Thursday, December 13, 2018

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.


Sunday, December 2, 2018

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. ๐Ÿ™Œ 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 clichรฉ 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 ๐Ÿ’™
 Grandma Wai ๐Ÿ’›
Daddy's first hold 

Tuesday, October 23, 2018

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. 





Thursday, October 18, 2018

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 ๐Ÿ˜.

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.


Monday, October 15, 2018

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!

Saturday, October 13, 2018

Chapter 4. NICU bed 33.

I woke up early the next morning and couldn't fall back asleep. I'm talking 5am early. My mom left me her keys and I drove up to the hospital to see my girl. I checked in at the front desk and got a parent badge and an access card to get in and out of the NICU whenever I wanted. I went up to the NICU and checked in at their front desk and the nicest girl showed me where to scrub in and the room Leila was in. It smelled strongly of cleaning supplies and hand sanitizer. I had no idea how much sanitizer I was going to be accustomed to at bed 33.

I walk in and see about a half dozen medical staff in the room. This is considered "rounds" and they meet every morning every single day on every single patient. My little girl was laying in a bed with the top off...I COULD TOUCH HER. Same cords and tubes but now there was a new line in her left arm connected by several medications. I would soon learn about many medications and their purposes. I would learn about dosages and weans and the sounds her drip machine would make when it was time for more. I walked slowly to the bed afraid to touch anything or disturb the motion to take a little peek. I was greeted by a nurse with blonde hair and blue scrubs with a very welcoming smile. "Are you mom?" A very quiet and timid "yes" slipped out as I felt my anxiety at its highest. She slid up a chair and invited me to sit down next to the bed and informed me they were doing rounds and would be rounding on LeiLani soon. I still clenched my bag and sat very inside myself unable to touch my baby and just stared at everything. "You can touch her. She's very sedated but you can touch her". My hand shook as I pointed my index finger to touch her hand. When my finger met her tiny hand her toes began to spread and my heart fluttered. "She's alive" I thought. 

I've been thoughtful on the morning Zayley died and why I didn't come. I knew in the moment it wasn't a good idea while I was so deprived of sleep and didn't have it in me to drive to Ogden but it was something else. Something told me to stay home. In the moment Carrie asked if I would be coming I went to say yes and then stopped and I think I just said "I'm not sure." I've talked to my family one by one over the last year and we talk about that day and I feel unrelatable. Trying to keep a baby from dying there were tubes and closed eyes. My niece laid in her bed the same way my daughter laid in hers. They both had tubes and both eyes closed. Members of my family passed my niece around knowing she was gone but said goodbye one last time. One last squeeze. I realized in the moment I glanced at LeiLani inside this bed that's what urged me to stay home. I had to be ready for this and not traumatized by it.

The nurse, a resident, a pharmacist, surgical staff, a respiratory therapist and a nurse practitioner circled around us and all I remember were the smiles they wore on their faces. "LeiLani Jones born September 15th with a left sided DH. Unrepaired at this time working on staying stable." One by one each gave a statement in their area and plans for her. Named off her medications and the dosages per hour and what their plans were for ventilation. "She doesn't tolerate being touched and requires a higher setting on the jet." Hmm I have a child that doesn't like to be bugged? Weird. Eyes turned to me feelings of panic and sweat hung over my head from a "do you have any questions?" I said "no. Wait, yes. What does this do?" and pointed to the ventilator. I felt I needed to ask at least something but I was so overwhelmed I couldn't. All I could think was how much I wanted my mom. I knew she would ask the questions I couldn't. The nurse practitioner explained every single thing that was hooked to my girl. What they did, what they were for and how much she estimated she would be on them. I vigorously shook my head yes as I tried to retain all of this new information and adjust to the fact I was even here.

 When mom walked in the room I nearly broke down. I decided to take a step back from the bed and sat in a nearby rocking chair. A lactation consultant came by and to talk to be about breast feeding. She gave me some papers and a bag of supplies. A social worker made her way in and was extremely nice to me. She asked how I was doing before she spoke a word about LeiLani. She looked me in the eyes and asked me what she could do to help me. She asked me about financial aids and how to get the help I needed. She asked me if my questions were answered and if I needed space. She was the best face I greeted in that room. Since LeiLani was born not a single person in the world asked me how I was doing before asking about my daughter. The truth is is that everyone's first thought is how the baby is and it's not that they don't care about you it's just that they don't think about it. I never realized that until it happened to me. I met one more person that day that gave me a package with a small fuzzy blanket, an "about me" sheet for LeiLani and a few packets with hospital information.

