// N I C U d i a r i e s : J E S S 'S S T O R Y //

Thank you, Jess, for sharing your story with us.  She points out right away that all babies are miracles. I completely agree with that and would add that babies are also resilient. I think it is a great testimony to the resiliency of babies, and human life, that despite such a risky situation little Juliette was born in such great health! 

NICUdiaries is place that celebrates the progress made by babies who have had a rough start to life.

 Anyone is welcome to share their story here. 
If you have a story you'd like to share feel free to email me annagcoyne@gmail.com

The views expressed are those of the guest writers

 and do not necessarily reflect of the views of  k n i t o n e y a r n o v e r. 

Juliet came into the world like a firecracker, despite everyone's best efforts to stop her.  I feel like our NICU journey starts at the moment we found out I was pregnant, although we would have never imagined this would be our story.

She is literally a miracle from conception (as all babies are). My first pregnancy had been a breeze. I felt amazing and had none of the normal pregnancy induced side effects like morning sickness.  In December 2012 after an easy labor and delivery I gave birth to a 41 week, 8lb 3oz clone of my husband, Jaslyn Jean. We were smitten.  Since I was exclusively breast feeding, I chose to use a Paragaurd IUD as birth control.  My plan was to leave it in until Jaslyn was about 18 months old and then we would try for baby #2. 

Fast forward to October 2013.  Jaslyn was 10 months old and I was working full time and finishing my doctorate in nursing.  I was unnaturally tired and just generally felt poorly, but I had a new baby and crazy stress and responsibilities, so I wasn't concerned. My mom kept telling me I needed to take a pregnancy test, but I kept reassuring her the Paragaurd was one of the most effective forms of birth control and there was no way I was pregnant. Plus, I was still exclusively nursing Jaslyn and we had to use some fertility medication to even conceive her -- there was no way I had randomly gotten pregnant with all of those things working against a baby.

My mom finally convinces me to take a test, which is positive, but a pregnancy is impossible because I have this very very effective form of birth control.  I go to my OB, who also thinks the test was likely a false positive or maybe I have a tubal pregnancy.  We immediately go for an ultrasound which reveals....

One healthy, viable, 10 week old fetus.  Say what?!?!

Since my doctor had never had this happen to a patient, we did not really know what to expect.  I went to WVU to see a high risk perinatologist, who tried to remove the IUD but was unsuccessful.  Somewhere in the course of 3-4 days the IUD had moved from my cervix to the top of my uterus, above the baby.  And there it remained for the remainder of the pregnancy.

My pregnancy progressed mostly as normal with no major compilations through 7 months. There was a risk that the IUD would move closer to the cervix as the pregnancy progressed and that premature labor might be a risk.  There were lots of women, however, who had delivered fullterm babies with an IUD.  I felt terrible though. Constantly tired. Horrible hip and back pain.  Nausea and vomiting. Nothing like my first babe. The Sunday of my 30th week, I started having contractions. Over the next few days I made multiple trips to the labor and delivery unit but was always sent home and advised to continue bedrest.  On Wednesday, my third trip to L&D ended with my water breaking and me being transferred by ambulance 2.5 hours from home to a large hospital with a NICU. From Wednesday to Saturday the doctors worked to keep my baby from being born. On Saturday morning, they could do no more, and after a wild unmedicated labor, Juliet Todd Wooten made her way into this mad, mad, world. 

Juliet was admitted to the NICU for prematurity alone.  By the grace of God she did not suffer any complications from the delivery or have any major medical problems.  At just 31 weeks, she weighed 4 lbs 1.5oz and required no ventilation or oxygenation.  For the first three days of her life she received IV fluid and prophylactic antibiotics.  She was also under a bili light for jaundice for days 1-4.  My baby was 4 days old before I ever got to hold her.  She sat in her little incubator with her tiny Ray-Bans and basked in the warmth and stillness.  She did not cry. 

I cried.  I cried all day for at least the first week.  I was scared.  Even if she was healthy, no one was holding her, comforting her.  What if she was distressed but the nurses were too busy to go to her.  How could I stay by her side and still continue to take care of my 15 month old at home? I was tired, so tired. 

I feel like the NICU experience is just like a job.  You have a baby, and instead of resting, starting maternity leave, snuggling with your new little one surrounded by all those you love, you get up and go to work.  You and the baby both.  Your baby works hard to grow. Learns to suck, swallow, and breathe.  You wake up the morning after your labor, pack your breast pump, and head to the office.  You sit there and stare at her, only taking breaks to pump and pee.  You leave at night, without the baby that brought you there, lie sleepless in a strange bed, waking every 3 hours to pump, and then do it all again the next day.  I struggled with how often I should be at her bedside.  The doctors told us we couldn’t be with her all the time.  We needed to take time for ourselves and our other daughter.  I needed to heal from my crazy birth experience.  But every time I left the nurse said “When are you coming back?”  I know they meant nothing by it but I felt so accountable.  So guilty for being outside the hospital walls while she was within. 

