Some of our NICU advice… (We had 25-week micro preemies).
-Don’t let the NICU tell you it’s too stressful to transfer your micro preemie to your chest for kangaroo care. Do it like this! You transfer your own baby! Lean over your baby’s isolette with the sides down. Lift baby a few inches to your chest. Stand up with baby already on your chest. Have a seat. The only transferring baby experienced was being lifted a few inches to your chest! It made me cringe when nurses would pick up my one-pound baby and hold her in mid-air while she about trips over tubes and admires her little body. UGH!! Let Mom do the transfer! Insist on it!
Rules to discuss with staff or print and post:
-If I am not present for AM rounds, the neonatologist is to call me to discuss my baby for the day.
-Do not make decisions about my baby without my consent/ approval unless it is a life threatening emergency and I am not present.
-Please inform Mom/ Dad before starting any new medication, procedure, product, etc.
-No skin products are to be used on my baby without my approval.
-I will bathe my baby. My baby is to stay very clean to avoid staph infections. My baby is to be bathed/ wiped often.
-I will pick out and dress my baby for his/her first time in clothes.
-No RSV shot is to be given.
-I am against over-dosing my baby with antibiotics (this is damaging to my baby’s kidney’s, among other problems).
-I do not consent to cows milk fortifier. Pro-lacta is okay.
-Kangaroo care is PROVEN to be best for baby. I absolutely insist on tons of kangaroo care. Baby is not too tiny or too unstable for K-care. Baby NEEDS Mommy’s skin-to-skin time. I want evidence-based medicine, not personal preferences.
-To keep staph away, dilute one drop of lavender essential oil in a small container of coconut oil. Rub this on your baby daily while no nurses or other staff is near. When someone smells it, tell them that you applied it to yourself. =)
-Apply coconut oil to baby’s scalp/ diaper area daily. (No lavender in diaper area).
-Sneak MCT oil to your baby for weight gain if you’re given the “growth chart talk.” The one where they try to scare you that your baby is not doing well according to their growth chart.
-Giving baby’s cows milk products increases their chance of NEC greatly. (bowel infection). It is very dangerous and baby’s die from this. Giving cow’s milk is a very serious matter. NO cow’s milk for as long as you can!
-Do non-nutritive suckling at the breast as soon as baby is extubated and stable. Insist on it! Don’t take no for an answer!
-Bring your own baby wipes and skin care products (unpetroluem jelly, soap, coconut oil)
-The “just trust us” argument is ridiculous. I don’t “just trust.” I make informed, educated, evidence-based decisions. I know how to read and I have a competent enough brain to understand complex things. I can research well.
-Caffeine causes weight loss. Bring that up if you’re given a lecture on your baby losing weight. “The safety and efficacy of caffeine has not been established past 12 days.” Evidence based medicine.
-Enfamil’s Ferren Sol contains sugar, alcohol, sodium bisulfite, and a not-so-healthy form of iron. Ferrus sulfate is toxic. (Alternative brands have ferrus gluconate which is better).
Some of my and my husband’s facebook posts…
The Best and Worst Things About Being in the NICU for 114 Days (and Counting): (Sorry for the sarcasm on certain points)
-The gift of LIFE from our Mighty Creator, the Giver of life, the Sustainer of life.
-The mighty prayer warriors who care deeply about your baby/ babies! Having so many people coming alongside you in your NICU journey is so encouraging!!
-Making new friends with nurses! So many of them are so sweet, nurturing,gentle and listen to the parents so well. Those are my fave!
-Nurses that aren’t gentle- they may do diaper changes rough, burping the baby roughly, are rough during blood draws, etc.
-Having long, long discussions with nurses about natural living and the dangers of certain medications and vaccines. Teeheehee, they know!
-Having doctors who say things like, “You’re a stay-at-home mom, I’m a doctor, so let me do my job.” Or, “Do you have a medical background? If not, let me do my job, I’m a doctor.” Or, “That study was only for those babies in THAT study, it doesn’t apply to these babies here.” Arrogance is repulsive.