My dad came in shortly after that, gave me a kiss on the top of my head and then with beaming eyes walked straight to LeiLani. He touched Leila's hand with his index finger just like I did. He looked up and said "wow Anne, she looks just like you. She's beautiful." My mom was off to the other side of the bed snapping as many photos as her phone could possibly hold. I had them stand over to one side to get their first photo with her and instead of looking at me they both just stared at her. It made for a really cute photo and definitely shows the love they had to keep inside those nine months. A cardiologist came in and did an echo on her. When I was pregnant I had a fetal echo and it showed a hole in between her two chambers and then a few weeks later the hole was gone. This echo was to ensure the hole was really gone and it was! A tiny doppler for a tiny chest. I stayed and talked to her nurse all day started to feel more at ease as time passed. I got more comfortable touching her and stayed until about 9pm.
 



Chapter 3 Ronald McDonald House

As I awaited getting discharged from the hospital I had gotten a referral from my doctor to stay at the Ronald McDonald house. Several years back when my niece Serina was in the hospital at PCH my brother was offered a stay at the House but unfortunately they were all full. My mom worked hard playing phone tag and making sure everything was set in stone by the time I got discharged. We gathered all of my things and away we went.

It had been a long day and we were both tired. I was wondering how LeiLani was doing and had wondered when I could go see her. My doctor from Logan had prescribed me a medication to help with my postpartum drama and getting it transferred to the pharmacy here successfully was very difficult. It finally came in and was ready and my mom was my hero as always as she fought for everything she knew I needed. We got checked in and was given a rather quick tour of the whole house and I just wanted to go to bed. Laura stopped by to give me a replacement bra since she bit the last one off of me during labor.

The house is big and is laid out like a hotel. There are four floors and a gorgeous kitchen. The first floor has the lobby and several couches to sit on. There's a giant fish tank full of large fish and each one has a name given by kids who have stayed there. Down the hall they have a gym, laundry room and a theatre room. They provide soap for laundry and have movie nights several times a week. The second floor has the kitchen and space for seating. Outside of the kitchen is set up like a living room with a fireplace and has some computers to use. The kitchen is equipped with stoves, ovens, refrigerators and cutlery. There is endless supplies of food that is donated from the Mormon food bank and other donations. Everything that goes into this place is purely from donations. It is amazing and it really is a home away from home.

They like to encourage a community based space so there are no T.V.'s in the bedrooms or food. You have free range to the whole house and I like to see families sitting together getting to know other families and their hospital stories. This place stretches to PCH so if you are there while your child is having surgery or something you can go down and get food or take a nap. Your key card that you use to get into your room is your access card to the hospital rooms as well.

During our tour I got a phone call from an unknown number and almost didn't answer because my phone was at 1% battery. I answered it anyway just in case and it was Primary Children's wanting my consent to admit LeiLani. I worried my phone would die while I was answering questions and thankfully it didn't. I missed the rest of the tour but would later explore alone. I am grateful for a place like this! A place where I can stay to be as close to my NICU babe as possible.

"The house that love built."

Chapter 2. Recovery and the transfer

After getting stitched up and having a moment to rest I was sent to recovery. I was still feeling high from labor but I am grateful they allowed me to get up and go see my daughter. Kyle wheeled me in and we were given a run down of scrubbing in, cleaning our phones and quick, strict rules. Only two people at the bedside at a time and either Kyle or I had to be present with whoever wanted to come back. We took our family back one by one so they could get a peek of our little honey inside her little box.

She was intubated right after birth and placed on a jet ventilator. Tele wires connected to her chest and abdomen to monitor her heart and respiratory rates. In her umbilical cord she had two lines in for IV's. She was encased in a bed that I referred to as the Snow White bed because I never grew up. The first time I saw her my eyes went straight to her hair and I gasped "babe her hair!" I admired her most perfect features and as my eyes traveled around seeing where all of the cords and tubes hooked up I suddenly felt heavy. I wanted to hold her and I wanted to hear her cry. We weren't allowed to touch her and I longed for when we would be able to. I've wondered why I wasn't able to go say goodbye to Zayley. What it was that urged me to stay home and get rest and I found my answer, and I will explain soon.