And in the end, we are the lucky ones.  The lucky ones whose baby was strong from the start.  We needed no interventions during our stay in the NICU.  No oxygen, no medications. A single tiny feeding tube in baby’s nose until she could take a bottle.   The doctors were impressed with Juliet’s will.  The nurses called her a firecracker and joked that she thought she was full-term baby from the start.  We stayed for exactly 3 weeks and took home a 5 lb 8oz baby girl.  Having the healthiest baby in the unit makes you hyper aware of the families around you who aren’t as lucky.  But it doesn’t make you feel any better about your situation. It’s still unnatural.  All wrong.  Absolutely heartbreaking.

We had amazing care in the NICU and couldn’t be more grateful for the doctors and nurses who cared for our little love. We had the best in the worst situation.   If I could say anything to the parents who have yet to go on this journey it would be this:  Nothing prepares you for the NICU.  No one understands how you feel or what you are going through except for those parents who have been there before you.  Don’t read all the books about preemies, they will just scare you.  Try to sleep.  Let others do as much as they can for you while you focus on your baby.  Cry it out.  It isn’t fair and that’s your right.  Get mad.  Its natural. Pray.  But know that your baby is where they need to be.  The NICU staff will take excellent care of your baby. Your time there is an eternity and an instant.  Take pictures every day because they grow and change so fast.  Before you know it, you’ll be telling your story…

// N I C U d i a r i e s: C A I L A 'S S T O R Y //

This week I am sharing Caila's story. She mentioned something that really hit home with me; it's the "pangs of guilt" for not realizing sooner that something is wrong. Hindsight is always 20/20 and looking back all the warning signs seem so obvious. It still breaks my heart that Johnny went a day and a half in discomfort before we knew anything was wrong with him.  It's easy to be too self-critical as a mother, when some things are just out of our control. The important thing is to know that now our babies are strong and healthy and beautiful.  

//

The story of Levi's delivery is pretty uneventful, especially in a blog series about the NICU, so I'll make the first part brief. I didn't know I was in labor until I went to my OB for my regular check-up and she informed me that I was 5 cm dilated. It was 11 days before  my due date, so I was surprised but relieved because the doctors were predicting that Levi would be 10+ pounds. My OB told me that I had time to drive home and get my bag (which was packed, thank God!) and pick up my husband, Dave, from work. If Dave were telling this story, he'd be sure to mention that I was doing household chores and stopping for coffee before we went in to Labor and Delivery. I was not going to labor with a caffeine headache! Once we got to the hospital, we watched How I Met Your Mother and Arrested Development on Netflix and my friend Elizabeth came over to bring us food and moral support. I distinctly remember thinking that labor was boring, until, of course, it stopped being boring. Then I neglected all my ideologies about natural birth and got an epidural. Women who give birth without drugs are probably superhuman, but I was happy and telling stories between pushes. All said and done, I labored for about 24 hours and pushed for 25 minutes before I met my beautiful baby boy. Levi Muir was 8 lbs, 6.6 oz (way less than was predicted!) and absolutely perfect!

I was eager to try and nurse him as soon as possible, but he had his little mouth clenched shut and his eyes squeezed closed. In hindsight, that was the first sign that something was wrong, but I had read that babies don't always nurse easily right away and the nurse assured me we'd try again after some skin-to-skin time. Eventually they moved Levi and I out of the room in which I delivered into another room. That's standard, but I still don't understand why. When we got to our new room, some nurses came in to check on us. One of them was a respiratory specialist and looked at my purple, grunting baby and asked how long ago he was born. Apparently he should have gotten the hang of breathing by that point. Before I knew it, there was a flurry of activity in our room. It still brings on pangs of guilt to think about the nurses and specialists crowded around Levi because I was too exhausted to be paying much attention. They took Levi down to the NICU and my husband accompanied him while I dozed in and out of sleep. We were supposed to Skype with my parents that evening and it barely occurred to me that Levi might not be back before our conversation.

As I reflect back, it seems like the uncertain waiting was the hardest part of this ordeal. They determined that something was going on with his lungs and the NICU manager came in to give us a free parking pass for the hospital ramp that was good for two weeks. TWO WEEKS?! There wasn't a chance we'd have to wait that long to bring him home! Then we learned there was fluid in his lungs and they were going to give him rounds of antibiotics for the next 7 days. I thought if I could just make it through those days, this all would be over. But, NICU staff seem to be notoriously tight-lipped about giving a timeframe and ours just got longer and longer.

At first Levi was sedated because he was a big, strong boy and they were afraid he might pop a lung if he cried too much. We also weren't allowed to hold him for days. It was excruciating to see our boy all drugged and sleepy, and all I could do was touch him with my hands and whisper to him. It's hard to look at my big, lively, wide-eyed boy and remember that sad, sleepy baby. We rarely even saw his eyes open the first few days of his life. His blood oxygen levels were low, so he was hooked up to a CPAP for oxygen, a pick line for IV fluids and lipids, a gavache tube in his mouth, he had an umbilical line so they could draw blood easily, and heart rate monitors. After I was discharged from the hospital Dave went back to work so he could save his vacation time for Levi's homecoming. So, I'd get up every morning and try to take care of my tired, post-partum body and rush into the hospital as fast as I could get there. I'd spend all day standing by Levi's little plexi-glass box and pumping breast milk on the monotonous schedule of a NICU mom. I'd agonize over how much oxygen was flowing through that CPAP, desperate to see it drop from 100% to 26% - room oxygen level. When Dave got off work, I'd go to pick him up, we'd grab some dinner and head back to the hospital until about 11:00. I'd cry every time we left sweet Levi alone for the night. It felt so wrong to leave him there alone. One night I sobbed and told Dave how it just didn't make sense to be away from my baby; he'd been a part of my body for as long as he'd existed and now I was without him. A mom without her baby is the most unnatural thing in the world.