-Having doctors who listen to the parents and tell the parents that the parent is in charge! Praise the Lord for practitioners that listen well and respond well to the parent’s requests! One doctor told me, “You are in charge of me, you supercede me, I have to listen to you.”
-Being transported is the scariest. Such anxiety. Seeing new transports arrive make you sad for the baby and family. No one wants to have their child in the NICU.
-Watching your baby being admitted as a new patient at a new hospital. All of the labs and bloodwork that has already been done at the previous hospital have to be done again. Your baby will be messed with and bothered and poked for 1-1.5 hours.
-Meeting other NICU families. Seriously amazing people walking a seriously hard journey!
-Told that you can’t hold your baby that day because they can’t tolerate it when you know that they can and that they are having a good day. The baby is the same the next day with no changes and that nurse lets you hold your baby for 6 hours straight! Different nurse, different day. Same with feeding… “Oh they are too tired for a bottle today.” “Oh, let’s let baby feed with a bottle and see what she can do today!” And baby eats the whole thing!
-So many times of starting antibiotics “just in case.” Haley has been on powerful antibiotics eight times.
-All of the “just in case” medications and procedures.
-Watching other families get to take their baby home! Nothing but happiness for them, sincerely. You’re just glad they are getting outta here!
-Having your baby’s alarms dinging all day because your baby is really struggling.
-Your baby’s first milestones! Getting taken off the ventilator, getting taken off CPAP, getting off caffeine/ IV fluids/ lipids/ blood pressure meds/ insulin/ steroids/ etc, sucking on a pacifier for the first time, getting to wear clothes for the first time, getting a first bath, eating from a bottle, getting to go in a swing. #SuchJoy
-The frustration of getting different opinions depending on who is on duty that day. Different doctor, different week. One doctor wants to take your child off a medication, the one the next week says we absolutely must leave her on the medication.
-Appreciating the different opinions of doctors and nurses! Refreshing views that come in with new doctors doing rounds.
-Loud alarms that jolt your baby awake, even though the parent is lectured about keeping noise to a minimum for preemies.
-Bringing in your own organic options for baby’s nutrition (instead of getting pharmacy-grade), and the hospital welcoming them! (Multi-vitamin, fortifier, other vitamins that the baby requires).
-Lights being left on their brightest setting by staff even though the hospital sign in the room says that micro-preemies should have the lights dim during the day and dark at night.
-Bringing in your own all-natural baby wipes, soap, skin care products so that your baby is not wiped/ cleaned with extra chemicals!
-Being told to not wake your baby, “sleeping is growing,” but then a staff member from every department comes in all hours of the day and night to bother baby instead of coordinating to do things all in certain time frames so as to let the baby rest the most. It’s pretty much guaranteed that your baby will be awakened four to five times every day from 8am to noon. As soon as baby falls back into a deep sleep, someone else wants to listen to them with a stethoscope.
-Participating in daily rounds to help make decisions for your baby! I’ve come to really enjoy morning rounds!
-Having doctors that want you to be included in daily rounds and won’t leave you excluded no matter what.
-Told that your baby is on minimal stimulation since they are micro preemies (so parents should only put their hands through the isolette to confine the head and feet) but then a staff member rubs their skin or does more touching than is needed for their care.
-Learning the NICU. Learning the normal rates for respirations, heart rate, and oxygen saturations- then when an alarm goes off you know whether to jump up or just carry on. Learning saturations- that your baby shouldn’t stay at 100% saturation, that this causes vision damage and baby needs their oxygen lowered. Remembering to always keep a gel pillow under baby’s head to prevent flat headedness. Always using smaller diapers to help avoid hip dysplasia. Remembering to make sure your baby is rotated onto different sides of their body throughout the day. Reminding everyone who comes in the room to sanitize their hands and the equipment they are bringing with them. Learning how to politely say, “I’m sorry, I didn’t see you sanitize.”
-Being forced to sleep in an uncomfortable recliner just because you choose to be with your baby 24/7.
-Being present 24/7 allowing you to know your baby better and know the medical side of things better so that you can better advocate for your baby.
-Having to listen to other babies WAIL and scream for extended periods of time because the nurse already did her care and baby needs to learn to “self-soothe.” Most cases, if not all, of 10+ minutes of screaming are an adult being neglectful. I’m in a hallway of only curtains and I ask about the babies, I now know this to be true.
