My daughter is almost 6, but wanted to share our story. For the most part I have always heard about these wonderful pregnancies and birth stories. The baby is born healthy and goes home in a couple of days. That’s what I thought would happen after finding out I was pregnant with my little girl. But little did I know it would be 155 days before we would all go home as a family.
My daughter was diagnosed with Hydrocephalus and IUGR when I was 20 weeks pregnant. At 26 weeks I developed Preeclampsia (high blood pressure). I was to be on bed rest in the hospital for the remainder of my pregnancy. At 28 weeks, my blood pressure rose to 210/110! The only way to bring down my blood pressure was to take my baby out. She was born that same day at 1 lb. 8 oz., 12 inches long.
She was our little miracle! My daughter was immediately taken to the NICU (Neo-natal Intensive Care Unit), IVs were placed and she was put on respiratory support. She spent 5 months in the NICU and went through 5 surgeries: shunt placement twice (helps control Hydrocephalus), Retinopathy of Prematurity Surgery (prevents blood vessels from detaching the retina), G-tube placement and hernia repair. She was a fighter and continues to prove so many doctors wrong!
We learned a few things while in the NICU that can be helpful to other parents who may be going through a similar experience.
Ø Bond with your baby. Even if your baby is in an incubator and you can’t hold him/her, you can talk, sing or read to your baby. You can place your hand over baby too. I remember it was hard for me at first because I was afraid of all the tubes, wire and machines she was attached to. I didn’t want to break anything. It wasn't until I first held my daughter (2 weeks after she was born) did I begin to feel the mother-daughter bond. You may also do skin to skin (also known as kangaroo). If you want more privacy you can ask for “room dividers” to block out everyone. Other bonding opportunities can be taking their temperature instead of the nurses, weighing them, changing the bedding, their diapers, etc. Having a child in the hospital means you don’t have the regular experience of being home and bonding, so you just come up with new ways. It made me feel good knowing I was doing the little things I would have normally done if we were at home.
Ø Educate yourself. There are lots of books out there for parents of preemies. A lot of terms will be thrown at you and it’s going to sound like they are speaking another language! I purchased “The Preemie Parents’ Companion: The Essential Guide to Caring for Your Premature Baby in the Hospital, at Home and Through the First Years.” This book was a life safer. I learned all the lingo, all the various things that go on while in the hospital, how to understand monitors attached to my baby, roles of the doctors and nurses, definitions of various diagnosis, etc. It really helped me understand what was going on. And helped me prepare what it would be like once we went home (which was another journey in itself).
Ø Decorate! Hospitals are so blah, so just like you would decorate your nursery at home, decorate the incubator! Bring blankets, pictures, stuffed animals, etc. When my daughter made it to the big girl crib, I brought her Boppy, crib sheets, her mobile, toys and musical bear. It made it a little more normal for me. I bought preemie clothing and beanies and dressed her up as much as I could too ;)
Ø Speak up. Don’t ever be afraid to ask the nurses or doctors anything. This is your baby and you have the right to know. There are no dumb questions. If you feel something is wrong, let them know. You know your baby more than anyone. I literally had to stop a doctor from withdrawing fluid from my daughter’s brain! Had I not stopped him he could have caused severe brain damage to her. I let the charge nurse know and scheduled a meeting with all her doctors and nurses to ensure nothing like this would happen again. And write everything down (nurse’s names, procedures, etc.) because you never know when the information will be needed.
Ø Nurses are important. They are the main caregivers of your child, other than yourself. If you don’t like a nurse you can ask she not be assigned to your baby. I requested a nurse no longer care for my daughter because she did not know how to use a device that was attached to my daughter causing it to drain all the fluid from her brain! Thankfully nothing bad happened to my baby. If you like a particular nurse you can have her be your baby’s main nurse. I had to change nurses a couple of time before I found Cindy. She was awesome. She treated my daughter as if she were her own. I knew she was in good hands when I was not around. She would carry my daughter around in her sweatshirt (kind of like a Baby Bjorn) while she was at her computer or walking around so my daughter wouldn’t be by herself or crying. And it’s always nice to bring goodies like sweets to the nurses ;) They work hard and are caring for your baby 24/7.
Ø Don’t forget about daddy. It’s important for dad to bond and care for your baby as well while in the NICU. As mothers we tend to want to do everything especially when our little ones are sick. But let dad hold, change the diaper, bathe, take temperature, etc. It allows dad to feel important and feel like he is contributing as well. It’s also important for you to spend time with dad. It’s so easy to get consumed with your baby but dad needs attention too, whether it be going to lunch in the hospital cafeteria, walk around the hospital, going out for dinner or even some alone time ;) You both are going through a lot and its important to be there for each other.
Ø Take a break. I cannot stress how important is to care for yourself. I had a break down at the hospital once. I had been at the hospital for 4 days straight while my husband went to visit family in Southern California. One of the doctors made a rude comment and I lost it. I went to the top floor bathroom and was literally in a ball in the corner of the bathroom crying. I realized I needed to make time for myself. I needed to be healthy for my baby. I had to stop feeling guilty for leaving for a few hours and take a time out. So, I would have lunch outside instead of the cafeteria, go out with my hubby to eat, stayed home and watched movies and began attending parent groups held in the hospital. I met some other mothers who were going through the same emotions and it felt nice to talk to someone who could relate.
Ø Ask for help. There’s lots of support from the hospital when your baby has a long stay. We were assigned a social worker to help navigate our time at the hospital. She helped us with setting up insurance, disability, provided us with gas money for traveling back and forth from hospital and linked us to many more resources. Since we lived so far from the hospital (about 100 miles) we were able to live in the Ronald McDonald house. It was like a home away from home: it was equipped with kitchens, laundry rooms (free soap), game rooms, TVs, family activities, holiday celebrations and my favorite, Friday night dinner from McDonalds ;). Depending on your income you may be charged but it’s really inexpensive. We paid $10 per week.
Ø Spend time with family. They will be one of your biggest supports. Whether it be a phone call or visiting with them, they are there. Hanging out with them is good for your soul. They will help keep your mind off all the things that can go wrong, tell you how beautiful your baby is and how even stronger you are as a mom or dad. We lived in Northern California but our families lived in Southern California, so it was extremely hard being away from my mom for my first baby. Initially, I tried to be very brave and strong. I didn't want to feel like I was vulnerable. But in the end I needed my family. Our moms, brothers/sisters, aunts and Nana came up to visit us. And it felt good to be able to introduce our daughter and feel proud to show her off ;) My mom is awesome! She cleaned our house, made us dinner, held my hand when talking to the doctors, she even woke up with me every 3 hours in the middle of the night to pump.
Ø Extras. You can ask for Cuddlers. They are volunteers who will hold your baby while you are not there; When nurses draw blood from your baby’s foot ask for them to put a warm pack on the heel so it’s easier for the blood to draw; Ask for some wipes that feel oily( I forgot what they are called) it helps take off those sticky hospital tapes and will hurt less when they remove or replace them; Ask for “sugar water” for your baby when he/she is in distress from any procedure (blood draw, checking eyes, ultrasound, etc.). It helps distract baby from pain or discomfort; And most important take lots of pics and save your baby’s first diaper, first pacifier, first beanie, first shirt, etc. My daughter’s first diaper was as big as a mini pad! It’s cool to look back and remember how small they were and how far they have come.
I’m sure there’s much more, as I can talk for hours about our experience. But the important thing to remember is that you are not alone. Everyone’s experience is different so thank you for taking the time to read about ours. It’s funny because talking about it is actually helpful to me to talk about one of the hardest times in my life! Thanks Hermamas for letting me share!