Dear Preemie Mom

Dear Preemie Mom:

I see you. I see you, scared and confused, as you have to leave your baby behind in the hospital because he was early and he needs a lot of help. I see you taking notes as the doctor explains all the machines and sounds that surround your tiny, sweet baby. I see you trying your hardest to take it all in - all the medical jargon, all the dates and times and schedules - but your eyes keep wandering back to your baby in her isolette as you wonder when you will be able to hold her.

I see you driving to the hospital day after day, determined not to miss a second with your little one. I see your shoulders slump as you prepare yourself for another long day of visiting your baby and then leaving him behind once again.

I see you as you get to take your baby home - a time filled with such joy and excitement, and also a little bit of fear. You wonder if you will be able to take care of her like the doctors could. You wonder if you will be enough.

I see you a couple months down the line, rejoicing over having your baby with you at all times but becoming frustrated that your baby needs so much attention all the time. Doctors, specialists, therapists - it seems like your life now revolves around when the next appointment is and how long it will take you get there. You try to remind yourself that you should be grateful, because your baby has had to fight harder than most to even make it this far. But that doesn't always help your frustration. Sometimes it even adds to it. Why did your baby have to fight so hard? Why did this happen to your family? You ask yourself these questions every day but no answer seems right.

I see you at the birthday party for the child of a friend, a child who was born around the same time your own child was due, before they came so early. I see your smile, which is genuine, but it isn't the same smile it used to be. Because while you are happy for your friend and her child, it hurts to see how behind your own child is, and what a long way he has to go.

I see you crying late at night, wracked with guilt and worry and anger. If only you had been able to keep your baby inside a little longer...if only you had insisted the doctors take a second look at the scan... if only you hadn't had so much caffeine or sugar or whatever else you think could have contributed to your baby's prematurity. I see you blaming yourself, wondering what you can do to right this terrible wrong.

I see you decline invitations to playgrounds, to lunch, to so many places that first year. You're so afraid of your little boy getting sick. The doctors told you that this first winter was crucial, that you should not go out unless you absolutely had to. So you sit alone with your baby, knowing that it will all be worth it in the spring.

I see you carefully pack your diaper bag - yours isn't always like other people's diaper bags. You need a lot of hand sanitizer, extra oxygen tanks, some masks that keep germs away. You venture into the grocery store like a soldier approaching a battlefield - assessing risk, wondering how quickly you can finish your task, praying that when you leave, everyone will still be healthy.

I see you stammer and flounder when someone asks you how old your baby is. You know if you give the real answer that there will be so many questions, and you are tired of questions. But to you, giving any other answer feels like a disservice to your child, like you aren't acknowledging all of the hard work she put into coming into this world. So you split the difference - sometimes you tell people the real age, and sometimes you don't. It changes every time you are asked.

I see you wondering if you are the kind of mother your baby really needs. You think that someone else would be much better suited for all of this. All of the therapy and special arrangements that have to be made - you think you aren't cut out for this. You don't know how you will make it through. You look back to the life you had before - maybe you used to work and now you have to stay home. Maybe you want to stay home but you have to work. Either way, it is not the life you planned for yourself. It is not how you imagined having a baby would be.


I don't have answers for you. I wish I did. I want answers for me, too. But I want you to know that I see you. I see you, and you are not alone.

Sincerely,

A Preemie Mom

Good Idea, Bad Idea

I get asked a lot of questions about what our NICU experience was like and what another family with a baby in the NICU can expect. A lot of times I can't really give an answer, because so many things just depend on your child and your NICU and how much Diet Coke you have available to you.

But there are plenty of questions I can answer, and most of those revolve around the theme of "What can I do/say/bring/sacrifice to help?" I have gotten asked that quite a few times recently, so I thought I would post some answers here, Animaniacs style. So - prepare yourself for the good ideas and bad ideas of supporting a friend or family member in their NICU life.*

*These are meant to be helpful but also fun. If you have said/done any of the bad ideas, no worries.

Good idea: Telling your friend you are praying for her.
Bad idea: Telling your friend you are praying for her because she looks fat after just having had a baby.

Good idea: Asking what you can bring to the family during this stressful time.
Bad idea: Showing up unannounced with a mariachi band.

Good idea: Letting your friend vent to you, cry to you, hug you.
Bad idea: Letting your friend do all these things while you secretly try to get to the next level on Candy Crush.

Which reminds me - if you are thinking of inviting me to play Candy Crush, don't. Every time you send me a Candy Crush request, a tiny kitten gets carried away and eaten by a hawk. Think about that the next time you want to get more lives or whatever it is you people do. Think of the kittens.

Good idea: Sending a card to your friend or family member to let them know you are thinking of them.
Bad idea: Sending a card to your friend or family member that you filled with glitter. Glitter is the WORST, do you understand? The. Worst.

Good idea: Asking your friend how her baby is doing, what the doctors are saying, etc.
Bad idea: Asking your friend how her baby is doing while making horrified faces at the responses.

"What do you mean, his oxygen saturation is only 82 percent?!"

Good idea: Telling your friend how cute her baby is.

Bad idea: Telling your friend how cute her baby is while using air quotes around the words "cute" or "baby."

Good idea: Asking if you can visit your friend and the baby.
Bad idea: Visiting your friend and baby for three hours while showing them a ton of hilarious YouTube videos about cats dressed like people.

So I hope that clears things up for you.
















Okay, okay. I will give you a real list. The things we found most useful during our NICU stay were:

- Phone chargers (make sure you know what kind of phone/charger they use!)
- Gift cards - gas stations or nearby restaurants are really helpful! Our hospital had a restaurant in the cafeteria and we got a lot of gift cards for that, which was fabulous.
- Gum. I went through so much gum while Josh was in the hospital that I could have wallpapered our house with the wrappers. Ooh! DIY Pinterest idea!
- Scented hand sanitizer. Hospitals are big on cleanliness (especially in the NICU!) but that hand sanitizer smell really gets old after a while. Fun scents are always exciting.
- Books or book/Kindle recommendations. I read approximately 4730282 books while Josh was in the hospital.
- Water bottles. My friend Hayley brought me a reusable water bottle that was amazing and I still use it. She also brought me a delicious dessert. Bring those, too.
- Change for vending machines or small snacks that can be eaten quickly. Our NICU did not allow eating in the actual rooms so all snacks had to be eaten in the lobby. I'm guessing that's a pretty common rule.
- Cards, texts, emails, Facebook messages - I got cards from family, friends, and total strangers. People emailed me, commented here, and wrote us letters. My aunt Shonda sent a card to Josh several times each month for his entire hospital stay. Those were so awesome. It's wonderful and encouraging to know you're being thought of and prayed for.
- One thing that is helpful to remember: It isn't about you. I don't say that to be harsh, but to help you understand that some days, your friend or family member might not want you to visit. Some days it's literally all they can do to find the will to come sit in that hospital room for yet another day, and returning a text is too exhausting. Sometimes they will want to chat nonstop about their child. I'm not saying you have to let them walk all over you or anything; just realize that it is one heck of a roller coaster and 99% of the time, their responses (or lack thereof) have little to do with you or their opinion of you. It's just exhausting.
- Celebrate the little victories with your friend! My mother-in-law set up an update page on Facebook so we could let people know how Josh was doing, and it filled my dorky little heart with so much joy when people got excited with us because he finally pooped. Their joy encouraged me and I will be forever grateful for it.

Okay, that is really it. If you have any questions, please feel free to ask! But I reserve the right to answer in titles of Britney Spears songs. And to tell you about my Baby One More Time.

I'm hilarious.