The Lie: I'm a bad mom.

There is a poisonous question that every mom asks herself at least five times a day. Am I a good mom? I haven't felt like I was a bad mom until Monday this week. Leila had an appointment with her feeding therapist and it was the worst experience I have ever had. I feel like I have to justify myself which I know I shouldn't have to do.

Let me back track a few weeks when we first got home. Leila pulled out her NG tube during the night and my first instinct when I found her that morning was to put it back in. I was told by many nurses that this would happen a lot. The NG helped get feeds into her tummy when she was still learning to take a bottle. We trialed many feeding styles and ended up with the same result, puke. Leila would throw up damn near every mL from her feed every. time. she. ate. The day she pulled her NG Kyle suggested we try and feed her for one day with a bottle and see how she did with the NG out. To what he expected she did better. We had no instances of puke for a few weeks. We had one time although I hit her gag reflux so I'm not counting that. The NG tube goes down her nose and into her belly. This can cause aversion to eating for some babies. When the tube came out and she was eating better I thought maybe we would be through all of this tubing.

LeiLani wakes up around 7-7:30 every morning after sleeping a full night. I know, it's lovely. I will make her a bottle first thing and she will drink about 2oz and then she'll fall asleep for about 30 minutes. When she wakes up she is clearly hungry still because she cries. She will then eat the rest of her bottle. Some days, she would eat every three-ish hours with the same habit of falling asleep. Other days she would feed on demand. At the time we were released from the hospital Leila was using a preemie nipple on the bottle because while learning to eat the first level was too overwhelming for her. As she began eating better for us we noticed she was working too hard to get the milk out and figured that was why she was falling asleep so we went up a level.

While we were in the hospital Leila was on a schedule for eating. Whether she was ready to eat or not she was fed. I have always believed in feeding on demand as that is what literally every baby I have come across has done. My child is a case I have never experienced. Medical professionals know how to deal with CDH babies and gave many tips and suggestions that they know would work so I listened. LeiLani started her own routine of eating which isn't what the hospital had suggested but she was eating nonetheless.

At the appointment Leila was weighed and they took her measurements. We were taken to a small conference type room where a nutritionist and another therapist met with us. They asked how much Leila was eating each feed. I would explain some days were better than others with schedules and glances to each other were made. "So, how much would you say she's eating in 30 minutes?" "Most of the time it's about 2-3oz." I answered every question they asked, each one more and more pressing on judgement. The looks on their faces when I said she slept through the night is imprinted in my brain forever. Apparently that's not okay. Being in a room with two women who know more than Kyle and I do, pass glances to each other right in front of us and then going "mmm ok" was seriously the worst.

I have felt like LeiLani was doing better. She is intermittently on oxygen, the NG tube was out, she's holding her head up, she's holding her bink in herself most days. All of that was smashed at this appointment. They looked at us like we were the kind of parents that don't dress our kids warm in the winter. Or that we just didn't feed her, which I guess is what it looked like. It's nice to have doctors by our side to teach us what to do with our daughter. It is nice to learn her quirks and be able to provide what she needs. What isn't nice is going somewhere where we are supposed to feel valued, safe and that we are doing what we should be doing. I felt judged and continuously told Kyle I needed to go home. At first, he asked why until he saw my face and then he knew. I was seconds away from being me and we all know how that goes.

A comment was made that was my last straw. Kyle threw his hands in the air and shook his head and I spoke up. Two weeks before this appointment we met with her cardiologist who showed concerns about her left lung because it is underdeveloped. Overall we were cleared and he was the one who wanted intermittent oxygen. The following week we met with LeiLani's Pulmonologist and the first thing when she walked in was to say that LeiLani's lung was collapsing. Wait, what?! She was terrible with explaining things to us even though I asked her to clarify. She just looked at me like I was dumb as rocks. Shortly after that appointment we met with her surgeon and he had nothing but positive things to say about Leila and her healing. He commented on her lung and said he had zero concerns. That made us uncertain if the lung was actually collapsed. When the comment was said from this doctor on Monday she said "lungs are looking great and they're clear". I went off on her. I spoke out that I was concerned she had a collapsed lung and made her pull up the scans. She said nothing about being collapsed just that it was underdeveloped. They didn't know LeiLani had CDH and that she was in their NICU. Right then, I had enough and I couldn't wait to leave. I don't even think I said bye when we left.

