What to Say to a NICU Parent

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I’ve never been very good at knowing what to say to someone when they’re going through a hard time. After going through some hard times myself, I realize that I have probably very often said the “wrong thing”. Earlier this week I posted a Survival Guide for others who find themselves spending time in the NICU. But the reality is that most of the people reading this never have and never will spend any time in the NICU. However, everyone reading this knows of at least one person who has spent time in the NICU. This post is for all of you. I know my thoughts won’t apply to every NICU parent. Based on my own experience and conversations with other NICU parents, these are my best suggestions on what you can say (and do) to help a NICU parent.

As I wrote this, I wondered if I was going too far. Having a baby in the NICU is not the most difficult thing in the world. I know there are plenty who suffer far greater trials. However, I still felt the thoughts may be helpful to some. My husband pointed out that much of this could probably be applied to interactions with anyone who is suffering. If you think all this is a bit overboard, feel free the glean the good and forget the rest. And, keep in mind, not everyone is the same and I can only share from my own experiences and conversations with a few others.

“My heart just broke for you…”

What do you say to someone who just had a baby…months earlier than they were “supposed to”? “Congratulations”? “I’m sorry”? “She’ll be fine”? “She’ll be home before you know it”? Dan and I have found that there is very little you can say and be of any real comfort to a newly arrived NICU parent.

After Abby had spent two and a half months at the hospital, Dan was riding up the elevator one day with a crowd of people. One of the ladies in the elevator was in a wheelchair and it came up in conversation that she had just had a c-section and had been transferred straight to UofM with a baby who was now in the NICU. The others on the elevator started offering their support and encouragement.

“Don’t worry. She’ll be fine.”

“You’ll be home before you know it.”

“This is a great hospital.”

“What did you say?”, I asked Dan.

“Nothing. There’s nothing you can say. It wasn’t the right time.”

However, there was one conversation that stands out in my mind as being especially comforting. Lydia had just been born. I didn’t really want to talk to anyone. As we walked into church the following Sunday, I wanted to stay close to Dan and avoid all conversation. I was tired, sad, emotional, and still trying to grasp what was happening. Afterward, of course, people came up to talk to me. One mother at church approached me with tears in her eyes and said, “When I heard, my heart just broke for you…”. It was the most comforting thing anyone had ever said to me.

Now, not everyone has the ability to sympathize in this way. Don’t fake it. If you’re able to honestly share in someone else’s suffering, by all means, offer your consolation. However, in many cases the best you can do is give a well-meaning hug.

Be Careful with Your Encouragement

I recently came across Proverbs 25:20. It says, “Whoever sings songs to a heavy heart is like one who takes off a garment on a cold day, and like vinegar on soda.”

For the most part, I will let that verse speak for itself. Someone who is separated from their tiny newborn baby will often have a “heavy heart”. Happy words may be just what they need to hear, or they may sting like icy wind on bare skin.

Ask Me about My Baby

It may seem like all I talk about is my baby. Maybe you think I get tired of giving everyone the same updates over and over. Maybe you think you should avoid the topic because it’ll make me sad.

But, please, do ask me about my baby. My baby is my life right now. I don’t have time for anything else. When my baby takes a step backwards, doesn’t have a good day, or isn’t making progress, my whole world feels a little cloudier. When my baby makes progress, gains weight, shows improvement, the sun comes out and I want everyone to know.

I know there is a whole world beyond the hospital and the universe doesn’t revolve around me (or my baby), but I don’t get to see that world right now. I will try hard to talk to you about all the other things, but the only thing on my mind lately is that little one lying in a hospital room.

Please Be Patient

I may not seem myself. You just might see me cry. Or maybe I look weary. It’s a hard circumstance to be in the NICU for so long, so please be patient with me.

Please be patient with me if you are pregnant, especially once you hit nine months. I rejoice with you, but sometimes seeing a very pregnant mommy might make me tear up a little. Some good friends of ours had a baby when Abby was a month old. Their little boy was in church when he was only two days old and I cried every time I saw him.

I felt terrible. I was happy for them. But I could hardly talk to them because I would break down. It wasn’t until after Abby was home that I could cheerfully visit and hear all about their birth story and the early days with their newborn. I don’t know if they noticed or not, but I am grateful that they are sweet and patient people who weren’t offended by my distance during those first weeks of their own baby’s life.