Once Levi's 7 days of antibiotics were done, Dave and I felt confident that he was coming home soon. But the hospital was slow to wean him from IV fluids to milk. Soon agonizing over the CPAP oxygen level was replaced by agonizing over the level of IV fluids as compared to his milk feedings. As any grace-filled Christian should, I'd curse the doctors' names who gave my baby meager milk feedings and then watched the hungry boy fuss and suck his pacifier for the next 2.5 hours. I'd curse their names as they adjusted their timelines for Levi's hospital stay to be longer and longer. I cursed their names when I had to ask for my 2 week parking pass to be renewed. And every once in awhile, at my best moments or the times God felt near, I'd thank God for those stupid, slow doctors who were working so hard to ensure I brought home a healthy baby.

Exactly one week before Levi was discharged, I spiked a fever of 103.7 during the night accompanied by chills that left me shivering under multiple down blankets even though it was a 100-degree July in Los Angeles. The next day, Dave rushed me to urgent care and I cried and begged him to just drop me off so Levi didn't have to be alone. I felt like he expected us to come and the thought of him waiting with the nurses made me so sad. Long story short: I spent a long day in urgent care alone, had a hard-to-diagnose case of mastitis, and couldn't go to the NICU for two days. Mostly, it was my body starting to give out under the stress.

In that last week, we watched the machines used less and turned off. Levi steadily switched from gavache tube feedings to eating orally. He started smiling at the nurses and Dave and I. Finally, FINALLY, 19 days after he was born we got to bring him home.

We are so blessed that he's grown to be big, strong and happy. Even though it's only been 8 months, our NICU days seem like a distant memory. Levi is army crawling around our house like a mad man and pulling himself up on anything he can reach. He's outgoing and social, ticklish everywhere, and smiles all the time. We keep pictures of those NICU days on display at our house; it feels disingenuous to try to forget the pain, but ungrateful not to admire the progress.

// N I C U d i a r i e s: B E T H A N Y 'S S T O R Y //

Two months before Johnny was born my cousin and his wife had a little baby boy who had to spend time in the NICU.  We were praying for the health of their baby as my pregnancy was coming to it's completion. Then when Johnny was born and we were in the NICU with him, they prayed for us. Bethany was someone one who gave us such beautiful words of encouragement while we were there. Last summer Johnny and Austin got to meet each other and you'd never guess to look at them that they both started off in the NICU! I am so pleased that Bethany was willing to share her story here.

//

I had an easy pregnancy, with no complications at all, and went into labor on my own on the morning of Holy Saturday, 2013.  I had planned to have a VBAC because I missed the first hour or so of my older daughter’s life while in recovery after the c-section.  With my firstborn, I had to be put under general anesthesia for the section, so I didn’t see her right away.  My husband had already taken pictures and texted them to family before I saw her face.  Not wanting to miss a moment of my son’s birth, I prepared for a VBAC, and I got an epidural early on (I had tried to go all natural with my first), so I wouldn’t have to go under general anesthesia a second time.

You can probably tell where this story is going.  It was Holy Saturday, and I had just got the epidural when the nurse noticed that I was running a fever.  “Sometimes that happens with an epidural,” she said.  She came back and checked a little later, and the fever was still there.  I think she had given me a Tylenol, to no avail.  That was the first sign anything was wrong.  I was put on IV antibiotics, as a precaution.

Other than the IV antibiotics, labor progressed normally.  There was meconium in the waters, but that had been the case with my daughter, too, so I wasn’t too worried.  My son’s heart rate was a little high, but not alarmingly so.  At one point I thought I might be headed back to surgery, but my doctor let me keep going.  Around midnight, I started to push.  

As always when a baby is about to be born, the hospital room filled with people.  The presence of meconium in the amniotic fluid meant that a team from the NICU must be present at the birth as standard procedure.  I would learn later that our story is an example of why the NICU team comes every time there is meconium, even if most of the time they aren’t needed.  We are the statistical rarity that they come for, and I thank the Lord.

The nurses and my husband were helping me push.  My doctor had arrived, and he was ready to catch my son.  “He needs to come out,” said my OB (who I love).  I pushed hard, prayed to God, got an episiotomy, and boom!  My son was born at 1:14am on Easter morning. 

He didn’t make a sound.

My OB quickly cut the cord and passed my son back to the NICU team.  Two neonatologists and two nurses worked on him, suctioning his nose and mouth, giving him an oxygen mask.  I watched as one of the doctors held up the umbilical cord straight above his little body and squeezed the blood in the cord back into his body.  The cord had been wrapped around his neck; he had aspirated meconium; he had an initial APGAR score of 2.

