How to survive the NICU for Moms and Dads

How to survive the NICU for Moms and Dads

Whether you're there for a short or extended stay, as a parent here are some tips and tricks to make this unpleasant experience and little more bearable.

So you just gave birth and instead of going back to post partum with your bundle of joy, you arrive alone. Day of, bask in what your body or your wife's body has just done, whether it was natural or a c section your terrific! Congratualtions! However if your reading this that may feel like the easy part. Hopefully the NICU stay is due to jaundice, Twins!, triplets!, or a little pre mature, if its more serious that's ok too. Don't stress mamma and poppa, you need your sleep. If you were prepared for your impending NICU stay like we were I am not so sure if that makes it easier or not. We were, but remained positive. 

   The first time seeing your baby in the NICU will be miraculous, there is something about looking upon life you created no matter how many machines, how small, or how traumatic this is, your baby is beautiful and no matter how many googled photos will never compare to your special perfect baby in an incubator or not. 

   The lid on the incubator will be shut depending on how well your baby does with regulating their own temperature and breathing on their own will determine when they pop the top, but with clean hands touch and hold your baby. The heart monitor may rise if baby is excited or lower is baby is soothed. Don't worry about that heart monitor, don't let it stress you because if your stressed baby will feel it. Just take it as a sign that your baby is responding to you. 

   The pic line, now the pic line if your baby has one, it sucks. It really does and pic lines go bad and sometimes need to be replaced. Pic lines will go into feet, hands, and sometimes even the head but don't fret it's necessary accessory it isn't pleasing to the eye however be mindful of it but don't let it keep you from snuggling that baby! Our baby had a pic line in every spot, they all went bad and then we got the dun dun dunnn Broviak line. 

   The Broviak is a line straight into the left or right ventricle of the heart, it is used to give IV nutrition, fluids, and is a tool to draw blood. which if it is a long term thing than it actually relieve some stress because if the do labs it will be pulled from the central line rather than peripheral which is pretty being poked. It will be stitched in and bandaged with a clear wrap like what you'd see on an iv. The wrap will be changed weekly or as needed. The broviak is a great tool and your baby maybe discharged with it. Ours was and still has it to this day. It is different that a port though. As the baby goes under to get it placed and will need X-rays as the baby grows to make sure its in a good place, taking it out is easy.

 Depending on the severity of your baby's case your child will undergo tests weekly or more depending on nessecity. X-rays, blood and gas most likely done on the same day of the week. Sometimes our baby would get 3 X-rays in one day, not the best feeling as radiation is harmful but the amount is much smaller than you or I would be getting. And reward outweighs there risk in most cases. However if you feel the X-rays are excessive speak up always be a squeaky wheel and be an advocate for your child. 

   IN most Nicu's there will be a neonatologist on, the nurse taking care or your baby, the charge nurse, and respiratory therapists, occupational / physical therapists, and a social worker. The social worker really confused me at first, I was like is this like evaluating me to see if I am a fit parent? I got insecure about my tattoos my clothing etc… Boy was I wrong, the social worker is your voice in the NICU use him or her to your advantage. If you don't like what you see, if you don't like the nurse, the drs decision, the care of your child, tell your social worker. If you haven't seen your specialty doctor and are wondering why tell your social worker, and don't procrastinate I made the mistake of waiting to long and the only one who suffers is your baby. You can handle it physically, emotionally, but your baby can't leave so speak up. Be sensible however don't pester them with every little thing, but serious issues need to be addressed quickly. We didn't see our surgeon for 3 weeks in a critical time of care, I didn't speak up until the 4th week, turned out our surgeon was on vacation. Going to be there a while? Set up a conference, know the plan, feel comfortable, write down any questions. Seriously you will forget.

   Nurses, some you will love, some you will hate. Speak up and write down what happened during their time to care for your baby. I believe in energy and if energetically your baby doesn't like someone their progress won't progress. If you can in your Nicu request the nurse you love. If you can't keep asking. If you get a good team of nurses your child will flourish especially when you can't be there. I seriously suggest visiting at night. So many things can happen at night. One time my Sweetheart and I visiting our bby at night. we said we were leaving soon and the nurse left for lunch. We decided not to leave until the nurse got back as their lunch were 30 minutes. The nurse came back 2 hours later. Needless to say She was NEVER our nurse again. More than likely most nurse will be great, and don't feel awkward or discouraged when you see the hellish nurse again, just be happy. You did the right thing. 