We got to the car and I bawled. The first question that popped into my head was "am I even a good mom?" Am I really doing this thing right? Do any of us really know? What defines a "good" mom by societies standards? My input is as follows: if your children have a roof over their heads and food in their bellies you're a good mom. If you teach them right from wrong you're a good mom. If you dress them for the appropriate weather you're a good mom. If you feed them nutritious foods or even McDonalds food you're still a good mom. What works for you is your business. The downfall for us is that we have so many people caring for our child that it makes a tight space for too many different judgement calls. I say, if you have no idea that LeiLani was a CDHer and born at YOUR hospital I don't want you caring for her. I am a good mom. I may not be following to a T everyone's suggestions but Leila is fed. Leila is learning everyday and she is happy. No one will ever make me feel like I am a terrible parent. Now, I will speak up against negative judgement. I think that every mother should do that. Speak up to people who think there is only one way to be a mom. Speak up to people who have an opinion about everything and especially to doctors or therapists who pass judgements with facial expressions and are passive aggressive. I am a bull and I have horns that could kill. I will advocate for my child and I see her progress I don't need any opinions.

Home

We walked in the door and it didn't feel like home. LeiLani went into immediate shock and her oximeter began beeping like crazy. The alarm on that thing is incredibly loud and even on the quietest level you can still hear it go off from outside the house. The house was stuffy and smelt like Kyle's work clothes. Kyle was bringing things in from the car and I was trying to figure out where to set up Leila's feed because it was a little passed the feeding time. The NG hooks to a bag that holds the milk she'll take. That bag is connected to a machine that looks like an old Gameboy. We were told that the bag had to be roughly a foot above the machine so that the cord didn't clog up and the feed would be more successful. To make this happen you can get a pole from Home Health but we didn't have one yet. We ended up just pinning it to the wall. I moved Leila's bassinet to the living room and let her be in there while the feed ran and I started to clean up the house. She cried a lot and the feeling in our home was tense as we both scrambled to get settled in.

Kyle went to work shortly after we got settled in because we had gotten home early enough he could still get some hours in. I was left alone and I set up the couch, grabbed a few blankets and I snuggled my baby. I dreamt of this moment everyday while she was in the hospital. I dreamed of it differently than what reality gave me but that's life. I found myself overwhelmed with the clutter in my home and wasn't able to clean. Do you ever look at a mess and have motivation to take care of it but you don't know where to start so you just don't do it? That was me.

The next day Leila had her first appointment with her pediatrician and this is quite a story. We all woke up at 7 and Kyle got ready for work. I made it a mission to not be the mom that's painfully late to her appointments. I got LeiLani dressed warm and began her morning feed. I went and got myself ready and found that I still had 40 minutes until it was time. In my head I thought about how I didn't understand how families are always running late but I would soon learn. I grabbed Leila's car seat and set her inside. I had to take her oxygen and the annoying oximeter with me. I packed her diaper bag and was all ready to go. Forgetting Leila was still attached to her running feed I lifted her up hands full and turned to walk out of the room. This is where I learned how families are always late. The tube pulled right out of her nose and she started screaming (the tube doesn't actually hurt her. It's just uncomfortable). Milk was squirting all over my bed and she still had half the feed left. For a second I thought I could totally put it back in myself. Then I remembered that no, no I couldn't. I grabbed the feeding supplies and supplies for the NG and left to the car with Leila still crying over what just happened.

I'm about half way to the doctors office and I see that it is five minutes passed the time we are supposed to be there. When I got to the office holding all of my daughters attachments I felt like everyone could tell I was a mom who didn't have her shit together. The receptionist didn't even realize I was late so that was cool. During the appointment I just kept apologizing for everything. Leila's nurse had never done an NG placement before and it was still pretty new for me as well. She held her head while I inserted the tube. To my surprise I got it in rather quickly and my taping job was immaculate. Literally. I was so proud.

