Do you have a premie? Tips and tricks from a mom that had 2!
ayla whitehead
Ok, so first off, the absolute scariest thing about having a premie is seeing them like this (pics below). Your mind goes numb and you just quit thinking and just start reacting. People have to remind you to do things like… eat. Then the premie comes home and they seem soooo fragile, so you are so up-tight all the time about germs and pets and smokers and on and on… You are scared they will quit breathing while they sleep so you don’t sleep. You are scared they will need to go back to the hospital so you become paranoid. Life changes drastically.
I gave birth to twins a month and a half before my due date in 2011. I went in for a regular check up (I drove myself, I felt fine, it was just a normal day) and it turned out I was dilated to “a good 4 cm” and I was immediately put in a wheel chair and pushed over to labor and delivery. A couple of hours after they admitted me to the hospital natural contractions began and by that night I had delivered two boys that weighed 5 lbs 2 oz and 5 lbs 3 oz. If I could go back and tell the stressed out me trying to figure out how to keep those two tiny guys alive there is five things I would say to myself:
Cloth diapers with the inserts will be your best friend. Preemie skin is so sensitive and your medical bills will be so high don’t even go for the disposable diapers. You, your wallet, and the babies were much happier with the cloth diapers.
Get a good pump. No matter how many lactation consultants you hire (3 in my case) a baby born too early just has a harder time latching. Don’t even fool with the cheap pumps- they burn out too fast for a full time pumper. OH, and some insurances cover pumps- yes! I didn’t know that until after I bought my third pump (this one was the good one and I didn’t have to buy another one after that)
Vinegar and castile soap will be your best friend if you can’t afford to go all natural for your cleaning/body care supplies. Their skin is so sensitive you want to stay away from anything with sodium laurel sulphate or fragrances (yes most of the baby care items will have soduim laurel sulphate and fragrances).
Soap nuts are the best natural laundry care for little ones. For sure no fragrances or sodium laurel sulphate, they are the cheapest option we found, and they are reusable so they last a long time.
The products you use on yourself will effect the baby. If I used scented lotion and held my son his back would break out. Make sure that your body and clothes are taken care of the exact same way as baby’s. If you are nursing use a natural deodorant (we all know what is in store bought deodorant, none of us would take a bite of a deodorant stick- especially a chemically tainted one, and in case you hadn’t realized your underarms are dangerously close to your breasts…which contain the food for your baby…so yeah…)
Ok, so to start with, having a premie is nothing like having a full term baby (no matter what anyone else says!) Our daughter was four when our twins were born almost two months early and going into labor I thought I new what I was in for- wrong! The biggest difference between a premie and a full termer is all of the "can't dos" that some of the premies experience such as:
1. Some can’t regulate their own body temperature yet so they stay in a heated incubator (it looks like a clear box with two holes in the side)
2. Some literally can't suck yet so they have to be trained on a tiny passifier so they can learn to nurse/drink from a bottle.
3. Some of them have lungs that don't work yet so they have a machine that breathes for them
4. Because they can't nurse and some of them have the ventalator tube for breathing down their throat they have to have a feeding tube down their nose which means you have to pump 24/7 so they can inject it into the tube in their nose.
5. You can't take pick some of them up and take them anywhere you want like a full termer b/c they are in an incubator hooked up to so many cords and machines that moving them is darn well impossible except for diaper changing and kangaroo time.
6. You can't put some of them in a sweet baby bath tub and bath them b/c of all the stitches (if they have them- one of mine had to have central lines ran after the veins in his hands and feet failed) and tubes running into their body so they get very quick sponge baths so their body temperature doesn’t drop too bad.
7. You can't use scented diapers or wipes b/c their skin is so sensitive so you literally wipe their bottoms with warm wet gauze pads and use unscented diapers (I used cloth diapers)
8. If on a ventilator they can’t cry. With a ventilator tube down their breathing for them makes it impossible for the vocal cords to work so they cry a silent heart wrenching cry. Their face has all the expression but the sound just isn't there. So if you dozed off for a moment you may wake up to elevated monitor readings b/c your little one has been screaming his head off for the last 5 minutes and you had no idea.
9. Getting discharged from the hospital for me was one of the most horrible parts mentally. I sat at the corner holding loads of balloons, flowers, and stuffed animals all alone. No babies. Just cold wind blowing in my ears while my husband brought the car around so we could go home and get some clothes. I was discharged, I officially had no room to stay in anymore, and the nicu would not let you stay overnight. The back seat of the car had two car seats but they were empty. You just can't mentally prepare yourself for it.
Once we did get home with the boys things were very different than a newborn. No scented anything. Their skin would break out if it touched anything scented (couches or carpets included). Their skin would break out even after using the baby brand body washes at bath time and laundry detergents so my pediatrician instructed me to wash the babies in only water and don’t use laundry soap when I wash their clothes.
We decided that if we went all-natural that may help the boys not have reactions so often BUT it was going to cost a small fortune to switch everything over! I did the best that I could and started small- one thing at a time.
A vinegar water solution became my floor cleaner, window spray, counter top cleaner, and anything else I needed to clean was cleaned with this.
