Our NICU Experience

She ended up staying in the NICU for 23 days. Her discharge date was May 29th.

I learned a lot about life during those 23 days. Yes, it was an incredibly frustrating time in my life. I went through moments where I felt like I really was mourning a loss...of everything that I had expected. This wasn't what the days after having a baby were supposed to be. This wasn't anything like what I had pictured.

HOWEVER, I quickly learned just how blessed we were. I already knew that we were blessed- beginning the moment I heard what Eleanora's Apgar score was. I knew that, barring any further unexpected complications, we would eventually get to bring our baby home. There are many moms and dads who aren't that lucky. Three of my friends (from high school/college) never got to bring their baby home. One woman that I knew growing up gave birth to 6 babies- 5 of whom went home to Jesus. I cannot begin to imagine the pain and heartbreak... Many women are never able to get pregnant or experience miscarriage after miscarriage. That is a journey which I can't pretend to understand. All I can say is that I'm so incredibly sorry and I pray that God heals their hearts and brings peace and joy after their years of storms.

While Eleanora came too early and was too small, we heard time and time again that she was "just a big girl in a little body" meaning that she was tough, that she just needed some time to grow. I met many other moms in the NICU whose babies were born around 1 pound. Their journey was much more difficult and much longer than ours. Their little loves were on all sorts of machines that we never even had to see.

My point in saying all this is that I don't mean to make my NICU experience out to be some "poor me, look what I had to go through" drama. I am fully aware that we could have had it much, much worse. But I also think it was a time in our lives worth documenting, remembering, and sharing with others. It was unlike anything else we have been through and it changed us forever.

 DAY-TO-DAY NICU LIFE 

Every morning, Jared would drop me off around 6:30am on his way to work. I would take the elevator up to the 2nd floor NICU. The woman behind the desk would greet me and ask to see my hospital bracelet to prove that I was Eleanora's mom (after a few weeks, they all knew who I was and didn't ask anymore). Then I would have to sign the logbook and state that I was not feeling ill and had no flu-like symptoms. She would give me a name tag that said "MOM" and Eleanora's room number. She would then push the button to open the doors, saying "please don't forget to wash your hands!". Immediately upon entering the NICU was a scrub station, where there were signs stating the importance of scrubbing your hands up to your elbows, removing jewelry, etc. After a thorough scrub, I would swing by the water/ice machine and fill up my big mug with ice water.

Because of her schedule, I had to wait about an hour and a half before I could hold her. I used that time to catch up with her nurse on how the night went, eat breakfast, go over more paperwork (so so much paperwork), journal, pray, and watch my baby sleep and grow in her incubator. If you remember from my last blog entry, she was brought out of her incubator every 3 hours for a diaper change, temperature check, repositioning, etc. The rest of the time, she was to be undisturbed so that she could sleep and grow how she would be sleeping and growing inside of me still. After she was moved into the less-emergent section of the NICU, I was able to hold her straight from 8-11am everyday. It was heavenly.

By 8:00, I had rearranged her room exactly how I needed it- with the chair facing away from the glass doors so no one could see me, with my BIG jug of water next to me (breastfeeding/pumping mama's need to stay hydrated!), with reading material nearby (all about preemies, NICUs, etc), and with all the pillows and blankets we might need.

I would gently wake her up by talking to her while I unswaddled her. Then I would lift her tiny little arm to take her temperature, change her diaper, and carefully lift her (along with all of her cords and monitors) out of her incubator. We spent the next 3 hours doing Kangaroo Care (or "skin to skin" for full term babies). More info on this in the next section. :)

Around 11:15, I would walk down to the parent lounge to warm up my lunch, listen to voice-mails, make phone calls, and eat. As soon as that was done, I would head back into her room. No food or phone calls are allowed in the NICU.

More pumping and kangaroo care for the afternoon. I pumped every 3 hours.

Around 3:30, Jared would come back to the hospital after work. We would stay for a few more hours, he would hold Eleanora a little, sometimes we would get the chance to bathe her, and then we would head home to eat dinner, I would pump, and we would collapse in a pile of exhaustion.