-Hearing babies wail and scream during procedures and wondering where their mommies are that could at least stand there and hold a pacifier for them.
-Being THANKFUL that you have spit up on your shirt because it means your baby is EATING!
-Awful, painful eye exams that remind me of child sacrifice. They are THAT awful. Especially when the Opthalmologist doesn’t wait for the numbing drops to take effect and your preemie screams in terror like you’ve never heard.
-Having to sign a consent for surgery that includes risks of seizures, coma, and death.
-Feeling isolated when visitors are not allowed. Not having an advocate with you when you need it the most.
-Storing, preparing, and eating food in a community lounge where your food is all stored in a plastic bag in the fridge or in a locker and all must be properly labeled. Taking it upon yourself to scrub down the inside of the fridge because it looked like it hadn’t been cleaned in a year. Longing to be home in your own kitchen.
-Pumping beside your baby’s bed so that you can release those good hormones to make more milk. Lactation rooms where you’re left staring at a wall are not fun.
-Smelling powerful chemicals that are used, like the EEG glue from two rooms down that irritated my eyes so bad and I had to keep my mouth covered with my shirt. And to think about the effect that has on your respiratory-compromised babies.
-Adhesive tape on your baby’s skin from day one of life until they pretty much go home. So much stickiness and then needing adhesive remover to take it off every other day to change it out.
-Visits from friends that can come and sit and talk with you!
-Babies wailing and alarms dinging when you finally have time to get some sleep.
-Requesting your favorite nurses to be your primary nurses! And being able to list nurses you do not wish to care for your baby.
-Pulling the “mom card.” “Mom said…”
-Positive staff members that present your baby’s problems, but with hope and encouragement!
-Picture day! For the 1 month, 2 month, 3 month milestones, etc!
-Knowing that staph may be lurking all around you and using a paper towel to open doors and turn on faucets, etc.
-One of your worst fears is dropping one of your pump parts into the sink because you know staph is all around you, especially the sink.
-Using breastmilk for oral care when your baby is too small to eat. At least they get their mouths cleaned with breastmilk!
-Crying babies. Knowing that if you can’t be there 24/7, your baby will wail and may not have someone to console and comfort him/her either.
-When the nutritionist tells you that milk is neither gmo nor non-gmo because it’s not a crop.
-When you tell the nutritionist that your babies supplements (calcium and phosphorus) have aluminum as well as propylene glycol in them and she says “At least it’s not going in by IV, their stomach can handle more,” and she wants to keep them on said supplements! Nutrition at its finest.
-The HOPE of going HOME!
We are so thankful that we were present at rounds each morning to participate in decisions for our preemies. You can and SHOULD participate in your/ your child’s health care decisions! If there was anything we were ever uncomfortable with, we would just ask, “Is this something we can decline or delay?” Nine out of ten times, the practitioner would say “Sure, no problem.” The things we asked were reasonable. We never once had to sign a refusal form or go against medical advice. At all. Once a transfusion wasn’t really needed. Once, they offered pain reliever when Haley appeared to be perfectly comfortable. Easy things to forgo. There was a time or two (the fortifier/ formula) that they said they cannot allow us to decline. We politely kept the discussion open with our providers each and every day.
I can’t tell you how many times a nurse or therapist or practitioner praised us for being present and participating and researching. We were making as healthy as possible choices for our preemies in the hospital. We developed such a great relationship with many of the staff members. You don’t always have to follow the standard protocol! And you can be sweet about it! Here are three examples we encountered…
The first one makes me angry at one point but I’ll share anyway. Haley was on a supplement but when I discovered it had aluminum in it, I asked about an alternative. They said they could just discontinue the supplement altogether because her levels were stable anyway, and it’s not something she would be on long term. Yah! Two weeks later we had a new doctor and the new doctor wanted her put back on the supplement. She was fine with us finding an alternative though! But when it was taking us several days to find an alternative, she all of a sudden brought up some old information we didn’t know about as a way to scare us into some x-rays. She said that about EIGHT weeks prior, Haley showed a bone fracture on a routine x-ray. We had NEVER been told about this!! But that a later x-ray showed the fracture resolved. Since the supplement hadn’t arrived yet, she said she’d like to get a 23 x-ray series of all of Haley’s bones because of the report from 8 weeks prior. We asked if this was something we could decline since the fracture was from eight weeks ago and has since resolved. She said that would be fine but that we’d need to get that supplement in right away. No problem.
