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04/12/2005
So you've decided to have a kid in the NICU!
This is for Pazel, who asked. It's my best advice for how to make it through your child's NICU stay. If you have any survival tips to share, please post them in the comments.
He's not going to remember any of this. You will — oh, you will, though other NICU mothers have assured me that the memory will recede in time — but he won't.
One terrible night, Charlie needed a spinal tap. We weren't permitted to stay in the NICU for the procedure, although I'd hoped to; when the only thing you can do for your baby is to be there, well, you want to be there. When we returned to Charlie's isolette immediately after the procedure, I was surprised to see how easily he slept, pink from his transfusions, looking pretty good for a baby who was, as the doctor later said, "knocking on the pearly gates."
He slept. His vital signs were good. The next day he was measurably better. He wasn't going to remember any of this. That knowledge was one of the only comforts during Charlie's long NICU stay.
Know how I just said that when the only thing you can do for your baby is to be there, you want to be there? Don't always be there. People will tell you that your baby knows you're with him, and I believe that's true to a degree. It's comforting. But there's a tyranny in that statement, too. If he knows, shouldn't I be there all the time?
God, no.
Your baby needs you there, but he also needs you rested, clear-headed, and relaxed. You're going to be none of these. After all, your kid's in the NICU. But do what you can to approach that ideal. You'll need to be ready to make decisions about treatment, to digest vast amounts of information, and to spend time bonding with your baby under very upsetting circumstances. So go home. Have a decent meal. Get some sleep if you can.
Yeah, yeah, I know. Try.
I can't imagine how grueling and upsetting it would be to have a child in the NICU and another at home. I'm not speaking from experience but from intuition when I say that the kid at home might need you more just now: after all, she'll remember this. The NICU baby won't.
So go to the NICU, of course. Be involved in your baby's care. But please don't forget to take care of yourself and the other people who love you. It'll be okay, because...
Your baby is in the most competent possible hands. Many NICU parents report being extremely upset to have to leave their baby behind when they went home after birth. This never bothered me: Charlie so obviously needed help that I was deeply relieved to have access to qualified people to care for him. And I couldn't have asked for a better team to do it. Every single one of the people who cared for Charlie was vigilant, skilled, and compassionate. (Okay, there's a caveat there, but more on that in a second.)
As far as your baby's physical needs are concerned, he will never in his life be better cared for than he is now. He'll be looked after round the clock by people who'll get to know him. I found great comfort in that.
Remember that caveat? Let's talk about doctors. From what you've written, it sounds like you've run into the same unsettling character we did, the doctor who does this every day and has therefore grown tone-deaf.
One doctor in particular said a lot of boneheaded things. One day postpartum, is "We don't have a crystal ball" supposed to help? What parent wants to hear how close her kid was to dying only hours after the crisis is over? Who wants to hear her future reproductive hopes scotched by a doctor who's not even an obstetrician, much less her obstetrician?
And yet. And yet. Despite what was either his callousness or his utter social ineptitude, this doctor gave Charlie top flight medical care. Don't assume a lack of concern for your baby when a doctor shows a lack of concern for you. Instead...
Get your feelgoods from the nurses. In my experience, nurses more than doctors seemed to feel that they weren't just taking care of a baby, they were taking care of a family. Time and again I watched nurses encourage the fathers to get involved, for example, to do kangaroo care or to feed the baby his bottle while the mother pumped. More than once the nurses reminded us to do things to take care of ourselves, to find a good local restaurant, to see a new movie just out, to go down to New York for the day. (And I'd plug the breast pump in...um, where, exactly?)
Get to know them as much as you can. They're going to be spending an awful lot of time caring for your baby, and you'll be spending an awful lot of time with them, even for a short NICU stay. You'll feel better if you know who's who. For us, it helped enormously to know that the people caring for Charlie were people and not just employees.
The NICU nurses encouraged me to pump, furnishing much better information than the hospital lactation consultants and making sure we had privacy around Charlie's isolette so I could watch Paul hold the baby while I did so. They spent a lot of time explaining what they were doing, reassuring us that the majority of what they did was utterly routine, and standing quietly with me at Charlie's bedside while I cried with a comforting arm around my shoulder.
Ignore that baby behind the curtain. You'll see a lot of other babies in the NICU, and a lot of other parents. Some babies will do much better than yours and will go home sooner. Some won't. And some really won't. Some parents will seem to be taking this all in stride. Others will look pale and crazed. (That would be me.) Avoid the temptation to compare babies, to fret about how short a stay they have or, more sadly, to imagine your baby in their place. No other baby on Earth has the same set of circumstances as yours, so it's pointless to compare. Irresistible, but pointless.
And fight the urge to wonder how that perfectly put-together mother looks so gorgeous three days postpartum, how she keeps her mascara from running when she cries, how she doesn't look like she's cried at all. She's not you. And she's not superior. Don't let her make you feel inadequate. (Key her car in the parking lot later if you must.)*
Even though you're your baby's parent, he's a patient in his own right. You'll be informed almost as often as you're consulted, if not more so (though non-urgent interventions will be discussed with you beforehand and major procedures will always require your consent). If your baby's doctor decides he needs a course of treatment immediately, it will probably be started before you're aware of it. This is initially upsetting, but ultimately very good. When Charlie contracted an infection of his central IV line, an infection that turned into sepsis, a course of antibiotics was begun immediately, in the middle of the night, before Paul and I were even aware he was sick. Those extra hours might have made a life-and-death difference. I am so grateful we didn't find out for sure.
