Tuesday, October 18, 2011

Domestic Enemies of the Preemie Mom

This guest post comes to you from our VERY DEAR FRIEND Mandy. You might also know her as one of the team leaders from our Spark Team. Kate & I have an unnatural fondness for the women who run the Rants from Mommyland Team on Spark.  They are ...  amazing

Here's a little more about our beloved Mandy and her take on the enemies that moms of preemies deal with. Read more from her at: http://mandaroo-misinformed.blogspot.com/ 

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KateInMichigan wrote me a bio. "Manda is a snarky beeyotch who writes a blog about how she deals with her world. She's got a baby boy who earned his nickname "Edible," and it's a good thing that her mom is awesome because she really got the short end of the stick when it comes to the rest of her relatives. She's also a horse dork who will spew random horse facts at you when she's nervous."

When I had my baby, I wasn't expecting a preemie. I know, I know, most people don't expect to have a preemie. It just happens, for whatever reason. My doctor and I thought I was 41 weeks along, my baby had been in and out of fetal distress for a week or so, and the doctors decided to induce me. After a 20 hour labor that ended in a C-Section, I had a 4 pound 9 ounce baby boy.

He was whisked to the NICU and only had to stay a week. I know some moms are in there for months. So that’s why I'm writing this from my experience and also from my mother’s. My littlest sister (who is now 8) was born 3 months premature.

1. Other moms. I've had more insensitive comments from other moms then ANY other group of people. Surely not always on purpose, yet at times I’ve had to wonder... At a mom's group I visited one mom just flat out asked me if I smoked during my pregnancy. Nope. Not ever. (Had she smoked some crack right before she asked me that?) A friend who had her baby a week after me asks every time I post my child’s current weight "Aren't you feeding that kid?" That is so what you want to hear when your life revolves on those numbers on the scale. Thanks so much for being so encouraging and uplifting (and by that I mean I’m feeling encouraged to un-friend you and lift your thoughtless self up in prayer). Another mom at the La Leche League meeting listened to my story and then leaned forward, put her hand on my knee, and said in her best social worker voice, "You know, inductions cause fetal distress." (Thanks lady. I’ll be sure to use you for my OB the next time I have a baby. What? You’re not a doctor? Oh, well then suck it, Judgey.)

2. In-laws. My MIL was wonderful at distracting me from my anxiety in the NICU by embarrassing me to death. She would drone on and on about my son’s stats to a working mom who’d become a 3 month NCIU veteran before having the misfortune of occupying the space next to ours, and she never once let the poor woman share anything about her own child or their family’s struggles. When she was unable to shower our NICU neighbor with this kind of attention, I was treated to nit-picking of my diet while pregnant, speculation that I must have been drinking, and the brilliant theory that I hadn’t been walking enough.

3. The hospital. The NICU is a horrible and wonderful place. I've heard different opinions, but my experience with the staff was good. That being said, there is no escaping the fact that the stress and doubt and fear in that area of the hospital is so thick that it’s hard to forget where you are. Everything about the environment smothers and oppresses you with reminders that SOMETHING’S VERY WRONG. After delivering a preemie and being immersed in that, the preemie mom is then treated to a bizarre and paradoxical experience: being discharged from the hospital as if nothing out of the ordinary is going on. When you have a baby who has to stay while you have to go home, you just leave like a regular patient. My mother remembers how strange and wrong it felt when she left. She carried her own bags and stood in front of the hospital for a minute watching another woman get wheeled out with her new baby and family and a nurse. And all she got to take home was a polaroid of her baby and a heart full of doubt.

4. Old ladies. Old ladies like to stick their fingers in the mouths of all babies, I've found. You know, to feel them suck. You have to be all kinds of ninja to catch these old biddies; they are ready to sneak one of those yellow-nailed fingers right in your kiddo’s mouth before you can smack them with your diaper bag. You would think they'd know better.

5. Doctors. As your preemie gets older, there will be health and developmental problems you might have to overcome. I'm not saying all doctors are bad, but if you are unlucky enough to have a kid like my little sister you might face dental issues and Autism… And unfortunately not a lot of doctors and dentists are well-informed or up-to-date enough to know crucial things, like how a c-pap can damage your preemie's teeth still forming in their gums. You might find yourself having to be a detective/advocate/warrior for your baby through to adulthood. My mom always says she feels blessed that her daughter doesn't have more problems considering how premature she was.

My biggest reason for raising awareness about all the nefarious Domestic Enemies of the Preemie Mom is so that you don't become your own enemy. It wasn't your fault and you didn't do anything wrong. These things just happen. I'm trying to learn to deal with it, and nothing has helped me more than talking about it. I still catch myself wondering where I went wrong or what I did (Was it the cold cut sandwich that one time at 27 weeks? Was it falling off that horse at 9 weeks?)…

But now my son is here; he's healthy and happy and smart, and when I need it, I get a little help from my friends to remember that. So, when you are without your baby and just visiting at the hospital from time to time, remember: there is a group of moms who DO get it. Moms who are thinking the same things you are, asking the same questions, and who get equally excited when their baby hits 5lbs then 6, 7 and 8. Find your allies, Premie Moms – and you’ll discover the peace and confidence you were afraid you lost somewhere in the hospital.

(c)Herding Turtles, Inc. 2009 - 2011

85 comments:

  1. Whoo! Thanks for letting me share!!!

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  2. Don't forget the nurses following protocol. My daughter was born at 33 weeks, 4 lbs. 13 oz. She was gaining weight fine from the tube feedings, but they wouldn't release her from the NICU until she could feed herself, obviously. 18 days in, a nurse sent an entire feeding down the tube without even trying to get my baby to drink it from a bottle "because she ate poorly last feeding. It's procedure." I wanted to knock that nurse's teeth out.

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  3. Dear Manda,

    You are a gift from above, and we love you more than we love chocolate AND coffee. Getting to know you this year has been amazing and I am so blessed to be one of Edible's virtual Auntie's.

    To all the other moms of preemies,

    You are awesome and brave, and we love you! If people start to talk smack, send them to the leadership team of spark, we have a few choice words for them.

    Love always,
    Headmistress Yca

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  4. So glad to read this! My son was born at 32 weeks and spent 16 days in the NICU -- can totally relate to everything you're talking about, especially the NICU environment: warm and cozy, but underlaid with FEAR. And, no one understood how pyscho we were about keeping germs away from our son...HELLO, he's no bigger then a chicken, he CANNOT get sick, or we're in a whole lot of trouble.

    Love your post, thanks!

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  5. NinjaKate here:
    Amanda, just look at Eddible. LOOK AT HIM. How freaking awesome is he?

    You did good, girlie. You did good.

    And remember -- when THe Idiots start talking like idiots, just pretend you don't speak English.

    [p.s.: My word verification today? "MOOSH" That's Eddible in ONE WORD.]