In our room Kyle and I were greeted by a very nice man. Dr. Yoder is phenomenal and those around him refer to him as Dr. Yoda. He came in to talk to us about a study he was a part of and during his presentation I fell asleep. He left some information papers and an agreement to sign. When I woke up I read through it, Kyle felt it would be nice to give it a shot and then we talked to my parents when they came in to see what they thought. We all agreed it was a nice idea and Kyle and I signed the form. It was a trial for a med I can't remember the name of anymore. Essentially they wanted to see if the med would help to avoid or replace ECMO. They would start the med and run it for 24 hours and then it would be over. If during the 24 hours Kyle and I decided we wanted them to stop they would stop. We had full control and I really liked that especially because so many other things were happening. They presented us with this because there was a high chance LeiLani would end up on ECMO. To be considered for the trial she had to be within a certain range of lung capacity and breathing and fell right into it. They started the med and had been running it for just a few hours and then LeiLani started to give extra breaths which is a great thing but also meant that she didn't qualify for the med any longer. About an hour later she regressed and the med was continued for the remainder of the 24 hours.

You know when you haven't gone to the gym in a while and you finally go and the whole time you're like "YEAH! I'm so fit!" Then the next day your body is dead? That's what my post labor recovery was. My legs were so sore it was hard to walk and my back and neck was incredibly stiff. I couldn't find a comfortable position on my bed and no amount of pillows aided to feeling better. I had a second degree tear that required stitching and I was so scared for my first pee. I heard horror stories about that first poop and all I kept thinking was "I just pushed a human out of my vagina I can do this". Sadly, that got me through a lot of things during recovery ha ha. I was given a stool softener every morning and night until I was discharged and that helped my life not be terrible.

Monday morning I was told I would be discharged and that LeiLani would be transferred to the Primary Children's NICU. My dad waltzed through the door and I told him if he wanted to see Leila soon he'd better hurry. We headed over to the NICU and they had already started getting her prepped for transfer. We sat outside and waited for them to come out so we could follow along. When they came out it was very intense and they communicated very clearly to each other and walked ever so slow. She was transported with the AirMed team. As we began to wheel out and the reality of everything I had been prepared for had sunken in I couldn't hold myself together. As we walked I kept thinking this isn't what I want I don't want this. I was supposed to just get pregnant and have a baby and then that was all. Go home and be a family just like so many others do. We got inside the elevators and went to the 1st floor and began maneuvering through groups of people coming in and out of the cafeteria area. I could feel all of their eyes on us and I wondered what they all must have been thinking. The University of Utah hospital and Primary Children's connect together through a sky hall to make transfers such as these as pain free as possible for both the patient and your wallet. We arrived at the NICU and were told we couldn't come back and just like that we were separated again.
 The very first photo of Princess Leila




 meeting Auntie Larissa for the first time

 Dad's first selfie. ๐Ÿ˜Š
AirMed transferring my daughter to PCH. She's inside that box.

Thursday, October 11, 2018

Chapter 1. Labor.

I haven't been the best at updating and sometimes I feel a lot of guilt even though I shouldn't. I am a new mother and my role comes with a lot of demanding features I wasn't expecting and some things have taken the back burner and I don't care. Anyway, this will be broken into chapters.

CHAPTER1 Labor..

I read many articles about first time mothers and what to expect. You can only prepare someone so far but ultimately, their story is theirs and will be different from what you experienced. I read a lot about how first time labors can be very simple. You go in, have the thing and then you're done. Bull. Shit. I knew I wouldn't carry to term. I played my last month day by day not making any huge plans or commitments. Work was hard and I tried to prepare as best as I could before I took leave. My last week of work I started labor.

I woke up early Monday morning and felt the rush of liquid and jolted out of bed thinking "it happened. I peed my bed." I went back into my room and couldn't find any wet spots on the bed. I woke up Kyle and said "I either peed myself or my water broke. There wasn't the smell of urine and that furthered my assumption it was my water. I texted my friend that lives across the street, as I do with all of my pregnancy concerns, asking what she thought. "Go to labor and delivery now!" Away we went.

