need to do to help her to make the struggle just a little easier on her.

In those early days, it meant talking. Letting her hear our voices. It meant eating well so that the breastmilk was nutritious. It meant pumping as much milk as possible because breastmilk was her key to success. It meant taking each day as it came…just like she did…And the hardest one was…it meant not holding her. Holding her stimulated her. It made her burn precious calories that she needed to grow…to regulate her own temperature…to make blood, fat and everything else she needed. It meant out of 1440 minutes in a day…we held her 20. She learned to love us by us doing her care…taking her temperature…changing her diaper..taking care of her umbilical cord…

There is the rollercoaster ride of the NICU…sometimes everything goes well…and then all of a sudden, there’s a step backwards. Indeed, it was a rollercoaster.

But then there’s the triumphant feeling of leaving. Of putting her in the car seat and rushing the nurse through the discharge information…and then walking out that door. For so long we’d watched people take babies out of the hospital while we were bringing stuff in…today was the day that we weren’t taking anything IN. We walked OUT. Healthy. Together. Triumphant over the horrifying NICU. We beat it. We made it through it. Most importantly, AEVA made it. SHE fought each and every day to make it. We just were there for moral support.

I’ll never accept the fact that she was born early. I’ll never believe you when you tell me it wasn’t my fault. I’ll never be able to get frustrated with her for things that aren’t her fault, and that are just from prematurity. It’s hard to not get frustrated when she throws up all the time..or when she doesn’t do something “right.” The only thought that goes through my mind when frustration starts to…is that its not her fault. She’s doing everything the best that she knows how to. If she was a term baby, she’d know how to better. It’s not her fault that she has to work just a little harder to do some things. And it’s definately not her fault she was born early.

I don’t like pregnant women right now. I’m jealous. I HATE hearing pregnant women complain about how fat they are, or how scared of labor they are…how how it hurts when the baby pushes into their ribs. Shut up. Some of us never got any of that. Some of us never got to be “pregnant.” (The big ‘ol fat kind where you can’t see your toes or when you need help standing up from a chair.” Some of us WISH we couldnt lose tthe baby weight…it means that we were pregnant. So those of you who are, or know people who are pregnant, make sure you know that pregnancy is a sacred time. It’s beautiful.

There’s that moment when you get to come home and prepare for homecoming…to nest..finally…that’s like nothing else. It’s what having a baby SHOULD feel like. Exciting. Happy. Anxiety. Wanting everything to be perfect. There’re those moment when you’re so tired from not sleeping that all you want to do is sleep…but all you CAN do it stare at her…wondering how could such a little girl have gone through so much already. Anthony and I didn’t survive the NICU. We aren’t veterans. Aeva is. SHE did that. Aeva made it through the NICU.

There’s that feeling of running your finger over your c-section scar. The scar that reminds you daily of what happened. There’s no forgetting this. There’s no forgetting that Aeva was born early under an emergency circumstance. There’s a 5 inch scar reminding me every. single. day. Everyday. Every time I shower, I see it. I see the place that Aeva was taken from…the place they opened up to see her little tushy staring up at them…Being butt first was her little way of telling the doctors to “kiss my ass.” πŸ™‚ There’s the tingly sensation around the scar from nerves regrowing…its the feeling of being empty…of knowing she was taken from there…

Then there’s relief. Relief knowing that the little girl laying on my chest is healthy. She’s HEALTHY. She defied all odds and is healthy. She’s not delayed in any way; she’s met all milestones thusfar. She’s a strong little girl. There is no strength in the world that surpasses that of child who has survived the NICU. Watch out world, Aeva’s here.