When you are waiting for your newborn son to cry, you lose all sense of time.  I have no idea how long it was before we heard his voice.  The room was quiet.  My OB doctor and the nurses who had attended me busied themselves, though I paid them little attention.  I tried to read the room for signs to see whether or not I should panic.  Everyone was so quiet.  My doctor had his back to the NICU team while he waited for the placenta.  I saw him cock his head in the direction of my baby, as if better to hear.  That worried me.  Then he cried.  Praise God, he cried.

We named him Austin Immanuel, in part because we had felt (already) that God had been with us through a difficult time.  The nurses brought him over to me for a hug.  He looked beautiful to me.  I kissed his cheek.  Then they took him to the NICU, where he would stay for 17 days.

When I look back at photos of his birth, he looks so sick to me.  Immediately after he was born, he looked puffy and pale.  I did not notice this at the time.  Such is a mother’s love, I suppose.

Then I started hemorrhaging.  I lost a lot of blood, and my placenta came out in pieces.  I was only dimly aware this was even happening at the time, to be honest.  I am glad I had a medical team to take care of me because I was in no condition or frame of mind to think of myself whatsoever.

Turns out my placenta had gotten infected during labor (hence the fever).  Bacteria that lived in my body traveled up through the broken waters and infected my placenta and my son.  It happened very quickly --- so much so it astounded all the doctors who heard it.  I was not high risk for this.  My waters had only been broken for a few hours, and my son was full term.  It was a fluke of epic proportions.

Later, I would tell my doctor I had found a statistic online that said what we had suffered had something like a .0008 percent chance of occurrence.  “That sounds high,” he would say.

Anyway, the next morning I was finally deemed stable enough to visit my son.  I had seen him via Facetime in the night (my husband thinks we should be in an Apple commercial for this! Haha).  Little Austin was on oxygen, an IV through his belly button, and several monitors.  We said hello, held his hand.  There was not much we could do.  He was not stable enough to hold him.  They were still running tests and had not diagnosed his infection yet.

Although I could stay in the NICU all the time, day or night, I found that I could not handle being there without a break.  I felt completely helpless.  I was completely helpless.  I had to hand my son over to the nurses, the doctors…well, to God, really, and trust that through this medical care God was providing my son what he needed. 

It was three days before I could hold him.  Suddenly, with my son in my arms, everything was so much better.  I felt I could handle all this, if only I could hold him.  I felt the effects even in my body.  I could sleep.  And immediately, my milk came in.  I am still amazed at that.

Later that day I was discharged from the hospital.  It was good to be home.  I found a lot of comfort in my routine care for my 17-month-old daughter, who was oblivious to all the stress.  She had been missing me, even though Nana was pretty cool.  It was helpful to me to be able to care for at least one child – there was so little I could do for my son, I really needed to care for my daughter.  I slept in my own bed, and woke only to pump.

Our days began to take shape.  In the morning I would care for my daughter and put her down for her late-morning nap.  Someone would come to relieve me, and I would drive to the hospital to see my son.  I got to know the nurses in the NICU (wonderful people).  I would hold my son while he slept, or try to nurse him, or sometimes just watch him sleep.  Some days I spent hours holding him on my chest, skin to skin.  Often my husband would stop by after work.  Then we would head home to have dinner and put my daughter to bed.  Some nights I would go back to the hospital.  But I would sleep in my own bed and be home when my daughter awoke. 

And that was our life for a couple of weeks.  We had lots of help.  My mother, my mother in law, and a close friend all took shifts.  I cried on and off.  I tried to relax the muscles in my face, but I never could.

Gradually my son recovered.  First the oxygen tube came off, then the feeding tube, as he grew strong enough to suck.  First a bottle, then the breast.  Finally it was just the PICC line left (a Peripherally Inserted Central Catheter, aka a Super IV J) for his antibiotics. 

Finally one morning we arrived at the NICU to bring him home.  Our wait was over, and I felt our new life together could really begin.  My daughter met him for the first time – what a precious sight!  Those 17 days were over. 

Since then my son Austin has grown big and healthy, with no lingering issues.  Nearly a year later, I am still so grateful.  Grateful for the doctors and nurses who saved the life of my son.  Grateful for the NICU, and grateful our stay was not longer.  Grateful to leave the NICU with my son snuggled safe in his car seat.  I know not every mother gets to do that.  We are grateful that his rough start has not left any lasting damage.

Our time in the NICU has given me a perspective on motherhood that I value.  When I think of how much pain I endured in labor to have that first hour with my son, only to wait instead for three days to hold him --- all I can say is that there is grief, but the gratefulness outweighs it.  Today we have a wonderful relationship, my son and I.  I don’t feel that our bond is diminished by our brief time spent apart.  I love my son.  I am his mother.  Those two things, nothing can change.

// N I C U d i a r i e s: S H A N N O N' S S T O R Y //

This week I am so honored to be sharing my sister-in-law's story of being in the NICU with our sweet nephew. EJ was born 10 weeks early! I remember the day we found out Shannon had needed an emergency c-section and that she was still waiting to see her baby for the first time.  The memory of our NICU stay was so fresh in my mind that I couldn't help crying throughout that entire day. We had a hard enough time being in the NICU for 9 days with Johnny. I am truly inspired by Shannon and Peter and how well they handled being in the NICU for 39 days!

