Now that we’ve had two babies spend time in the NICU (124 days between the two of them), I wanted to take some time to write a little guide for ourselves and anyone else who may find themselves spending any extended amount of time with a baby in the NICU.
If you have a clue ahead of time that baby might come early, my best advice is to plan ahead as much as possible. Cook and freeze meals, the more, the better. Make sure you have everything prepared for when Baby comes home. Errands are no fun once Baby is born. Figure out a workable routine, find out if you (or your spouse ) can work from home, and set up any extra help or baby sitters.
When Baby Comes
When Baby is born, the first thing to do is take a deep breath and process a little. A new baby changes everything, but a new baby in the NICU really changes everything. Once you’ve had a chance to take a deep breath (and decide on a name!), it’s time to make some phone calls. Announcing the birth of you child is exciting and when Baby comes early it’s even more of a surprise to those on the other end of the line. When I called my mom to tell her that Lydia was born (nine weeks early), she answered the phone by saying, “What do you know about puppies?”. My sister’s new puppy had just hurt her foot and my mom was trying to decide if she needed to take her to the vet. It was pretty comical (later).
If your baby is healthy and doing well, considering the circumstances (just trust what the doctors tell you) make sure you start off every announcement with that information. And halfway through, you should say it again. And then, before you hang up or say goodbye, say it again. Most people don’t know much about premature babies. I certainly didn’t. And they don’t know how critical of condition your baby is actually in.
Believe the Doctors
The first question everyone has about a preemie is, “How long will we have to stay in the NICU?”. Doctors don’t like to give out false hope or unrealistic expectations, and their estimates are usually pretty good. For Lydia, they guessed 6-8 weeks, and she came home in 6. For Abby, they guessed 8-12 weeks, and she came home in 11 1/2.
However, both our girls started out fantastically. Every day we came in to hear praise about how well they were doing. We let it get to our heads and figured, surely, they would be home sooner than the original estimate. But the NICU is a roller coaster with unexpected turns, and both times the doctors were ultimately right. When I asked Dan what his best NICU advice was, it was to listen to the doctors estimate and don’t doubt it even if your baby seems to be doing amazing.
The First Week
The first week always feels like a whirlwind to us. First Baby comes, then there are announcements and visitors. You get to watch everyone’s reaction to your news and share your story. But after a couple of days, and you head home from the hospital, you have to get a plan together for how you’re going to handle your NICU stay. When Abby was born, both my parents and Dan’s parents came down at different times to watch Lydia and help around the house while I recovered. We would have completely fallen apart without that help.
During that week I sat down on Excel and figured out a tentative schedule that allowed us to visit Abby twice a day. We had to see if Dan could get in eight hours of work each day. It turns out he could, but only by working six days a week, getting up early, and going to bed late. If you do this, don’t forget to account for drive time. It was not uncommon for either Dan or I to spend over two hours in the car every day between driving to work, the hospital, home, and Lydia’s Babysitter’s.
Also during the first week, my parents took me grocery shopping. We stocked up on food for the next four weeks. I also got to ride around Meijer in one of their little electric scooters.
It’s OK to Cry
When I have babies in the NICU, I cry. I cry when they are admitted. I cry when they are not doing well. And I cry, even when they are. It’s sad. It’s hard. Your baby is supposed to be at home or in your belly. Not in an isolette. So it’s ok to cry.
I talked to a NICU mom once who had been in the NICU for two months already. They had a long road ahead and I empathized with her. She smiled and light-heartedly told me it was “sort of fun” to have a baby in the NICU. I hid my shock, but in my mid-NICU-super-emotional state, I felt like she had no heart.
I saw another Mom standing at her baby’s isolette, just watching her baby sleep. She was crying. I always liked that Mom after that, because it was so obvious how much she loved her baby boy.
Now, I’m all for having a good attitude and looking on the bright side. But you don’t have to pretend everything is perfect. It’s ok to cry.
Feeding Your Baby
Feeding times are the times you really want to be in the NICU. This is when you get to change your baby’s diaper, take your baby’s temperature, and, once your baby is stable enough, hold him or her. Once babies are over a week old, they usually have their feeding time every three hours.
Mothers of preemies aren’t able to nurse their babies so they have to express milk with a pump to be fed to their baby through a feeding tube. Lactations consultants recommend pumping every three hours, around the clock. I found that it works best to pump one hour after Baby’s feeding time, so that you can be involved with the hands-on part and not skip a pumping time. I also found that, once the milk supply is established and if it’s plentiful enough, it worked well to pump an hour early before bed and and hour late afterward so that you could have a couple of four hour stretches during the night.
