Redefining The Words “Psych Ward”

Redefining The Words “Psych Ward”

***TRIGGER WARNING (PTSD, OCD, SI) ***

I was brought down to the unit from the ER. I can only describe the feeling I had like a ‘walk of shame’. I felt the stares glued to the back of my head as I made my way to the elevator. I was wearing the infamous terracotta colored scrubs with the matching bright yellow hospital socks. The hardest part of it all was making eye contact with my coworkers as I made my way from the triage room to the elevators. I was accompanied by a crisis nurse and a security guard. I wanted to make excuses for myself so that they wouldn’t take pity on me. Regardless of how I felt, I knew I needed the help, so I swallowed my pride and let the professionals take over.

DAY 1- I was stripped of my personal items. No phone, lip balm, wallet, or even drawstrings allowed. My bed was a wooden box with a small mattress dressed with thin hospital linen. There was a desk with rounded edges and a what it looked like a robust plastic chair with no legs. There was a window but it was sealed shut. I felt ashamed of being there. Was I making it all up for attention? Deep down I knew I wasn’t but the thought was still there. I met with the psychiatrist that morning and was officially diagnosed with PTSD, ODC, and severe sleep deprivation. I was given medication that morning to help me sleep and to battle my PTSD. For once since Lilly’s birth my mind was quiet. I had lunch and fell asleep.

DAY 2- I had no idea that psych wards had a scheduled program or any type of structure whatsoever. In my uneducated mind, I was convinced crazy people just let their minds wander in a zombie-like manner, and occasionally lashed out in a manic state. I was so very wrong about it all.  I had already missed the morning vital signs, the check in group, breakfast, the free hour, the counseling/meditation group, and the creative time. I slept for nearly 24 hours.

I woke up to natural light and the sound of the nurse coming in to check on me as it was already almost night time. I was introduced to the other patients there and the rest  of the staff for the day. They were so heartwarming and welcoming. I attended the night time check in group, had dinner, my meds, a shower, and fell back asleep for the night.  I didn’t dream once.

DAY 3- I got up with a little pep in my step, it was a refreshing change. I got ready for the day, attended all my groups and even had a chance to play the piano for some of the patients ( I have no idea how to play but i can figure out simple chords). We had a movie night and I got to paint and meditate. Before the end of the day I met with my treatment team and decided that I was fit to go back home the following day.

DAY 4- It was dishcarge day and I was so excited to see Lilly and Spencer. At the same time, I was a little sad to leave such a healing place, knowing I would have to go back to the regular day to day tasks. It felt terrifying. As the time approached, I got more and more anxious. Once I was able to exit the building and I saw my family, all the worries melted away. She had grown so much in four days! Her little ankles had the smallest chub and her cheeks had grown to the size of two juicy peaches. My husband’s face was that of relief and concern for me. I am thankful for the amazing man I picked to be my partner. His support and love have always been unconditional.

I can’t say that I don’t get excited when someone makes a comment on the topic of mental health institutions, especially after my experience. It has become a chance to educate people, share my truth, break the stigma that comes from talking about seeking mental health help, and  also a chance to change the actual image of what people imagine when they hear the words psych ward. This very lenghty story might not ever reach the people that have the ability to change the culture around this topic, but I hope it helps someone in need to make the decision to seek help.

NICU Week 11-14 The Last Mile

NICU Week 11-14 The Last Mile

To be honest with all of you, the last four weeks of this journey were long and very short at the same time. It felt like our world went on for eternities but somehow we would find ourselves near the end of it time and time again. Like a marathon.

Lilly was growing so fast! She was gaining weight and hitting those regular developmental milestones quite fast. This seem to worry the doctors more than please them. They were noticing that Lilly was beginning to outgrow the NICU but there was something holding her back.

Spencer and I could NOT have seen this coming even if we tried. We had the idea that for some reason the NICU was the place for her to be “fixed”, and we were so wrong. Lilly reminded everyone in her care team that the neonatal intensive care unit could also be just a part of your treatment and not the entire process.

After many tests and therapy sessions, she was diagnosed with dysphagia and would need special care whenever she needed to eat. Technically, dysphagia is the inability to swallow without chocking. This means that her “feeds” had to be thickened in order for her to be able to eat safely. That also meant that breastfeeding was out of the question since breastmilk is so thin; thinner than water.

I was devastated. I always intended to breastfeed, especially since I was lucky enought to be blessed with an amazing milk supply. Pumping became my new religion.