One of the many reasons my husband and I chose the hospital we did for our baby’s birth was because it has a Level III NICU that is considered one of the best in the country, but we certainly never expected to need it.   When our son EJ was born at 30 weeks gestation weighing 2 pounds and 7 ounces, we could not have been more grateful for it. 

EJ’s premature birth came as a complete shock.  My pregnancy had been going very smoothly, and my doctor described it as ideal as recently as one week before EJ’s birth.  We had no reason to think anything would go wrong.  When I thought I was experiencing heartburn and went to the hospital just to be safe, never in a million years would I have guessed that I would be rushed into an emergency c-section and be meeting my baby in just a few hours.  I developed HELLP Syndrome almost overnight, and it was so severe that my baby needed to be delivered immediately for my safety. 

                    The many, many times I pictured meeting our baby for the first time, it was always a moment of overwhelming happiness and joy.  It would be the happiest day of our lives!  In reality, the day we met our baby was terrifying.  The first time I saw EJ, which was about five hours after he was born, I felt scared, helpless, and heartbroken.  I felt like I had failed him.  I couldn’t keep my little boy safe, and he had to come out before his tiny body was ready.  I was devastated.

EJ’s first photo!  My husband got a quick glimpse of flailing arms and legs as EJ was rushed to a team of waiting doctors and followed EJ to the NICU, but it was about five hours before I got to see EJ for the first time.

                My sweet baby looked so small and fragile.  He was covered in tubes and wires and surrounded by machines, and I didn’t know what any of them did.  I didn’t know what, if anything, was wrong with him.  I didn’t know when I could hold him.  I didn’t know how long he would be in the hospital.  I didn’t know if he would live.  It was completely overwhelming, and all I could do was cry.

EJ was 14.5 inches long and not much bigger than Sophie the Giraffe.

  It was days before we knew what his face looked like under all the tubes.

                EJ ended up being one of the lucky ones.  After a very scary first week during which he showed signs of a life threatening condition, he pulled through and never looked back.  From week two on, he was considered a feeder and grower, which meant he just needed to grow and mature (be able to drink from a bottle, maintain his body temperature, breathe on his own) so he could go home.   Even so, NICU life means constantly having to brace yourself for something to go wrong, and it is incredibly stressful.  I cried every day until EJ came home, which he did after just 5 and a half weeks (at 35 and a half weeks gestational age) and weighing exactly 4 pounds.  Now THAT was the happiest day of our lives!

EJ wasn’t very impressed by his first experience with a car seat.  He weighed 4 pounds- the weight minimum for his seat.  My husband was excited to get to watch a Chargers game at home with EJ!

Fortunately, we were at a very supportive hospital.  We could visit EJ in the NICU 22 hours a day, a lactation specialist had me pumping within hours of EJ’s birth, and the nurses encouraged us to take as active a role in EJ’s care as possible.  We were changing his diapers, taking his temperature, giving him baths, feeding him, and doing anything else they would let us.  I would strongly encourage all NICU parents to be as involved as possible.  Insist if you must!  There are many things that we can’t do for our babies while they’re in the hospital, but there are also a lot of little things that we can do that can give us a tiny sense of control in a totally unpredictable situation.  It also helped me feel more like a real mom, which is hard when you’re not your child’s primary caregiver.  One day, I overheard our nurse briefing her replacement, and she said that the new nurse didn’t have to worry about checking on EJ because his parents were here and they were very independent and capable.  I beamed.

We were wondering if EJ would arrive in time for Christmas or not.  We never expected to have him here for Halloween!  My mom made his cape, but we learned that lots of preemie parents go to Build-A-Bear Workshop for costumes.

                  While the NICU was EJ’s home, we made it our home, too.  We hung up a banner and pictures EJ’s cousins drew for him.  We brought as many of EJ’s own items (blankets, clothes, hats, toys, boppy) as possible for him to use.  We asked question after question--how they did things, why they did things, did they expect that process to change?  I pumped there, we took naps there, we brought a laptop, and we set up camp.  We celebrated every tiny accomplishment, like when EJ went from 1 ml per feeding to 2 ml.  Do you know how tiny a ml is?  It’s nothing!  But it was everything.  Making ourselves at home made it easier to spend as much time with EJ as we could and helped us feel like a family.   

This picture is from our Tiny Footprints Project shoot and was taken three days before EJ came home.  We didn’t know it at the time, but our NICU stay was almost over!

EJ’s 39 days in the NICU were the hardest of our lives, but like all memories, the bad is fading and we’re focusing on the good.  EJ is alive, healthy, and thriving.  He shows no ill effects from his premature birth and will be five months old (11 weeks 3 days adjusted age) tomorrow.  He’s such a smiley, happy little guy and by far the best thing that’s ever happened to us.  I have a sense of love and gratitude the likes of which I previously never knew.  We were lucky, and that’s not lost on us.  People who don’t even know us were praying for EJ, and the deacon who came to the hospital to baptize EJ had our entire congregation praying for him at every Sunday Mass until he came home.  Every day my husband or I still mention how fortunate we were or how grateful we are to have our baby boy.  We take cookies and cupcakes to the nurses, but it never feels like enough.  How do you say thank you to the people who saved your baby’s life and cared for him when you couldn’t?  One nurse told me the best way I could thank her was to take good care of EJ, and that’s exactly what I’m trying to do.