My dad came over just after we got back from her appointment and he looked concerned the entire time he was at my house. Some of it was because of the late notice for November rent taped to my door when he initially knocked. He lent me his phone (oh yeah, btw I shattered my phone) so that I could call Home Health and get the rest of my equipment since I couldn't work my screen to answer their calls. LeiLani's oxygen was in the red zone meaning it was just about empty. I vented my feelings of being home and cried a little. I didn't realize coming home would be so stressful and unfulfilling. I dreaded going back to work for several days even before we had been discharged from the hospital. My head was foggy and I couldn't tell you what end of my life was up. My dad came back to my house every day the rest of the week. Laura offered to come clean my house and even brought her own cleaning supplies and food. She organized my clutter and helped me throw a lot of things out. She washed all of my dishes and cleaned under my furniture. That day my house was organized enough that I could breathe again and I knew where I could put all of Leila's supplies so they weren't all over the house.

We kept running feeds through Leila's NG for a few more days and then the next week when we woke up to it in her hands. We were warned that kids pull their tubes out in their sleep and that's exactly what happened. I look over and as she's holding her tube (with it dripping milk) she's smiling. I went to go put it back in and Kyle said he wanted to try for a day only bottle feeding and see how she managed. We made it that day without the tube and successfully ate each bottle without throwing up. Later, I reached out to a support group for CDH families and asked if any other kids had this happen. Turns out the tube can cause an aversion to eating by mouth but once it's out the kids can thrive. We haven't placed the tube since.

The first weekend being home I went back to work. I still felt a heavy weight but I knew I needed to do this. The house I am over was still afloat, the individuals were happy and I got to know my new employees. When I left that evening I felt really good and really motivated. The key to success at work is to not bring your home life to work. Same goes for home. I don't know about you but I have always struggled with that. I am always working that's just how I am. I have been successful so far with not worrying about my home life while I am at work. I am able to focus on the individuals that I care for and when I go home I leave work outside. We have been home for almost four weeks and I have felt so balanced. LeiLani and I have a routine and she sleeps through the night.

Adjustments are always rough, but after you find your groove it's amazing how quickly you rebalance. Leila wakes up with smiles and is very expressive. She loves baby Einstein's music and rocking. Her very favorite thing is bath time which, thank God!

NICU Graduate

The day that Leila moved to another room was shocking for me. It was a good thing because she was in the ECMO room and obviously meant she was sick. This room she shared her nurse with another baby. It was really hard for me to adjust to that room and little did I know just a few weeks later we would be moving to a whole unit. I never realize how comfortable I make myself with my surroundings until they're moved and I hate changes. I made friends with the nurses in bed 33. We called each other by our first names and we would talk in the halls of the hospital when we passed. After a while I made friends in bed 4 and sometimes I had Janet with us.

If there is anything that I can say to parents that will experience the NICU is to expect change. Expect to walk in and find your baby gearing up to move bed spaces or units. Be aware that medication dosages will change frequently depending on how your babe is doing. Expect the changes and go with it.

I walked in the second week of October and sat through rounds. We had been told that we would be moving to P3 at some point but all bed spaces were full. Like always, I just roll with everything so I never really thought about when that would actually happen. Then it did. We moved to the infant unit and learned quickly this place was extremely different from the NICU. Here, your nurse has multiple babies and they don't sit in your room. They are at an actual nurses station. I could have food in the room, I could sleep there, I could have a few more people visit at a time and we had more privacy. While in the NICU I got to be really hands on with LeiLani's cares and in the infant unit they let me do damn near everything. 

My mom, Kyle and myself learned about Leila's NG tube. We learned how to put one in, check placement, give medications and feeds through it. I found it very exciting to learn about the tube and how to care for it. In the infant unit the nurses have techs that are like an assistant. They'll ask if you need any help and if you say no, they leave you alone. Meaning you can literally do everything your child needs yourself. LeiLani wasn't hooked to anything other than her oximeter and oxygen so I could move her around as much as I wanted. Being in this unit was a constant reminder that home was just around the corner.

