Preemie Advice

My son was born at 29 weeks 4 days after an otherwise perfect pregnancy. I thought I had the flu. My husband wanted me to go to the hospital, and bam! Two hours later my son was here.

I didn't have time to stop and reflect on the seriousness of the situation because it happened so fast and the pain was tremendous (I opted to not have any drugs for pain). But a few hours later, after my body issues were settled and I was put into a quiet postpartum room, it suddenly hit me. I was one of the only women in that ward who didn't have their baby next to my bed. Physically I felt great (I had a natural delivery with no complications with my body), but mentally I quickly became a mess.

I had big plans for my birthing experience. In fact, I was waiting for the Hypnobabies course I had ordered merely days before to arrive so I could start studying how to have a peaceful, pain-free experience. I had already spent good money on a midwife and was contemplating whether or not to purchase a birthing tub for my planned home birth. I had plans to welcome my beautiful baby in my arms while he was still fresh out of the womb and start breastfeeding.

Such big plans. In those two traumatic hours, I would quickly learn that life doesn't necessarily care about plans.

My son spent 53 days in the NICU. I began to grow attached to the hospital in a way a victim might get close to their kidnapper. In those 53 days I had to learn to live with my heart outside of my body. I had to learn to set aside expectations and adapt to a new life. Most of all, I had to learn to be a mother for my son.

As with any struggle in life, I came out of it changed. My priorities were different. My mind was consumed and my heart enlarged with a kind of love you'd never know until you experienced it. But more importantly, I learned a lot about life in those 53 days.

Lesson #1: Roll with the Punches or the Punches Will Roll You

I conceived my son with such set plans (he'd be due in March, and since I'm a teacher I'd get to be with him until the end of summer, etc). Those plans were immediately dashed with his impromptu January arrival. My husband and I had to scramble to figure out my time off and how I'd be able to stay off. You see, maternity leave doesn't wait for the baby to come home. And since preemies don't have physical maturity like full-term babies, you can't exactly leave them at a daycare with other germy kids. As a mother, you can't exactly leave them at all, but with a mortgage and other bills to pay, life may dictate otherwise.

I had planned to have my sweet baby at my breast immediately after birth, not a piece of cold, hard plastic pump.

I planned to be big and pregnant at my baby shower.

I planned to finish the baby's room.

I planned to show my baby off to family and friends, not be housebound and isolated for fear of the flu and RSV.

I planned to leave the hospital with my husband and baby and flowers and balloons, instead I left my baby behind.

I didn't plan on having to answer questions when people recognized me around town and asked where my baby was, or why I wasn't pregnant anymore.

I didn't plan on having to carry my son around attached to an apnea monitor, having it alarm at the most inopportune times (like the middle of the night).

Plans are good, but they are not set in stone. Learn to be flexible when premature delivery becomes your reality.

Even better, plan to have back-up plans to your plans. An "a", "b", and "c" plan never hurt anyone.

Lesson #2: Take Care of Yourself

Mommies of preemies (and daddies too) need to make sure they take good care of themselves and each other. It's so tempting to want to be at the hospital 24/7. The reality is life outside the hospital keeps going, so you need to too. Food needs to be made, homes cleaned, bills paid, sleep, etc. Striking a balance is essential. For me, I found making a schedule worked best. I spent mornings at the hospital, and then I left by 1PM. I was home before my husband was and was able to get a few things done.

The guilt of "I should be there" never goes away. Trust me, you'll always feel guilty about something. I felt guilty going to my own baby shower because I felt like I should have been at the hospital with my son. If I had to do it over again, I would have taken more "me" time. When you bring your baby home, you're most likely going to be housebound. You need to keep your preemie isolated from the masses because of the flu, colds, and other communicable diseases. So, if I had to do it over again, I would have gotten that manicure and pedicure. I would have gotten my teeth cleaned instead of postponing it so I could spend extra time with the baby. I would have had that nice romantic dinner with my husband.

Don't forget your husband. He's going through a lot too, and a lot of new moms put all their focus into their babies (rightfully so), but (wrongfully) forget the hubby. Make time for each other. Use the experience to build a stronger bond. The alternative is to let the experience rip you apart from each other, and that ultimately won't be good for your baby.

Finally, don't beat yourself up. Many moms (me included) blame themselves when a premature delivery happens. More often than not it isn't your fault. They thought mine was from placental abruption only to later find that it was a fluke infection of the amniotic fluid. Once the birth happens you can't focus on the "why" (until you decide to have another baby, that is). Your focus should be on getting that little baby strong enough to go home.