I had a plan for delivery. It was to all be done at University of Utah hospital and not at Logan Regional. I explained my situation and asked if I would be okay to drive down I got a firm "no" and we continued my stay. I was poked about nine times trying to find a line for an IV. Two blown veins and immediate bruising we discussed the possibility of flying to SLC. More money I don't have so let's do it! My mom comes in like a bat out of Hell saying "what's going on why are you still here? Why aren't things moving along? What are you dilated at?" She wasn't pleasant with the nurses and I was extremely embarrassed. Despite the inability to find a vein they were very kind and took decent care of me. I was dilated a one and water was still in tact so they finally let me leave. So I guess I did pee myself. Fun.

We called down to the U and were instructed to stay as close to the hospital as possible in case my labor progressed quickly. Work started pulling strings to function for the coming days I'd be gone and I headed down to my sister Carrie's house in Far West. She started looking up things that help progress labor and decided I could use a walk. We walked together about 8,000 steps (I can't remember how many exactly) and I could feel my contractions come and go as we kept going. Monday night my contractions were terrible and I didn't get an ounce of sleep. I cried, I paced, and I tried to focus on my breathing. The next morning I slept roughly an hour and that was it. Carrie and Cam took me to Target so that I could get some things I'd need after delivery and the rest of the week. That evening we took a stroll through their neighborhood and I was finally tired enough to fall asleep. Again, I was up the whole night trying to cry quietly while my six year old nephew slept in the room next to me. I battled waking up my sister but my contractions were so close together I finally woke her up at about five. We drove to the hospital and by the time we got there magically my contractions stopped. I was still dilated a one and I looked like an idiot.

The next few nights were the same deal. We would call into labor and delivery and the nurse would tell us what to look for. I was spotting, had lost parts of my plug (I regret googling that) and was getting very stressed. We continued going in when contractions were consistent only to be told to go back home. Kyle came down Wednesday afternoon and consoled me as I screamed and cried everyday for the rest of the week. I was dilated a five by Thursday evening and I thought for sure I would get to stay. My contractions were consistent, LeiLani's heart rate was alarming and when the nurse came to tell me to go home I wailed "please do not send me home again". After refusing to get out of the bed to get dressed I was given a shot of Morphine and was told to take a Tylonal. Are you for real?? Cam paid for a hotel right next to the hospital and it was beautiful. I don't remember much of it but my mom said it was beautiful and I'll take her word for it. The Morphine made me sleepy and I recited my favorite parts of the Little Mermaid to my mom -which is the whole movie duh. I've never had Morphine before but apparently I spoke like a sloth.

I didn't make it through the first night not even to 3am. My mom took me in and this time we weren't leaving but we did and I was given a higher dose of Morphine while still dilated a five. That morning I slept for a few hours and woke up unable to move nor lay still it was miserable. I was crying out and began feeling nauseous so again we went back in. By the grace of God I was dilated a six and under the state of Utah apparently that's when you get admitted. I looked at Kyle and you couldn't wipe the smile off my face as I eagerly awaited for the charge nurse to come in. Kyle began updating our families and the nurse came in to tell us "Okay, you can be admitted but we don't have available rooms in labor and delivery". I said "are you fucking kidding me?" Kyle told my mom and she said she didn't know whether to laugh or cry. A lovely nurse came in and said she would be putting my line in for an IV and I began to panic inside. She looked at my arms and said some choice things about Logan Regional that made me cry laugh. FIRST try she got it in and I was later wheeled into admission.

The adventure with my epidural was just that, an adventure. I worried my whole pregnancy about the epidural and swung back and forth debating whether or not I would get one. Turns out some of us have more bone and I am one of those people haha. Once it worked I was on cloud nine and as my contractions continued I slept. The time after that seemed to speed by and before I knew it she would be here.