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  6. So true. All of it. My daughter wasn't a preemie, but she was born with superventricular tachycardia. In other words, her heart beat about a million times per minute. And she was tiny. And I wanted to throat punch the people who made every effort to point that out and compare her to their baby who was in the 9,345,678th percentile.

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  7. People need to understand that sometimes things just happen.

    I'm not a preemie mom, but I am a heart mom. My child was born with a serious congenital heart defect. We have spent 2 of my son's 5 years in hospitals. I'm a professional hospital mom. Sad, right?

    Anyway, it's amazing what people will say to you while you are dealing with your child's illness. I had an almost perfect stranger ask me if I had his funeral paid for after eaves dropping on a sobbing phone conversation with my mother.

    Don't ask folks things like this. Don't insinuate guilt, and certainly, most certainly don't judge.

    I tell people, when asked about my son's illness that God made him just the way he wanted him. Who can argue with that?

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  8. Having had 2 preemies I thank you! My preemies are 8 and 5 years old. While we're dealing with autism in the oldest, it's been only minor physical aliments with the younger. The part about being discharged and just leaving without your baby brings tears and a rush of bad memories back. But it also reminds me how far we've come and how much they've both grown. Hang in there preemie moms! Better days WILL come.

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  9. I had a preemie, too, so this post really hit home. I'm hoping I just misread this sentence..."I'm not saying all doctors are bad, but if you are unlucky enough to have a kid like my little sister you might face dental issues and Autism", because my "came right on his due date" kiddo has autism. I don't consider our family "unlucky" to have him, as he is a wonderful addition to our family. His autism is simply another challenge to face, but it certainly does not define him. Again, I'm not trying to be Judgey McBeeyotch, because I love the post and identify with it. Good luck with your child and hope to read you again on RFM.

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  10. Thank you for posting this- my kiddo was born at 29 weeks and i was fortunate to not get a lot of negativity- I did the guilt trip thing very well on my own and I am sure there were a few people who didn't know me well enough that thought "well, she is a bit overweight, that must be why". My daughter is a happy healthy 2 year old now and we are weighing our risks of having preeclampsia again before having our next one. Thank you for this post, its awesome to know you're not alone.

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  11. Go Manda!!! Miss you all and I really need to get Sparking again......

    Jrseygirl

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  12. I have twins who were born weighing 5lbs 2oz and 4lbs 3oz at 34weeks. They were in the nursery for 2 weeks on feeding tubes and such. They are now almost 8 years old.
    I haven't seen anything that described how I felt going through that time until I read this blog! It made me laugh and cry (the part about leaving them at the hospital while I went home). Thanks for posting this awesome blog!

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  13. Oh my God. I'm crying and sort of freaked out because... are you ME?? Everything from when our sons were born (mine was 34 wks) to how long in the NICU (2 wks, which is nothing compared to some mommies I met there) to our FREAKING NAME, Mandy. LOL Just to weird.
    I have dealt with every.single.one. of these domestic enemies. Someone in my family (who I'm not going to name) once told me to "give him to her, she could fatten him up." Because I wasn't doing a good enough job? Also I heard repeatedly to just give him formula because it'll fatten him up (I was killing myself pumping my precious breast milk which every doctor assured me was the BEST thing I could give him). I had pre-ecclampsia so several family members told me it was because "I was doing too much" which was sort of supposed to be a compliment "oh you are just so active, you can't sit down, no wonder your blood pressure was high" Um no. Pre-ecclampsia has more to do with the placenta not attatching deeply enough and your kidney function failing, so THEN your blood pressure goes up. It's a side effect of the DISEASE I got, not a product of being "too active" and for goodness sake I walked around Target and vaccumed my house and that's about the extent of my activity... i wasn't running marathons.
    How about all the people "So is he what, about 3 months?" "He's 7 months" -Pause- "Oh"

    I just wish people would think sometimes. It wasn't so much getting his age wrong that bothered me, but the people who, in their comments, insinuated that all of it was my fault in some way. I was the mother who took her prenatal vitamin every night. I never took a sip of alcohol or smoked. I avoided lunch meat and soft cheeses. I never missed a doctor appointment. I was as close to perfect mommy (before kids it's easy) as I'll ever be. I once had a friend call me on the phone on my last day in the hospital. She cried with me, prayed with me, but most of all she told me over and over that THIS WASN'T MY FAULT. She told me that she knew I loved my son more than anything and she knew I was doing everything in my power to get him better. She assured me that every feeling I had was normal, but that when I was feeling THE GUILT to shake it off and tell the devil to get out of the room. I needed her then more than ever, and I hope if anyone reads your post or my comment and has a friend going through the same thing they will say to them what she said.

    Thanks, it was great to read your post. I just can't believe how it mirrored my situation! Crazy! Glad your son is happy and healthy. Mine is too and I can hardly look at him sometimes when I think about how things could have turned out. It has made me so thankful for him every day.

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  14. My son was born at 25 weeks. I was so fracking tired of "my sister's neighbors son was born at 32 weeks spent a WHOLE WEEKEND in the NICU, and look at him, he's doing great!!!!" Whatever, your case isn't the same as mine, and this is my son!, I don't care if the week the other kid spent in the NICU made him able to fly and makes flowers bloom even in winter, I'm worried about our here and now.

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  15. I washed my hands so often in the early weeks of my premie son's life that my knuckles cracked and almost bled. Then I started using lotion.

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  16. My son was born 4 lbs 9.5 oz. at 35 weeks. I feel you. Now that he is almost ten (ahhhh) I can tell you that it does get better, but beware of it sneaking back in every now and again. When I look at him, I still can see him laying in the NICU bed thingy. I can still remember the pain of leaving the hospital without him. He got to stay two and a half weeks, cause they wouldn't let me breastfeed and the formula sucked so much he would throw it up. My son is just now truly "catching up" to the other kids his age. I still get comments about how "small" he is. He is also blessed to finally be a healthy weight. I STILL get excited when he gains weight. He got picked on in Preschool through kindergarten. He then figured out that if he was the class clown, he wouldn't get bullied. So that's him. My ever so tiny, beautiful, still had a head full of hair, growing up to fast, funny, OMG he gained a pound, LITTLE boy.

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  17. I didn't have a preemie but I had a very sick baby who got airlifted to the big children's hospital 6 hours away from home.....I totally get your entire #3.


    Great post! <3

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  18. Love this! My daughter was born only 4 weeks early and spent one long night in the NICU...people like Mandy are my heros...

    Gotta ask though, when are we doing Domestic Enemies of Lost Baby Mamas? I was kinda hoping for October 15th...