It will get better.
It will get worse.
Lather, rinse, repeat as needed.
No matter how many times experienced NICU parents warned me that Charlie's course would likely be a long series of vertiginous highs and vomit-inducing lows, I didn't truly understand that until, oh, about the third peak followed inevitably by the third valley, a valley so deep it rivaled the Marianas Trench. You won't really know it until you live it, but once you do, you can say, "Oh. So that's what they meant." And have a good stiff drink or two.
Now some practical pointers:
Don't feel bad about calling the NICU. And don't feel bad about calling the NICU a lot. The nurses are used to hearing from parents, and are happy to talk with you about your baby. I used to call in the morning before we went in, to ask them how his night was or to request that they wait to bathe him until we were there; in the evening after his daily weigh-in; and in the middle of the night after I'd pumped and needed a reward.
Some things I used to ask that helped me feel more involved:
- What was Charlie's weight tonight?
- How much did he eat?
- What position is he in right now?
- Did he cry last time his diaper was changed?
- Who was taking care of him tonight? Who'd be on next shift?
- What was he wearing?
Consider leaving a disposable camera by your baby's bedside. Ask the nurses to take pictures of him while you're not there. Sometimes they'll capture him doing something really cute, like sucking his thumb. Or pulling out his IV lines.
Instruct your family and friends that no news isn't bad news. You're going to be too busy to keep everyone informed, so it would be kind to let people know that if they don't hear from you, they shouldn't assume the worst. You might want to send out a single e-mail update to a list of loved ones instead of talking to people individually; you might want to change your outgoing voice mail message to reflect current conditions; you might want to designate one person to be the communicator so that you only have to keep that one person apprised. Your choice. You get to decide what information to share and how. If anyone later dares to complain, you are in the perfect position to draw yourself up, assume a look of righteous rage, and bellow, "My kid was in the hospital!" Then key her car.**
Take care of your hands. You'll be washing them a thousand times a day with harsh soap and cold water. (If you can wait for the water to warm before you rush over to see your baby, you're a better woman than I.) You'll be drying them with hospital-grade paper towels. And if you have any tendency to fidget during times of stress, your nails and cuticles will be a raw, bleeding mess. I kept a tube of lotion in my purse; no sooner had the doors to the NICU slammed shut behind me after a visit than I was pulling out my Kiehl's Unusually Rich - But Not Greasy At All - Hand Cream. My hands still felt like I'd been getting a daily manicure with steel wool, lava, and lighter fluid, but it probably would have been worse without religious greasing.
Take clothes for your baby to wear. If your baby is spending a lot of time under bilirubin lights, he won't be able to wear clothing all the time, but once he's able to it's much nicer to see him in an outfit you chose yourself. There was only so much pastel-blue-"I love my Daddy!"-footballs-and-airplanes garb I could stand.
Take a water bottle. In our NICU, no food or drink was allowed in the patient area, of course, but an exception was made for nursing or pumping mothers, who were allowed to drink water. (Any time you're not pumping, you should probably be drinking.) I took a refillable bottle that held much more than the hospital's paper cups. Plus I could smuggle in vodka and no one was ever the wiser.
Take your own Kleenex. You're going to cry, and you're going to cry a lot. Unless you're happy with industrial-strength hospital tissues***, you'll want something softer than 200-grit sandpaper to apply to your rabbity-looking eyes and red-rimmed crusty nostrils.
Yeah. I'm sorry, and I hate it, but you're gonna cry.
_____
* For the love of God, don't key her car.
** Hers, either.
*** And don't rub it with hospital Kleenex. Jesus, what is wrong with you?
Posted by Julie at 05:53 AM in Mama drama | Permalink
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Comments (56)
I just have to say you're a wonderful woman and that alone would make you a wonderful mother, but you still try harder! And, best of all, you are really funny. Really! When Charlie's bigger, he'll really appreciate that, believe me. (Not that I have kids or anything, but I just know. ;) )
I hope things get better and a bit easier, at least (they will) and you have a good time mothering your little miracle. You were not wrong when you wanted him.
Have a nice day!
Posted by: Joana at Apr 12, 2005 7:18:14 AM
My addition would be:
Respect the nurses and doctors, but don't be afraid of them.
Yes, they know a lot about medicine; but they don't know you and they don't know your family or your history. Sometimes they can be wrong, and there is nothing wrong with questioning them or telling them if they've forgotten something or if there's something they don't know.
My little girl has had a number of false diagnoses prenatally and postnatally--achondroplasia, hypochondroplasia, crouzon syndrome, pfeiffer syndrome, and was tested for downs and turners syndrome. The current medical explanation for why she's so small seems to be a concerted "damned if I know."
Also, the nurses were asked not to feed our little girl formula more than absolutely necessary. I have a family history of diabetes, bad allergies and asthma so using breastmilk was absolutely fundamental to me. I found I had to remind the nurses and tell each of them separately that my family health history made formula a risky practice. But I reminded myself that they were there to take care of her and make her healthy; that we were on the same side but that I had information that they didn't. Some parents made little signs to post on the incubators or basinettes to pass on vital info to new nurses at shift changes when they couldn't be there.
In the NICU where my daughter stayed, each baby's chart was hung from a hook near their incubator or basinette. Learn where the chart is kept and learn how to read it. In five minutes you can get every important piece of medical information from the last 24 hours.