So practitioner’s are willing to work with you on your specific health needs, don’t be afraid to ask!
But the part that makes me angry in this story… I counted back in my head. Do you remember when I posted the picture of Haley’s very bruised hand after the worst blood draw I’ve ever seen? The nurse who did that held Haley’s arm and hand down tightly with her wrist bent as far as the nurse could crank it down. (I’m cringing thinking about this, I saw it all). The fracture showed up after that. I bet that nurse fractured Haley’s little arm.
Here is another reason you must always question information you’re given. You can’t blindly trust people to always be doing what is best for your health. When I was getting “the talk,” you know, “the formula talk” that all preemie parents get, the neonatologist wanted to put the girls on a cow’s milk formula. (Let me just add… babies put on cow’s milk formula have a much higher chance of the often deadly NEC- bowel infection. It’s extremely dangerous). When I told the neonatologit that I don’t want my girls on dairy, she actually said…
“Cows milk is actually good. It matures the gut of premature babies.” Guys, this is a lie.
She also asked, “Do you eat dairy?” I told her only when I cheat. She said, “Then your girls already get dairy in your milk, it’s no different than the bovine milk in formula.” Also not true! They are sometimes willing to tell you things that are untrue to get you to do what they want!
We did have to budge on this issue but I asked for my own organic option and it got approved. We also researched ingredients in other supplements and were able to get our own healthier options approved!
Lastly, the brain neurologist said Haley needed a shunt. During rounds one day I asked the neonatologist if I can get a second opinion on that and how to go about it. She said, “You don’t need a second opinion, she needs a shunt.” I asked again how to go about getting an outside second opinion. She said, “Well I’ll be your second opinion, she needs a shunt.” Mind you, she’s not a neurologist!!
The neurologist said if we declined the shunt that he’d have to go get a court order to do the shunt operation. So we sought a second opinion! And a third just to be sure! Both the second and third-opinion neurologists said it would be a BAD idea to give Haley a shunt! One of them is the top pediatric neurologist in the country! He reviewed all of her records and images and wrote up a beautiful report on her condition. He was opposed to a shunt for Haley! So we went back to our current neurologist and showed him the reports. He said he will not explore any other treatment options, that he’s only willing to do a shunt. So our only option at that point was to transfer our sweet baby girl to one of these other neurologist. We did. She didn’t get a shunt. She got an alternative surgery that the first neurologist wouldn’t do and then came home and is doing great!
Please question every health decision that is made for you or your child. There is a lot about true health that doctors are not taught in medical school. Up-to-date medical studies are actually available on the… gasp… internet. I am extremely thankful for modern breathing machines and doctors that care about WHOLE health. But that doesn’t mean your child has to receive every drug and procedure that is offered. Many are offered as routine but not necessarily needed. #BeInvolved #Research
You might be a NICU Parent Rebel if…
You read the actual manufacturer’s information and ingredients on drugs and supplements that are being proposed to be given to your baby. And then you speak up about your concerns because you care.
You are present at rounds every morning so that you can actually participate in the decisions for your child’s care.
You are told, “You’ll have to sign a refusal form, I’m sure you’ve seen one of those before.” But you’ve never actually seen or signed one before. Oh, the empty threats.
You want to defend other NICU parents when the practitioner tells you that the reason they don’t explain things to parents is because most parents that they deal with are educated to a fifth grade level. That’s not even true! #WeLiveInAmerica #EducationForAll
-You decline tylenol for your baby because you know that tylenol depletes the body of glutathione, which is what a body needs in order to detox from all of the medications and products they are receiving! Your baby is okay without a pain reliever at this point.
-You decline unnecessary medications that even the doctor says don’t need to be given. Had you not been there, they would have been given anyway. You may or may not have heard about it later.