If you are pregnant or have a newborn while a friend is in the NICU, be patient if they seem awkward or distant.

Ten Practical Helps

If you do know someone who has a baby in the NICU, you may be wondering what practical things you can do to help them beyond just words. So here are a few ideas:

1. Pray for them. No matter where you live, how much time or money you have, this is one way you can help

2. Do their laundry. They don’t have time.

3. Clean their bathroom. They don’t have time.

4. Wash their dishes. They don’t have time.

5. Do any other tidying or cleaning…I think you get the point here.

6. Bring them a hot meal, a frozen meal, a gift card, a snack…

7. Offer to buy and deliver their groceries. You don’t have to pay for them yourself, just picking them up and saving them the trip will go a very long way. You can give them a bagful of random groceries, or you can ask for a list. Either way, they will probably appreciate it more than they can express.

8. Watch their kiddos…although it’s likely that many will offer to babysit, so be creative and choose one of the above suggestions that hasn’t already been taken.

9. Ask if there is anything you can do to help or bless them. Everyone has individual needs.

10. Visit their baby or send a card or gift. Hospital visits can get long and lonely, you are probably a welcome visitor.

Well, I hope those thoughts are helpful and not offensive or out-of-hand. Dan and I were very blessed by many who did and said loving and encouraging things for us throughout our NICU stays, and we are immensely grateful. In fact, I feel we could never repay many for their sacrificial kindness. And Abby agrees.

Suffering and the Sovereignty of God

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Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves have received from God.
2 Corinthians 1:3-4

Edit: The sermon mentioned in this post is now online in video and mp3

Sundays are the hardest days for me. It was the same when Lydia was in the NICU. I’m not sure exactly what it is…maybe it’s seeing all the families together at church. Maybe it’s all the babies being held by their mama’s when I don’t get to have mine with me. Partly, I think it is the worship songs. Songs that we sing during church are full of deep truths about God: His lordship, His holiness, His sovereignty. They confess that God is in control, that He is good in all He does, and that we are joyfully, willingly surrendering all and worshiping this God. On a typical Sunday these are all fine and wonderful things. However, when you’re struggling through a trial, those truths hit a little deeper and a little harder. You think a lot more before you sing something out loud. Surrendering to God’s control carries a new weight to it because you know that it might mean going through something hard and still confessing God’s goodness.

Anyway, whatever the full reason is, Sundays are my hardest days. When our kind friends at church ask “How are you doing?”, half the time I start crying. Then I have to reassure them that Abby is doing fine, great, in fact. “So, what’s wrong?”

Dan asks me the same thing when I get down sometimes at night, right before I go to sleep. “What’s wrong?” And he is usually rewarded with a drawn out list:

Our sink won’t drain. The garbage disposal is broken.
The handle just fell off our laundry room door.
My peanut butter spatula** is gone.
I’m tired.
Our house is a mess.
And my baby is in the hospital.

**my peanut butter spatula, which I was thrilled to re-discover when we moved after a summer of being packed away, is a thin “icing spatula” that I use to clean out jars, mainly peanut butter jars which we go through multiple times a week. Since the first time I got to use it in this apartment, it has mysteriously disappeared.

The list varies, depending on what new stressors have come up, but I always end it the same. My baby is in the hospital.

And then, at other times, I feel perfectly fine. Sometimes I can prance into the NICU like it’s “just another normal day” and smile and hear an update on Abby. Sometimes it doesn’t feel like a big deal at all. She’s stable, doing well, doctors are pleased, and will be home in a month or two.

Is this suffering?

Prior to our latest discovery during Abigail’s birth, I never really had a reason to grieve. I’m sure I’ve heard loads of sermons, and plenty of Biblical teaching on grief and suffering, but I must never have had enough motivation to really pay attention. Starting the night after Abby was born, I began to wonder what the Bible really says about grief.

Since I know others have suffered far more than me, is it ok for me to be sad?
Do I deserve to be rebuked for being so down?
Is it wrong for me to be hurt when people act like this is all “no big deal” and tell me it will “be over before you know it”?
Am I overreacting?
How much of this really is just postpartum hormones?
Will I offend those people who have suffered greater things?
How do I respond when well-meaning people say things that don’t comfort me at all?
Since our troubles are small to God, is He annoyed that I can’t just “get over it”?