I started making castile soap with olive oil, water, and lye. Even the store bought castille soap (which was really expensive by the way) had twenty different ingredients and I just didn’t like that. So…I googled how to make castile soap, found the simplest recipe, played around with it a few times, and PRESTO! I figured out how to make soap. The bars of castile soap got grated down and made into laundry detergent, we used it for dish soap, shampoo, body wash, face wash, and honestly… dog wash. So I had knocked out most of my chemically loaded cleaners with vinegar and castile soap.
The carpets were still not working for me though. I didn’t want to chance the scented powder irritating their skin so I mixed up baking soda and a little powdered cinnamon to use as a carpet refresher. It was wonderful! I still hadn’t discovered essential oils yet but I did put all of my lemon peels or orange peels in the jar with the baking soda so in the summer my carpet refresher would have a summery smell verses a winter smell. It was great! Things were turning around!
As the boys got older it got harder and harder for me to have time to grate the soap for laundry detergent. I asked my pediatrician what the most natural laundry soap was and she recomended soap nuts. I didn’t really know if they would work or not so I went to the local health food store and got a handful to try. I was sold! I didn’t have to grate the soap anymore, the soap nuts were re-useable so three nuts were getting me through four to five loads of laundry! It was awesome! Cheap, effective, not a trace of soduim laurel sulphate or fragrances, and you can use them in the dishwasher too. I had found a winner!!!!
Now, if you have a premie that requires medical procedures or is not responding like they should be…let me share my story of hope. Because if it wasn’t for another mother in the NICU, with a 6 month old heart surgery baby who still wasn’t responding like she should have been, who let me know one day in the hallway after I had cried my eyes out in the bathroom because we were not sure that our son was going to make it through the night (the bathroom is the only private place you can go with all the nurses constantly monitoring the baby) that I wasn’t alone, that everything would be alright, and sometimes you have to have a bit of faith to get through the bad days, I don’t know if I would have made it through that experience.
So, my O.B. was the most amazing doctor in the world, BUT the hospital I birthed them at turned out to be horrible. The hospital didn't have anywhere for the preemie parents to sleep at overnight once mom was discharged and they wouldn't let you stay past visiting hours which ended at 10. They would tell you to go home and get some rest and come back in the morning- ummmm, no! One of my boys was doing better than the other. One could breath on his own and only required nasal canulas but the other needed a C-pap machine to force air into his lungs because he literally couldn’t inflate them on his own.
One night the staff mis-set the C-pap which put so much air pressure in one of my preemie's lungs that it literally ruptured one of them. I was sitting with my other son at 5:30 am. No one had told me about the issues with my other son- I just thought he was sleeping. The healthier baby was awake and moving so I spent the morning with him. Around 6:00 am the neonatologist came in for his shift and was informed about the situation with my son. I went over to listen and the nurses told me to “please tend to your child ma’am, I’ll be over to help you if you need it in a moment”. I will never forget the look in her eyes when I told her he was mine too. By this point he was in critical condition. They were moving fast. In to x-rays, out to view them, trying to run more IVs with no luck…it was crazy. No one had helped him that previous night except the nurse on shift and her skill set was obviously lower than what my son needed. He was actively bleeding out into his chest cavity, he had a huge air mass on the right side where the c-pap stayed running after they re-set it so his insides were under immense pressure. By this point is veins in his hands and feet had failed so he needed central lines ran through his stomach, stitches to hold those in, he had a chest tube placed to drain off all the blood / relieve the pressure in his chest, and he was being critically transported to the top children's hospital in all of middle TN. He had quit responding to any stimulation, he wouldn’t open his eyes all the way, he wouldn’t even try to cry. The hospital was loosing him. It didn’t take long for “Angel” (the ambulance that takes the kids to Vandy) to arrive and pack him in the portable unit. Then that horrible hospital’s neonatologist had the nerve to tell me the other baby couldn't go b/c he "wasn't sick enough and there isn’t really a need to move him". I was livid. I told him that he would be hearing from my lawyers and he told me that was fine but I consented to everything that happened with my son when I signed the consent to treat form (which they make you sign prior to delivery). Furious wasn’t even the word. I was so mad I was numb. Which one do you go with? The one who may not make it through the night or the one who is stuck at the place that almost killed the first one? How do you pump for two babies who are an hour away from one another? Luckily my mom stepped in and with in a day had the other one transferred too (at a $7000 "non-necessary" ambulance ride! Oh that hospital was horrible!) It took weeks but my little guy did pull through. He had years of breathing issues. We had a portable nebulizer and a pulse oximiter to test his oxygen levels regularly. By the time he was three his health issues had cleared up totally and now you would never know he was as bad off as he was.
OK, so that was a lot of stuff to read through. I thought it was important to give my detailed story so you could know that you are not alone. Know even though your brain is shutting down from not knowing what to do all you have to do is just keep on breathing. Keep on watching your little one. Keep on talking to them. Remember to eat. Try and get a bit of sleep now and then. Remember to shower. You will survive this. These basic things most people instinctively know to do will leave your mind when you become focused on your little one. Just have a bit of faith.