-You decline antibiotics because you know your baby is well and doesn’t need them “just in case.”
-You quietly turn in your list of nurses that are not to be assigned to your baby any more. It was hard and you felt rude, but you did what was best for your baby.
-When the speech therapist tells you that your baby is too tired to learn to eat and commands you to remove the bottle from your baby’s mouth. And you… just sit there… and continue feeding your baby. She tells you again to end the feeding. You just sit there and feed your baby who is happily suckling with her eyes closed. You and your baby are in tune and you know it. The therapist exits the room. Mic drop.
-You refuse to start your baby back on a supplement that contains aluminum and propylene glycol. Why would we knowingly put these ingredients into our babies?! In the name of nutrition? You do your research and find a pure, healthy alternative and it gets approved!
-You refuse a 23 x-ray bone scan because it was fear mongering. Since you didn’t like the aluminum in their supplement, all of a sudden your child is at risk and needs 23 x-rays. There was NO clinical indication for the x-ray series and the doctor said so!
-You may have broken a record for the most times in one patients medical records that say, “Parents refused.” Yet, you’ve never once put your baby at risk.
-You see skin care products in your baby’s room that you do not approve of so you just throw them in the trash! Your healthier options are already sitting bedside.
-Making the nutritionist and pharmacist really work. Bringing in all of your own supplements and getting them approved. You know that hospital supplements are not actually wholesome.
-You are pro-breastfeeding for real. It was so sad during rounds each morning. Every baby’s parents are told the SAME thing… “Your baby needs extra calories, we need to use formula.” And these are hospitals that have posters up saying they are pro-breastfeeding! Like, even the 10 pound chunker across the hall was told they needed formula for more calories all the while mom was rockin the breastfeeding thing! Don’t say you are pro-breastmilk and then push formula on everyone who breastfeeds!
-You teach the nutritionist and nurse practitioner that their similac and enfamil brands are NOT non-gmo. Read the labels!
-One nutritionist actually said the cow protein liquid they use is neither GMO nor Non-GMO, “because only crops can be GMO or Non-GMO.” You educate her that cows that eat GMO feed make GMO milk. Mic drop.
-You bring up MCT oil when you get “the talk” that your babies are not gaining enough weight and need formula.
-You make friends with the nurses that appreciate your “No Vaccines” sign. There are many of them! NICU nurses see the plummeting of babies after vaccines.
-You dump out countless bottles of your precious breastmilk because they had formula added to them. And then you secretly feed your baby plain breastmilk instead.
-When you’re told that you can’t use organic formula and you have to choose one of the hospital brands, you say, “I’m sorry, I’m not comfortable with that.” You continue your “I’m sorry, I’m not comfortable with that” even when a team of the neonatologist, nurse practitioner, and nutritionist stand over you (while you’re pumping!) to badger you about it. You say it so many times that a rude doctor finally enters and invites you to transfer to another hospital.
-You learn that so many rules and guidelines in the NICU are ridiculous. So it’s up to parents to challenge the system and stand up for what is best for their baby.
-You do all of the above with politeness and class. You hear them out and you politely state your position (sometimes eight times). You leave the NICU with no major enemies, just some battle wounds. You hope that you paved the way for the next parent to come along and have some of the same concerns that you did.
#BeARebelInTheNameOfLove #SweetBabiesDeserveTheBest #MamaBearStrikesAgain #TheyWereHappyToDischargeUs
Here are things you can do and things you should fight for… absolutely no dairy (majorly increases risk for the deadly NEC bowel infection). Many preemies die or need surgery for this infection and most cases can be prevented by not giving these tiny babies milk that’s made for a baby COW. They will force you to use “fortifier” so demand “Pro-Lacta.” You can put your foot down. “Its pro-lacta or plain breastmilk, but I’m not doing formula.”