How fitting it was yesterday, when our guest speaker at church preached a sermon on “Suffering and the Sovereignty of God”. Not only was it a fitting sermon, our speaker was a pediatric heart surgeon who operates on babies, has operated on preemies at the very hospital where Abby is, and knows all of her doctors and much of the other staff there. And he is one of those people who has suffered greater things than I have.

But at the same time, he was full of compassion. He spoke with gentleness and kindness and wisdom and truth. Early in the sermon, he made the point: we should never trivialize the sufferings of others. And we should never claim to fully know God’s purpose in allowing suffering into someone else’s life.

And so, in perfect timing, God answered many of my questions. No matter what trial I am going through at any given time, it is the trial which God has allowed into my life for a reason. It may not be hard in someone else’s life, but it will be hard in mine. And God, who created me, knows that and has compassion. God, who sees all and knows deeper love, joy, hope, and pain than I ever will, isn’t offending by my suffering. He offers comfort. And He uses suffering to fulfill His purpose in my life.

As far as others are concerned, it isn’t a ranking system of suffering. Just because someone has suffered more than someone else, doesn’t mean they are special, or stronger (or weaker), or godlier than anyone else. As Christians, we aren’t supposed to compare or belittle anyone’s sufferings. God only asks us to enter in to their suffering, to “weep with those who weep” (Romans 12:15).

I hope that, through this time in the NICU and the disappointment of never being able to have a full-term baby, Dan and I will become more compassionate Christians who are equipped to enter in with others who are suffering.  Even if the suffering seems small in our eyes. Even if the suffering seems like something harder than anything we’ve experienced, something with which we could not honestly relate.

And now, because I know Abby’s fans, followers, and prayer warriors need their update…

Weight: 3 pounds, 6 ounces
Feeding: 30 milliliters fortified to 24 cal every 3 hours given over the course of 1 1/2 hours

Abby had another pleasing weight gain last night. She has been struggling to digest lately, having more leftover milk in her tummy at the following feeding times, and going whole days without a dirty diaper. She has also started spitting up again. For now, we are just waiting it out. She’s still young and small and will, hopefully, outgrow these problems.

Now that Abby is 32+ weeks old, she will start receiving iron in a couple of her feeds. Lydia, when she was in the NICU, hated her iron and it always made her spit up. Preemie’s aren’t able to produce red blood cells on their own without receiving extra iron, because most babies get their iron stores built up from Mom during the last weeks of pregnancy. Abby never got that. So we’ll see how she does with these supplements added to her “salted caramel lattes”.

On a brighter note, the physical therapist stopped by today and took a look at little Abby. She was impressed. Her feet may or may not be improving, it’s hard to tell. However, Abby is “very social”. Most babies favor either their hearing or sight, but apparently Abby is excelling at both. When Dan talks to her, she will turn her head and look at him. At the same time, when she’s awake she is “bright eyed” looking around at everything. Tonight we’re going to bring in some family pictures to put above her in the isolette, so that she can “look at us” even when we’re not there.  (Just a side note: Dan and I recently learned that Lydia’s isolette, her “bed”, costs $45,000.  Yikes!)

Lydia remains the NICU’s favorite toddler. A while ago one of the neonatologists (there are five that rotate) tried to befriend Lydia a little unsuccessfully. Dan informed the doctor that Lydia likes stickers (which are available in ample supply at the reception desk). Yesterday the doctor was back on and brought us two packages of stickers that she had gone out and bought just for Lydia. Originally she bought her some other toy but it was for ages 3 and up, and she didn’t want us to sue her. Lydia happily took the stickers and ignored the doctor. Dan says you just can’t buy her friendship.

Praise the Lord
We are thanking God for:
-Abby’s development: seeing and hearing
-Lydia slept in this morning, which meant Dan got to work a little more and I got to sleep at little more
-answers to my recent questions regarding suffering
-that God is compassionate and gracious to us all

Please Pray:
-that Abby will stop spitting up, start digesting more regularly, and that her feedings will be able to be reduced from 1 1/2 hours long to just 1 hour
-that Abby will tolerate the iron well, and it won’t cause her to spit up more
-that Abby would continue to gain weight and that her exercises would work to straighten out her left foot
-that Dan and I will figure out a better routine now that I am (close to being) able to drive (starting Wednesday)