UPDATE: Aeva turned 3 two weeks ago. She is full of personality, highly intelligent (and I’m not biased on that), and shows little signs of being premature. She’s very, very, small for her age. She’s 21lbs, and 34 inches tall. She has overcome hip dysplasia, feeding problems, texture and oral aversions, delayed speech, and mild developmental delay. At 3, she tests 100% on target, if not AHEAD for her age! She has hypothyroidism and growth issues, but undetermined if related to prematurity. She talks, has personality, and is very strong willed, vivacious, little girl. She never stops moving! She is in gymnastics, preschool, and LOVES to play! Aeva has an amazing imagination, and loves caring for babies. Medical care for her is preventative, and for the most part, she can say she kicked prematurity in the butt! She is THE cutest little girl ever, and I am STILL so VERY proud of her. She is my love, my life, my everything. Most importantly, she is my HERO.

 

28 Comments + Add Comment

  • I was wondering where exactly yall are from? I had my preemie (30W1D) at Centennial Women’s in Nashville and He was later Transferred to Vandy. We spent a total of 8 weeks stuck in I-Pod there. Anyway I want to thank you for writing this you hit the nail right on the head about all of the feelings I ahve had over the last year. Esp. the guilt. Thank You!

    • Hi Heather! We lived in Clarksville when she was born….we now live up the road in Oak Grove, Kentucky. We spent 28 days in Stahlman NICU in Vandy’s main hospital, and then 8ish weeks in Pod-A in Children’s. We never were over on the high side in pods B-I. Where are you located?

  • I love your post! I had a very similar situation, our twins were born at 32 weeks, the day I was diagnosed with pre-eclampsia and HELLP. It was all at once – my BP was 185/122, labs came back – my kidneys were failing and I wa heading into liver failure – then they announced, ‘you’re having babies at 5″. The rest got blurry, as they talked about survival rates.

    The twins are happy and healthy – just turned 5 πŸ™‚

    I relate so very much to hating pregnant women – I still get pi**** off when I hear them complain, I’d have given anything to give birth – sorry, but the fierce reality of an emergency c-section isn’t giving birth.

    Anyhow, I just wanted to say how much it meant to read this πŸ™‚

  • This is just like my story. I got HELLP at 28 weeks, same routine OB visit (I thought) then wisked away in a wheelchair to the hospital. I held off 4 days and was induced (which on mag was hell and I made them stop after 8 hours) to have Csection. Nolan was born at 29 weeks. He was discharged from the NICU on Dec 26, 2011 and we made it 10 minutes from the hosital when he stopped breathing. I did CPR all the way back to the hospital. That landed him 2 more weeks in the NICU. He spent a total of 76 days in the NICU. Not that I want you to feel guilty but it helps me knowing I am not the only one feeling that way. 3 days ago he got his first cold. I have to go back to work next week and I took him to daycare 1 time and now he is sick. Last night as I had to put his oxygen back on to keep his stats up I broke down again. Not that they even went away but I think I hid them inside. All of a sudden they are all back. Its my fault he is a preemie and now its my fault he is sick. I wish I was in the position where I didnt have to work but I do and I hate it. I hope these feelings get easier because its killing me inside. The one job I had I couldnt do. I failed. All he needed was a safe place to grow and I couldnt even give him that. Im glad I am not the only one who feels this guilt. Thank you for your story. Its nice to know someone else understands my pain. When everyone else in this world says “oh its not your fault” when it really is.

  • Thank you SO much for writing this!! They are all the same things I ever felt, but was never able to sit down and write them out. My son was born at 29 weeks, due to placental abruption and just turned 3 in January. I hesitate to say it, because everyone’s journey is very different, but you and I have had very similar experiences. People who have never been there, try to understand, but just could never fully get the magnitude of what it’s like. So happy to hear that your sweet daughter is doing so well and and very few delays from being premature. My son is also caught up to where he should be and we couldn’t be happier. Bless you and your family!

  • I cant stop crying. the words that i have never been able to say are there to read. thank you so much i am not alone with those thoughts x x

  • This is beautifully written! Thank you for sharing as it always helps to know that I am not alone in theses emotions.