Also, I highly recommend someone staying with baby 25/7- sleeping in the room. It’s absolutely exhausting but you would be floored by the number of infractions and mistakes it just people not knowing what in the world they’re doing. SO many outside staff (respiratory therapist, ultrasound technicians, X-ray techs, cleaning crew, etc, etc, etc, did not properly sanitize their hands and then touched either my baby or my baby’s bed or something in my daughters room. This is NOT okay. STAPH is everywhere at hospitals!!! My daughter got it TWICE!! Absolutely be the sanitation police!!! It might save your baby’s life. Just a friendly, “I’m sorry, I didn’t see you scrub in.” You do NOT want staph.
Another big game changer that will save your baby from tons of extra intervention is for you or your husband to be PRESENT at rounds each morning. THIS is when ALL decisions are made!!! And if you’re there you can ask them to delay/ or hold off on certain things that aren’t really necessary. And there is a lot that’s not really necessary!!
I put a “no vaccines” sign on the right side of my babies isolettes, where the nurses usually work. And I put one under their whiteboard.
Written by my husband…
Frustrations of a Dad in the NICU
My twin girls were born at 25 weeks gestation. Hannah spent a total of 104 consecutive days in two different NICU’s. Her sister Haley endured 151 days spread between three NICU’s. My wife and I stayed by their bedsides 24 hours per day for the last three months. It was an incredibly difficult balancing act of caring for babies in the hospital, meeting the needs of their siblings at home, and trying to keep up with a full-time job outside the home. Still, we felt it was necessary for the girls to have a parent with them at all times.
Below, you’ll find the notes I recorded in times of frustration and sadness during the oh-so-long days and nights in the NICU. I know that some of you reading this are traveling along the same difficult road and my hope is that you will find some solice in knowing that you aren’t alone. Maybe one or more of my entries will resonate with you. Or maybe you’d like to add some of your own!
I need to say upfront that my wife and I are very thankful for the life-saving medical care our girls received, because without it, we wouldn’t have our two precious angels at home with us now. The flip-side to this, however, is that we also know first-hand how physically and emotionally difficult this journey can be, and unfortunately much of the anguish and hardship is imposed by the medical system that is supposed to be helping them. That built the foundation for what you are about to read.
So, here it is… The notes I recorded every time I had an aggravating, annoying, disturbing, irritating, bothersome, and whatever other adjective you’d like to add, moment in the NICU.
• It feels like I’m in prison. I see other prisoners come in and out of the system. Sometimes I speak to them and ask, “How long are you in for?”
• Why does my baby only get food every 3-4 hours, even when they’re having hunger pangs in between feeding times?
• I can’t believe there’s only one family shower, all the way up on the sixth floor, for this entire 60-bed NICU. The nurse up there didn’t even know they had one when I asked where it was.
• It’s the middle of the night, and a baby has been crying for quite some time. The nurses are complaining about him in coded language since they’re can’t outrightly express how annoyed they are with him. It’s not his fault. He just wants held.
• This chair that I’m allowed to sleep in won’t stay reclined. It’s very frustrating. I have to shift positions about a dozen times throughout the night to try and stay comfortable.
• The nurse today has barely said a word to me. I think she’d prefer it if I weren’t here. It hurts to be unwanted.
• The nurse today wanted to restart an iv that she knew the doctor said could be discontinued in just a few hours. Fortunately, I talked her out of it. What was she thinking? What would have happened if I weren’t here?
• The nurse won’t ask her superior to change an order because her superior is asleep in the room down the hall, and she doesn’t want to be the one to bother her. Isn’t my baby more important?
• The lobby outside the NICU has a musty smell that brings down my spirits every time I walk through it.
• It’s so unpleasant having to leave my baby just to go to the bathroom, and then having to wait at the front desk again for someone to let me back in. Sometimes it takes upwards of 15 minutes, where I’m just standing there, away from my baby, waiting for the receptionist to come back.
• The break area only has a small table that seats four people. Four people. This small table is servicing the parents of 60 babies in this hospital.
• No one is restocking the coffee or supplies in the break area. There are small bits of trash on the counter and floor.
• It feels like I’m being held hostage. I can’t leave until I have everyone’s permission. Even if I feel that my baby is fine. I can’t leave. It’s not my choice.
• My baby has to pass a two hour car seat test because I’m told that is the state standard. I looked it up. There’s no state standard. I’m too beat down to argue.