We went off of her morphine completely after some trial and error and it was time to set things up to go home. We took CPR and let me tell you what, practicing on a blow up baby that looks like an alien was not what I was expecting. It freaked my mom out especially because it came in a box and it brought her instantly back to Zayley. We did a car seat trial where she was strapped into her car seat for almost two hours to make sure she did not desat at anytime. After passing with flying colors it was time to do a hearing test. They did this test while I was gone so I didn't get to see how they do it but she passed. 🙌 We set up her appointment with her pediatrician and had a discharge date and time.

Monday morning Kyle and I sat in her room and gathered all of our things to go. Our nurse that day was so nice and helpful making sure that our shit was in order. We started to leave and as we walked down through the lobby it felt like another out of body experience. Like the one I had when I was leaving the NICU during Leila's surgery. We got her into the car and as we pulled out to leave I felt suddenly like I was stealing her. Then I started to feel immensely happy like when you're about to go on your favorite rollercoaster. My leave pay had dried up a little before it was time to come home and my tank was nearly empty. Kyle and I cashed in all of our change (literal change) so that we could get gas. In that moment I definitely felt like a first time parent and I haven't been THAT broke in a very long time!

Next stop was home.  

Chapter 8. Holding the rainbow

I wish I could remember the date off the top of my head when LeiLani was taken off of the jet ventilator but I know it was a Wednesday. That was the day everything changed. I changed my thinking that day because it felt like things were finally happening and moving up. I walked in to find my favorite Janet watching the monitor on the new ventilator that LeiLani was hooked to. After this day, I started thinking every time Janet works something big is going to happen. "I make shit happen" she said as I walked in the door. She told me not to keep my hopes up because it was just to see how she tolerated it and might have to go back to the jet but we would keep positive. I met up with Beth and we went to parent hour together. When I got back to the room Leila was on a conventional ventilator and I was told at some point I would be holding her.

Janet stood next to LeiLani's bedside and said "ready to hold her?" My stomach sank and all of a sudden I felt sick. Thoughts ran through my head and I realized this was my child. Although I had been saying I wanted to hold her I never thought about what it would feel like to hold her. She's not just any baby, she's my baby and I wanted to run. I told Janet I was nervous and she assured me everything would be fine. I sat in the chair waiting for the RT to come in and help transfer Leila from the bed to me. I felt cold but I was sweating -anxiety. The RT unhooked the tube inside LeiLani from her bed and hooked it onto my shirt. Janet boxed me in the chair with pillows and slowly they moved her to me. She was asleep because of the Morphine and Precedex so Janet and the RT placed Leila in a position where the tubes were steady and we would both be comfortable. She was so tiny on my chest and she smelled like lavender. I started to feel myself gearing up to cry and tried to suppress it. I looked up and Janet looked like she was about to cry as well.

Viewing this moment as a memory seems surreal. I talked about wanting to hold her and wanting to take her home but I never thought about what it would feel like when those things were finally happening. I think the feeling of holding your baby for the first time is the same feeling for most or all moms. All of the cliché sayings of how its a special moment is more true than I ever thought it could be. I remember that while I was holding her I felt restricted. I was too scared to do a little squeeze or adjust even slightly. I felt like I was holding glass that was seconds from shattering.

LeiLani never went back to the jet and the next day I held her some more. This was a moment I wanted to share with Kyle because for me I wanted all of the firsts to be with him but that doesn't always pan out. Looking back now I'm glad I experienced this by myself. There's something about a mother and her child sharing the intense connection for the first time and having my moment was so important. The next day I experienced skin to skin and I cry thinking about it. Looking down at my daughter despite her tubes and cords she really looked cozy snuggled on my chest. We pulled the curtains and the nurse over Leila took some amazing photos for me.