Dan and I like to be at the hospital at least twice a day. This way we could each get a turn holding the Baby, and we could often be there for rounds. We got a morning update on how the night went and an evening update on how the day went.
What about Meals?
I’m sure a lot of NICU parents just eat out for every meal during their NICU stay. Dan and I avoided this for two reasons. One: it’s more expensive. Two: It’s much less healthy. And during the chaos of a NICU stay, eating junk won’t make things any better but it can make things a lot worse.
To handle this issue I made a meal plan of fast, easy-to-put-together meals for one week. We ate things like spaghetti, rice and beans, curry with a store-bought sauce, veggies and hummus, and chili (which was the most time consuming meal and I wouldn’t choose that one again). And we repeated it every week until Abby came home. We would go grocery shopping once a month or so to buy the non-perishables. For the fresh produce, we asked a family from church to buy our groceries once a week and deliver them to us at church. They graciously continued to do this for the entire time Abby was in the NICU.
We also had one night a week when we ate Qdoba using gift cards given to us by loving friends from church. Those nights were my favorite. No preparation and no clean up.
With Abby we had another challenge of taking a care of a toddler while visiting the NICU. It worked best for us to bring Lydia once a day and leave her with a sitter during our second visit. Our favorite way to do this was to take her in the morning. In the evening we would eat dinner together and tuck her into bed. Then the baby sitters would come and stay while Lydia slept and we went to the hospital. We had such loving sitters who also tidied our messy living room, cleaned our dishes, and did our laundry. Those nights were also my favorites.
We found that it was very important to spend one-on-one time with Lydia. Snuggling, reading, tickling, talking, and playing were very important because she was getting much less Mommy and Daddy time than before. Sometimes she would scream from her bed at night, but we realized it wasn’t because she was being “bad”, it was because she was having trouble coping with our being away so much. So on those nights I would snuggle her extra until she was ready to sleep.
Get to Know Parents and Nurses
One of the most therapeutic things Dan and I chose to do was to make friends in the NICU. Time in the NICU passes slowly, but having another baby to cheer on helps a lot. Talking to other parents is encouraging, distracting, and helps pass the days. We had a lot of fun celebrating when our friends would move to an open crib or take their first bottle.
It also helps to make friends with the nurses. They are the people you’ll see the most and they are the ones caring for your (very) little bundle. It’s a lot better to have friends watch your baby than strangers. We also discovered that nurses which we didn’t care for at first, grew on us as we got to know them.
Once we transferred to Mott’s, we had trouble getting to know our nurses. It was just a less-friendly atmosphere. So we made an extra effort and brought them chocolate. That helped a lot. We also befriended Russell, the parking lot attendant.
The house is trashed. The sink is full of dishes. The laundry isn’t folded. Take a nap.
Someone just called your phone. A delivery man knocked on the door. You didn’t get to shower today. Take a nap anyway.
Some things just have to wait. Sleep isn’t one of them. Life in the NICU is hard enough without being exhausted. And, even with naps you’re still not going to get enough sleep, so take them!
Turn to Jesus
Even if you follow all of my NICU advice and think of fifteen other helpful things, having a baby in the NICU is still rough. Our greatest source of strength and hope rested in Jesus Christ. God is, after all, the Great Physician, and even if doctors fail, He never will. He knit together that Baby in Mom’s womb, and He can keep knitting that Baby together out of it.
Many times, I felt like everything was falling apart, and I didn’t even know what to pray. But I remember riding in the car, looking up at the night sky and silently crying out, “Help me! Help us! We need Your help!” Sometimes the change wasn’t instant, but He always came. He always helped.
The Roller Coaster Must End Sometime
There were times when I seriously thought Abby would never come home from the hospital. I thought she would just stay there forever, not finishing her bottles, not gaining weight, not keeping her temperature up. It’s silly, I know. But that’s how it felt.
Life in the NICU is a roller coaster ride. There are unexpected turns, and many ups and downs. But, the roller coaster will end. There will be a time when you will stop taking those car rides to the hospital every day. There will be a day when you have time to wash your own dishes and do your own grocery shopping. It’s true, what they say, that there are no kindergarteners in the NICU.
I hope this post will be useful for some. Or perhaps it can give others a glimpse into NICU life. And if not, thanks for bearing with me. If Dan and I have another baby I know that we will, at least, find this to be a great help.
I heard my Mommy and Daddy talking about a blog where Mommy writes things about our life and people read them. I had something to say, so I thought that maybe this would be the best way to do it.