• I’m going to explode if I’m explained the growth chart again. I’m a small build person. My children are small also. I don’t expect my baby to be at the 50th percentile. Newsflash! Half of the people they used in those statistics are below the 50th percentile. That’s expected. It’s unreasonable and unnatural to feed my baby so much that she makes it to that point.
• Why can’t I have snacks in my room? Am I a child in elementary school again?
• I have now experienced what it’s like to lose my freedom that I’ve always taken for granted. I’ve had nearly all of my parental rights stripped from me. It STINKS.
• If I question a medical decision, I run the risk of offending the nurse or doctor, and then they will require even more intrusive tests, or anything else it takes to teach me a lesson and make me submit.
• Why must the nurse repeatedly wake my baby up from a deep sleep to do her diaper changes and blood pressure measurements? She’s been awake for over an hour without any sign of the nurse, and she just finally fell asleep, but now you want to come in and aggitate her.
• Why does the hospital only provide food for the mothers of babies? Dads need to eat too.
• I can go for hours at a time without seeing any nurse interactions with my baby, but as soon as I step out to use the restroom, I come back to find the nurse sticking my baby with a needle. I’m staying by her side so I can comfort her during the tough times, but the nurses deliberately wait for me to leave!
• If I get too bold with questioning a particular supplement or procedure, they will begin to hint at their power to call CPS. This is beyond evil on their part.
• Why do the doctors occasionally perform their rounds just out of earshot? I can tell they’re talking about my baby, but they’re intentionally speaking just soft enough that I can’t decipher everything.
• There have been four different people in our room this morning to listen with a stethoscope to my baby. They were all within thirty minutes of one another. Is that really necessary?
• It seems that some nurses are so uptight and bitter that they actually want my baby to require treatments and interventions.
• I feel so helpless right now. My baby is in her two hour car seat test and I know that if the alarm beeps even once, they’ll fail her and we’ll have to stay in this place for another twenty four dreadful hours.
• I can’t stand looking at the nasty powders the nurses mix into my wife’s breastmilk. It makes the milk taste so awful and I have to feed it to my baby.
• I politely asked for a roll-around bedside table to put my laptop on, but was denied. The look of bewilderment on the face of the lady I asked is burned into my brain. She just couldn’t believe my request. My face is probably equally bewildered at the fact she wouldn’t accommodate it. After all, I’m the one in a crisis situation here.
• I was actually required to sit in a wheelchair when we finally got discharged. Seriously!?! Why do I need to be in a wheelchair? 1.) I didn’t deliver a baby. 2.) Even if I had, it has been 5 months since she was born, and I’ve been walking around for nearly five months.
• Why do I have to wear a protective gown and gloves for forty eight hours while I attempt to sleep in a recliner all night? I’ve been in contact with my baby every single day for the prior two weeks. And when I’m sleeping in their recliner, I don’t think either of us are at risk of infection. But the policy says, “If you’re in the room, you have to wear the gown.”
• Why is it I’ve seen some of the medical staff take their gloves off when they are struggling with getting tape placed properly? Isn’t that violating their policies? Why is it ok for THEM to violate the policies, but not me?
• It’s sad staring out the window and only being able to see pipes and dumpsters.
• I have to take my baby’s temperature with a dollar store thermometer that never reads accurately. Meanwhile she squirms and hates every minute of it. And everybody already knows she’s a good temperature.
• I’m tired of meeting three completely new medical people every day. And they usually show up when I’m finally able to nap. But instead of getting much needed rest, I have to listen to them explain a bunch of nonsense while I’m running on only two hours of sleep.
• I don’t like being treated like a bothersome worried parent.
• Note to self: Nurses and doctors don’t like people pointing out stupid policies.
• When a baby is showing no signs of infection, and the doctor himself, admits that the lab probably contaminated the sample, does it really make sense to start high-powered, general purpose antibiotics on an already fragile little body?
• Blood test results fluctuate from day to day. Do we really have to add a new supplement every time one of their numbers are a little low? Could we just be a little more conservative and wait one more day?
• I hate the feeling I get when I’m being watched by all the staff when I step out of my prison cell and walk down the hall like I’m the only parent in the whole place.