Watching our family come and hold her was an overwhelming feeling. On my side I watched my family hold the very thing that was sent to heal my us. The grandmas first holds were the most special for me. This girl doesn't even know how special she is but she knows she's loved for sure! The day Kyle held her for the first time was so cute, he looked so nervous. He just kept saying she was cute ha ha.

I have a few friends that are soon to be moms and I can't wait to see them experience that first hold with their child. It is a feeling that can't really be explained, you just have to experience it for yourself.

 My dad holding for the first time. He blessed her that day.

 Grandma Kayleen 💙

 Grandma Wai 💛

Daddy's first hold 

Chapter 7. A little bit of everything.

Primary Children's has a program every Wednesday afternoon just for NICU parents. We sit around a conference table and tell our stories, eat lunch and listen to a speaker. It's their way of getting us out of the NICU to eat and engage with other parents for an hour. I have social anxiety and sweat whenever I have to talk to people I don't know well but I still went.

There were many different stories parents were sharing. Some babies were born at 23 weeks and all they were waiting for was to gain weight so they could go home. Others had diagnosis' that needed surgery like my Leila. When it was my turn I talked really fast and stared at the table. I didn't say much about her except that surgery would be soon -it was the next day. I've been to nearly all of them since we've been here and I've become social friends with a few parents. For me, even though what Leila has had to fight for I am so grateful it's not as bad as some of the other babies in here. Those parents are so strong and they are that way for their kidlet.

We stayed on the ventilator for about 4 more weeks. Things happen really fast here in the NICU and one day I was told they wanted to get onto a smaller ventilator by the weekend because she was managing so well on the jet being on the lowest settings. Two days later, I walk into a new ventilator that I was able to hold her on. Of course, with my luck it was Janet. She says "I make shit happen". She said they would monitor her and see how she would tolerate the new ventilator and then later I could hold her. Within the next four hours there I was sitting in a chair being passed my tiniest baby. (that's a separate post.) Since LeiLani was doing so well on the new ventilator they got rid of the jet for good and she was moved into a room where two babies share one nurse. It was super overwhelming and it really depressed me to be in there but it just meant she was doing so good she didn't need so much attention and that she was closer to going home.

Her recovery has been a lesson in strength. For her, she doesn't even know how drastically different her life is from other children. She thinks it's normal to be hooked up to machines, hearing the beeps from monitors around her. This is her life and it's her normal. Beth pointed that out to me and it gutted my mommy heart. I hadn't even looked at it like that. So many times I find myself sucking up all of the pitty in our situation because it has been so hard on me and it has been so hard on Kyle. But in the end LeiLani is in the hospital. It's LeiLani who is being poked and living in the hospital. It is LeiLani who is recognized by the state of Utah as institutionalized because she is essentially living here. In the end, it is her that deserves the pitty not us or anyone else. Despite her hard start to this life she smiles every morning I get to the hospital to sing my made up happy morning song. She stares at me like I am her God. She won't look at anyone else if she knows I am near I have to hide ha ha. She keeps me strong. She reminds me that it doesn't matter what you have to trail through in this life you just need to smile and love. She is my everything.

I have loved just about every single nurse I have come to know here. But, it's not all sunshine. I try to focus everyday to be nice to everybody even when they don't deserve it. It's sad I have to be that way but I have gone from a very unkind person to someone who try's to understand everyone and be kind. That doesn't mean I don't lose my shit though. There was one specific nurse I will never forget for the worst and I hate that. My personality walled with her and I wanted to push her out of the window. I was stuck with her for two nights and even though I hated her, she was good with Leila which made me hate her more. I did get to complain about her to Amy and that made me feel better.