I always felt guilty and devastated to leave, but was also aware that I needed to rest and be awake for all the full days of information overload in the NICU. Our NICU was wonderful and amazing in so many ways, but maybe someday they could make "NICU suites" so that the moms (and dads) could have a place to stay when their baby is at the hospital. It was really awful having to leave her every evening.

Skin-to-skin/Kangaroo care

We would spend the majority of the day with her asleep on my bare chest. The term for this ("a method of caring for premature babies in which the infants are held skin-to-skin with a parent, usually the mother, for as many hours as possible every day") is "Kangaroo Care". Research has found that this has TONS of benefits for all babies, but especially preemies. It can stabilize a baby's heart rate, improve the breathing pattern, improve the oxygen saturation levels, maintain their body temperature, help with neural development, lower stress hormones, etc. It also has lots of benefits for the mom- lowers risk of Postpartum depression, helps uterus to heal faster, increases milk production, helps with bonding to your new baby, etc.

I would talk to her while she laid on my chest. I always tried to sing, but I'm not exaggerating when I say that I couldn't make it through a single line of a song without crying. I'm sure postpartum hormones and exhaustion probably played a role here, but I was completely overwhelmed with emotion when I tried to sing to her. It literally took a month before I could sing to her without crying.

One of the problems is that I usually tried to sing this song: I Get To Be The One by JJ Heller

The mirror on my lap so that I could see her face.

Daddy even practiced Kangaroo care when he came to the hospital after work!

 MY MOM 

My dad went back home to Wisconsin because he had to return to work. My mom and Sophie stayed for 2 weeks, which was so amazing. I would've had a really hard time without them being here because life would have gone back to normal with the exception of my baby not being with me at home.

I felt like I was walking through fog that entire time. Everything was so overwhelming. I don't know what I would have done if my mom hadn't been there. She did everything she possibly could to help- cleaned all of my pump parts, made sure I stayed hydrated and ate regularly, prepared food for me, cleaned my house, did my laundry, helped with all of the baby preparing at home that I thought I would have months to get done, provided an extra set of ears to try to take in all of the information from the hospital staff (You have no idea how much I needed this. Even with two of us listening to everything, we still couldn't remember everything we heard.

In addition to all of that, she was also still teaching and caring for my 10 year old sister, Sophie! Sophie wasn't allowed in the NICU (big sad face), so she split her time between the NICU lobby, the "siblings room", and the Ronald Mcdonald room. While the hospital had some phenomenal resources that we took advantage of with this situation, I still felt really bad for Sophie. She was amazing and hardly complained at all. All day long, my mom would come check on Eleanora and I for a while and then go back out to be with Sophie.

The nurses weren't supposed to allow anyone to hold the NICU babies except for the parents (for health reasons), but one of our nurses "sneakily" allowed my mom to hold her for a few minutes since she knew that my mom had been there day in and day out. We had to make sure that no one else saw and weren't supposed to tell (shhh). As my mom held her newest grand baby, her eyes welled up with tears. It was a sweet moment that we were both so grateful for.

 
Before my mom and Sophie flew back home to Wisconsin, my mom made tons and tons of yummy, nourishing meals for us and stocked our entire freezer and refrigerator with them. We didn't have any time to cook or eat out (and didn't want to eat out because we a. wanted to spend every moment we weren't sleeping with Eleanora and b. knew that hospital bills would soon start coming in) and only one other meal was brought to us besides this. If it wouldn't have been for my mom's cooking, we would have probably eaten PB and J sandwiches and fast food for a month or two, which is honestly not great for breastfeeding a preemie.

Side story- One morning when we arrived in Eleanora's room- mom noticed a new post-it note on her incubator. It had a triangle symbol and said "5/20 Thx :)". We both of course had no idea what it meant, but got our hopes up thinking it meant that she would be moved out of her incubator on that day. When her nurse came in, she laughed at us and explained that it just meant that her incubator needed to get switched and sanitized on that day.