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  19. I agree with everything! Especially the people who ask if you drank, smoked, whatevered while you were pregnant. I wanted to say something smartaleckey back, but was too stressed out about my 6 weeks premature, 4 lb baby. Also, the random ignorant nurse that yelled at me when all I wanted to do was feed my son, but she felt he needed to stay under the bili lights and get a bottle instead. I wasn't a big fan of hers, especially when she told me it would be MY fault if his numbers didn't go down.

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  20. I had 3 girls, all early. Each 2 weeks earlier then the one before, so 38, 36, & 34 weeks. Each one had their own story, sometimes I think they were trying to out do each other. ;) With time, I have come to find humor in the stories of their births. I learned with the first one that althought making plans is a good idea, nothing went according to how I thought it would, so I also needed to be able to roll with it because I had no control. As I read your words, I was taken back to a time when the stories were too fresh to be funny, too real and painful. Although my family had it easy compared to others in the NICU (which I thank God everyday for our blessings) your heart still breaks when your child is sick or needing a little extra help. It hurts and it's a valid pain. Thanks for sharing your story, and prayers for all those little NICU babies and their families. God Bless Them All.

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  21. My son was 2 lb 3 oz, born at 29 weeks. 2 months in the NICU and a daily battle with nurses, doctors and even non-medical hospital staff. Not to mention that the NICU was NOT warm and cozy, it was noisy, brightly lit and crawling with un-sanitary procedures! I actually watched a nurse sneeze into her hand, wipe snot across her arm and reach down to a 2 pound baby and 'clean' her central line! My son had a staph infection, diaper rash (that went untreated for a week until it BLED) and cloged I.V.s...It was the worst 2 weeks of my life! Thanks for pointing out that it wasn't my fault so stop asking me your stupid questions! And NO I am not a grown adult carring a doll through the grocery store!

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  22. Don't forget about other moms saying "how LUCKY I was to ONLY have a 4 1/2 pound baby and to have such a short labor" PSSST... I was in labor for 7 weeks on and off, and then I was hurtled into mommyhood without being able to touch my baby except in rationed doses. AHHHHH! The well meaning dumbos.

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  23. My daughter spent 15 days in the NICU. While I was there, I made friends with a mom whose daughter spent 100+ days there. After our kiddies were discharged, we were at a mommy and baby group together. We were commiserating about how hard it was when we couldn't take our babies out of the incubator to hold them. A mom there actually said to us, "well, really they weren't supposed to be born yet anyways. If they were still inside you, you wouldn't have been able to hold them." Yeah. Cuz watching your baby sleep in an incubator, hooked up to all kind of tubes is TOTALLY the same as still being pregnant with them...

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  24. For me, then there were the nurses.

    Most of them were wonderful. Others, not so much.

    I was 22 when I had Boy. He was born at 35 weeks, 4lb, 6oz. Lost a full pound in NICU. And the nurses assumed that I had gotten married because I'd gotten knocked up, and that I was a white trash ignoramus.

    I'm not.

    But they couldn't see beyond my suspected age (several of them thought I was younger than I was) and the fact that my firstborn was very, very sick, and so I MUSTHAVEDONESOMETHINGWRONG.

    Suck it, Judgmental Nurses.

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  25. Wonderful post! My kiddo was born at 24 weeks, 1lb7oz, 170 days NICU. Now that she's almost two people still don't understand the risks from her being so premature, and developmentally delayed. Nobody else gets it, except another preemie mom. Nobody else understands the fear still of even the common cold or if she isn't gaining weight right. And still to this day I sit here crying my eyes out wondering what I did wrong. Especially nights like the last two where she screams for 4 hours and can't tell me what's wrong because she doesn't talk. Ugh! You've definitely captured the essence of preemie-mommyland.

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    1. My daughter was also 24 weeks ! 1lb 5 oz 12 in long 164 days in the NICU!! I know your pain!! My daughter is 8 now and has c.p. and is in a wheelchair. I never knew how strong i was untill i had her!! Katie

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  26. My daughter was born when I was thought to 40 weeks, 6 days (though, knowing I ovulate a week later than most, I know I was more like 39wks, 6days) via C-section after a failed induction due to fetal distress. She was 5 lbs, 8 oz. She *just* made it to the line the separates "preemies" from "term" babies. She was definitely born at term. She was perfectly healthy and finished in every way. I had oligohydramnios (no amniotic fluid left) at my 41 wk biophysical, which prompted the induction.

    Point being, for all intents and purposes my daughter was 100% finished and to-term, but due to her weight she was treated like a preemie and I had to fight the hospital to not put her in the NICU "just overnight...unless she needs longer". Umm...you mean that place that's supposed to be sterile, but babies pick up infections? NO! Thank goodness for her 9/9 Apgars or we'd have been in your place. This did not stop the baby nurses from harassing me to the point of utter distress about her wakings and feedings...

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  27. Thank you for posting this!!! My little sweetie, Mighty Melody (the daughter of some of our dearest friends) was born at 23 weeks gestation at 13 oz and 10 inches long. She beat the odds and MADE IT HOME!!! She was in the NICU for 4 1/2 LOOONG months. PLEASE take a moment to "like" her on facebook. Their family is going through extreme loss of her mother due to (we assume) birth complications almost 5 months after her birth. You can read her story here: www.mightymelodyfund.com

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  28. Let's not forget that the minute your baby enters the NICU, you are asked to present your degree in advanced neonatal medicine. What? You haven't even finished reading "What to Expect?" awww...here's the most recent edition of the AMA to get you started.

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  29. My son was born @ 24 weeks weighting 1 lb 9 oz and spent 4 and a half months in the NICU, many nurses were rude to me and talked to me like I did something wrong. Talked to me like I was a child... I learned a lot from being there but wouldnt want to go back! I still get nasty comments because he quit eating and had to have a g tube placed, I get looked at like i just quit feeding him!

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  30. My daughter wasn't a preemie, but I had IUGR (undiscovered until 39w2d, the day she was born) and she was 4lb 15oz. Thankfully she never had to go to the NICU, but I still get irritating comments about her weight. She is now 9 weeks old and 8 1/2lb - which is a great gain - but people still feel the need to ask what is wrong with her, or ask me if I drank or smoked during my pregnancy. Um, excuse me?!

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  31. Thank you for your post, I'm crying now right along with it. Not in the silent dainty tears tracking down my cheeks way because your story is so touching. No this is the kind of crazy person crying where you look ugly when you're done and there's snot in your hair. Because I've been there, and while it's not a fun place to be, people need to know. Being a Mom is hard enough without any other problems but having a preemie is like wearing the guilt as a hat and the hat has it's own guilt hat.

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  32. My favorite was always "Are you sure she was early? She is really big for a preemie". Yes, I am sure she was born 9 weeks too soon (the first & last time that kid was early for ANYTHING). Yes, I realize she was almost 5 lbs but she still spent a month in the NICU because, really, her size only mattered in as much as it made everything a little bigger/easier to work on when she crashed.
    I also loved to walk through the 'regular baby' nursery to get to the NICU. That didn't make me feel like a failure at all...it did, however, make me realize how amazing & strong & beautiful all those tiny NICU peanuts were with their tubes & little kitten voices.