                I have come to think of being a NICU parent as the best club that you never want to join.  There is a great sense of community among NICU parents, and in our case in particular, a kinship among preemie parents.  You had a preemie?  I may not know anything else about you, but I will do whatever I can to help you, like other preemie parents did for us.  I know the agony that you’re in, NICU parents.  I know the worry and the tears. I know how hard you fight to breastfeed, and I know how heartbreaking it is if it doesn’t work out.  I know how hard you are on yourselves when you’re not with your baby.  I know the guilt you feel.  I know you can’t eat and you can’t sleep, but try.  I want to tell you that everything will be okay, but I know that may not be true.  I sincerely wish every NICU story went the way EJ’s did, and I hope your sweet NICU babies will be all right. 

***** 

                I can’t write about our NICU experience without plugging the Tiny Footprints Project! The Tiny Footprints Project is a group of professional photographers who donate their services to NICU families free of charge.  They arranged for a photographer to come to the hospital to take pictures of EJ, and a friend of mine recently used them, too.  Getting professional pictures of EJ taken gave me something fun and exciting to look forward to in the midst of such a horrible experience, and I’m so grateful!  You can see some of our TFP photos here.

// N I C U d i a r i e s: A M A N D A 'S S T O R Y //

Thank you so much Amanda, for offering your story as the first entry in the NICU diaries.  Your words are beautiful and so many things in your story remind me of our own stay in the NICU.  Especially how easy it is for mothers to neglect themselves because they are so concerned about their babies.  You are all troopers!


Most pregnant women spend a lot of time preparing for the birth of their baby. They read books. They attend childbirth classes. They practice breathing. They watch birthing videos. They envision healthy deliveries. They write birth plans. They decide whether they will medicate, or breastfeed, or circumcise. But that is the extent. Most women don’t plan for a NICU journey. How could they? It’s difficult to prepare for something you can’t imagine. And, unless you’ve been through it, you could never imagine…

Early pregnancy was good to me. I may have been uncomfortable and tired, but I was never sick and it really didn’t affect my lifestyle much at all. But at 37 weeks I developed mild pre-eclampsia and was placed on modified bedrest. I spent 2 weeks lying on my couch, watching movies, reading, worrying. My condition improved with rest so we were able to delay delivery to get me closer to 40 weeks. I desperately wanted to avoid a c-section, and my OB agreed that I should be able to try for a vaginal delivery. At 39 weeks I was admitted for induction.

There is much to my birth story, but I will try to keep this portion brief. After 8 hours of cervidil and 18 hours of labor I was told that my cervix, which had been 8 centimeters and fully effaced, was now only 6.5 centimeters and swelling shut. I was regressing, which I didn’t even know was possible. I was told that my body was starting to shut down and a c-section would be necessary. I was devastated. After all we had been through I would still be heading to the operating room. My c-section was not quick, nor was it easy. I was in terrible pain, despite the epidural, and felt that someone was sitting on my chest throughout the operation. (I would find out later that, in fact, a nurse was sitting on my chest and pushing down on my baby from above.) I was heavily medicated due to my level of discomfort, so while I remember everything I felt like I was in a haze. I remember finally feeling the pressure in my abdomen subside and then hearing that first, glorious cry. He was here. And he was MAD.

Our sweet baby boy arrived at 3:46 am. 10 pounds 3 ounces! 21 inches long. Perfect in every way. Except one. He wasn’t breathing well on his own. I was told that he would need to be taken to the NICU to be started on oxygen and antibiotics. I had been so averse to considering a c-section that my husband and I didn’t discuss it much prior to my delivery. But the one thing I made sure he knew with certainty was that under no circumstances was he to leave our baby’s side. So Jeremy followed baby to the NICU, and my c-section was completed and I was wheeled back to my room to recover. Jeremy finally called me from the NICU around 10am. (He had been told I would be sleeping; and I should have been, but was so anxious for news of my baby that I couldn’t rest.) He said that the nurses had started an IV and Brantley had received doses of two antibiotics and was on oxygen in an incubator. He said “He’s just been so calm through all of it. We’re just staring at each other.”

It was killing me that I hadn’t seen my sweet baby yet. My nurse was still too busy to take me to the NICU (the unit is locked, so I needed a staff member to be able to take me). I felt helpless. I hadn’t seen, let alone held or nursed my baby. I longed for him. I wanted to be able to breastfeed, and my nurse was very busy and completely overwhelmed by her workload, so I ended up calling the operator and having her connect me to the on-call lactation consultant, who came to my room and helped me get set up to start pumping right away. I got a few drops of colostrums the first time I pumped, and the LC assured me that that was a really good thing. I felt encouraged for the first time in days! I finally felt like I had a little control over something.