I found Ayun Halliday's "Neonatal Sweet Potato" (from her book The Big Rumpus) about her daughter's stay in the NICU cathartic.
Posted by: Andrea at Apr 12, 2005 8:41:20 AM
Julie, I think I love you.
Not in a stalker, hunt-you-down kind of way, but in an oh-how-you-make-me-laugh-and-cry kind of way.
Thanks for sharing your life with the internet. Thanks for the laughter and the tears.
God bless you and your sweet family,
LadyBug
Posted by: LadyBug at Apr 12, 2005 9:28:54 AM
My brother had one son in NICU for 3 months (born at 25 weeks) and, a few years later, the other son in PICU for 4 months. We found that it was essential to keep a treatment diary. If you are getting help taking care of your child in the hospital from friends and family (really necessary if you have more than one kid!), the diary helps keep everyone up to date on how the baby is doing, what medications they have had, etc. It is an important addition to the hospital chart. Julie - I wish we had been able to read this post a few years ago when our family's NICU and PICU adventures started.
Posted by: Oly at Apr 12, 2005 10:02:03 AM
Poignant, personal, informative and funny all at the same time. And we know how much of you it took to get through it. Well done lady.
Posted by: Lala at Apr 12, 2005 10:06:52 AM
I love you.
Posted by: Menita at Apr 12, 2005 10:13:45 AM
Long-time lurker, first-time commenter here. I think you covered all the bases - great job. In our case, our full-term baby was in the NICU for 3.5 weeks after being diagnosed with cancer (neuroblastoma) at 2 days old. We had a 2 year old at home (2+ hrs. away) at the time, which WAS very hard. We spent weekdays at the hospital and went home on the weekends. I would just stress again how important it is to get to know your NICU nurses. They are your lifeline to your baby, whether you're right around the corner or hours away.
At 2 years old, my son is healthy now - after 4 rounds of chemo and a couple of surgeries (not to mention a bazillion scans, biopsies, and other assorted tests). We still have follow-up care at the same hospital and it is SO great to run into the nurses who took such good care of him. There's a level of connection there that you can't understand unless (God forbid) you've lived it.
You're awesome by the way ;)
Posted by: catherino at Apr 12, 2005 10:21:50 AM
I would have to add don't be intimidated by the nurses. Sometimes you get a real bitch. The day nurse who watched my son was one of them. My expressed milk would "disappear" and if I called to tell her to save a feeding for me, she would feed him formula and leave the empty bottle by his bed so I could see it. It didn't matter if I did a surprise visit either, since they had to call the nurses to see if you could come in, and she would make me wait while she fed him. Unfortunately, she was the head nurse for NICU, and everyone I could have appealed to was out on holiday.
I found out why she took such a dislike to me. She apparently has a thing against teen moms, which I found out confronted her about failing me on breastfeeding. (I didn't know I was being graded and of course my son isn't going to be remotely interested in latching on if she had just fed him.) She decided to diagnose me with PPD because I wouldn't confide in her after she decided I was a single teen mom. (Apparently reading my son's charts was too hard, since it stated I was 24 even though I still look 16 or so.)
I was talking to one of the night nurses, and apparently she's always like that with teen moms. She doesn't believe that they should breastfeed because the "irresponsible whores will just give them up anyway". The evening nurse also warned me that the day nurse was fond of calling Social Services on teen moms and to be careful about what I said around her.
The doctors were ok, but they were only on for 48 hours and always wanted to observe my son that long before making a decision. It gets very frustrating to hear "oh, you can probably take him home in two days" for most of 2 weeks. My son was 10lbs at birth, so they'd see that and just assume he was about ready to go home. It was just extrememly frustrating for me, because by the time the person that I could appeal to was back from holidays, my son had been out of the hospital for a week.
Posted by: Kate at Apr 12, 2005 10:24:07 AM
After spending 2 months in the NICU with my daughter who was born at 28 weeks due to preeclampsia, I must say that you are RIGHT ON! I couldn't have written it nearly as eloquently as you have though. My daughter was in a hospital clear across the country (Washington), but the experiences are EXTREMELY similiar.
I'm glad that both of you are doing well!
Posted by: Shannon at Apr 12, 2005 10:50:57 AM
My baby didn't do any time in the NICU, but DH and I still got reptilian hands from the constant washing. Then we discovered Purell Hand Sanitizer. They even have a version with aloe vera in it, and an anti-bacterial lotion. Our baby stayed healthy, and our hands returned to a semi-human appearance (and felt better, too!).
Come to think of it, Purell is an excellent addition to any shower gift.
I'm so glad Charlie came out of this so well. What an effing ordeal.
Posted by: Susy at Apr 12, 2005 11:28:49 AM
My son turns 9 tomorrow... a preemie at birth. He spent 20 days in the NICU. I STILL have very, very vivid memories of him during that time. Makes me tear up thinking back on it.
Posted by: Amanda at Apr 12, 2005 11:38:01 AM
Great job Julie!!
I had 3 in the NICU, Anna for 3 mos, John for 3 1/2 mos and Emma for 6 mos. We had everything happen (including the loss of my son James after 5 days.) Emma was given a less than 1% chance of survival rate. She sure fooled them!! Remember, the doctors are not God and they don't know everything!!
Best thing I did was keep a daily diary of what happend, SATS, meds, tests, etc. Even helped me after they were out of the hospital and they were going to give Anna a vaccination she already had in the hospital (I had it written in my handy dandy notebook!)