INFORMATION OVERLOAD

All day long, people were coming in to give me information- social workers, physical therapists, occupational therapists, different types of doctors and nurses, chaplains, etc. I constantly felt like my brain was overflowing. It was information and emotion and worry overload in a way that I had never experienced before in my life. My family would begin talking to me about something unrelated to Eleanora and the NICU and I would try as hard as I could to listen, but they recognized my "glossy-eyed" expression within seconds and would give up on the discussion. I could not focus on anything or take in any other information. With all of those drives to and from the hospital, I could not tolerate having the radio playing. My theory is that my brain was just exhausted and didn't want any unnecessary information entering it.

She ended up getting moved twice. The first time to a "less emergent" area of the NICU, and the second to a room with a window so that she could be exposed to natural light. All of the facilities and resources at the hospital were really nice and I was very grateful for that. All of the NICU rooms were private, which was wonderful for pumping (and later breastfeeding).

BREASTFEEDING

I was incredibly thankful that Eleanora was able to be nourished by my breast milk from the beginning. Many preemie moms are not able to produce milk, and I didn't have any problems with this. I had been leaking milk for around a month before she was born, and tried pumping hours after she was born. I began producing colostrum about 2 days after I gave birth. 

"Liquid Gold" that I was able to pump beginning 2 days after Eleanora was born

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Once my supply was established, I began producing massive amounts of milk. The NICU had to send TONS of milk home with me to freeze. We had to budget in the cost of a deep freezer to store it.  

YAY! So much milk for my baby!

To keep my supply up, I pumped every 3 hours day and night. I went out and bought those ridiculous breast pump bras and they were a lifesaver. I had snickered to myself during my pregnancy, wondering why in the world anyone would need such a hilarious contraption, but without them I would not have been able to do anything but hold a pump onto my chest for half of the month. I pumped for 20 minutes every 3 hours, and set-up, clean-up of the pump, labeling and storing my milk took around 10 minutes. 

Pumped and labeled milk- ready for a nurse to pick up and put in my section of the NICU freezer.

If you have never exclusively pumped, you can imagine how much energy and time this took. Also- fun fact, lactating naturally makes you sleepy, so I was always exhausted afterward. If I'm being honest, I was incredibly incredibly happy that I could do SOMETHING that would help my sick baby, but it wasn't exactly fun to set an alarm and sit awake listening to the sound of a machine chugging away for half the night when I knew that I was supposed to be waking up to my sweet girl. I stared at that pump for hours every night- crying, missing her, wondering how much longer I would have to live without her. 

I think it was around a week after she was born that I was able to try breastfeeding her. She didn't really do anything but lay there- usually with her mouth closed. Feeding her was the longest and hardest part because she wasn't born with the sucking reflex. When she finally did suck, it took all of her energy and she wasn't able to suck for long enough to nourish herself. Because of this, she had an IV for a while and a feeding tube through her nose until the day she was discharged.

The tube on the left is feeding her my milk from a machine through her nose.
The tubes on the right are pumping milk from me! It was a crazy time.

Many days I would try to breastfeed her, it would last about 3 minutes, she would fall asleep with exhaustion, and then we would play the guessing game regarding how much more milk we thought she would need pushed through her feeding tube. I hated this so much. She needed to gain weight, but on a few occasions, we pushed too much milk through and I watched her throw it all up. Other times, she would wake up crying after an hour and I knew that it was because she hadn't gotten enough milk.

Snuggling my girl while I pumped milk

 NICU NURSES

I had a lot of very difficult evenings- unable to sleep, worrying about her and wondering if whichever nurse was assigned to her was taking good care of her. We were encouraged to select a few "primary care" nurses for her, which meant that if we liked a nurse that was caring for her, we could request to have her placed on her care more frequently. We did this for several nurses as soon as we knew it was an option, but it seemed that she continued to be assigned a new nurse for almost every shift.

On one occasion, I strongly felt that one of her night nurses was NOT taking good care of her. When I arrived in her room in the morning, the nurse spent probably 20-30 minutes sitting on the couch, talking about her kids and barely even looked at Eleanora. She told me that Eleanora had not eaten well the night before, so she just gavaged (pushed breastmilk through the feeding tube directly into her stomach) instead of offering her a bottle.

Breastmilk (up on top), being gavaged through a feeding tube into Eleanora.