Lilly’s feeding tube was also a topic for conversation and brainstorming on the provider’s part. They knew that she would have to go home with suplemental feeding and that the NICU was not very fond of sending babies home with anything but a “G Tube”, which is a surgically placed tube straight to the belly. Now, there are lots of other ideas that preceded the long feared G Tube, but the NICU providers were not very hopeful.

With the help of our great Speech team, who advocated perfectly for our little one, the neonatologists came to the conclusion that she was a good candidate to be discharged with an NG tube as long as she was seen outpatient by the same speech pathologists. Luckly, my husband and I have enough experience with medical matters and we felt so very comfortable taking care of her at home.

Lilly was discharged Nov 5th with a feeding tube that she had to use for only two weeks after she got home. With the help of her amazing speech team, her GI team, and the sweat and tears of her parents, she no longer needed her feeding tube and she graduated from therapy!!!!

NICU/ICN Week 9

NICU/ICN Week 9

This week we found out that our daughter had a low red blood cell count and needed some iron to help. This was kind of good news… here is what I mean by that.

Lilly has been very sleepy and lethargic. This makes it hard for her to actually work on feedings and learning how to eat like a newborn. In order for her to eat, she has to be awake/alert. Spencer and I were worried and communicated this to her doctors during rounds last week.

The doctors told us that it was very normal for her to be this sleepy given she was a preemie and “we are asking so much of them already” as the doctor put it. My motherly instinct told me that something else was happening and that we should ask again with more persistance.

The doctors decided to do a full blood panel and they found out that she had a low count which I believe came from me. I am anemic. Regardless, now we know what the problem is and how to fix it! Which brings me to our next achievement.

2 months old!

Lilly has been waking up a little bit more, enough to work on breastfeeding and bottle feeding! On Tuesday she tried breastfeeding and she was latched the entire time and she got milk! So she didn’t have to get any milk through her tube!

Today when Spencer and I arrived at her 11 am care, we found the nurse feeding her through the bottle and she was almost done! Spencer took over and Lilly and papi worked together and she finished her feed! her feeding has become a bit more mature and she is pacing herself. No events either!

We are making very small progress, but it is progress indeed. Lilly also has been gaining weight and she has grown in size! 6lbs 12.5oz of deliciousness! She almost looks like a newborn now and we are very much in love!!

To other parents with babies in the NICU: This week we also brought in some items that we had at home ready for her. A pillow to prevent flat head syndrome, her personal bibs, her boppy for nursing, and her receiving blankets to act as linens for her hospital crib.  **YOU CAN MAKE THE NICU YOUR HOME AWAY FROM HOME ** This has helped us feel like home is wherever she is and not just a stationary place that seems so distant and unachieveable.

YOU GOT THIS! Its not easy, but then again, nothing that is worthwhile is easy to build or find.

Our view from Lilly’s room.
Transitioning to the ICN-Week 8

Transitioning to the ICN-Week 8

Everyday before leaving for the night, Spencer and I would sing this song to Lilly…

” You are our sunshine, our only sunshine.

You make us happy, when skies are gray.

You’ll never know Lilly, how much we love you,

Please don’t take our sunshine away “

Then we would give her a kiss and head out with a heavy heart to our hotel room. At first this was sad and frustrating, but then it became comforting. We had a routine, some sort of structure. well… Lilly had different plans.

The nurse taking care of her a couple of days ago, called us to let us know that Lilly was considered stable enough to be transitioned over to the Intermediate Care Nursery. The what?! Believe me you when I tell you that I didn’t know either. I thought the NICU was the only thing this hospital offered. I am happy I was wrong.

Spencer and I rushed over in the morning to see our little bug and we got a tour of the unit where Lilly was going to be at. “This is the unit where we have the healthiest babies that are closer to going home” said our nurse. We were so very excited to hear those words. We helped the nurse pack the room and we brought her over to her new little corner!

Leaving her room in the NICU
Her new spot at the ICN

This week she gained weight and hit the 6lbs mark! She also got longer at 46 cm and her long beautiful eyelashes are coming in. She looks like a doll. At the same time, Lilly is struggling with learning how to eat without any sort of events ( meaning she chokes on her milk and she desats and has bradycardia), which makes it a little bit hard for her to go home.

Sometimes it can be hurtful and discouraging when people ask us the dreaded questions “When is she coming home? is she home already? do you guys know when she will be coming home yet?”. As much as you think you want her to go home, believe us that we do even more. Our hearts ache when we walk in and see her there in her hospital crib just working so hard on the simplest of things, knowing full well that it might be a while before we get to snuggle her up in the comfort of our own home.