Next best thing I did was make up a nurse request list. There were a few nurses I never wanted near my children and gave that to them too. They honored the forbidden list and tried to honor the request list when they could. Don't be afraid to make your requests known.
Jane
Posted by: Jane at Apr 12, 2005 11:47:28 AM
It's me, the NICU nurse, here to say: Julie, that's wonderful wonderful wonderful advice. Well done. You rock.
Posted by: KathyH at Apr 12, 2005 11:54:20 AM
Thanks so much, Kathy. Any pointers to offer from the other side of the relationship?
Posted by: Julie at Apr 12, 2005 11:59:15 AM
You are so right about the sandpaper hospital kleenexes. My husband came up with one solution, because I had a c-section and it hurt to blow my nose: ask for an extra one of the baby nose-suckers and use it on yourself. Yes, I felt a little stupid but it worked.
Posted by: Elizabeth Spinner at Apr 12, 2005 12:09:32 PM
Assign family members or friends to help out—they can do things like clean your house, fill your fridge with groceries or food you can heat up, wash all the baby clothes.
I befriended some other moms in the NICU, and that helped keep me from going off the deep end. I'm still friends with one of those moms now, five years later.
My last advice is to go easy on yourself, Pazel. You can only do what is humanly possible. You can't be in the NICU 24 hours a day, you might not be a champion lactater or breast-feeder, you will cry (a lot), and you will be physically and emotionally exhausted pretty much all the time. Don't put expectations on yourself to do "more."
And now, for the last last advice: Expect that your baby will have ups and downs, and that the first going-home date will be changed to a later date. This may even happen more than once, so it's a good idea not to tell everyone you know, "Junior's coming home this Thursday!"—they'll just freak out when it doesn't happen, and these delays are actually quite routine.
Posted by: Orange at Apr 12, 2005 12:47:51 PM
Sounds like excellent advice. How kind of you to share it.
Posted by: cecily at Apr 12, 2005 1:16:46 PM
Just stating again.. YOU are the mother.. not the nurses! I went to feed one of my twins my expressed milk and it didn't look right to me. I questioned the nurse THREE times and she assured me that it was milk, not formula, that she had not diluted it, and that was all of it. I said, "but it doesn't look right".. She blew me off.. I fed it to him (it was the first time I had ever fed him a bottle).
30 minutes later, back in my room, two women come in and sit me down to explain to me that my baby was given another mother's breast milk! I had been right in questioning it.. the mistake was realized just after I left. I still feel awful that I fed it to him..
TRUST your instinct.. It's your baby!
Posted by: Laura at Apr 12, 2005 1:21:49 PM
Not to try to compare with your NICU ordeal by any means, but my son was in the NICU for a little while after birth and then the next day and i so relate to much of what you said. That is some really good advice. I so ditto you on the nurses thing. I had to go back to the hospital L&D for my 15 day old's re-hearing test and some of the nurses that had attended to him/us stopped to say hi and it seemed that they really did care. Nurses are good folk. (Aside from the one who performed lipo on my veins. sigh)
Posted by: Nina at Apr 12, 2005 1:22:26 PM
Julie, I love to read your site.
I was lucky enough to have 4 healthy children without the aid of medical intervention, so my experiences are so totally different from your. And yet, when I read your stuff, I remember everything about being a new Mom.
You make me laugh and cry at the same time. Your advice is right on. And your perspective is perfect.
Keep on it.
Posted by: G Dawney at Apr 12, 2005 1:24:28 PM
And another one: Don't watch your baby's vital signs, it will only make you crazy. (OK, watch them all you want, but don't say I didn't warn you.) Watch your baby instead.
First, it's more enjoyable, and second, it's more informative. When the alarms started going off at Charlie's bedside saying that he had no pulse or a blood-oxygen level of code blue, the nurse who stepped over to see to him would always take her first look at Charlie, who was usually lying there all pink and happy, smiling to himself for having pulled off his leads yet again.
Which leads to the corollary: Don't listen to the alarms; the nurses will let you know if there's something to worry about. For the first week, I panicked regularly once an hour when Charlie's IV pump started beeping to say, "OK, the current hour's feeding is up; check the chart and dial in the rate for the next hour."
There are so many beeps and bongs and hoots and whistles in the NICU that now, when Charlie is lying in the baby gym or the changing table one of his "musical" toys or a phone or some gizmo starts beeping, and he turns expectanctly toward the sound, I wonder if he's thinking, "Mom? Is that you?"
Posted by: paul at Apr 12, 2005 1:45:28 PM
what a great guide for the NICU! I wish I'd thought of lotion when my dd was in NICU (17 days) - my hands were so raw, though I also found out later that I was allergic/sensitive to the soap that we were told to use. I had a bad case of contact dermatitis within the first week.
Something I wish I'd done that I have seen done with other NICU families is that I wish I'd started taking pictures with something in particular, say a stuffed animal, and then I'd have the pics for comparisons as we went along. I also had a lullaby tape that we kept with our dd, and it was very soothing later on too.
And one last thing, if anyone asks what you need (especially if you're staying at or near the hospital) - ask for snacks for yourself. Hospital food is often expensive. Having a granola bar or juice box available for me was great.
Posted by: Tracy at Apr 12, 2005 2:50:56 PM
My son was only 10 days in Nicu but it were the longest days of my life . In addition on what everybody else has said. Don't expect people to understand how hard this is. I never fully understood why it was so difficult to understand how difficult it was. Now I've experienced a perfecly normal birth and newborn period I understand. The two experiences were so comletely and totaly diferent.... And talk cry and let go... Of course you'll have to be strong sometimes but when you have the chance let the tears flow don't fight them..