When you first get into the NICU, here at least, you think it's going to be forever. There is thick fog and you don't see the milestones you'll see your child reach and you think that "home" is imaginative. I had a few days during this that I worried she'd do good and then take steps back and even feared her life. It makes me panic when I hear her sound groggy because I think she's suffocating. I know that no one would ever let her aspirate on her secretions and I always apologized when I would overload my concerns about her needing to be suctioned again and again. Extubation was really sad to watch but I was more filled with happiness that one, I could hear my daughter cry and two, that she would no longer need suctioning. All of a sudden I think, wow, every week there was less and less at her bedside and now, there is almost nothing. We took away ventilation, we extubated her, she got her strips off her incision and we took out her IV. She isn't on nutrients and the drip machine is gone. She is off of sedation meds and they took away her reflux medication. We have eight days left of Morphine and she's learning to bottle feed so she'll get her feeding tube out. This is how I have confirmed her care is extraordinary. She survived CDH and has overcome her trials with such a fighters attitude. I am glad I have a feisty daughter. Proud even. She won't be taking any of your shit.

To hear LeiLani could be going home in the next week and a half is overwhelming on a lot of levels. I have a new environment to get her used to and I have responsibilities I didn't have before. BUT I get my baby, Kyle gets his baby and we get to be a family together instead of just on the weekends. I have loved the care that PCH has given my Hine and I have also loved the care I have received myself. These are the people you want surrounded by your child when they're sick. 

Chapter 6. Surgery.

The date and time of surgery was up in the air as we just took it day by day. I learned that in the past they would rush into surgery and didn't have high survival rates. The surgeons like to get the babies stable after transfer and learn more about them before going in. We learned quickly LeiLani doesn't like sudden change, doesn't like to be touched or moved and hates over stimulation. She is extremely sensitive and I am so thankful they waited with her. It was unpredictable when they would do the surgery and although I was glad they wanted to wait I was nervous if more days passed they would just have to do it anyways.

Wednesday the 19th they did rounds and a few more members from surgery came by to discuss details about the what the surgery entailed and what they planned to do for recovery. Honestly, like a lot of things, it went right over my head. For someone who isn't medically trained it's best to not use medical terms. What do I know? Anyway, they planned to do it by the weekend and had me sign consent for anesthesia and for surgery. When my mom got there she spoke to the surgeons and because she knows more about medicine than anyone I know she was able to understand what their plans were. They planned to go in on her left side and move the bowel down from her chest and place it where it was supposed to be. They would then seal it with a muscle flap and use the muscle from an area where it wouldn't be missed. A concern was that sometimes babies with CDH have smaller stomachs because nothing was growing in there. They would move the bowel down and if the stomach was too small to seal closed they would have to leave her open. Essentially wait for her stomach to stretch enough to close up. They said there were two ways to do this procedure and one was to go in normally and move down the organs. The other was to use a camera to see where everything was specifically and then move it down. The possibility of herniating in the future was higher if they used the camera. The doctor we were lucky to have didn't want to use the camera and did the procedure normal. There are still possibilities of herniating in the future but the odds aren't as great. Lastly, after surgery they would give a medicine that would make her paralyzed for 24 hours. They wanted to give LeiLani as much of a chance as possible to heal without moving around and fighting recovery. Although I understood that it was still hard to swallow. I updated my family about the surgery being later in the week and then all of a sudden it was scheduled for the next day. That's something else I learned quickly in the NICU, plans change rapidly.

The next morning I found myself awake at my usual 5am. My mom left me her keys and said she'd take the shuttle to the hospital later. I had a very nice nurse who was more than ready for this procedure. She explained to me what her part to help would be and elaborated further the plan in entirety. That is something I adore about nurses. They know how to explain things and they know how to work with families. During my own recovery I wasn't eating. I drank all the water I could get my hands on but when it was time to eat I just couldn't. A tray came around the NICU with coffee and simple breakfast food. I grabbed a muffin and a cup of black coffee and sat in my chair trying to ease my mind. I brought my Koru with me and tried to project the meaning. My mom got me a Koru green stone necklace in New Zealand and it means "new beginnings". She got it for me when I was going through my new phase into positivity a few years back -if you all remember 😏.