• I hate having to stand at the entrance of the NICU while waiting for someone to let me in.
• I hate having to say who I am after having been to the NICU every single day for the past two months.
• I hate watching the nurse’s confused look about how they’re going to accommodate my request of staying with my child overnight. I seriously doubt I’m the first parent to want to stay with their baby.
• I hate having to wait all night and day for the doctors to finally make their rounds so I can find out what progress will be made today.
• I hate hearing “No changes for today, we’ll see how she looks tomorrow” from the doctor when my baby is doing well, and we should be taking steps to getting her home. I feel like a prisoner being denied parol by an unsympathetic board.
• I don’t like nurses that are brutish and rough.
• I don’t like nurses that talk so loud they wake up my sleeping baby.
• I shutter every time I hear the sound of my baby’s heel prick. It’s always followed by a wavering lower lip and cry.
• It’s miserable waiting in the surgery area for your child to finish.
• I have a stiff neck today from sleeping in this chair all night.
• I’m tired today because I only had about two hours of sleep last night in between care times, x-rays, ultrasounds, and other various procedures.
• Why am I not allowed to get clean blankets on my own?
• Why do the nurses ask me if there’s anything I need every time they leave the room but when I actually ask for something, they forget to get it?
• I felt bold today and questioned my baby’s protein supplement. I was reminded that if I choose to go against medical advice (AMA), I run the risk of my insurance claims being denied and being stuck with multi-million dollar bills.
• I despise those stupid monitors that don’t pick-up correctly but send off intense, very loud sounding alarms.
• I’m sick of dealing with all the cords and tubes constantly tugging and pulling and getting hung up on stuff.
• My baby HATES the CPAP on her face. She can’t stop clawing at it. I feel so bad for her.
• I’m dumbfounded that I actually watched a nurse tug and pull on my baby’s ventilator tube, moving it about a cm in either direction, and telling me that it was no problem. And then, the very next day I had another nurse chew me out for barely even touching it while I was holding her.
• I can’t believe there is a sign in the lobby that says we’re not supposed to visit with other parents in the NICU.
• They also have a sign saying no cell phone use in the NICU. Really?
• I hate the fear I get when I learn that we may have to transfer hospitals.
• I’m frustrated that every day I adjust the thermostat to make the room warmer but it resets by itself each morning, and freezes my baby and I.
• Why do 99% of the nurses ask me to push the “silence alarm” button while their hands are full, but then I get a long degrading lecture from one of the nurses about the liability involved in that, and instructs me I should never touch anything!
• I’m frustrated that for two months I’ve been told that having my baby satting at 100% is not good for their eyes and lungs, but then when she’s getting close to going home, they put her on 100% oxygen, and tell me that satting 100% is fine.
• I want to stop force-feeding my baby. She’s so stuffed she’s practically exploding.
• Why must the nurses constantly tape and re-tape the ventilator tube on her face even when she doesn’t need it?
• I’m getting very tired of bogus threats about NEC or failure to thrive. I understand how the risk was high for her in the beginning, but it’s not now. They’ll say anything when they feel they need to assert some authority.
• I hate being sound asleep, and then having to wake up at 6:00 AM so that I can discuss the most important decision of my baby’s life when the surgeon steps into the room. Who can be sharp and alert 10 seconds after waking up?
• I hate stepping out of the nicu for 10 minutes to use the restroom and then coming back to find out that I missed the doctor or surgeon stopping by my room to discuss important information.
• I hate having an awake and fussy baby ready to eat but since it’s thirty minutes before they bring the milk, there’s nothing I can do. Then after crying for the whole thirty minutes my baby finally falls asleep just as the nurse comes in with the milk. And of course they put in their chart that the baby is not eating well.
• I hate having to be away from my children at home.
• I hate that we had to endure this.
I know this all sounds very negative, and it is, but remember, it was written during some of the darkest times I’ve ever experienced. After several weeks of being in the NICU, 24 hours per day, even the little things begin to weigh heavy on a person. I’m sure someone out there reading this can identify. I’d love to hear from you, if you do. And, please make additions to this list. It may help others that are in the same place.