I still feel the need to apologize cause our nicu experience was a breeze compared to what others have been through. I found that so hard there that I had the biggest baby of all (42 weeks gestation). Till I found other parents pittied us cause we didn't have any clue what was going on.
Mijk
Posted by: mijk at Apr 12, 2005 3:21:41 PM
My advice is to get to know the hospital social worker. Memorize her number and make her your best friend. I wish I'd done that sooner when my son was in the NICU. The doctors and the nurses were excellent with our son, but not always helpful towards us. The nurses especially weren't allowed to tell us much beyond the charts (which were completely electronic, so no papers to go over).
Our social worker was wonderful at getting the doctors to meet with us, helping us ask questions, and get answers. It's so confusing and overwhelming in the NICU, and she really helped us figure it out and get through it.
Posted by: lisa at Apr 12, 2005 5:14:30 PM
I couldn't even get through reading this without crying a little. Those days of my life still feel like a complete blur and I don't think I've dealt with how scared and helpless I felt. I've just blocked out so much of it -- someday, though, I will sit down and figure it all out within myself. In the meantime, I wish I read your guide before going through it. Thanks.
Posted by: Monica at Apr 12, 2005 5:23:34 PM
Thank you for a wonderful post, Julie. This is sure to help many people.
Our daughter spent 15 days in the NICU, although her situation was nowhere near like that of some other NICU babies. (She was born at 36 weeks via C-section because of breech position and no amniotic fluid.) Nobody expected her to need to stay in the NICU for more than a few days, so as the days stretched on the doctors became more curious as to why she wasn't doing well enough to be discharged. They simply didn't have an explanation for why she was behaving like a younger preemie than she was. This proved to be the greatest frustration for us, as we heard more than once, "You're still here?! I thought you'd be gone by now," from various nurses. So to parents with babies in the NICU I would say be prepared to deal with some comments/behaviors that bother or even upset you. In most cases, though, the people you encounter in the NICU will be helpful and caring, and they all have your baby's best interests at heart.
I also agree with the other posters who said to trust your instincts. On our little girl's sixth day, she just wasn't acting right. She had been starting to have periods of alertness for the previous couple of days, and suddenly she was back to sluggishness and sleeping without rousing readily. This frightened me, because I didn't know what might be happening, but nobody else seemed to notice a difference. Luckily, it turned out that she was just getting jaundiced and needed some time under the lights. But I was able to pick up on a change in her behavior right away that others didn't notice because she was my baby and I was so aware of her.
I love your site, Julie, and I'm glad that things are getting better every day.
Posted by: shaynee at Apr 12, 2005 5:44:33 PM
My aditional advice is to take pictures and carry them with you, so that when 234234324 people ask you about your baby, you can show them a picture right away. You can also look at the picture when you pump or when you feel a little blue.
Speaking of pumping. If your supply is ok, don't bother to pump at night. Pump before bed, pump when you wake up, but save the night pumping for some other time. You need the sleep.
Ask lots of questions - can you eat food from the snack room for moms in labor? Is there a room where you can nap between visits? Where should you pump? Etc, etc.
If you take clothing, toys, or anything else for your baby - make sure it is well labeled. Who knows how long it will take to get that laundry back.
Speaking of clothing - a blanket or toy that smells like baby is a great thing to sniff at before you pump. Likewise, a toy that smells like mommy is a great thing to leave with your baby.
Get to feeding sessions early. Make sure you're there early, because some nurses start the feeds a little early for their convenience and don't double check to see if mom said she'd drop by. Nothing made me cry like missing a feeding session.
It seems like forever, but babies do come home from the nicu. Don't play the "if only my baby would do X, then he could come home" game, because it will make you crazy.
Also, be sure to ask if and when nicu reunions are held. It's great to catch up with the other parents and see all the nurses and doctors again.
Posted by: geeky at Apr 12, 2005 5:45:17 PM
Excellent advice -- it should be given to every NICU mom the first day.
I just want to reiterate what you and others have said -- They may be the experts in medical care, but YOU'RE the expert in your baby.
My daughter was in the NICU for seven weeks, and had trouble feeding because of a cleft lip/palate. Yet the doctors and nurses were reluctant to use the special nipple sent by the craniofacial team -- one said she just "wasn't a good eater' and "needed a feeding tube." But we insisted she COULD use the bottle, and we told them we were trying the nipple no matter what. Within a week, she was taking all of her feeds from it.
Posted by: MelG-F at Apr 12, 2005 6:20:44 PM
Perfect! I want to add one thing to that:
Do not be afraid to advocate for your child's care.
This never happened in the NICU, but in the PICU we had a nurse who was horrible. She did not do her job, and she was the overnight nurse, which meant that she was there without us. We made sure that she got removed from his case because she was not someone we could trust to take care fo him while we were gone. Do not be afraid to talk to the floor director if you feel that your child's needs are not being met.
I have to add that this was ONE nurse out of many, and she was really the only one. Overall the care your baby will get is immaculate. Which is why the bad stands out so well.
YOU are your child's best advocate in the long run - YOU are his voice. Don't be afraid to roar if need be. It works.
Posted by: Chasmyn at Apr 12, 2005 7:12:05 PM
Amen to not being intimidated! With the internet so much information is available at our fingertips. I wish I had this 10 years ago.