My name is Abigail. Since Mommy writes about our family, maybe you’ve heard of me before. I was born a long time ago, but I just got to come home last week. I love being home! Mom and Dad snuggle me almost all the time. Even Lydia holds me. And I love it when they sing to me. I get to lay in my toy jungle, take baths in my whale bathtub from Nana, and I even get to lay on the floor and stare at the lights on the tree that grew in our living room just in time for Christmas. Except for the snuggling, that’s my favorite.
Well, I wanted to write a little bit on here to say thank you to some people. You see, Mommy and Daddy must always be late for things, because they weren’t ready for me when I was born. While I was all snug and warm in my isolette, Mommy and Daddy were running around like crazy trying to do a zillion things. And they told Mommy not to run around like crazy trying to do things because on top of having me she just had surgery too! Well anyway, Grandma and Grandpa and Nana and Papa all came down and helped watch Lydia and take care of Mommy so she wouldn’t cry as much and so she and Daddy could come see me.
Then my family finally got into a routine, but sometimes Lydia wasn’t very good at the hospital. She liked to push buttons and pull out cords and things. I can’t really blame her. Oh, and she was loud too. And me and the other tiny babies don’t like loud noises. So some nice people from church offered to play with Lydia so Mommy and Daddy could come and play with me. I liked that a lot.
I don’t know what stress is yet, but Mommy and Daddy said they had a lot of it. One night Mommy had so much that she didn’t want to go home and clean everything. I guess she makes a lot of messes or something. But later I found out that the nice lady who was watching Lydia sleep had cleaned up all of Mommy’s messes! Mommy was so happy she almost started crying again (which I don’t understand at all). She said there were two nice ladies who would clean up her messes every time they watched Lydia sleep. Cleaning must be really not fun because Mommy sure liked not doing it.
Sometimes I heard Mommy and Daddy say they were really hungry but they didn’t have time to eat. They must love me a lot because I can’t imagine anything more important than eating. Well some other nice people gave Mommy and Daddy food. It was all cooked and everything. And some other people gave them little plastic cards that turned into food when they took them into a special building called a Qdoba. Well I don’t understand all that, but I know how important it is to eat so I sure am glad other people fed my parents so they could come and feed me.
Most of the things I’m thankful for I only heard about, but there’s one thing I did get to see. A few different times people came to see me! They talked about me and sat with me and even prayed for me. I sure liked that a lot. Mommy and Daddy said lots of people were praying for me. I must be pretty special to have so many friends already.
Well, I don’t know how long these letters are supposed to be but there was just one more person I wanted to thank.
You see, Mommy and Daddy sacrificed a whole lot to come see me every day. But even with all their sacrifices, they were still gone a lot. I wasn’t afraid when they left though. Do you know why? They told me that even when they left me I wasn’t going to be alone because someone named Jesus was staying with me all the time. He sent His angels to watch Lydia when Mommy and Daddy couldn’t be with her and He and His angels took care of me too! Sometimes those really smart doctors made mistakes but Jesus would tell Mommy and Daddy what to do so I was never in trouble. Jesus stayed with me every night. He even came with me when I had to have surgery, and he helped those doctors do a really good job.
Now that I’m home, a lot of those really great people I mentioned aren’t around any more. Nobody comes to watch Lydia and no one cleans up Mommy’s messes anymore. But when I came home, Jesus stayed with me even then. I don’t know if anyone else out there has to stay in the hospital all the time, or doesn’t get to eat because they’re so busy, or has any other problems that make life less fun, but I sure hope they know Jesus too. He can take care of you like no one else ever could.
Well, Mommy’s naptime is almost over, so I better go. Thanks for reading my letter. And thanks to all those people who helped Mommy and Daddy take good care of me.
Gestation: 36 weeks, 2 days
Weight: Not sure…
Feedings: However much she wants by bottle
Between going to church and visiting Abby yesterday Lydia didn’t get laid down for a nap until well after 4:00. And when we did lay her down she was so overtired that she just cried and screamed. Finally I picked her up and sat with her curled up and sniffling in my lap as I rocked in the glider.
Overtired myself, I thought, “I can’t do this anymore.”
For a while my mind continued to list all of the things I have to do and how I just can’t take anymore. Then, it was almost like someone said to me, “What are you doing right now?”
Then that’s all you need to do.
And so, in a simple way I was reminded that God never promises strength in advance for everything we have to do next, but He certainly provides the strength we need for the moment. So Dan and I have been living lately, drawing moment by moment the strength we need from the only One who won’t ever run out.
Are you ready for a crazy weekend?