  • Being a preemie myself I can’t say i understand how any of you Ladies feel but it drives me INSANE when people complain about being pregnant and wanting their precious little miracles out!! I could scream!! This story as well as any that I read bring tears to my eyes…I just want you to know that I pray everyday for all preemies out there! πŸ™‚ XO

  • I had a 24 weeker (who had an 8% chance to live) who just turned 3 on feb 5th. I also had HELLP and pre-eclampsia everything you said rings so true because we did it too. Thanks for putting this out there do that people whose babies were delivered at term can understand what it means to be a preemie mom. Sometimes it’s really hard and sometimes I just sit back and think of all the blessings. Either way I get to hold my miricle baby everyday. Thanks for your post!

    • Aeva’s birthday is Feb 5, too!!! <3

  • I cried all during your story because I lived it 29 years ago…except I was not blessed to bring home my daughter. I had severe pre-eclampsia, a placental abruption, and my daughter was stillborn at 35.5 weeks gestation. To this day, I blame myself for failing to bring her safely into this world. Even though I know I could not have done anything differently, my mother’s heart says I should have done something, anything. I was so close to stroking out, and it took months to stabilize my pressure. Looking back, I am amazed that I survived. After that, I found a high-risk OB who delivered my son in 1984 and then a daughter in 1987. That daughter delivered her son at 32 weeks (because of pre-eclampsia) and that whole experience took me back to mine. I knew then how my mother felt, watching me struggle and praying for a miracle. God bless all the moms of preemies and special-needs babies!

  • This is the best post ive ever read. You described everything to a T!! The main differences in our stories is that our JoJo was a 32 weeker @ 2lbs 15ozs. He spent a month in the NICU. Hes currently 10 months old and 21lbs (the boy likes to eat :)). I wasnt allowed to see him until day 3 though πŸ™ and I dont remember much of anything the day he was born or the day after. I was blacked out a lot thanks to the high BP, Hellp and detached placenta. Thank you so much for posting this! And yes God bless all the preemies and their hard working parents!

  • I have 2 premies due to severe preeclampsia. My oldest, Lucas, just turned 5, 4/06, and healthy, very healthy. I truly thank God for that. He was born at 35 weeks, 4lb 8oz. His lungs were GREAT, his eating was awful. That was the worst of it for us and him. My youngest, Jacob, just turned 2, 04/10, and was something entirely different. I had been admitted and lasted 5 days with a blinding migraine. I had been told by the perinatologist that if my migraine didn’t respond to medication I would need to deliver. It was the weekend and I had to beg the on-call, who was not familiar with my case to let me have him, after he reviewed my case he agreed without hesitation. I think I will be forever haunted by that decision. My husband was gone and unreachable, ushering my oldest to family 3hours away, as I getting prepped for my c-section. I thought I was doing the right thing for both of us, my baby and I, but I fear I was just being selfish. My husband arrived just as Jacob was being born and RAN to the nicu with the nurses. I didn’t see him or hear him. I was crying for information. In the recovery room my husband told me that Jacob was big, 5lbs 2oz, but his lungs didn’t mature. He was intubated for 24hrs, I was not allowed to even touch him. After 4 days without any progress they found a large hole in his heart. I never cried, not once during the whole ordeal to be strong for him. He has been hospitalized 2 more times in his short 2 years, and is always sick. I pray that someday God will forgive me as I try to be a better parent, but nothing I do will ever change that one decision.

  • My heart was so full after reading this. Nearly 31 years ago I gave birth to a 2 lb. 13 oz. baby boy. The NICU unit at our hospital in Michigan was amazing and the NICU doctor was comforting along with my OBGYN. I was given a drug the rapidlly develope our baby’s lungs and it wasn’t FDA approve yet (and wasn’t apporved until our son was 10 years old). There were so many fears and so many blessings but very little support from others that had gone through this experience. My mother bought doll cloths for our son to wear home from the hospital. Congratulations on your business and the support, compassion and love you show to others. My son Christopher is now married and has a 9 month old boy of his own. I was often asked if he had a hard time in school and questions of that sorts. He was a National Honor Society member and is now Director of Store Operations for a business in Honolulu Hawaii. I am going to pray for you and your family as your child grows and matures. You will touch many lives by your story. Sincerely, Pam Wright

  • By the way, we live in Bothell, Washington.