One HUGE thing to really think about for those of us that don't get to bring home babies in our arms...is therapy.
I can only imagine how much a good psychiatrist could have helped at the beginning of this rather than a few years in. The zoloft now has worked wonders and I'm a much happier mommy. I do have my triggers when I go back to the hospital with my husband, but that's to therapy we can figure it out when we're going at one another.
It's ok to be a bitch when the doctors are talking down to you! I can now talk kidneys with the best of them...and could hold my own with any NICU nurse out there.
Peace and love to you all...
Christie
Posted by: christie at Apr 12, 2005 8:03:05 PM
One thing I forgot to mention earlier- find out where the Ronald McDonald room/house is. Our hospital had a room one floor down from the NICU, and it was a good, quiet place to rest (no sleeping allowed though) and get something to eat/drink, since they had a fridge with free food. And free internet access for blogging and Googling.
Posted by: lisa at Apr 12, 2005 8:58:16 PM
Nurse and a mom of a 29 weeker five years ago. Beautiful advice, and thanks for the nice support of my profession, we don't hear much of that these days!
A few additional tidbits...
I kept a journal too, wrote in it every day, but I didn't focus so much on the vitals, lab values, etc (probably because I have the education to know what's what anyway) I instead addressed every day as a letter to my daughter, telling her what was going on with her each day but most importantly what I was going through, my fears, the desperation, the love, the whole thing. I have it tucked away and plan on giving it to her when she is an adult.
The other thing I did was more on the practical side. I took thick squares of flannel (about the soze of a washcloth) rolled them up diagonally and taped the ends together to make a soft doughnut to place under her head. This helped prevent the flat sided "preemie" skull appearance when she was older that sometimes happens when a baby's head is just turned from side to side all the time. (If you ever see an adult with a head that's flat on the sides from the face on up and ask them if they were a preemie, nine times out of ten you'll be right!) THis is especially helpful for those babes that are in a NICU for long periods of time like my daughter was. I left a small written note taped to the isolette to remind the nurses to turn her head on the back too, on the doughnut from time to time. She ended up with a beautifully round head.
Get some books on CD or tape to listen to in the car when you're travelling to and fro, and a portable with headphones to have on while you're holding the baby. I did a lot of comedy (Thank you from the bottom of my heart, David Sedaris, you ROCK!) because I felt it important for my daughter to hear me laugh too, especially while kangarooing, and not just sense all my stress and fear.
Finally I also took one of those flannel hospital blankets home and cut it into squares that I would tuck into my bra for the day, and when I went home I would lay it under her head so she would have the smell of me with her during the night and whenever I wasn't holding her. Seeing her nuzzle that every once in awhile was one of the the biggest pick-me-ups that I can remember.
Good luck to all of you who must deal with the trauma of the NICU experience, and to your families as well.
Posted by: Jennifer at Apr 12, 2005 9:41:23 PM
Eat regularly. And if somebody offers you help, of whatever kind, take it. If they offer vaguely to help and you think you can take them up on it, get them to clean your house or make you food.
I still have an extra-warm little spot in my heart for my friend who brought me my methergine prescription so I didn't have to go all the way across Kansas City the day after I (a) gave birth (b) hemorrhaged (c) signed myself out of the hospital 24 hours early so I could go with my baby when he was transferred to the Level III NICU.
Posted by: Julie C. at Apr 12, 2005 9:54:11 PM
Re: the gorgeous 3-day postpartum mom. I was stunned at how good my sister looked right after giving birth. I didn't find out til years later that she had had permanent make-up done!
The hospital my son was born in used to do a NICU reunion. It was really cathartic to talk to other parents who'd been through it and also to see how well their tiny little babies had grown up.
Posted by: sleeky at Apr 12, 2005 11:32:54 PM
Excellent post! My son was in the NICU for 3 weeks. Though he was not premature, I can relate to your post so much. It has been two years now and some of it I remember like it was yesterday and a lot of it is already a haze. You'll never forget, but it gets easier to remember, if you know what I mean.
Posted by: angie at Apr 12, 2005 11:33:08 PM
my daughter was in the nicu for a week... and it seemed like a year. as she is just four months old, it is a very fresh (and still haunting) memory and i need to say this: it was hard. every mother's experience is going to be different, but as i am a student with no car who gave birth 45 minutes from my house, i couldnt afford a hotel near the hospital nor could i be there as much as i wanted to. my baby, who i wanted for years and years and was told i could never have, was FINALLY here, but in the nicu and "a very sick little girl." friends who initially visited us in the hospital always said to me (when i cried after going into the nicu and pointing out her isolette) "aww, she's going to be okay!" but we didnt know if she really was. so those comments didnt help at all. i am rambling and i apologize for that... just know that having a baby in the nicu is a trial and the best course for me was to know the nurses WELL but establish myself as my daughter's mother. it helped enormously to know that i was still the most important person in her care. i dont say that to sound arrogant, but when everyone seems to know more than you, it can be overwhelming, even if all you do when you are not in the nicu is research. remembering that "hey!! I AM THE REALLY IN CHARGE OF THIS LIFE THAT I CREATED!" is what kept me strong. i felt important and not quite so lost. lastly, when i would go into the nicu (while still admitted myself) at 3am and the nurses would say "hey! it's Kai's mommy!" i felt like my child was just that. mine. and these people were helping US. i was still the most important person in the world. i hadnt just gone through major surgery (c-section) and that was that. no, i was a mom.