Lesson #3: Optimism

Easier said than done, but staying optimistic is necessary for your sanity. I've seen so many sick babies in the NICU. Some with heart defects, others with genetic diseases. Some with brain damage. Some with their intestines outside of their bodies. And then I looked at my son, who was very tiny but healthy, and I had to be thankful. Things can always be worse. I kept repeating that to myself.

Limit your googling. You'll find information that will scare the heck out of you for no reason. For example, my son was born with a brain bleed. We freaked out. We started asking the doctor's for the "worst case scenario" (which they seem to always give you anyway) and googling our brains out for information. We discovered that if the brain bleed doesn't absorb and disappear on its own, he may need a shunt in his brain. Imagine how you'd feel thinking of something being drilled into your baby's head! The point is that it healed properly and there was no cause for concern, but we got ourselves hysterical for no reason by doing too much research.

Also, those preemie books the hospital gives you are bad too. I recommend burying it somewhere in your house just in case, but don't waste your time reading about all the disabilities your kid might develop or have. This is a waste of emotions and energy.

Lesson #4: Hospital Networking

If you're going to be a NICU regular for a while, you might as well make friends. Get to know the doctors, nurses, secretaries, even the janitors! It will give you comfort during a time when you feel all alone and vulnerable. Many hospitals even let you pick a "primary" nurse for your baby, giving you consistency and familiar face you can depend on. This is a great thing to have and usually not advertised.

If there are lactation nurses, use them. I bugged the three that worked in our NICU every day! They were amazing, and they were more than just lactation nurses. They were familiar faces I could talk to about anything. I would talk to one every night from 9PM-10PM about everything. When I left the hospital with my baby, I was still talking to them. I even went back to see them. These are the kind of relationships that will make this experience easier to handle for you.

Lesson #5: Put Yourself before Family and Friends

I don't know what it is, but it seems in times of crisis you will quickly discover who the keepers are and who should be put at a distance in your circle of family and friends. Who you think will be the most supportive disappear into their own orbits, and people not on your radar will show up as sources of support.

I had a grandma, aunt, and uncle decide to fight with me four weeks postpartum and in the thick of my NICU experience over their gripe with my mother. I was floored at the lack of compassion they showed toward me and my situation. I ended up losing all of them just to preserve my own sanity. You can't spend energy or time on other people's negativity and drama while you're going through the "preemie experience."

A lot of other people's problems seem to stem from a lack of understanding of the difficulty one goes through with their baby in the NICU for a prolonged amount of time. You can't really understand the impact of the situation unless you're in it. So, I forgave people for not understanding, but at the same time I made a pact with myself not to let them bring me further down with their ignorance and lack of empathy.

Lesson #6: Accept Help

I've always been the independent type, so accepting help was difficult for me. But the thing is, help won't always be around, so you might as well grab it while you can. One of the best things given to me was home-cooked meals. Some of them were fresh, some were frozen for me. It made it so nice to come home from the hospital and have something warm to eat. It was also great to have pre-made meals when the baby came home and I was adjusting to having a new little one in the house (and the lack of sleep).
Other nice things to have help with: cleaning and grocery shopping.

Lesson #7: Find another Preemie Mom's Shoulder to Lean On

This was one of the best things I did for myself. I sought out other preemie moms to share and compare notes with, helping me navigate my way through my own experience. They're out there; you just need to connect with them. I found the Internet to be a great way to find other moms in a similar situation. You may also know somebody in real life but never really thought twice about their situation until you were in a similar one.

Lesson #8: Pictures and Videos

Take loads of pictures. Take video clips. Share them with family and friends. You can make a blog or a website, or even just post them on Facebook. I found that by posting daily pictures of my son for the rest of the world to see, and seeing their well-wishes and comments about how beautiful he was and how strong they thought I was, it was enough of a pick-me-up to get me through the days. It also makes your baby seem "real", which is a difficult feeling to achieve when they are locked up in the NICU and not allowed any visitors (most only allow parents, grandparents, and siblings during non-flu and cold seasons).

Lesson #9: No Expectations

Toward the end of your stay you're going to start getting estimates from doctors and nurses about your baby's discharge day. While their intentions are good, this can lead to a lot of disappointment on your part. You WILL cry the day they change discharge on you. I remember watching a mom about half-way into our NICU stay. Her baby was ready for discharge- or so they thought. I was there when they told her the baby wouldn't be discharged as expected, and she left the room in a flood of tears. I remember thinking to myself "geez, it's for the baby's own good. I will never allow myself to be over-emotional!" Well, when it was my turn to have that happen, I cried the whole drive home. Just take things as they go and don't get too invested in one reality. Your baby will be home before you know it. It seems like forever as you're going through it, but after it's over you'll wonder where the time went.

Remember, you will get through this. Be strong and keep your head clear. Nobody will fault you for doing the best that you can. Someday you'll have many stories to share with your tough little baby