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  33. I can SO relate. I have a former 27 weeker (now 7) and a former 33 weeker (now 2 1/2)

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  34. What's with the Crappy Pictures rip off? Amber needs a patent.

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  35. No one can escape from the discouragement of MILs and medical protocol. My children were both born late and quite large. I gained less than 30 pounds with each pregnancy, yet one doctor lectured about the dangers of having big babies. My babies and I were also closely monitored for diabetes (not present).

    Both children have had issues, including asthma, frequent bouts with croup and pneumonia, and one child has had some developmental delays. I have spent many nights in the ER, PICU, and as long as a six day hospital stay for breathing related illnesses.

    This is as my husband is serving in Afghanistan and my closest family is my in-laws--
    My MIL doesn't believe that there is anything wrong and has told a group of doctors such to their faces. Her position is that the kids are perfect but anything that is wrong with them is absolutely my fault.

    And my friend is afraid to bring her children over to my house for fear her kids will catch something from mine?!?!

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  36. I want to point out that if you had your son at what your doctor and you both thought was 41 weeks, you DO NOT HAVE A PREEMIE. You have a low birth weight baby. There is a difference there. Preemies are not just small babies.

    BUT, your post just confirmed what I have learned through my son's nicu stay and the emotional aftermath of jealousy and animosity. When my baby was born at 26 weeks ans I met moms with babies born at 34 weeks, I would think to myself "you have NO idea what I'm going through. How could you? Your baby will definitely live. Your baby probably won't have cerebral palsy. You can take your baby home in a couple weeks! I have it soooo much worse. My son could die any day. He could have sooo many life long problems. We could be in this NICU for 6 months!" Well, I was kind of right but also pretty wrong. Who was I to say what kind of pain, worry and stress that mom felt? Leaving a baby in the hospital while you go home empty handed is torture for anyone regardless of gestational age. I've learned that through talking with late term preemie moms and have realized that even full term babies can need NICU time for various reasons one being low birth weight.

    I'm guessing, since you have a younger sister who was born very premature, you already know the huge differnce and the huge similarities of situations like this but I just felt I needed to say something about the preemie label you use for your son. Be happy, he's not a preemie!

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  37. I had to be induced at 35 weeks, because of medical issues. My daughter was a whole 3 lbs 11 oz. I was lucky in that she wasn't sick, just super tiny, so she didn't have to go to NICU but she did have to go to the nursery just one level below that. I was also lucky because she only had to stay for 3 days.
    I feel for you on these, I had them too. One of the enemies I had was also the nurses. I wanted to breastfeed. I was pumping like crazy in my room, sending all my hard work to the nursery. I'd get down there and the nurses would use their super high calorie food. If I reminded them about my milk, they'd say "Oh, well there really wasn't that much of it, and we wanted to make sure she got her calories." Only one nurse the 2 days that I was in the hospital even let me attempt to nurse my daughter, despite the fact that I had wanted to try. Luckily, my daughter got to go home the next morning.
    The other one I had was Fear. I got pregnant again when my daughter was 15 months. I was terrified I'd have another preemie and that this one wouldn't be so lucky. I spent every day in fear. I went to my doctor every time I thought something was wrong, the guy was probably sick of me!

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  38. Thankyou! I've never had the opportunity to talk to or hear another Mum's Prem story. It made me cry again.

    Cry for all the nights of constant feeding, begging our son to finish the milk in the bottle, hoping he would gain more weight. If he didn't meet the targets set by the health visitors, or he would be taken back into hospital.

    Cry for the mind bending calculations I had to do to figure out how much milk, medicine, vitamins was due at each feed and whether I'd given it in the right order at the right time.

    The constant threat of the bugs he was exposed to, everytime we left the house. e.g. Waiting in the clinic with people sneezing all over him whilst we queued to get weighed.


    Cry for the days when I did get out of the house and see other Mum's who really did say the stupidest things and leave me feeling like the worst mother in the world.

    Cry for the nights and hours of feeding when it was all thrown up and we had to start again.

    Cry for the mountains of washing all over the house that my husband was so impatient over.

    Cry for the hours of travelling to different doctors to be told they would 'refer' us on but couldn't give an accurate diagnosis.


    I didn't have my Mum, she was in another country and not sympathetic in the least. Neither was the MIL.

    I really wish I'd had someone to talk to then. It did all turn out ok. Our son is 5 now, he has had developmental delays, various medical problems and is on the Autistic Spectrum but he is alive, special and I'm a stronger person for all we've been through. But I remember it all like yesterday and it was the hardest thing I've done in the world.

    Respect to ALL the Prem Mums out there!!!

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  39. My girls are 9 now, they were born at 32 weeks and spent a month in the hospital before we could take them home. I have never read anything that so perfectly sums up what we went through and some people just don't get it. Your post made me cry bringing back all those memories. Thank you for reminding me that I am not alone.
    Preemie Moms Rock!

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  40. I'm loving these comments! Its so great to hear so many other people know exactly what I'm talking about!

    @ Anonymous about the ""I'm not saying all doctors are bad, but if you are unlucky enough to have a kid like my little sister you might face dental issues and Autism" sentence, it did really come out wrong. I was trying to say when you have subtle issues like Autism (she's highly functioning) and dental issues, its so hard to get doctors to look for them. My other brother is on the spectrum too, hes brilliant, when we started to suspect my sister my mother got a lot of "You're just diagnosis happy! People always blame autism when their kid is weird." In dealing with my sister I've seen that so many pediatricians don't even look into the fact that a child was a preemie when they are diagnosing. And in cases of extreme prematurity it CAN be a very important factor later on. I meant that you would be unlucky in that Doctors can be hard heads and you can't have a normal doctor or dental visit without having to go over your whole medical history and defend and validate it. I hope that makes sense! Its so blush-able it reads like that! So sorry!

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  41. @Gretchen. He was 6-8 weeks premature. The doctors read the sonos wrong, his sonos said he was due in march- april, my doctors INSISTED feb. I should have explained that. He was lacking in vital development. He didn't have nipples. All Preemie indicators.

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  42. Thank you for sharing this. Number 3 brought up all sorts of tearful memories. My daughter is now a HUGE, pudgy (does anyone else get this excited about baby fat?), beautiful 6 month old (although her adjusted age makes her barely 4 months).

    My other domestic enemy is actual age v adjusted age.

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  43. Gretchen:
    A small part of Manda's story must have been edited out, because I know her,and in fact Eddible WAS a preemie. They _thought_ she was full-term, and so induced her. In fact, he was quite early. He was at about 33 or 34 weeks.