Up until this point, Eleanora had been making great progress learning how to suck- during the day on my breast and during the night from a bottle. This meant that she was getting close to getting the feeding tube removed and being discharged! I strongly felt that the nurse was probably too lazy to offer a bottle. Bottle feeding required 20 minutes of encouraging her to open her mouth, pause to breathe, burp her, etc. Gavage feeding took literally 1-2 minutes.

I called the charge nurse to ask if that nurse could no longer be placed on Eleanora's service and was told that while they take all requests under consideration, they can make no guarantees and that she was already scheduled to Eleanora the following night. All night I worried about her and when I came in the next day, the nurse said the same thing- she had to use the feeding tube all night because apparently Eleanora had not done well with bottle feedings. Additionally, while the NICU policy is to bathe and change the babies every night, Eleanora was wearing the same clothes from the day before and I knew that this nurse had not bothered to bathe her. I didn't care about her not getting a bath (how dirty can a baby get in one day?), but I was concerned that the nurse disregarded the NICU policies because of her own laziness.

Eleanora also had an older nurse named Mary. The first day we had her, I was a little worried that she would have an old-fashioned perspective on things and not be supportive of my hippie-homeopathic ways. She was absolutely amazing, and I requested for her to become a primary nurse. She was with us for 4 of the days, including the day we were discharged. She went on and on about how natural I was, and how Eleanora would have no problems. I loved her and I needed those encouraging words during such a scary transition.

FIRST DIAPER CHANGE

We had one nurse named Brooke who cared for Eleanora 2 or 3 times during the first week when everything seemed the most scary. She had a very laid-back personality, which helped me relax a lot when I began an internal panic attack about an alarm that I didn't understand. She encouraged me to complete a lot of Eleanora's care when the other nurses did it themselves and didn't offer to let me. I will never forget changing her poopy diaper for the first time. She was probably 4 days old at the time, but her poop was still meconium. I had changed HUNDREDS of diapers prior to this, but never a meconium diaper on a 3 pound baby. I was shaking as I tried to delicately get the black tar-glue off of my poor baby's butt. I can't even describe what that was like- I had been advised not to even stroke her face or head with my finger tips because her skin was so thin that it would hurt or annoy her. She didn't have little buttcheeks- literally just skin and bones. And that poop would NOT come off. She didn't really have the strength to cry yet, but you could tell that she hated it. Then I tried to put the smallest diaper on her. It was a size small in preemie diaper and it was too small for her. I had diapers for my dolls when I was little, and Eleanora's diaper was smaller. After years and years of changing diapers for my younger siblings, nieces and nephews, babies in the church nursery, and babies that I babysat or nannied for, I felt completely inexperienced and helpless.

So much extra skin everywhere!

FIRST BATH

About a week after she was born, I learned that the night nurses had been bathing Eleanora sometime overnight during their shift. This broke my heart, because I wanted to be the one giving her a bath, and I didn't know that she was being bathed nightly since the day she was born.

I know this next part is silly, but while I was pregnant I painstakingly researched pretty much every single baby product and had learned that some of them had not-so-safe ingredients in them. I stocked up on the most natural ones that I could get, and of course found out that the hospital had been using the bad ones every day on her. I know you're thinking, "Wow. Didn't she have bigger things to worry about? In the grand scheme of things, that is really NOT A BIG DEAL." But it was just one more thing on my giant list of "this is not going how I had hoped".

I had asked about 3 million questions, but somehow I hadn't thought to ask about baths and no one had offered this information. That night, I asked if I could bathe her before I went home for the night. The nurse wheeled a cart into her room with a heat lamp over a tray in which Eleanora would lay. Jared helped me use a washcloth to gently wipe her delicate skin.

When we got home that night, I sobbed and sobbed. I told Jared that I was angry at him for not taking video or more than one picture of her "first bath". A few minutes later, I apologized- realizing and admitting that it had nothing to do with that. I was just heartbroken. I ached to have a "normal" birth and going-home experience. I wanted to bundle my chubby pink newborn in her car seat and take her home the day after she was born in our beautiful birthing suite. I wanted to snuggle her in our cozy house and show her everything we had prepared for her. And I wanted to be the one to give her the real first bath...in her home. (Poor Jared)

The only picture of her "first" bath.