I was surrounded by Kyle and his parents, my sisters Beth and Laura and my mom. Kyle's parents got a full dose of my family uncensored and I worried slightly they would not enjoy it. I say that because Laura literally bit off my bra in front of everyone because I was itching. She's a loving sister really. A few jokes and laughs later it was time to push out my rainbow. The doctor on call was amazing as she coached me through breathing and pushing. I was taken to the O.R. and an hour later LeiLani was here. There was a slight cry and then silence then she was placed on my stomach. Kyle cut the cord and made a joke about a garden hose and she was passed through the NICU window and that was my crash course into motherhood.


Tuesday, August 28, 2018

Self Reflect

As always I don't know how to feel today. I am always trying to figure out circumstances that happen. Why I feel the way I do about things and I end up rolling myself up into a ball of stress and more questions. I always tell people that it's okay to not have the answer today. It's okay to feel the way you feel today but why can't I take that advice? *insert chuckle* I am a Taurus that's why. I struggle to word this because it is one of those things that if you say it with your emotions you can't take it back. I struggle to word this without using my pregnancy hormones because they are a real thing. 

I am a generally happy human. I dream of positivity and I surround myself with people and items that make me truly happy. For instance, some will say my relationship with my mom is weird but she makes me so happy. I surround myself with so much work because I am serving others every single day and that's what brings me joy. I enjoy healing powers and stay tuned into my culture because that's where I found myself last year. And lastly, I tie myself to Kyle because he is everything. However, today I am feeling dispirited. I am a quick forgiver because I believe people are good. I am shallow for that but I genuinely think all people are good they just "messed up". I don't do well with disappointments and people letting me down and I rip myself apart when I disappoint another. I shell out second chances like they're free and I am always the one ending on my ass and looking stupid. 

I used to love alcohol. I loved parties and I loved socializing and unfortunately that's how I met my Kyle. The year that Bub passed I entered a slum of endless booze and suddenly it wasn't for the parties and social events. It was my escape. Kyle and I drank together a lot and for a while all our relationship was standing on were the empty bottles. His for his own reasons and mine for mine. Tying into the year that I changed my life for the better, taking all of the negative thoughts and turning my world into peace. I still drank more than I should but I started realistically looking at my future with Kyle and after breaking up twice we finally began to live life for each other and not for the horrible things others did to us. We were finally real. 

Overtime I released the bottles and came to a point where the smell got to me. I couldn't be around people who drank. The drunk walks weren't funny to watch and the way they slur wasn't admiring. I let everyone do their thing and I would go home, or I would schedule myself to work so I didn't have to be there. I was able to work through the reasons that made me want to drink myself asleep with an intense amount of work. I had to learn how to find my way to what made me most happy without using a bottle. I started going to work with a purpose because not thinking about myself for five hours each day was unexpectedly what I really needed. I do a lot of things that helps me stay sober and closer to who I know I am.

The catch is that just because you have found your sober vice in life doesn't mean everyone else has. The things that help you stay where you need to be balanced aren't the things that helps other people. Telling someone "just stop drinking. Be in this with me together" isn't going to do anything until they find what it is they're missing. It's the sad truth and the more you push for the way you want your lives to go the more it won't be that way. To be told you make someone want to drink is the most soul crushing thing you'll ever know. To be told you are part of that problem and not solution is extremely discouraging. Was your life a lie? Did I sweep so much under the rug when I got sober I forgot how to pick someone else up and help them? 

I know the next chapter of my life is the start of my journey as a mother. I can think that I have found answers to many of life's mysteries and maybe that's true. But truth be told, we as mothers don't know shit, we learn as we go. You teach your children to not bully others, you teach them to give back to the community and be someone they are proud of at the end of the day and that's all we can do. Leila will come face to face with a bottle of booze sometime in her life and that thought scares the Hell out of me. I can give her all the facts but she has to learn for herself. Thankfully a "you'll learn" is part of my personality trait but it still doesn't make it less frightening and I hope she is never told she drives someone to drink.

I have a lot to learn and still more to grow. I hope the people who I have ever made feel that they were immeasurable to me know that was not my intent. I am a firm believer in what I believe in and sometimes I make sure everyone knows even when they don't want to. I realize that aids in the ones I drive to do things they normally wouldn't if I just sat down. I was able to work through my problems without anyone over my head telling me how to do them and respectfully they have that right too. I am sorry for the way I have made you feel in the past and even today, it's a weakness I am working through. I decided that I am not going to waste my time getting people on my level who aren't ready. I don't like to be pushed either and maybe going it alone for a while is going to be exactly what I need.