    Just so you know -- she really DOES know the difference. :-)

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  44. I had preeclampsia and my daughter was born five weeks early, at 3 pounds, 12 ounces. She was in the NICU for 2 1/2 weeks, simply because she was so small and tired out while feeding. Because I had the double whammy of an emergency c-section and a preemie, I had several people tell me how sorry they were that I wouldn't have a "birth experience." WTF? We almost died. I was just happy to have her at all. In the end, I ended up with post partum depression too. I could not believe the insane comments people made regarding my bottle feeding her (much easier to gauge how much she'd actually eaten), how small she was (hit 17 pounds at a year), and don't even get me started on the formula issue (colic, needed special formula since her tummy didn't appear to like anything very much).
    Luckily, she's now ten, pretty much average for her age, sizewise, and is a brilliant, fantastic kid. You'd never know that, when she was born, she pretty much looked like a small lizard.

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  45. God bless you all. My grandson was born at 35 weeks, and weighed 8lbs 6 oz. No crying directly following birth...but his breathing was fine, so the dove felt he was ok. No NICU. At 5 years old, his mom and dad are both gone ( he found my daughter dead last June, another horror story) he seems to be coping, but I worry about him every minute. Weird post, but my original point is that he seems to do well most of the time, just some anger issues. I wonder why...they started quite young, could this have to do with being a preemie? But he is the only reason I get up and live every day...

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  46. My "preemie" was only borderline Preemie (3 weeks early), but had some weird shock thing happen so had to stay in NICU (Goddesses, the nurses were GODDESSES!!!) for 5 days. So I had the walk of shame as well. And I KNOW I didn't do anything wrong. Funny thing is, I seem to have the personality where no one would DARE suggest otherwise. I really don't know why. Maybe because I have a sign over my head that says (in neon, flashing lights): "Go Ahead, make my day...I DARE you!" I swear, I would be arrested for Involuntary Bitch Slapping!

    BTW, aside from some little kidney issues (which we knew about in advance) he is a totally fine, smart, happy, sweet, adorable, just want to eat him up with a cracker little 18 month old. We were one of the lucky ones and I will never forget that or take it for granted. EVER.

    Good luck Mommas!

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  47. Manda is my daughter, and she was the one who came and helped me almost 8 years ago when her youngest sister was born at 26 weeks. She took care of her other two siblings so I could make the 2 hour trek to deliver breast milk and visit my baby a couple of times during the week. She sat with me and listened to me cry when I couldn't hold my baby for almost 2 months, and when the baby had a blood infection and almost died.
    I just want to say that I feel for ANY parent who has to spend time in the NICU. We were there for a little over two months, and there were families we met who were already there when we came in, and were STILL there when we left. We also saw and met people that were only there for one or two nights. It is a tramatic experience no matter how long or short your stay is. You feel helpless and scared. Your babies life is in the hands of someone else, and you can't do anything about it....you can't hold, hug or feed your baby unless someone says you can, and it sucks! I was so proud of Amanda when Eddie came....she was so brave and she just dealt with it....I tried to help as much as I could without intruding, because this time I was on the other side of it, and I hope I was there as much for her as she was for me when I was the one going through that whole ordeal :-)

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  48. It took me a very long time to figure out that it wasn't my fault. My 31 weeker twins were in the NICU for 55 days, and it was the hardest time of my life. But, the nurses actually became very good friends, and they helped me through a very rough time. It's true about the discharge, though. Who knew that you'd be leaving the hospital basically empty-handed?!

    Just know that you've got to find other preemie moms to talk to - and don't listen to those who think that they know. They really have no idea. Perhaps b/c I had twins, and it's just a lot more common to have preemies when you have twins, I didn't have a lot of these horrible comments. But, our pediatrician - who had obviously never had preemies before in her practice - had the gall to tell me that we should start solid foods when the girls turned 4 months old - which meant that they were only 2 months old adjusted. And when I questioned it, she tried to justify it by saying that the AAP recommended that babies start as early as 4 months of age. But they were really only 2 months gestationally! Seriously??

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  49. Your post is made of awesome! My son was born at 33 weeks, 3 lb, 6 oz. God bless (almost) every single one of those nurses in the NICU...and I don't EVER want to see that place ever again. EVER. My son is 4 now, and we're currently experiencing #4. Chronic ear infections, sensory processing disorder. Speech delay. When in doubt, it's due to the prematurity. Sigh.

    I remember when I was told that they had to add formula to my breast milk because it wasn't calorically dense enough. Or something. So the one thing I could possibly do for my baby apparently wasn't enough. I let them add it to the milk, because at that point, had they told me that I'd have to dance naked on the Turnpike in rush hour traffic to get my son out of the NICU, I would have done it. After two days of my son not keeping anything down, they finally discontinued it. While I felt somewhat vindicated, it wasn't such a good thing that my kid lost two days of nutrition!

    I also remember my son not liking a dark room, because he was so used to the bright lights in his fish bowl.

    There are still times I haven't figured out that it wasn't my fault.

    Enough rambling from me. Excellent post!

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  50. I had my twins at 29 weeks weighing 2lbs each and a DOCTOR told me that I was lucky because I didn't have as much pregnancy weight to lose after having my babies preterm.

    Yeah, cause laying off the donuts would be so much harder than seeing my babies hooked up to ventilators.

    Thanks for the post and venting!

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  51. "He was lacking in vital development. He didn't have nipples. All Preemie indicators."

    Really, no nipples?? That has got to be the oddest thing I have ever heard about a preemie. And no he was not a preemie. Your blog states they thought 36-37 weeks. Gretchen is right he may have been IUGR or small for his gestation but a preemie, no.

    That being said, the NICU is the worst roller coaster ride any parent has to be on termie mom or preemie mom.

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  52. While I did not have a preemie with either of my 2 boys I still recall a 2 week rotation I did through a NICU for my internship as a RD. They told us we could have an early tour in case we were "too freaked out" to work there. To this day I recall thinking how perfect these little ones were, tubes and machines and all, that they were just perfect.

    And while my 2nd one is not a preemie, he is still small, only 10-15%. People do comment about him eating enough and how he's "too tiny to be walking around like that". Whatever. He's happy and healthy and that's all that matters. I was a 34 week preemie myself and turned out just fine!

    I LOVE the complaint about the LaLeche people!! Worst mistake I made with #1 and nursing troubles was to call them as they did nothing but judge what I was doing or what the nurses in the hospital did for us.

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  53. This comment has been removed by the author.

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  54. OMG! Blushable! No nipple buds! Not NO Nipples!!! Haha, yeah, my birth story blog states that. I found out later that he was actually somewhere around 6 weeks preterm, as I responded to Gretchen. Please remember that I was just home with my baby, happy, glowing when I wrote that. I hadn't gone to the first doctors appointment and gotten any real info yet. Sorry.