  • I loved this post!! I cried & smiled & agreed with it all!! My little peanut was 31wks 2lbs 10oz she spent a little under a mth in nicu so we were lucky she thrived πŸ™‚ def feel the guilt bc now I can no longer have kids bc I went into pre-e & acute renal failure πŸ™ she on the other hand healthy as a horse had some reflux but we’re working on cereal now!! πŸ™‚

  • My first born, my son Aeron, was just another positive test after 4 miscarriages….I NEVER thought he would make it past 15-16 weeks of pregnancy….and then he did, he was 2 weeks overdue and I was HUGE! I didnt care! I WAS HAVING A BABY! but I was terrified again because my mother lost her first 4 after birth, due to not fault of her own, so I never bought anything for the baby, no crib or baby clothes, nothing to remind me if I came home empty handed and crushed. I went into labor, my water broke and still nothing, no progression after 2 centimeters…pitocin for 12 more hours, all I did was vomit and run to the bathroom…finally a doctor walked in and said “we are considering a c-section” I jumped out of the bed, grabed my I.V. bag and said “which way is the O.R. lets do this!” an hour later I was on the table, arms strapped down when I felt everything fade away, I was coding…dying on he table with my baby still inside, suddenly I felt more pain than I had ever expierienced before, I was shocked back and going from ‘death’ back to ‘life’ is PAINFULLY SHOCKING (ha, that was an unitentional pun) and all I could think was WHERE IS THE BABY!!!!PLEASE SAY YOU SAVED HIM FIRST!!!! they were quicky cutting me open yelling at each other to get my rib cage out of the way, two more doctors had appeared while I was breifly lost to darkness and a frantic surgery was taking place behind the curtain blocking my view. My mom walked in as the were pulling him out feet first and she snapped a photo of one foot sticking out of my incision and four people huddled over my abdomen pushing pulling tugging and yelling for the nurses to call the nicu, and then I felt the emptyness…no crying…then a nurse rushed past me out of the room with my son and a clamp still dangling from a hastily cut cord. words couldnt describe, but many of you know that feeling, what is happing to my baby????? so many thoughts, so fast, so confusing….they took their time closing me up and rolled me into a regular room on the L&D floor….I asked what was happening and the nurse simply asked me to sign a form saying they could make decisions without my presence, my mom wasnt even there, she later told me that I had screamed ‘FOLLOW THEM!’ when the nurse took Aeron away without pausing to let me see his face, I still dont know exactly what happened that day but three hours later a baby boy was rolled into my room and I met my son! later after the shock wore off and I felt a little more comfortable and finally put him back in his bed (of course I had my mother take him out so I could hold him my legs were still numb from the block) I looked at his time of birth on a form…he had 3 birth times, 3:15, 3:19 and 3:23…we later had 3:22 put on the certificate because I thought it was better than the others but it didnt really matter because I had my baby boy, and when I brought him home from the hospital just 3 days later I didnt let another person hold him until he was 5 months old,even then my mother had to pry him from me πŸ™‚

  • btw , I know that was not a preemie story, but I just wanted you to know that I took no moment of it for granted, and then when my neice was born at 32 weeks and her mother ( my sister) died I took her as a little angel and to this day watch her like a hawk…she is 2 1/2 and wayyyyyyyyyyyyyyyyyyyy ahead of the term kids in her family !

  • Thank you for writing this. My best friend just went through the exact same thing, and your insight really helps me better understand what she just went through. What she’s still going through. I feel like I can better help her now. Thank you again…

  • So well written. My daughter was born, because of pre-eclampsia, at 26wks, 5 days. She arrived a whopping 1 lb, 7 1/2 oz. I too went to a routine prenatal and didn’t “go home” for 100 days. Our NICU was 102 miles round trip, but everyday I visited, held her skin-to-skin…she is now nearly 9 months old. We’re so blessed, no more oxygen or apnea monitors, feeding issues are only minor. She’s a happy, healthy, social little thing. Thank you for sharing–in some small way it helps to know we all did and do live with the same experiences.