Thursday, August 2, 2018

One Year Later.

I feel so caught up in my baby drama that I haven't been taking care of myself. Funny how at the most important time of this particular year I wake up thinking "crap". July, August and September mark one year anniversaries. My grandma passed in July just two days before I flew to Australia. I missed her funeral but I will never forget the goodbye I was brave enough to have. I remember walking to the door and almost going home. A lot of people in my life have died and in some ways it makes me numb to know someone I love is dying. I felt different with my grandma and the whole time I was extremely uncomfortable but after I left I felt a wave of secure emotions and it was okay to mourn. The next morning she passed on.

I left to Australia and had the time of my life. Came back home the first week of August and things were starting to simmer. I was getting back into my work groove and my family was doing great. My 7 month old niece Zayley passed away after I received a phone call from my sister Beth. I was towards the last two hours of my grave shift and was preparing meds for my clients. She called to say that Z had been rushed to the hospital and wasn't sure if she was going to make it. In that moment I remember a panic feeling and the urge to run. I think I realized in that moment I live my life on survival mode. I called for coverage and bolted out the front door. I drove home without crying I just wanted to go home. The second I walked through our bedroom door and Kyle lifted up his head I just bawled. I don't remember if I was able to tell him anything I just remember almost screaming. I cried really hard for about 20 minutes and had even woken up Jodi in a panic. After crying I remember just sitting in silence unable to speak nor move. My sister Carrie called to let me know Zayley didn't survive and asked if I was going to come down and together we cried again. I received many other phone calls from each member of my family over the course of about two hours to make sure we were all okay. I had said I wasn't sure if I would make it down because on grave brain and news like this I shouldn't have been driving to Ogden. Something inside me told me I should for my brothers sake but something else urged me to stay home. I ended up finally falling asleep hours later and when I woke up there was about a two second time where I thought it didn't happen followed by a wave of 'oh yes it did'. My body felt extremely heavy and I couldn't move. I couldn't look at anyone and I didn't speak.

Today I am remembering these feelings in particular following my sisters Facebook post about my nephew last night. My family struggled with babies for what felt like forever. My sisters feared to touch another baby because all they saw were their own memories of holding Z one last time. Death affects everyone. And unfortunately something I never considered was how much death affects children. Zayley's sister Zoey is three. She'll be 4 in a few weeks and this has affected her. She has her own traumatic memories of what happened the morning my brother found his daughter. She remembers the screaming, the police and she remembers her sister didn't come home. She recently started opening up about it and panics everywhere my brother or mom take her in fear she will die there. My sweetest nephew thinks that my little babe is Zayley and he is SO excited for my baby shower on Saturday because he thinks Z is going to be there. All of my presents from everyone showed up at his house and he made sure Carrie was delicate with the boxes because he didn't want Zayley to not have any decorations for her room.

I use rainbows as a way of release. As a promise of tomorrow. I use rainbows because they only come after something tragic happens. After filth has been washed away it's a promise that your path will become clearer. Losing my niece was so hard and I can think I am past all of the anguish but that is just a lie. I have come to realize that my way of grieving is okay. I know we go through steps differently and I admittedly know why I never went down to say goodbye to Z. I watch my siblings replay that hospital room, replay their tears. I know 100% I couldn't come back from that. I still have moments where I'm back in the hospital saying goodbye to Bubba and it feels fresh and not that three years have passed. I remember how I felt driving to my sisters that night and sinking to the floor with my brother in law Cam. I couldn't do it again and I know it's okay that I couldn't.

I survived July and have survived two days of August. Next month I have one more hurtle to climb as I reach the year mark for my friend Jen. Anniversaries are always hard and so are birthdays. But I can't help but remember that through this mess I buried for a year I received my rainbow and she's coming right in the middle of all of this. Three anniversaries all together is really tough. But, it's a blessing that I can look forward to her because she was sent to me on purpose and that's a reason to celebrate life. I pray for my family daily and forget to pray for myself. I can't help but think that this tiny heavenly flower is going to bring more than just healing. I feel so strongly about her name!