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  55. Props to all the other preemie moms out there. NOTHING gets me more teary-eyed than seeing pictures of a teensy newborn with tubes sticking out of everywhere because it reminds me of my own premature son. I had a placenta previa that turned into a placental abruption at 33 weeks and had to cross a nurses' picket line at Christmas to have an emergency cesarean. My little guy was whisked away to the NICU for two weeks and our emotional roller coaster began. A few highlights of our experience were:

    * The lactation consultant who came to my room 2 hours after my messy c-section to ask me if I had any questions before she left on Xmas vacation. Uh, yeah, where's my baby and is he OK? (Copious weeping.)

    * The hospital's neonatologist got sick 2 days after my son arrived in the NICU so we were treated to a rotating selection of visiting neonatologists who tossed off random comments about our son's progress or lack thereof. My favorite being the b*@#h who told me he would likely be in the NICU until his due date (in February) the day before he was released to us.

    * The time my husband had to break up a nurse fight in the NICU when the striking nurses came back to work and didn't agree with the strike-breaking nurses' politics. Take your drama the hell away from my kid's incubator!

    * The 82 year old nurse who came to discharge me on Christmas eve (they dragged every nurse in California out for the occasion) and reminded me (in her best WWII voice) that I needed to "gird myself" because I was about to leave the hospital "with empty arms and a broken heart." Kick a mama while she's down, huh.

    * Sometimes people still ask me if my almost 4 y/o son is so short because he was a preemie. No, he's short because I'm 4'11 and my husband is 5'5. He's blonde because we're Irish.

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  56. Manda, don't worry about the couple of people who are telling you that you did not have a preemie. I spoke with the NICU doctors who were treating the baby several times, and I know that you did have a preemie. We should believe his doctors before we worry about someone who tries to diagnose your kid based on a blog entry......talk about domestic enemies! What kind of crazy is that???

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  57. Reading this from the NICU at Boston Children's Hospital... day 74. Have definitely experienced #1 and am worried about #3. I especially hate when other moms tell me, "Just wait until you get out of the NICU... then your life will REALLY be busy." Seriously? WTF?

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  58. and the alternative to all those evil nurses, the nicu, the feeding protocols, and tubes, etc. is?

    just as the preemie moms need to avoid guilt-tripping themselves over their having had a preemie, they need to avoid blaming those whose profession is saving thousands of little lives, who without medical intervention would 100% surely have been stillborn or died.

    a little sensitivity to the grief of those who have lost infants and who would give a lot to endure the struggle of nicu efforts if only their child had lived.

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  59. Mmmm thats in interesting post, I had a full term bubba and she had no problems, I consider myself lucky, but boy some people need a kick in the teeth. I was a prem baby myself at 32 weeks, 4 lbs 12 oz. Ive always been smaller than everyone else and have a learning disability, not stupid but learn differently than others. I really can't stand other mums/nurses/dr's anyone who comment in a negative way. My daughter was 6lbs 11oz, 55cm long. Everyone was all "she's tiny, did you eat at all" or looking at me saying omg you don't look pregnant at all even though I gained 15kgs ( which is alot considering my pre pregnancy weight). Love the comments, oh you mustn't be feeding her etc, she is gluten,dairy and soy intolerant and we weren't aware til 18 months old so she had issues gaining weight. Plus Im only 5 2", her father is 5 4" . She was blessed with food intolerances, lack of height but shes darn next to perfect for me. And people shouldn't forget that nothing ever goes according to plan , and alot of the time babies being born prem isn't due to anything the mother has done. Being a mother is hard enough without having people butt in with their inferior opinions and back handed compliments

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  60. Another preemie mama here. My son, Big D, was born at 28 weeks and weighed 2 lbs. 15 oz. I think I must be like Anonymous with the flashing neon over her head because only one person ever said anything awful to me. The nurses were GODDESSES and I cannot say that enough. My MIL (also a Goddess) came to stay with us and our then three-year-old and I could not have done it without her. The pediatrician was wonderful, yadda, yadda. It also helped that they have a spectacular support system at our hospital.

    The fear, though - my God, the fear. He almost died I don't know how many times. I lived in fear forever, it seemed like. It gets better, though. It does. Big D is now five and the sweetest little man you've ever seen. And there's nothing at all wrong with him. Nothing, that is, that can't be directly attributed to his little stubborn personality. (I still keep trying to blame that on being a preemie, but the doc is having none of it.) My mom says that stubborn streak served him well when he kept refusing to die.

    We just went to a NICU reunion last month and it was so very nice to see all the little (and not so little - one was sixteen) miracle babies. And the nurses faces when they saw them again - priceless.

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  61. Reading and crying through all the amazing stories. My son was born at 34 weeks, 3 lbs 2 oz. We spent 6 long weeks driving to and from the hospital 3 times a day, the worst time of my life! Was fortunate enough to have the best medical staff EVER! Will never forget having to leave the hospital with all my baloons and flowers and stuffed bears but no baby. Or my poor, ignorant sister in law who handed me her perfectly healthy 4 week old baby to hold so she could get something done. My son is 12 and perfect. For those of youn still watching over your little ones in the NICU, listening to the God awful alarms going off continually, we're all there with you.

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  62. Not a preemie mom, but my son was born with Pierre Robin Sequence. Spent 5 days in the NICU, then a month in the infant Intermediate Care Unit at Johns Hopkins. My husband, 3yo, and myself move into the Ronald McDonald House. When I finally brought him home, he was oxygen, feeding pumps, pulse ox and apnea monitors. He had 9 surgical procedures by 13mo.

    This post really hit home, and reminds me to be grateful for where he is today (not like I ever forget, but still!!)

    Can I add another? The why-would-you-have-another enemy. Yes, we were blessed with a surprise who was born jut before his 11mo mark (I'm still not sure how we had time or sex). Yes, they are crazy close in age. No, I was not at all worried he would be born with the same "pizazz." I don't regulate your sex life, please stay out of mine!!!!.

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  63. My 33 weeker was a robust 5lbs, 9oz, and behavioral/learning difficulties are common among preemies... So I'm thinking theremay be one more enemy to the preemie moms, and that is the whole "is he like this because he just IS, or is this a product of Being a preemie?" debate.

    Great post. Yes, leaving the hospital without your baby was horrible. And somehow you had to hold your Schmidt together and have your meltdown later... Which for me turned into a raging case of ppd...

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  64. I'm not a mom of a preemie but I have dealt with some crazy comments about my son with autism. My mom said my husbands sperm and my eggs were too old, that's why my son has autism. I was 31 and my hubby was 39 when we got pregnant. And that's just one of many.
    And when I was pregnant with my first child, my hubbys niece delivered her son 3 months early. (we were due just days apart) We were across the hall from each other the day he got to leave the hospital and I remember feeling guilty that my child didn't have all the problems that he had but I cried tears of joy for my niece when she came in to my room to tell me bye. Taking the baby home after 3 months in a hospital had to be a wonderful feeling.