We are very thankful though, for everyone’s well wishes and the love and support we see everyday from people that have never even met our little one, but love us enough to love her too. We are beyond blessed for having you in our lives.

Wonnacott Photography
NICU Week 7

NICU Week 7

This week was full of changes as well as the previous one. We were able to see Lilly’s development increase as she opens her eyes a little bit more and she starts cuing whenever its time to eat.

This week was also birthday week for this mom right here! Celebrating at the NICU was not at all my plan for this year, but then again, 2020 has had a mind of it’s own.

I got to spend the whole day with my baby girl and cuddle her up as much as I could! In the morning we had an amazing breastfeeding session which made me so happy! It was a wonderful gift from Lilly. Then my hubby surprised me with a visit from one of my best friends Samri! She flew all the way from Idaho to spend a couple of hours with me. She is an amazing photographer and we did an surprise photo shoot capturing that day. Spencer then took me to a nice steak dinner that evening and we had so much fun!

Lilly was introduced to her first bottle and she hated it at first, then tolerated it after. She is definitely a breastfeeding baby. We are still using the newborn diapers and working on a developing diaper rash. After speaking to her doctor and letting them know our concerns about her grunting and bearing down, her feeds now are breast milk only and we have left the fortification behind! This means that she is no longer super fussy and she can digest what she is eating a little bit better.

Next week we will be focusing on having steady vital signs and feeding. The nurses and pretty much anyone you meet at the NICU will tell you that learning to eat is the hardest part for any baby and their parents. Babies will be able to breathe, and regulate their temperature with a little help, but eating is something they have to figure out themselves. This means that they might pick it up quick or take a long while.

During this waiting period, the parents lose their minds. There is nothing we can do besides being present and encouraging your little one. Everything else is up to them, and once they eat without a problem, they will be able to go home.

NICU Week 6

NICU Week 6

This past week started so very slow! Every minute in her hospital room seemed to stretch an hour long. She began with her CPAP going down and she started to be become more alert! Her eyes opened here and there, and she would react more to different sounds throughout the room.

Towards the end of this week, Lilly developed very fast. She gained weight and maintained her feeds through her OG tube (a tube that goes to her tummy and enters through her mouth). She is weighing 5lbs 7oz and she is now 17 in tall! She got rid of her CPAP and she graduated to regualr NEWBORN diapers!!

No more canula!

Here is a secret truth I learned as a NICU mom that will make you feel more confident and motherly as time passes by:

YOU ARE YOUR CHILD’S ADVOCATE. YOU ARE MOM. YOU ARE A SUPER HERO. YOU ARE IMPORTANT AND YOUR VOICE MATTERS!

Towards the end of this week, many wonderful changes happened to both Lilly and me, and the truth I just told you seemed very hard to believe. Here’s why…

Lilly started to breathe more on her own than without the help of any machine, so the doctor decided to take her off of her CPAP and she graduated to a canula (the plastic oxygen prongs that go into your nose) with room air. Those were wonderful news, right??? Well, my husband and I didn’t get to find out until we walked into the room and saw it ourselves.

You see, the NICU is a type of Intersive Care Unit and they have so many sick kiddos that they only really call parents when there is something wrong. As they like to put it “If I don’t call you, thats is a good thing”. The trudht of the matter is that MOST parents would like to know when something good is going to happen too! Secially when it is such a big step for our little one. We were a little upset.  This was not the first time we had come to her room to find out something big had happened and no one told us or mentioned it.

Being in the NICU sometimes makes you feel as if your baby wasn’t yours and you have no right to touch, speak, or even feel motherly towards YOUR baby. So if you are a parent that has ever felt this way, please go back and read the captioned sentence above over and over and over.

No matter what, we are so very proud of our baby girl.

Today she graduated out of her canula and her OG tube. No more barriers to brestfeed! She has an NG tube ( goes in through her nose and into her tummy) for feeds when she can’t take the breast. She passed her hearing test and she can finally get a good hold of her binky! Some of these achevements happened because she is a warrior, and some happened because her mami and papi spoke up for her when she needed it regardles of how insignificant and disconnected they felt.

Breastfeeding for the first time
NICU Week 4 & 5

NICU Week 4 & 5

These two weeks have merged into a blob in my head. Sometimes the emotional side of things take over and make this whole experience appear as if it was a dream. Luckly I have this blog where I can write it all down.

Many wonderful things have happened since the last post. You would not believe how much my family and I have grown as we spend our time and efforts with our Lilly pad. Love. There is an amazing amount of love that has melted our worries away, and I could not be more thankful.