Posted by: kenya at Apr 13, 2005 3:28:31 AM
I had a daughter for two months in the NICU and two boys (three and one-and-half years old) at home. Hospital care was great, wonderful nurses and very very good doctors.
Other things were less positive. It was quite difficult because here in Israel people have all kind of superstitions (bli eyn harah). Most parents of preemies don't choose a name for the child until she/he is "well enough". IMO, this is a terrible thing to do, it's like putting a condition to the baby. for me, it was important to give her her name and call her by her name and talk to her and about her and assert that I expect her to stay.
Many people here were very surprised about it and even attacked me - I was calling for bad luck on the baby if I behaved normally. Still, I know this was the best thing I could do for her.
Once the doctors even said to me, "call your husband so you can both say good bye to her", but I didn't call him and didn't say good bye to her. I had no intention to let her go!
There were even preemie parents who didn't come to see the babies because they were afraid to bond. This is really terrible in my eyes, to let a child get through this ordeal alone.
I put a picture of us parents and brothers in the isolette. I sang songs to her and talked to her and it helped her. Her oxygen was higher when she heard my voice.
Today, she is a gorgeous, skinny but healthy 11 years old.
http://rungholt.blogg.de/galerie.php?gid=1911&media=5772
I remember the many people who encouraged me, the lady in the hospital cafeteria who told me about her son who made it, and the many people who prayed for us. If you think it will help you, ask friends and family for a prayer line, it helped me to know that there were other people praying for her.
Take pictures and write down what you go through. Today, my daughter likes to hear the stories from her heroic times and she is proud of her strength. I tell her she is special because that's what preemies are. Very very special people!
And yes, I did have to take care of my boys, too. It was incredibly hard but - it's over. My heart is with every family going through this.
Posted by: Lila at Apr 13, 2005 5:45:13 AM
You all should be ashamed of yourselves for making me cry. Thank you thank you thank you for all the advice. And especially thank you to you Julie for writing this and soliciting information for me from all your wonderful readers. They've even come by my humble little blog to offer their support and encouragement and I can't tell you how important that is to me. What can I say? Thank you. Very much. From Matt, Janie, Jack and I.
Posted by: Pazel at Apr 13, 2005 12:24:55 PM
Julie, what a great post. I'm a NICU nurse and it's always so good for me to hear the perspective of the parents.
Posted by: Ren at Apr 13, 2005 5:07:10 PM
I had an older child at home when my son was in NICU, and due to my BP still being seizure-inducing high, was on order to rest as much as possible - lying down.
My ass-vice:
1. Hospitals have resources for NICU parents - CPR classes, support groups, lacatation consultant, neonatologists, specialists, social workers, case workers, EIC referrals. USE THEM. They are there to make the experience bearable for you.
2. If you have an older child, and the NICU rules allow it, take the child to visit your new baby. Children are remarkably accepting and this is often a very confusing time for siblings who are old enough to realize that the long awaited baby isn't home. Involve your older child in helping before the baby comes home, and after.
3. Stay away from google, or any other search engine - it's not going to help matters and will only serve to further terrify you.
4. Purell isn't an acceptable substitute for the anti-bacterial handwash provided by the NICU. As someone who has experienced MRSA first-hand, this isn't something you want to risk transmitting to your baby. Don't bend the infection-control rules.
5. Sometimes it's better not to be there when a procedure is being done. It's just not. You feel helpless and there's no reason to expose yourself to the experience. Like Julie said, the baby won't remember it, but you will. Some memories you just don't need to have.
6. Personalize your baby's environment. Having something familiar when they finally come home is very relaxing for many babies.
7. Bring healthy snacks for the nurses, and yourself.
Posted by: Nance at Apr 13, 2005 10:09:14 PM
When your baby is in the NICU (mine was there for six days before his first open-heart surgery), it was hard to feel that he was *our* baby. It felt like he belonged to the hosptial, and that was probably exacerbated by the fact that he is our first baby. Thanks for this post.
Posted by: Suzanne at Apr 14, 2005 12:28:02 AM
Don't be afraid to ask for a different nurse if you're not comfortable with the one assigned to your baby. I had a nurse one night who gave my son vitamins without mixing them with formula or breast milk like she was supposed to. The result-- he choked on it because of the horrible taste, turned blue, had to be given oxygen and suctioned. As if him being in the NICU wasn't bad enough, a nurse caused him harm. I immediately asked for a different nurse for the rest of the night--one I knew well and liked. Just so happens, the nurse that did that didn't normally work in the NICU--she normally worked in Peds and wasn't informed of the different protocol for the NICU. So as much as they take care of the babies--harm can be caused--beware.
Posted by: Emily at Apr 14, 2005 7:48:19 PM
Find someone you trust, whether the head nurse or your pediatrician, and FIRMLY demand a bottom line explanation and prognosis (if you want it). I found it incredibly stressful to have this nurse saying, "well, I don't like the way this looks," or "he should be eating more," while that nurse was saying, "looks good to me." After days of stoicism we finally threw a completely out-of-character fit and within minutes found ourselves surrounded by the social worker, head nurse, doctor on call, etc and given full attention and detailed explanations. Of course, the fact that the hospital had committed malpractice against us didn't hurt...