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  65. Delurking for a moment ... The NICU is No Joke. My son was not a preemie, quite the opposite, but nevertheless spent two weeks there. Just as bad as leaving the hospital with empty arms (which I wouldn't wish on anyone) was trying to be at the NICU around the clock and dealing with what I not so affectionately termed the NICU Nazis -- I think their sole job is to strip new parents of any kind of confidence they may have had by repeatedly trying to convince you that YOU ARE GOING TO KILL YOUR BABY. At least, that was the method of indoctrination chosen at my hospital.

    At the risk of being flamed and/or told to shut the #%$@ up ... I'm wondering if it's possible that your son wasn't a preemie, but may had IUGR? I'm sure you and your doctor explored this possibility but it's the first thing that came screaming to my head as I read your story. And to be clear, no, I'm not in any way implying that YOU did anything, because while there are risk factors, sometimes these things just happen for no known reason.

    I'm glad to hear you're all doing well. These things don't come with convenient targets to blame, which is why it becomes so easy to blame yourself. Bad uterus! Baaaad uterus! Shame on you. And don't look so innocent little mr. placenta, I'm on to you too.

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  66. Great post! I can't believe how insensitive some people are:

    "At a mom's group I visited one mom just flat out asked me if I smoked during my pregnancy."

    I would have said something very snarky, like, "Oh no, I would NEVER smoke while pregnant! I really think it was the cocaine that did it." And then I would have kicked them in the taco. But that's just me. :)

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  67. Ok, I'll tell myself to shut the #%$@ up ... just saw your comment kinda buried explaining other preemie indicators. :)

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  68. I did not have a preemie (thank Jeebus) but I do have an annoying, meddling MIL who did everything she could to convince me NOT to breastfeed, among other things. Good luck to you xoox

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  69. My twins were born 8 weeks early and spent 4 and 7 weeks in the NICU. Aside from your babies being in the NICU, it was not a bad experience. I think we were just really fortunate. I did not get much grief for what I did "wrong", guess people just expect it more with twins. However, I vividly recall the mother of a term baby who had to spend one night in the NICU for some monitoring pitching a very loud fit because she did not get to change his first poopy diaper. I am sure that was traumatic for her but she really needed to look around and be thankful. Her baby got to go home with her, not spend months in a hospital like some of the other babies there.

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  70. People just have a knack for sticking their foot in their mouths, even nurses. My 24-hr-old daughter was whisked to the NICU for pathological jaundice and the nurse who brought me the kit for the breast pump said "you're SO lucky, normally these kits are $40 but now insurance will pay for yours!". Then there was the nurse who told my friend that her loud NICU baby was the one that she "would like to drop-kick out the window". Yikes.

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  71. Proud Preemie Twin Momma here. My girls were 9 weeks early and were born weighing 3 lb 2 oz and 3 lb 6 oz. They were in the NICU for 1 month and 3 months. I totally agree with all of this post and I think you did an awesome job! I most identified with #2 and #4. I will never forget when my husband's grandma looked over at my just 2 weeks after they were both finally home and said "She cries a lot because you don't feed her enough. It's just not right for a 3 month old to only weigh 7 lbs!" No, she's crying because she has severe reflux and yes we feed her. Every. three. hours. around. the. clock! I just sat there and stared at her. I could not believe she had actually said that to me. I was actually quite proud that my 3 lb-er (who got down to 2 lbs even) was now a chunky 7 lbs. To this day I haven't forgiven her. As for #4, we still have to watch out for those old ladies. Just the other day 2 of them started carressing my girls' face while my back was turned looking at frozen chicken in the supermarket. Luckily, my husband was with me and stopped them. Yikes!

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  72. My personal favorite was: "Aren't you glad you didn't have to be pregnant the whole time?" Aren't you glad you aren't standing within slapping distance?

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  73. Yes, and the listening to your friends complain about how horrible the last few weeks of pregnancy are, how HUGE they are. I had a 32 weeker and to this day, even after a 2nd kid born FT, I still am sad about not getting to have those last 8ish weeks.
    For me, another bad part was having my baby whisked away, with husband following, then all the nurses and midwife and ER docs leave to go file reports or whatever, leaving me for 45 minutes ALONE, with no glasses (forgot them in the rush - baby was also born fast), nothing to do, no one to talk to, no baby to hold. Turned out, not as bad as leaving the hospital empty-handed, but it was still a really bad, scary, shocked, fearful 45 minutes that I will never forget.

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  74. Our first child was born at almost 26 weeks at 1 lb., 12 oz., after more than two weeks of bedrest for me at the hospital because my water had broken. We spent 14 weeks (102 days) in the NICU. When I went home without her, the teenager wheeling me out asked, “Where’s your baby?” I was too polite to respond.

    It was almost two weeks before we got to hold her and each time we did she’d relax so much that she’d stop breathing. Almost all of the nurses were very helpful though some needed a new profession based on their attitude. The ones we liked called our small daughter “feisty” and the ones that felt she was too much work setting off alarms all the time, we tried to avoid.

    We were very fortunate in many ways and she never had surgery. The first year was very hard for us emotionally and the hospital did not provide support for the parents. When we started discussing having another baby all the fears of a preemie came flooding back. There was no known cause for her prematurity, so another pregnancy was an unknown risk. I was fearful until 32 weeks when they said they could deliver if needed without intervening and then after that, I just physically uncomfortable.

    We welcomed a full-term baby boy into the family this past June, right after our daughter turned three. We met many families from the NICU that had much harder times than we did and are amazed by the resiliency surrounding us.

    It is true, it is amazing how you can get through such trying times and are grateful for both of our kids and family each day.

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  75. Amen! As a mom to three preemies, I can definitely relate. (Pre-eclampsia with my son--5 weeks early, daughters were mono-mono twins--8 weeks early.) I would add one more domestic enemy: NICU Nurses. NICU Nurses pretty much decide whether you can take your baby home--and if they think you won't feed your baby right of you haven't met all the requirements on their checklist, you don't get to take your baby home. And if you have other kids who have needed your attention, or have been absent due to medical problems of your own, which have kept you from "visiting" your baby as often as they think you should, they look down their noses at you and judge and keep your baby longer. Not to say that ALL NICU Nurses are like that, but one is all it takes to keep your baby an extra night when you are ready to explode with post-pregnancy hormones and primal need for your child.

    Also: breastfeeding for the Preemie Mom is a bitch. Pump and bottle feed? Baby won't learn to latch properly. Don't pump? Milk goes away. Pump and discard? What a waste... No right answer......