Sunday, July 29, 2018

the Strength of a Thousand Prayers

Most times I blog I cry. But, I am on cloud nine, my family is on cloud nine and I have clarity. There are two quotes I LOVE, "after every storm there is a rainbow of hope" and "no rainbow comes without a storm". The beautiful yet frustrating thing about rainbows is that they really don't exist without a storm. A storm being death or a high risk pregnancy. I have situational depression and July has been one of my hardest months this year. I sucked it up at work and shut down quite a few times. I avoided family and friends and somedays even Kyle. I'm not the only one going through this trial and I understand everyone is struggling but I am the one carrying her. I am the one who keeps her alive. It is my mood, my love and my strength that she will inherit and do you know how hard it is to stay above the storm each day not knowing?

I cleansed my crystals and I accepted everyone's prayers for us. Message after message from friends and family I don't talk to often. People I didn't even know were still connected through social media. All letting me know they loved me and were sending their support through whatever higher power they believed in. When you are in the deepest of your own despair you take the prayers, you say thanks and you carry on. It isn't until the prayers and thoughts are answered that you really understand what the power was meant for.

June 26th I saw a cardiologist for babe and the results were more than devastating. The hole between her two chambers was small but it was a hole none the less. "Just one more thing" I thought and later that night when I called Kyle that was exactly what he said. It's hard for techs to measure this girl and I have a feeling I'm going to spend the rest of my life chasing her down. She's ALWAYS MOVING!! The cardiologist tried for about an hour to inspect her heart because he felt there was coarctation of the aorta which he had described as "thinning". But, because my child can't hold still he wasn't positive it was that and we would have to come back nearly a month later to ensure what he saw is in fact what he saw.

I woke up Friday morning and felt good. I felt really good. I said it was going to be a good day and I did that for me. It was payday, I paid my rent early and I didn't even think about the appointment but I knew if I was already happy I would be fine. I drove down and became anxious. I started sweating and I could feel my brain fuzz over. My sister has a heart defect and came to this appointment because she felt that what she has was hereditary and then of course my mom was there. I will warn you all, if you ever have to go do an echo just know that your appointment is super awkward and the techs don't say much to you. They are friendly but they don't say "okay now were looking at this chamber" or "oh look she's waving at you". They whisper and it makes you feel like oh my God somethings wrong...is something wrong? My mom said "isn't this cool?" and my sister goes "it would be a lot cooler if we knew what was going on." HA HA HA.

The doctor who saw us this time was different from the cardiologist I saw before and he was very friendly. When he finished he casually said "the hole has shrunk so small that I don't see the need for surgery. And I briefly got a great view of the problem we weren't sure about but there is nothing wrong with it". We were silent and he said "so that's good news!" So all of a sudden I realized life is full of those 'rainbows' I keep forgetting to remember I'll see when it's supposed to make sense. Other than the surgery to rearrange her organs and repair the hernia she won't need further surgeries.
*insert tears*

I am beyond grateful for my life. It has been far from perfect and I have known the taste of Hell. I also know the taste of Heaven because I was surrounded by exactly who I needed to be. All of the prayers, all of the ones who went out of their way to send a quick message just to say they were thinking of us carried me, Kyle and our baby so far. I can't speak for Kyle but I feel the love and support, thank you!

Next weekend is my first baby shower and then I can FINALLY start using her bloody name! I kept almost typing it ha ha.

Monday, July 2, 2018

Why me or try me.

Remember that one time a few years ago when I woke up and decided I'd take control of my life, face every demon and win? I find myself about two years later and I seem to have lost that momentum. I constantly find myself asking "why me" nearly everyday. Recently, I have asked "why her" and I realize today I am starting a bad habit for my child. No matter your opinions or what you believe, I believe 1000% that she can feel what I feel. She absorbs my energy and if I am currently feeling "why me" and anxiety filled so will she.

Congenital Diaphragmatic Hernia is where your diaphragm doesn't close, thus leaving a hole welcoming organs into your chest area. That is what our child has. That news has brought a lot of tears and from there quite literally things have felt as though it has just gone downhill. After being poked almost too many times I have Gestational Diabetes. Luckily, I feel somewhat of an expert with diabetes as a few I am close to have both type 1 and 2. Unfortunately, Gestational Diabetes is a little different from that. I hung up the phone and of course bawled. Pregnancy sure has a way of making you feel helpless with your emotions. I fell into a depressive state where I was saying to myself, "what else", which obviously I have quickly learned not to ask.