Around 3pm, my nurse came to check on me, and I insisted that she take me to see my baby! She helped me stand and walk a little. I was in terrible pain, and my legs still felt weak from the epidural and from being in bed for so long. But I knew that I needed to be able to walk if I wanted to see my son, so I pushed on. My nurse finally wheeled me to the NICU, and with her on one side and my husband on the other I made the long walk to Brantley’s room at the back of the department. I stood in the doorway of his room and just stared. Here he was. Finally. My sweet boy. Here in front of me. Already 12 hours old. And it was so very bittersweet. He looked so tiny in an incubator, hooked to monitors with an IV in his hand, oxygen tubing in his nose and a feeding tube in his mouth. I sat next to him and just stroked his back. He was so beautiful. And looked so little. And all I wanted was to hold him and cuddle him and love on him. And I couldn’t. His oxygen levels weren’t stable, so we weren’t able to move him from the incubator. I tried to put all of my love into those caresses. And I prayed that he knew how much I loved him, even if I couldn’t hold him close. And my heart broke a little bit, minute by minute, as I sat and stared at him.

At shift change the nurses encouraged me to go back to my room to get some rest, and when I came back around 9pm my nurse told me that Brantley’s oxygen levels were stable and I could finally hold my baby! I was so excited, but completely overwhelmed. I felt like this was the culmination of my pregnancy and delivery. So much excitement, and fear, and disappointment, and anticipation. I sat next to his bed and the nurse wrapped him up, monitors, tubing and all, and placed him in my arms. And tears streamed down my face. Incredible love overwhelmed me. And an innate desire to keep this precious little being from any pain or harm. And here he was with tubes and wires all over him, and there was nothing I could do to ease his pain. And for the first time in my life I truly glimpsed the sacrifice the Lord made in sending His Son to die for me. It was the most humbling moment of my life to date.

I sat and held my baby for hours, and we just stared at each other. I watched his oxygen levels creep higher and higher the longer I held him. The presence of his mommy was literally healing and strengthening him. The nurses finally ushered me back to my room so we could both get some rest.

The next morning I had to wait for my OB to come to see me before I could go back to the NICU. She gave me the go-ahead to be up and around, but cautioned me to be careful not to overdo it. I was so focused on my baby, though, that I couldn’t even think about myself. (This is one of the worst things, and the most common, a new mommy can do to herself. I am still recovering from aspects of my c-section because I didn’t take the time to take care of myself while we were in the hospital and after we arrived home.) I walked into the NICU and Brantley was OFF oxygen! We were so excited. The nurse said his oxygen levels were maintaining well enough that we could try to nurse. She called the lactation consultant, and with her help we were able to get him latched on right away. It was so encouraging to finally be able to nourish my baby. We nursed off and on, and I spent most of the day in his room. I went to my room to rest for a while in the afternoon, and when I came back to the NICU the nurse told me that Brantley had made so much progress that the neonatologist had given us permission to bring Brantley into my room as long as I was still in the hospital. So that evening we left the NICU, and took our baby with us. I was thrilled, but we realized quickly that things were not going to be easy for us.

Brantley needed doses of two different IV antibiotics three different times throughout the day, and they were having difficulty keeping IV access. There were multiple attempts at starting IVs, and multiple IVs lost. My poor baby had poke-holes in both hands, both arms, and both feet. We never had to resort to a scalp-line, but I was concerned we might. There is nothing worse than knowing that your baby will be experiencing pain and not being able to stop it. I knew it was for his good, but it still broke my heart every time they had to poke him.

Our first nursing sessions had given us a false sense of security regarding breastfeeding. But Brantley was not doing well. He would literally shake his head frantically, and make noises that sounded suspiciously like he was saying “Uh-uh, uh-uh”. I would have to hold him with one hand, and my breast with the other, and my husband would try to guide his head towards me. And he was so strong. It was a fight with EVERY nursing session. We would literally both be a sweaty mess by the time we were finished. Once we would finally get him latched on, he would suck for a few minutes and fall asleep. We would undress him, tickle him, jiggle him. But he was stubborn, and slept right through our attempts to keep him awake. I asked my nurse repeatedly for help, and she kept saying “It’ll be fine, he’s doing alright, he’ll catch on.” I knew deep down that something was wrong, but trusted that she was right and I was overreacting. The next day, though, things were not improving. By the afternoon he had gone nearly 8 hours without attempting or being persuaded to nurse. I asked that the lactation consultant come see us again, and under the guise of acting sweet, she was quite condescending. She and my new day nurse kept exchanging a look that said “New mommy here, overreacting”. But I knew in my “new mommy” heart that something was terribly wrong. Brantley was sleeping when she arrived, and she wanted to just let him sleep. I was adamant that she observe our nursing session, so we woke him and attempted to latch him on. Within minutes her condescending attitude disappeared and she realized that I was right, and something was not normal. She spent hours with us trying every trick she had up her sleeve, with very little improvement. By this time, seeing the frustration on her face, and knowing that my sweet boy had had very little intake in nearly 12 hours, I was devastated. Around this time my nurse came into my room, slightly frantic with arms full of formula bottles and told me that his bilirubin level was high and his weight had dropped 11% and we would need to supplement. At this point I could not control my emotions. I felt like a terrible mommy. Not only could I not feed my child, but he was losing weight rapidly and I hadn’t even noticed that he looked yellow! The lactation consultant could see my distress, and knew that my desire was still to breastfeed, so she spent more time teaching us how to supplement Brantley with formula at the breast. Nursing had officially become a 2-person endeavor. I would hold Brantley to my breast, and Jeremy would syringe feed him formula by the 0.1mL. That is LITERALLY one drop at a time.