  • I couldn’t help but tell you how much this touched me. Our little girl wanted to meet her mommy and daddy at 23 weeks but we managed to convince her to stay until 25 weeks. The feelings you express are REAL, they are very much so some of the same emotions I have struggled with since she was born and still do. We are currently still visiting our little miracle in the nicu 70ish miles from our home and hopefully after are almost 3 month journey we are on our way home. I couldn’t begin to thank god enough for our little miracle girl, but I do somedays wonder why did we get dealt these cards? What did I do SO wrong that I had to hurt so bad being a first time momma? Why couldn’t I have just had the normal experience that a first time mother should have?

    This blog post couldn’t have came at a better time. Thank you SO much for posting your feelings and showing them raw and true.

  • I cried reading this. At 28 weeks, I went into pre-term labor but it was successfully stopped. And then at 32 weeks we were back in the hospital and released once again. My girl is still cooking so I know I can’t completely relate but in so many ways I do. I get so mad at the women who hate being pregnant, who can’t wait until they deliver, who don’t take care of themselves during their pregnancy. I feel so guilty for putting her through this and I wish there was something I could do to make it alright for her and I can’t. And it breaks my heart everyday knowing that she could come at any time and not be ready. I feel so alone because nobody I know has ever gone through this. So far I’ve gotten no explanation as to why I’ve been in pre-term labor and it’s so frustrating because nothing anyone says will ever make me feel like this isn’t my fault.

  • I felt and still feel every one of these emotions either currently or at one point in time. You express feelings that I hadn’t been able to verbalized, so thank you!

  • You have me in tears. Your story is so incredibly similar to mine, I felt as if I were reading my own story of our Hannah’s start. Pre-eclampsia, HELLP, the feeling of failure, helplessness, emptiness, anger, frustration, hope, and – as I watch her play with blocks and dance around the living room to The Jackson 5 – the feeling of overwhelming love and thankfulness. Thank you so much for sharing your story. It’s nice to know there are mothers out there who have been through this, have come out stronger for it, and that we are not alone in this fight for our wonderful kids.

  • All I can do is echo the comments from above – this is exactly my story, too! My post NICU PTSD has definitely improved, but the two biggest things that get me with this story, that I can identify with the most, are the part about our preemies being “TAKEN” out of us, not “delivered” – my son was a 29 weeker due to pre-e and HELLP also. And the part about the c-section scar and how it is a constant reminder of everything we went through.

  • thank you soooo much for writing this! this is also my story my son was also born at 30 weeks a whopping 1 lbs 15 oz. due to severe pre-eclampsia I feel the same way about c section he was ripped from me like i wasnt good enough! to mak e matters worse i have a 3 year old son who was born 5 days over due wieghing in at 9lbs 7 oz vaginal delivery! so it made it even worse knowing i could handle that pregnancy but this one i couldn’t. I hate these pregnant women now who get to carry thier babies to term constantly complaining about this beautiful and sacred expirence! i just want to slap them in the face! they dont know how it feels to have your child TAKEN from you! thank you so much for this post i now have words to how i feel! My son survived 69 days in the NICU he is now 3 mos old today 3 weeks adjusted! doing wonderfully 7 lbs 4 oz now still has an ng tube in but taking 85% of his bottles!! thank you i have no words to express my gratitude!

  • My daughter had her first baby at 30W3D. Also had immediate onset preeclampsia and HELLP. I thought I had a good idea of what she was going through…but your post quickly slammed that idea out of my head! Thank you Naomi for verbalizing what my little girl was/is feeling…I wept throughout your blog, and bawled after reading Sarah’s comment. I texted my daughter to have her read this. She and I would sure love to read a blog post about HOW and WHEN someone emotionally heals from this. When do you stop feeling the guilt and anger (and hate)….and are just able to go forward? What helps??

    • Hi, Susan! Thank you for your comments. You’re more than welcome to email me at naomirendina@yahoo.com, and I can send more information, or stories to help you through your journey. I can try to put out a new blog for Julie.

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