Week 4 came by and swept us off of our feet without warning.  My family from Hawai’i stayed with us and made our home full and whole. They cleaned, coooked, laughed and loved us while my husband and I restlessly tried to do everything from paperwork to budgeting and all things in between that come from any hospital stay. To them we are forver in debt. We love you so much you guys! My momma and sister in law also came to our rescue and shared with us their bright auras and their support. We are lucky to have you nearby.

Last day at the park before the flew back to Hawai’i

Lilly grew so much and gained enough weight to fill in her preemie clothes! The fact that we could now dress her and hold her more often made us realize that she IS REAL and she is OURS to love. She had her first bath during this week. This was a very tough moment for us as we were not able to be there with her. The guilt definitely creeped up on me and brought me down emotionally. Despite the sadness, both my hubby and I understood that this only meant that she was strong enought to come off the CPAP for a bath! what an achievement!

Lilly’s first spa day

Week 5 rolled by and my mom, dad, and sister had to go back to their beautiful island. I could say that I am okay with them having to go back, but I would be lying. I am still having a hard time not having them by my side. Video chatting with them has kept me sane.

Lilly has been going back and forth in her CPAP level and feeding types. She si now at +6 on her CPAP and we are hoping that she can progressively go lower until it comes off. She has graduated now to a gravity feed where she can take in breastmilk at her own pace. She is still figuring out how to do that, but most times she does just fine!

I can’t stress enough how emotionally challenging it is being a parent in the NICU. Luckily for us, we have a very beautiful baby girl that makes it all worth it.

NICU Week 3

NICU Week 3

The miracle week! Little did we know that we were going to be able to see so many advancements in such a little amount of time. We always said that we were not going to be too hopeful just in case things didn’t turn out good at all. This time, hope and excitement won the battle.

Every week for Lilly begins on Thursdays since she was born that day. At the beginning of this week, my husband and I were at home. It was around 5 A.M. and I had just pumped while my hubby was waking up for work, and we decided to call our little one at the NICU. Being far away from her can be emotionally draining, and calling to get some sort of report on how she did during the night gives us peace of mind and closure.

This call was a very special one. The nurse told us that our little girl had been regulating her temperature very well and the doctor deemed her ready to transition from the incubator to a hospital crib. My ears could not believe what I heard and my heart nearly exploded from how full it felt. The good news did not stop there though…

She was ready to wear regular clothes! Oh my! how much did I wish I could dress up my little cutie like a doll. My wishes are probably so silly to the regular mom that brings her baby home day one, but that call reminded me that wishes do come true.

My hubby and I made the effort to go and see her after he clocked out of work, and we spent the evening with her. We got to dress her for the first time, change her diaper, and provide the regualr care that she gets every three hours. We then got to hold her like a real baby. I know this must sound like I am crazy, but we had never had the chance to do so because she would get too cold.

My eyes were filled with tears and my body felt complete as I held my not so little one in my arms; She looked so much older than the last time I saw her.

Lilly has grown and surprised everyone that accidentally falls into her fan group, which is just about everyone. Specially her grandparents on my side of the family. My mother has been helping us since the day I went into labor, and my dad and sister joined us this week so as to help us during this recovery process. They helped us finish the nursery and set up a plan to easily transition into parenthood for when Lilly gets to come home. We are BLESSED indeed.

NICU Week 2

NICU Week 2

This was been a very rewarding week!

Our little Lilly did have some setbacks. She is still developing her little lungs and learning to breathe. Her breaths used to be so very fast, and they are finally going down and normalizing.

Besides her breathing, she has started to gain some weight and she is tolerating her feed a little more than before. We are hoping that she can regulate her body temperature as well which would mean her transitioning to a crib instead of being in the incubator.

She has developed such an interesting personality. Like any other baby, she shows signs of being upset when she has a dirty diaper, and has crazy legs when we are trying to change her.

Some of the other firsts that melted our hearts was the time at the end of the week where she started to use a tiny pacifier. My husband and I could not believe how big she looked compared to her first week!

It is still very weird to think that we have a baby. Unlike other parents, we don’t get to be with our baby every single day. After her visits, we go home and rest, but we go home without her. It seems like we are just borrowing the idea of being parents instead of actually being mom and dad.

Although I know that we are indeed parents to a perfect little angel, it is hard to shake the feeling of not belonging to that group. The group that gets to learn to become parents on the fly and by survival. The ones that connect to their baby right away. I hope that other NICU parents know that I feel it too. I am with you on this, and I don’t think I can fix the pain, but I can share it.