Don't be afraid to be a bitch. I have been trained from birth to be polite & respectful, especially to doctors, and even more especially to the doctors and nurses in charge of saving my son's life. When the doctor and nurse insisted that we take my baby out of NICU to spend the night with us (we roomed in the hospital while he was in NICU), we said OK, even though we were anxious about it. The heater was broken in the room, so it was too chilly for our 4 lber to sleep. When I suggested that to the nurse at the 1 a.m. check-in, he blew me off. ("Babies cry, that's what they do.") We were up all night. In the morning, my son's temperature had dropped, and he ended up having to stay a few more days to make up for the low temp., lost sleep and lost weight. WE were scolded, and I do blame myself for not being assertive enough. The next time a doctor suggests that we need to "bond" I will rip him a new one. These people are not going to be your friends. They are not going to let your baby die because you're a loudmouth. Who cares if they like you?
Posted by: Hannah at Apr 15, 2005 12:04:05 AM
Nurses know tons, and they are certainly one of your closest resources, since they're always there, but they're not Gods and they can't fix everything.
If the surgeon is a dick, and all the RN can tell you is 'well, he's a dick,' don't get upset because she can't swoop in and make him not be a dick. She can't do what would be 'enough' at this point; she (or he, I suppose,) can't physically immediately on-the-spot cure your baby to be sent home.
A lot of RNs or Respiratory Therapists are a little too afraid to step in on what may be a private moment, a moment where you don't want people approaching you every five minutes to ask if you're okay. Not that it is wrong to have private moments, but it is intimidating for the staff to just waltz up and offer information pertaining to his care. If you want to know, ask. If they don't have the answer, ask who does. If they don't know, ask a neonatologist or the fellow. You have a right to this information, and if any of it doesn't make sense to you, ask to have it explained; we're not trying to make you feel stupid, it's just that if I had to honestly sit down with you and explain how to interpret an arterial blood gas, it would probably quite literally take me an hour to explain it all, and that would be a primer. I can, however, very much simplify it. It isn't to make you feel stupid. In fact, I feel worse explaining it in more clinical terms since invariably I have to go over something more than once, and I'm afraid that they feel stupid because they didn't get it the first time.
Where was I going with this? Yes. Developing a repoire with your bedside attendants of various breeds (RN OT PT RT SW etc) means that they learn that you're approachable and very interested in learning about your baby's care. It makes them more comfortable sharing information with you.
And as stated before, if you are really not getting along with someone, it is perfectly alright to ask for them to be switched for someone else, whether immediately or in the future.
Posted by: wrin at Apr 15, 2005 4:49:33 AM
I'm a long time lurker...unsuccessful fertility patient, and former NICU social worker. The suggestions are terrific (my favorite of course was to find yourself the NICU social worker) but I have one more...
Don't hold your baby when they do painful things. Don't let them do painful things to your baby while you are holding or talking to him/her.
NICUs are full of painful procedures for babies. You have the opportunity to be a "safe" place for your baby. Don't let him/her associate you with pain.
Pandora
Posted by: Pandora at Apr 15, 2005 4:11:43 PM
Whoa, good one, Pandora. Very good one. Interestingly, no one in our NICU ever offered such a thing, and we didn't ask — I never thought about it, but now I'm glad.
Posted by: Julie at Apr 15, 2005 10:32:08 PM
Pandora's suggestion is a good one I'd forgotten about. My husband is a pediatrician (well, he's in a pediatric subspecialty), and he suggests the same thing when a child is getting shots. He recommends that two nurses give the child the shots--one to hold, the other to administer--and then pass the child to Mom right away. That way, baby associates Mom with "rescuing" him/her instead of the pain of the shot. Definitely a good point for the NICU procedures.
Posted by: Shaynee at Apr 17, 2005 3:00:31 AM
After our 2.5 weeks in the NICU so far (3 months to go) I second Julie's recommendation that if your child is in the NICU for prematurity, the book "Preemies : The Essential Guide for Parents of Premature Babies" by Dana Wechsler Linden, Emma Trenti Paroli, and Mia Wechsler Doron M.D. is excellent. Every time we had a question, I'd turn the page and find the issue addressed. I also found it easier to accept the response that "no one knows" from this book, as they often explain why no one knows what an issue might mean for our child. Staff tend to just say they don't know and leave it at that. Additionally, we're getting used to the variety of opinions that come from staff members, as many of them are contradictory.
I also recommend www.nidcap.com for information on developmental care in the NICU.
Also, somewhat unrelated to NICU issues, I learned a lot about pregnancy and various breastmilk issues from "Having Faith: An Ecologist's Journey to Motherhood" by Sandra Steingraber. For example, I found it really helpful to know that noontime milk tends to be fattiest as we are going to be feeding hindmilk soon.
Posted by: Estefani at Apr 17, 2005 6:39:41 PM
Estefani, I'm so glad to hear from you again. After your last post, I worried.
I absolutely loved that book. Even now I find it useful. The best piece of advice in it? "Don't read parts of the book you don't need — don't read up on conditions your child doesn't have and likely won't get." Of course I ignored it, but it's good advice anyway. Don't go looking for trouble, you know?
Congratulations on the birth of your child, and much courage in the months to come.
Posted by: Julie at Apr 17, 2005 6:52:54 PM
Oh Julie - you've made my day, you really have!!!
Just wanted to comment on what Pandora had to say...when my son Brennan was in NICU we were actively encouraged to hold him and comfort him during blood taking and other painful proceedures - maybe it's a uk thing??
Posted by: Heather at Apr 20, 2005 4:43:23 PM