   Your baby will be in a pod. Usually 1 nurse to 3 baby ratio. It is nice to see other beautiful babies and meeting their parents is key to your survival. Find your support group there, exchange numbers, face books, emails, etc these people will become your friends, maybe lifelong and their children will fill you with as much joy as your own. If you are in there for the long haul you will see baits go home all the time. This will break your heart, its going to suck, but stay positive you will go home maybe not today maybe not tomorrow, but always sooner than they say you will. 

   They will always give you the worst case scenario in the nicest way possible say to your self F#$% them. You know your baby better than anyone. And they have to give you the worst case scenario always, even if the worst happens and your baby does not make it and this will always be in the back of your mind until your baby comes home, completely normal fear, just don't let it consume you, know that life is a roller coaster there are ups and downs and the beautiful soul you made wasn't ready to come down, but will return to you have peace, release the fact that you don't control everything. As I do not know this pain, I have witnessed this first hand several times and there is light at the end of that tunnel. I promise. But always always always imagine the best possible outcome. And believe it in your heart. One weeks a neonatologist I do not care for told us if we did not go to surgery our baby would have hepatitis and need a new liver. Did she have the right to tell us that no, could of it happened maybe…. we went ahead with the surgery, but don't let these people scare you, the G*d complex is rampant in the Nicu beware. 

 TPN

Tpn is hard on the liver, its necessary evil but children live years on it. It causes jaundice, due to high billy rueben. Push feeds if you feel your baby wants to eat. Push feeds more than often the drs are scared maybe more than you are while they are in charge of your childs life. Be the squeaky wheel, push feeds. 

Put good energy on it. It sucks for some one at any age to be on artificial nutrition. Its a love/hate relation ship hopefully sailing right along as quick as possible. 

I am sure I will have more to add to this in the future, but for now I will leave you with this. 8 months in, tpn all the way, lines, gauze and gloves, it can be fun. And you can make it magical. Don't let the system fail you, you are the system. The technology is simple and overwhelming. Make it your own way, that baby will be the happiest alive if you keep your spirits high. Smile seriously 100% of the time. Ok like 90%, I'm serious! It is extremely hard, its a task of giants. If you think of it as being easy, which it's not I mean whether you have a trach, a gtube, ostomy, a million things!, right? could happen, that you can't control, but this you can. These are the things that will give you power. You will crush each obstacle many or few. Each challenge you all will be stronger, happier, and as you move on and you gain momentum it ail get easier. You will be a pro.  

   

G tube baby blues? turn that frown upside down

G-tube baby blues, Turn that frown upside down.

Mom or Dad worries over their baby, especially a newborn,

every cry, every moan, your baby starts blinking too much and your heart races. One cough can make your stomach turn, so how does it feel when your baby needs surgery? Yes its terrible, you feel guilty, comparing your baby to everyone else's baby, wondering if they will blame you, that you did something wrong. Moms and Dads it is okay. 

If this is your first blog of mine that you are reading here is our background. I was a raw vegan, yoga 5 times a week living in southern California, living the dream with my high school sweetheart of ten years. Yay we're pregnant!!!! Our first ultrasound we found out our baby had gastroschisis, a rare anomaly linked to the pesticide in round up called atrazine, banned in Europe and so many other countries for years. Alas in the American medical field it is considered a fetal anomaly. They called us into the specialist and she prepped a room for termination, My sweetheart and I said No Way Jose your absolutely out of your mind. Our baby was born 6 weeks early in Las Vegas NV by a gastroschisis specialist because the cases of it is more prevalent here than anywhere else in the country. She spent 5 months in the NICU, undergoing 6 surgeries her last one for a g-tube. 

  The photos of Gtubes are hideous, and its not your baby so you don't feel a connection and it will scare you, my advice don't google it unless your strong enough to handle sifting through photos of babies with the gtube. I did it I cried, but then our baby had one and it was nothing to me. No big deal, she was still the most beautiful baby in the world, smiling and happy. Cuddly and silly. You will feel the same way, Don't worry it's normal to be scared and to feel guilty, but remember your baby has it's own way into this world. 

   It's healthy to talk about it, but choose your ears wisely as in my experience some will may make you feel worse. Like my mom would cry if I told her anything, so I'd skip subjects and only tell her happy stuff. Menopause I tell ya, can't wait :) .