11am came quickly and suddenly things got really crowded and really hectic. I was told I would need to leave once they were ready to start. I had an anesthesiologist introduce himself amongst the noise asking me if I had any concerns or questions. "You put my daughter to sleep right? Sounds pretty standard" I said. The main surgeon came in with a new consent form and asked me to sign. He said he hadn't seen the other form I had signed and didn't want any risks. The room was so crowded I didn't know where I was supposed to stand. Do I stand next to Leila? Do I leave? I went over to LeiLani and gave her a kiss and for a moment before my eyes opened it was just us. Before I knew it I was backed to the door and everyone started scrubbing in and changing into bunny suits. Oh, did I mention they did this at her bedside? The door shut and I was standing outside.

Walking out of the unit felt like in the movies where they blur out the surroundings and the noises are fuzzy as you are walking. The doors opened and I was suddenly brought to reality. I walked straight into the bathrooms just right outside the unit and bawled. I texted my sisters "surgery has started and I'm in the bathroom crying." They were all at home going through their own feelings of the surgery. Laura came to pick me up and took me to lunch. It was really nice to get out of the hospital and go somewhere there was life and some normality. When I went back to the hospital it was like nothing had changed. Visually LeiLani was the same. Her skin complexion was normal, the tubes were still doing their job and she was still "sleeping". She was definitely paralyzed and my heart hurt as I thought over and over "why her?"

I didn't get to talk to the surgeon until the next day since they're always all over the hospital. He told me everything was straight forward. Her stomach capacity was moderately tight meaning they could close her but it was a little roomy in there. I was thrilled to see she was closed. They sealed the diaphragm with a muscle flap and he stitched her up in a way that when she's older you wont really notice it. I liked that and I am sure she will be grateful for that in the future. I feel better sitting next to her. Even though she can't see me and I still don't know what color her eyes are I do better sitting there. The hill of surgery was indeed an emotional mountain and we are so glad it's over, that we made it through and that we are the recovery bend.

Chapter 5. Primary nurses

I came in the next morning and was feeling a little more comfortable navigating through the NICU. I had grabbed a coffee and went to bed space 33. This is where I met Janet. Her hair was up in a high bun and bangs in her face. She spoke confidently and explained what she was doing and why she was doing them. I instantly loved her.

Wednesday's are for parent hour. She handed me a flyer and invited me to go telling me how much fun I would have meeting other parents with NICU babes. My social anxiety began to well and I really didn't want to go but felt bad denying the offer so I happily said "yeah for sure!" Why do I do that? "Even if it sucks at least you get free lunch out of it." Can't deny that truth. I went to parent hour and actually did enjoy it. It was a conference room setting and there were a few parents who also looked very unexcited to be there. We went around the room and introduced ourselves and told our NICU experience. There were a few parents who had had their babies early summer and were still in the NICU. Some who have had multiple surgeries. Some who had left and had to come back. I told my story rather quickly, I talk rapid when I'm nervous. After, I was stopped by a mom who told me her niece had the same condition as my Leila and though her story was sadder than mine, it gave me hope for Leila's future.

Throughout the day I talked to Janet about my life and got to know her fairly well. She asked if she could be a primary nurse and I was puzzled. To help keep things as consistent with cares they offer primary nurses who will work with the same babies. I agreed and she filled out the paperwork and instantly we became family. That evening during shift change I met another nurse who would soon become LeiLani's next primary. Amy is the nurse that cares about small detail. She takes the time to pick out the cutest linens in the basket that match. She puts bows in babies hair and teaches the parents how to do cares for their baby. I got to help with giving Leila a bed bath. It was extremely difficult having to navigate through the cords and tubes hooked everywhere. I was still nervous about the equipment and didn't want to bump a single thing. Later, I would learn these things weren't so scary. Amy became our primary after I had talked to Janet the next week about how much I loved her. We agreed I should talk to her when she came in that night. Amy walked in the door and Janet says "so me and Annie think you should be a primary because we love you." I'll never forget the look on Amy's face when I said "please".

Both of these ladies have become a part of my family. Beth comes to see Leila a few times a week and has gotten to know both Janet and Amy well. My mom adores them and I feel safe leaving each night knowing they are with her. Once you're accepted into my family you're there for life. Hopefully they're ready to come to parties ha ha!