SYMPATHY VS. EMPATHY

A really difficult aspect of having a baby in the NICU is that it is an experience that literally NO ONE who has not had a baby in the NICU understands- not even close friends or family. And a lot of people think that they can imagine what it must be like. Not even every NICU family can relate- those who spend 3 days in the NICU for jaundice have no idea what it's like for those who spend 100 or more days filled with surgeries, breathing machines and ups and downs. 

I had so many people telling me stories of others that they know who had a baby prematurely who "turned out just fine", "is healthy as can be now", etc. While I know that these people were ONLY trying to be encouraging (and probably were at a loss for what else to say to me), this was frustrating to hear. That is great for them, but everyone's situation is different. It made me feel like they were downplaying the seriousness of our situation. It seemed as if they were saying, "This REALLY is not that big of a deal. You need to just get over it." Maybe the baby of the family you know weighed 5lbs 10oz and was born 2 weeks early. 

I had several friends ask if they could swing by the hospital to meet Eleanora in the days following her birth (a few with their small children). I wanted to scream out, "ARE YOU KIDDING ME?! Do you not realize that she is in the INTENSIVE CARE UNIT!? You could bring germs in that could kill her!" But of course these people had absolutely no idea how serious things are for babies in the NICU. Again, I KNOW that their only intention was to show love and support by coming by to meet her. And my reply was, "She can't have visitors right now, but we can't wait for you to meet her!"

I had people get offended when I posted articles on my Facebook about "what not to say to a preemie parent". I think I literally had maybe 2 people say that they had skimmed the article. This really made me sad. I was going through a really difficult time and was desperately trying to be understood.

I will tell you the things that I appreciated during this time. I appreciated the random people who private messaged me on Facebook to tell me that we were on their minds and they were praying for us everyday. I appreciated when my husband told me that his sister was reading articles about preemies and the NICU experience. I appreciated when my mother-in-law signed up to come to an informational meeting about preemies. This told me that they cared enough about us to WANT TO UNDERSTAND. I appreciated when, instead of making silly comments to try to make the situation seem less serious, people asked me questions about what we were going through. I appreciated the care package that my wonderful friend Johanna sent me after she texted, "I WANT TO DO SOMETHING TO HELP! WHAT CAN I DO?!" and I said, "I have no idea." I appreciated the flowers that my dear friend Tabby sent me to let me know that we were in her thoughts. They reminded me during all of those sad nights when I got home without my baby that we DID have people supporting us, loving us, and praying for us. I appreciated the 2 friends that mailed us gift cards for food because they wanted to do something to help. All of these small actions made a huge difference in this time in our lives and did not go unnoticed. I can't even put into words how grateful I am for these few people.

 THE DAY SHE CAME HOME

Rather than tell you about it, I will show you what the day she came home was like. 

On my way to the hospital!

So excited to go home!

The last picture of her in the open crib

Only have to disconnect her monitors and then we are FREE!

Her first time outside of the hospital!

We're HOME!

Get me outta this thing!

LIFE AFTER THE HOSPITAL

Eleanora is now 6 months old and guess what? She really is healthy as can be. We have been SO SO BLESSED. All of the nurses telling us that she was "a big girl in a little body" were exactly right. It doesn't appear that she will have any long-term issues, and she is basically right on track developmentally. She is in the 1%ile, so she still is tiny, and who knows...she might be tiny forever. 

Does this mean that we should just "move on" and "get over" everything that it took to bring her to this point? I definitely get the impression that some people think we should. I see the look on their faces when I mention "adjusted age" or something that a NICU doctor told us to be careful about. The expression is just a step down from an eye roll. 

I have had people tell me that she will never develop an immunity if we don't expose her to more germs. It's okay. They are uninformed about the differences between preemies and full-term babies. They don't know how many times I was told to ignore statements like that. It just stings a little being made to feel like I'm the dumb new mom after everything I've been through. 

Dear random over-opinionated mom, I promise that I have much, much more knowledge of how to care for my preemie baby than you do. You might have some tips to offer me later (which you should wait for me to ask for), but during the first 6 months, please understand that I have just gone through a total information overload from a professional team telling me every detail of what I need to know SPECIFICALLY about a premature baby. You are wrong to think you know more about it than they (or I) do.