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  76. (Another Amanda!!) Thank you! My 32 weeker, 2lb 15 oz little girl just turned 5 on the 29th of November... it's been an amazing journey from the literal handful to the 1 yr old that looked like a 6 month old to my almost size caught up 37 lb daredevil. I'm still plagued by the fear and guilt - what did I do, what could I have done, what will she face because of a and b... but I take each day at a time and try to remember to marvel at her sleeping, by herself, and not worrying (too much) about if she needs another blanket so she's not too cold (poor kid had to be double swaddled when she did finally come home after a month). She's my amazing little monkey... and I'm so glad I'm not spending this month in the NICU like I did then. Thank you for sharing your story, your gripes, and reminding me of how much I have to be thankful for that this year she won't be finally coming home on Christmas, she'll be bouncing into my room to pull me out of bed. Good luck all!!

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  77. Late commenter! Proud twin preemie mom here...9 weeks early, no idea why, had a great pregnancy, but it just kind of ended. My superman son punched through his sac, and his sister came along for the ride! 3lbs 7 oz for son, and 3 lbs 2 oz for daughter. NICU for a month for my daughter, 3 weeks for my son. No major complications, but customary ups and downs. Lots of great nurses, and lots of support from my local moms club. Now, almost three years later, my kids are rockin' awesome...some developmental issues, but nothing too difficult, thank God. Sending mad props to all the other gals who've commented on this, and to Manda as the writer of the post. Preemie moms ROCK!!!!!! :-)

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  78. My hubby and I just got to bring my little girl home yesterday from the NICU.I had PIH and had a c section at 38 weeks and was told when she was out that she was healthy and then told later in the day she had wet lung and then told a few hours later that her lungs were immature and she would be transferred to a different hospital to the NICU.I cried so much because I hadn't got to hold her and I had to stay at the hospital I gave birth at to recover while she was at a another hospital.They wheeled her in an incubator with the c pap on,I stuck my hand through the hole and touched her little arm and cried seeing her hooked up like that.the next day I popped the pain pills and forced myself to walk around and act great so I could get discharged early and go see her.It worked and I was discharged after two days.When I got there I wasn't allowed to hold her or touch her or even hardly whisper cause it made her excited and caused her to desat on her oxygen.My hubby had slept overnight in the hospital waiting room and never left her side.The hospital was wonderful and after a few days we stayed at a hospitality house.The day before she got discharged they found a congential heart defect that we hope will clear up on it's own and if not she will have to have a cathater to fix it.I worry sometimes cause her breathing still gets fast but that may be due to her heart.We have an appt with a cardiologst in a few weeks.NICU is a horrible place for any parent to be no matter how long your baby is there or for what reason.I have such respect for NICU parents and I never realized just how hard it was to watch your child fight for their life till I watched our little girl fight for hers.I watch her sleep just to make sure she's breathing and I'm grateful for every single breath.

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  79. Any baby born before 37 weeks, 0 days is considered a preemie...I'd be really concerned about a doctor who managed to read an ultrasound so incorrectly that he was off by a month and a half. No nipple buds is common in preemies? Well, my 31 weeker had nipples when he was born as did my 36 weeker (yeah, she missed the full-term label by a week). "Preemie indicators"???? Never heard of such a thing.

    My son was born at 31 weeks weighing 2 lbs, 15 oz. At just about 7 he wears glasses to correct his nystagmus, he has asthma that is under such great control we barely wheezes and he has ADHD...but he his also highly intellgiant (as in he reads and does math 2 grad levels above his current grade level) and wrestles. We had wonderful nurses and doctors during his 6.5 week NICU stay.

    And who ever called the doctor a b**ch for telling you that your child would probably be in the NICU till his due date...um, that's kinda the standard answer.

    I didn't get to hold my son until he was 7 days old, I watched him struggle to breath and eventually get a tube put in, I cried when I found out I wasn't making any milk...I signed papers for him to have surgery 3 weeks after he was born.

    Know what I didn't do? Treat him like he was glass. The day he came home from the NICU we went to visit family. One nurse gave me the best advice ever, "Take him home and don't treat him like a preemie" My son is rarely sick and has only have 1 hospital stay due to his asthma (just before he turned 1)...the other was due to dehydration after having his tonsils removed.

    My husband had another father come up to him in the waiting room as I was being preped for emergency surgery and say to him, "I overheard what you said. My oldest was born at 31 weeks as well. This is him [points to child]...he is healthy as a horse and smart as a tack. Remember, it's not all doom and gloom." I was glad to hear this. I LOVED having a little hope to hang on to. So yes, I'm that mom who will try to give you some of the hope I was given because most of the stuff you hear in the NICU is doom and gloom.

    Oh, and don't read parenting books...they seem to be all filled with what can go wrong. Sometimes things work out fine. I keep a picture of my son with the tubes and wires holding my finger because people usually don't believe he was ever that small and that sick.

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  80. Dearest of bloggers,
    My baby was born at 29 weeks. He is now nearly two years old (born actually a few months before this post), and it was an enormous relief to see someone felt the way I did when I left the hospital. It ripped me apart. Every night when I went to sleep without my son at home, I sobbed.

    So, thank you. Thanks for getting it.

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  81. Oh! One to add: The nurse who thinks she knows it all and is clueless: My son's primary nurse was WONDERFUL. AMAZING, and a true goddess in highest fashion. I need to send her a present, speaking of which.

    Neverthless: the one who fed my son cold milk when he weighed less than four pounds and told me it didn't matter, while his temperature dropped and made him sluggish so he couldn't continue to eat, and caused his heart rate to drop? That nurse is someone I could have seriously hurt. I'm not a violent person, and have not been in a physical fight since I was 10, but that woman almost got beaten, or shivved.

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  82. I'm so glad I found this. My second was a preemie at 32 weeks gestation and 4 lbs. 4 oz. I gave birth to her in my mother-in-law's car at like 1 am while she was outside screaming at the fire dept. with ambulances parked outside to get out there! (Yes, she's crazy like that - and she got us on the news, but nevermind all that.) I know I will never feel FEAR again like I did in that moment. She was on oxygen, and she just could NOT gain weight for the longest time. The nurses were insisting that I put her on formula when she could not even keep down the HMF that they tried to supplement my breast milk with - through a tube of course, until a different nurse came in and stuck up for me. I never left the hospital for three grueling weeks of pumping milk and praying. The entire experience of going in and out of the NICU day after day was absolutely surreal. I kept thinking it was like an exclusive club that no one wanted to be a part of. Even after we got to take her home, it took a long LONG time before she felt like a normal baby in any sense of the word - and I will never forget the projectile vomiting. I filled a friend's deep freeze with my little bottles of breast milk so that she could both breast feed and supplement feed to gain weight. She had a few scares through the years, but nothing that left any lasting marks and now she is 4 years old, tiny, but she loves to run.

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