Over the next several days our breastfeeding routine would be modified many times. Brantley continued to lose weight until he was at a 13% loss. Anything over 10% is concerning. By the end of his seven day stay in the hospital his feedings were scheduled for every 1.5 hours. My milk didn’t come in until day 5, so I was pumping after every feeding to help stimulate supply. He was still a slow, sleepy eater so it took him between 45 minutes and an hour to nurse at each session. I would pump for 30 minutes after he nursed. That gave me, typically, between 15-30 minutes to rest before we started over. And Jeremy was still syringe-feeding him at my breast. And due to his weight loss, they wanted him supplemented with 15 mLs, which is about 3 teaspoons, at each feeding. We were stuffing him so full of milk, and so constantly, that he was in a perpetual “milk drunk” state, which made him even more sleepy, which made it even more difficult to keep him awake long enough to nurse. He and I were both exhausted. When the nursing was not getting any easier, the neonatologist diagnosed Brantley with a “minor tongue tie”, which is when the tongue is tethered too tightly to the floor of the mouth. He clipped it with a sharp surgical scissors (more pain for my sweet boy), but we still didn’t see much improvement. He would later be diagnosed with a severe posterior tongue-tie, which was revised as an outpatient an additional two times, and I think he still has an undiagnosed upper lip tie. Nursing has never gotten much easier. And while we no longer supplement at the breast, Brantley is still supplemented with formula and I frequently have to take breaks from nursing to pump in order to allow my breasts time to heal.

On day 5 I was discharged from the hospital, and there were no free rooms on the post-partum unit. Brantley would need to stay for 2 more days to complete his full week of antibiotics. Since I needed to be at the hospital to nurse, I was nearly forced to spend 2 days in a recliner at his bedside. The neonatologist took pity on me, though, and approved our use of the NICU’s transition room, which is a mock bedroom where parents are able to stay when they are learning how to take care of their premature babies once they’re nearly ready for discharge. The room was not going to be in use for the remainder of Brantley’s stay, so I was actually able to sleep in a real bed until he was ready for discharge. It seems like such a little thing, but was truly such a blessing for us!

I don’t think I have ever felt such relief as when we walked out of the NICU for the last time with our baby in tow. As I look back on our time there sometimes I feel guilty about how terribly I still view the entire experience. I compare our story to that of other families and I think, “Wow. It could have been so much worse.” I see mommies who can’t hold their babies for weeks or even months. Who sit in recovery rooms waiting for their babies to come out of surgery. Who never get the chance to try to nurse. Who have to kiss their babies goodbye for the last time when the battle is just too much. And our experience pales in comparison. But I think, regardless of their experience, the NICU is a terrifying place for a mommy (or daddy, or grandparent). A place no one plans for. A place no one expects to visit. A place of uncertainty and fear. A place of helplessness. And sometimes of hopelessness. But the NICU taught me so many things. It taught me never to take for granted my child’s health, or even his presence in my life. It taught me to ask for help, because as independent as I’d like to think I am, sometimes I just can’t do it alone. It taught me that no matter how long the road seems, or how difficult the struggle, there is always an end. It taught me that sometimes the “mommy heart” knows best, whether anyone else believes it or not.

I will hug my son a little tighter tonight. Cuddle him a little longer. Tell him over and over again how much mommy loves him. And how proud I am for how far he’s come. How far we’ve come.

Announcement: // N E W S E R I E S //

I believe that setting goals and working towards them is an important part of life.  Even though blogging is just something I do for fun/cathartic experience, taking part in this 7 posts in 7 days challenge has been really good for me. Some days I didn't feeling like writing anything, but by the time I hit "publish" I was really glad that I had. And the best part is that this challenge has given me the momentum I needed to start a project I have been thinking a lot about for a long time but have been to scared/lazy to pursue.

And so, without further ado, I give you my first series ever:

NICU Diaries

I think that everyone reading this probably knows that we spent 9 days in the NICU with Johnny after he was born.  It was, hands down, the hardest most awful 9 days of my life. But one of the things that gave me so much encouragement during those 9 days was hearing from other mothers who had been in the NICU with their own babies.  I think it's so important for mothers to encourage and support one another, because what we do is not easy.  I think it's especially important to encourage and support mothers who are going through extra difficult circumstances.  I believe that the Lord uses the difficult circumstances in our lives to help those around us. And I know that the Lord will and already has used our experience in the NICU with Johnny to encourage other mothers going through similar things. 

So with all these things in mind I am looking for mothers who have been the NICU, or special care untis, or had other hospitalizations with their babies to share their stories.  Not to relive or focus on hard times, but to encourage those who need encouraging, and to give a new perspective to those who have not had a child with health issues. I know that when Alex and I look back now on our NICU stay we are a little sad about everything Johnny has had to go through, but more than that we so thankful for the care he has received and so overjoyed at how well he is doing now! 

If you or someone you know is interested in sharing their story drop me a line: annagcoyne@gmail.com