We have slowly phased out all of the extra safety precautions we put in place. There really was no timeline, we just began feeling like she was stronger. We took the sign off of our front door that asked visitors to please wash their hands and remove their shoes. We stopped applying and reapplying hand sanitizer every 5 minutes. We take her out in public frequently. But everything is still a little scary. She got a cold a few months back and I was CONVINCED that she had developed RSV and would end up back in the hospital. Her pediatrician checked her all out and said it was just a minor cold. 

Flu season is coming up and because I'm a nanny, Eleanora and I are exposed to an entire elementary school's worth of germs every day. All I can do is keep breastfeeding, keep handing out hand sanitizer, and keep praying. 

  

After she was discharged from the hospital, we had a home health nurse come and check on her every week, we had physical therapy appointments, she had frequent pediatrician appointments. I had to fight to breastfeed every step of the way. I was still pumping, trying to get her to breastfeed, and offering bottles of breastmilk every 2-3 hours around the clock for a few weeks. Guess what? That (and cleaning bottles and pump parts) took about 1-2 hours. So my life for a few weeks was literally just figuring out how to feed my baby. Eventually she got the hang of it and we got her to switch to exclusive breastfeeding. 

There were a few beautiful uneventful weeks when she was eating like a champ and everything seemed so unbelievably easy. After that, she developed severe acid reflux. So then she would breastfeed, vomit so much that she would need an outfit change, I would need an outfit change (and a shower if it got in my hair), and usually we needed to change the sheets on our bed. As soon as that was cleaned up, she would need to eat again (since she had nothing in her stomach after vomiting). I was back to being completely exhausted and spending all of my time feeding her and then cleaning up after her. 

That wasn't the worst part of the reflux. The worst part was that she only weighed 6 pounds by this point. And all I could think every time she threw up was, "all of that milk was supposed to help you get big!" She would choke on the vomit as it came up and one time she stopped breathing for a few seconds. Jared was with me that time and I, of course, panicked. After she recovered, I handed her to him, began shaking uncontrollably and sobbed hysterically. I said over and over again, "I can't do this. I can't do this." I felt completely inadequate to handle this sort of situation without a team of nurses and doctors. 

I called Eleanora's pediatrician and an after-hours nurse. The only advice we got was, "If she begins to turn blue, take her to the emergency room." We had already been required to take infant CPR before her discharge, and really beyond that there was nothing we could do. It was just another huge reminder that all we could do was pray and trust God to take care of her.

She was put on Zantac for her acid reflux, but after 2 weeks of that not making a difference, I decided that the last thing I wanted to do to her little body was pump it full of unnecessary medications. We stopped giving it to her and took her to an infant chiropractor. After 3 adjustments, her reflux went from occurring 1-2 times daily to once every week or less.   

While going to the chiropractor, we found out that she had an "overlapping palate", which was explained to us this way: The shape of the roof of her mouth looked like the St. Louis arch (high and narrow), and is supposed to look like a rainbow. What this meant is that her head shape was also long and narrow and she would grow up to have expensive orthodontics bills to fix it. The chiropractor recommended us to see a tongue/lip/lactation specialist to check it out. When we took Eleanora there, we found out that she could not move her tongue from side to side at all, only had about 50% movement up and down and was also lip tied. They were astonished that not only was I not in terrible pain while breastfeeding her, but also that she was able to gain weight with all of those hurdles. We had both her lip and tongue tie released with a laser, which required 2 weeks of "stretching" her wounds open so that they would not heal back in place. We had to do this every 4 hours round the clock, which made for a lot of long nights when her eating schedule didn't align with the wound stretching schedule. Not to mention, we had to inflict pain on her and her little tear-filled eyes looked up to us like, "WHY ARE YOU HURTING ME?! I THOUGHT YOU LOVED ME!"

What we are thrilled about is that we finally feel like the little setbacks and hard days that we have are part of the normal new parent/baby experience. We know that everything that happened with the pregnancy, birth, and NICU stay were part of God's plan for our life and for Eleanora's beginning. And all we can say at the end of the day is Thank you to Him for bringing us through it and to this point. We are REALLY blessed.