   If your Child is in the Nicu and getting a Gtube from birth, heres what you should know. Depending on the severity of the case, success this is great!!! They can now feed your baby and this is wonderful!!!! Our baby didn't eat for 3 months in total it was difficult I'm not going to lie, but you will get through it. 

At first it will be a standard Gtube with a plastic ring around it, don't be scared to hold baby, the cords and lines will be tough but the bonding is so worth it. If your baby has a tube for a long period of time they will replace it with a micki button. It is much smaller and can be disconnected as needed. Much easier for tummy time. Depending on you doctor they will not remove the tube if its flu season, so hang tight! And be an advocate for your child stick with your gut instinct if something doesn't feel right talk to your dr, be the squeaky wheel. In the Nicu the nurses will be responsible for cleaning it, but be hands on just incase your baby comes home with it. Hopefully not, but its better to be prepared. 

   If your baby is coming home with a gtube, here we go! Our baby at first was on continuous feeds at only 3 ccs an hour. A month later she was up to half her feeds by mouth. Your baby will do 300% better once baby is home, and so will you. The first week will be the hardest. In our first month we were at the ER every weekend. Our baby pulled out her g tube. What do you do? Stay calm, tape some saran wrap or something medical you have handy onto the site and off to the er you go. They will pop that baby back in and the calmer and smiley you are the better your baby will do.

If your baby pulls the micki button out, Don't freak it may happen! our baby wrapped the feeding line around her foot and pulled that thing right out at 4 in the morning while we were sleeping on the couch. You have had the gtube class grab that syringe makes sure that the button water basin is intact and holding water, suck out the water pop that right back in or a new micki button if you have one handy reinflate the little bubble and waalaahh! You did it! Crisis averted. It was so scary to me until it happened and it was so easy. I was worried about seeing the hole it's not that bad and you don't see much. 

Feeding through the Gtube at night? Heres my tips and tricks

Use a onesie and put the line through one leg on the side of the crib that the pump will be on. Put a blanket on top of the line so prevent baby from grabbing at it at night. This seems to do the trick even for the squirmiest baby. 

A little tape will do the job also if your nervous. Cut a hole into the onesie and tape that line down.

If your baby is rolling over talk to your doctor about feeding during the day or getting baby off tube asap. If thats not an option for your baby you'll have to check back because ours hasn't started rolling over yet! :)

The silver nitrate treatments?

I'd say no. Talk to your doctor about a neosporin type treatment to stop/heal granulation tissue. We did the silver nitrate once and it was terrible. I didn't think it helped it actually made her tube leak and took so long to heal not to mention it hurts them….. ALOT! 

Triamcinolone acetone cream does the trick for us, I apply it 2-4 times a day and its wonderful. 

The Gtube will have discharge, clean as needed and don't worry its normal. 

One really awesome thing about the Gtube is… If your baby is gassy vent them, vent them often. It really is a fail safe when it come to gas. Also it prevents and helps dehydration since you can feed fluids as needed. Fluids will also help tummy issues. Take is slow though, one time I put 2 oz of pedialyte and our baby vomited all over the couch and me, happy accident though because she had taken iron which cause stomach irritation causing her stomach to bleed. Minutes later she passed two blood clots into her ostomy bag and she pooped red  bloody poop for a night I stopped iron and supplemented with formula. Sometimes  you gotta be the dr. Sucks but ya know what your baby will thank you.

Hopefully your baby just has a gtube, mine has a broviak (line to her heart for iv nutrition) which I will write on in a later post, and a illiostomy bag. If you have these things you're going to do great!!! Why? because if I can do it you can do it, just the fact that you are still reading this proves you are a stellar parent and your baby is so lucky to have you! 

If you have a trach baby I have no experience with this but I will try to get a fellow lung baby momma to write up for you so check back! If you have heart baby chances are you won't leave the nicu til things are a okay!! Our friend Zachary lost his colon and had 4 heart defects, he is now 13 months old after a 4 and 1/2 month nicu stay and is healthy and almost walking eating solids and cutest baby ever! So stay positive, vent often, cry when needed and smile more!

If you have a brain baby keep your head up! Our friend Julian was born at 23 weeks stage three brain bleed on left and right hemispheres. I am proud to say julian has made a full recovery and eating almost to full feeds still in the NICU but hey each baby will make its own way into the world and he has amazing parents that are by his side each day. Stay positive babies are so resilient!

Spend as much time as you can with them but take time for yourself too, stay strong and until next time!

Post your own stories! and email me with questions if you'd like

rachaelplassmeyer@gmail.com