I ventured down to Primary Children's in Salt Lake with my mom last week to my fetal echo appointment and I was feeling extremely flustered. I had to fill out an information sheet and they asked questions that I felt they already knew as I had answered these questions before on the phone. They are also on my medical chart. -They literally asked if I was pregnant. "That's why I'm here" was my answer. I was called back and handed my sheet to the nurse and apologized as she read down the sheet for my sarcastic answers. Her facial expression changed and all I could say was "pretty sure you already have this information so I'm sorry if it's too sarcastic. I can redo it." The nurse was nice and  just moved on. The highlight of the appointment was seeing my child. Seeing her heart beating, seeing her moving and seeing the sweet smile on my moms face as she kept saying "you always did that too". The appointment was quiet and I desperately wanted the techs from Logan back. They didn't explain things, they whispered amongst themselves and I just laid there like "now what". A towel was tossed onto me and I was asked to rub the sticky jelly off my belly and come into the conference room when finished. We got into the conference room and the doctor began explaining his findings. I realized quickly that was why they didn't explain things in the room because they wanted to formally talk to us after but telling me that was their plan would have been cool. A condition called Ventricular Septal Defect was found. Essentially a hole in her heart. Immediately every word after that didn't make it through. All I could think of was that's what else. My eyes kept welling and I shook my head vigorously "yes" as he explained things but couldn't take anything else in. "It's repairable" was said many times. WHY!? Literally, why? I left the appointment in tears. I sat in the bathroom for a while trying to get myself together. I envy the women who get to enjoy their pregnancy. I feel angry.

The next day I had my first MRI and thought I wasn't going to fit all the way in there. Good thing I'm not claustrophobic! I felt snug enough I actually almost fell asleep. If it wasn't for the noisy machine I probably would have. We later met surgeons and NICU nurses and they were so friendly. They loaded us all with information and then asked if we had any questions. So glad I took my mom because she had several. She's never been afraid to speak up. Any questions that were asked were valued and explained in as much detail as possible. There was one NICU nurse that elaborated, for me anyway, what the doctors were saying in a language we understood. I think she's done this before. I felt fine and only thought about Kyle. I got home after a quiet ride in the car and just sat on the couch feeling so overwhelmed. The depressive state kept coming and I just laid in bed. I ignored nearly all the messages I had received that night and didn't call my sister even though I told her I would.

I thought, you got the wrong girl for this. I didn't want to be pregnant anymore. I was sure I couldn't handle it and I am still struggling. It comes in waves and like I said, It's all about my positive energy. The following morning I messaged my bestie Jae and desperately asked for something to make me calm. Anything. She's into crystals and meditation and will be so perfect as baby's godmother. She took me to a health store and we walked around. I wasn't all in and had no idea what these things do if they worked. I was desperate to hold on to any hope. She did some things that I thought was really odd at first until it panned out and I will say, my child never kicked harder than when I held onto the crystals that I took home. They were exactly what I needed. She's going to be a Libra so I grabbed a baggie of mixed crystals I will give to her when she is ready. You can roll your eyes and say what you want about this but whatever helps you see the positive side of every situation I say do it.

Her hospital stay is projected at least 2 months pending surgeries etc. There may be more. I can't believe the outpour of love and support these last few days. From people I would never expect. God, this is so hard.

Things are always supposed to suck. How can you know Heaven if you don't know what Hell feels like? I need to understand that feeling my emotions is okay. Having a bad moment or even a bad day is okay. Needing a day where no one calls me is okay. But I have to utilize the strength I worked hard to have these last few years to be positive. To be able to teach my daughter that although life quite literally stomps you, you always have the option to be the one who gets up. My greatest trial is maintaining my positivity and thankfulness that I woke up today and that she is still alive. Hers will be learning that her strength outweighed every negative outcome. Someone with so many "problems" hasn't slowed down. Heartbeat is amazing, she says hi to me with some jabs. She is queen and why I feel so strongly the name we chose. Second hint - middle name starts with an R and is named after the first most important woman in my world. <3