Friday, I left you all with Lydia sick and Abby about to get an abdominal x-ray. Thanks, I believe, to the goodness of God and lots of prayers, Lydia was sick and better all within three hours. It was a rough weekend keeping her out of the NICU, but it was really only for a couple of days and we made it through. Friday night was almost a disaster for me when Dan went to see Abby and I stayed home with Lydia. I decided it must be a crime to keep a parent from being allowed to see their baby. Lydia and I did some projects together to pass the time and ended up setting up Abby’s bassinet for when she comes home. We made it.
Abby’s x-ray was normal. However, she continued to spit up through the weekend, and she continued not stooling.
On Saturday, while Dan was helping feed Abby in the morning, she got her feeding tube out. Dan quietly suggested that if she was eating well maybe they would just leave it out this time. At the next feeding, the nurse put a new feeding tube in, but Abby promptly got that one out too. So they left it out! At 5:00 on Saturday night the doctor put in order that Abby was to be “Ad Lib”.
Ad lib feeding is usually the last step for NICU babies. It means they have taken their bottles well by mouth (Abby was at 74%) and are close to discharge. It’s usually only 24-48 hours before they go home, once they’re ad lib. During this time, babies can eat any time they are awake and looking hungry within 2-4 hours from their previous feeding time. While their amounts are still recorded, they can eat as much or as little as they want as long as they gain a decent amount of weight.
On Sunday, Abby had lost weight and still wasn’t stooling. She spit up at four feedings in a row. And no one was talking to us about discharge. So Dan and I sat down with a doctor and asked if Abby could just be taken off the fortifier. We did some research on the importance of supplementing calcium and phosphorus for preemies so that their bones mineralize well and we found one hopeful paper that suggesting fortifying is unnecessary. I’ll spare all of the details, but basically this whole topic of fortification is really unsure. Research hasn’t been going on long enough to determine if preemies who don’t receive the fortification may have weak bones as adults. Anyway, there seem to be pros and cons either way. Our doctor agreed to give Abby a trial off of any fortifier to see how she does. They’ll watch her calcium levels and weight gain in the process.
Then Dan and I found out that Abby might have been home by Tuesday as long as she had gained weight. This particular doctor (who is on all week) wasn’t concerned about her spit up or her lack of stools and thought she was ready to go. Dan and I quickly explained that we weren’t set on taking her off the fortifier. We just want our baby home! But the doctor seemed to think it was a good idea to try her off the fortifier and keep her in the hospital in the meantime.
Then we went on to tell us that a recent exam revealed that Abby has a left inguinal hernia. This is very common in men and in preemie boys (about 1/3 of preemie boys have a hernia), however it is less common in preemie girls. Of the 700-800 our NICU sees each year there are usually only one or two. So Abby decided to be one of the two this year. By tomorrow a pediatric surgeon will take a look at Abby and decide if she needs to have surgery quickly (this week) or if it’s less serious and we can wait a couple of weeks.
This weekend, more than ever, I have been tempted to “lose it”. That is why, as I was rocking Lydia Sunday afternoon, I wanted to say “I can’t take it anymore!” But we know that God is taking care of us, and of little Abby.
Hernia surgery, from my best understanding, isn’t too serious. But it is still surgery. We are eager to talk to the pediatric surgeon and find out more about how serious it actually is. Our neonatologist didn’t seem too concerned though.
Today we found out that Abby has been eating about every four hours. In all of her short little life, Abby has never been a very awake baby for feeding times. We always have to wake her up. You may remember our frustrations last week when our nurse wouldn’t give her a bottle because she always “looked sleepy”. We’ve slowly been assuring the nurses that Abby always looks sleepy but she still eats great. That in mind, we thought it might be nice to keep Abby on the three hour schedule. More frequent, smaller feeds might help with the whole spit up issue. And it’s what she’s been doing all along. Once again, our doctor said that sounded fine, so tonight we will switch back to a three-hour schedule and see how Abby does on that.
Between the three hour schedule and the unfortified milk, we are hoping Abby will have less spit up, more stools, and bette weight gain. As long as she is gaining weight, it is still possible she could come home this week. Or, it may take longer for clear results. Or, she may go back on the fortifier and we may have to wait to see how she transitions to that before taking her home.
I’m still trying to gather my edelweis. Right now Lydia is walking around wearing my flip-flops and carrying a reusable grocery bag. She recently walked around the corner and I heard her say, “Dear Jesus, please help Abigail sleeping, grow”. So Lydia is joining you all in your prayers, all of which are edelweis to this Mommy’s heart.
Praise the Lord
We are thanking God for:
-a doctor who will consider our ideas
-no more feeding tube!
-that Abby will do well off the fortifier and on a three-hour schedule
-that Abby will eat well and gain weight
-that Abby will spit up less and stool more
-that Abby’s hernia won’t be serious, painful, or become incarcerated
-wisdom for all the doctors involved